Review of meetings of the Southern California RLS Support Group.


rlspix.gif (34282 bytes)


Meeting # 1, Februray 25, 1996
A MOST SUCCESSFUL MEETING

There were tears and laughter as over 35 people gathered for the new Southern California RLS Support Group February 25, 1996 on a nice Sunday afternoon at the Presbyterian Intercommunity Hospital in Whittier. They shared the misery and frustration that they have suffered from RLS, and gave each other helpful hints of activities and medications that have helped them, (sometimes). Some have tried them all and have been desperate enough at times, to consider ending their lives. This is a serious condition with indescribable sensations that may become so intolerable that we have to get up and walk whenever we sit down to relax or lie down to sleep, sometimes all day and all night long. We all agreed that different remedies work for each of us, and that what works one time may not work the next. The group was very enthusiastic about meeting again on May 5, 2:00-4:30, at Presbyterian Intercommunity Hospital, in the Whittier Room.

Many said they wished their doctors could have been there to hear the discussion. We are most grateful to Dr. Mark Buchfuhrer and SomnoMedix for their encouragement and support.


MEETING #2, May 5, 1996

               SO. CAL. R.L.S. SUPPORT GROUP
 
                    GOING STRONG
 
                                   and GROWING
 
        Almost FIFTY people attended the second meeting of our Southern
        California RLS Support Group on May 5,1996, at the Presbyterian
        Intercommunity Hospital in Whittier.  Another 23 have called to be
        put on the mailing list, making a total of 72 members in all.
 
        They gathered to share their RLS progress since the last meeting
        and to hear Dr. Michael Allen, a Chiropractic Neurologist from
        Laguna Hills, speak on his experiences with RLS patients.
        Although the cause and cure are still unknown, he approached the
        treatment of this disorder from both a structural and medical
        point of view.
 
        There was a Question and Answer period, a refreshment break, and
        time for more horror stories from patients whose daily lives are
        devastated due to this unbearable condition.  There were also
        success stories about certain kinds of medication and activities.
 
        The next meeting will be held on Sunday Afternoon , August 4th at
        1:30 in the Whittier Room of the Presbyterian Intercommunity Hospital,
        at 12401 Washington Blvd.,Whittier. We will have Dr. Mark Buchfuhrer, our
        sponsor, and the sleep disorder specialist from the Gallatin
        Medical Group in Downey, as our resource leader.  Call (310) 699-
        4917 for reservations or more information.
 
 

MEETING # 3. AUG, '96

WHAT A TURNOUT! WHAT A GREAT MEETING!

DR BUCHFUHRER WAS TERRIFIC!

OVER 100 PEOPLE gathered at the Presbyterian Intercommunity Hospital in Whittier to ask questions and seek advice from our sponsor, sleep specialist Dr. Mark Buchfuhrer.
It was the third meeting of the Southern California RLS Support Group and the best by far! Dr. Buchfuhrer answered well over 100 questions, giving each person a chance to tell their symptoms and what they have done to relieve them. The sharing and concern for each other was most gratifying.


MEETING #4, NOV, 96

NOVEMBER 3rd RLS MEETING - by Dr. Kenneth S. Wayne (speaker at the meeting)

A large group of men and women of diverse ages presented at Presbyterian Intercommunity hospital for the November 3rd meeting for the Southern California RLS Support Group. A format of comment, question and answer followed introductory remarks and throughout the afternoon a lively exchange prevailed.

In addition to discussing considerations of history, differential diagnosis, treatment and prognosis, there was exploration of possible nonconventional therapies ranging from vitamin and mineral supplementation to physical therapy measures and cutaneous stimulation by means of topical irritants or electroshock.

Contributory factors to exacerbation of symptoms were reviewed including conventional concepts such as caffeine use, neuroleptics, disease and deficiency states and less widely accepted notions as the effects of food additives, environmental pollutants, etc.

The afternoon discussion was stimulating and enjoyable for all present...despite 3+ hours of active dialogue in the conference room, no one became restless!!!

Here is the write-up of our last meeting from a new member, Terry Brown.

I attended my first Southern California RLS meeting on Nov. 3rd. My initial reaction was, "I can't believe I'm in a room full of people that all have the same leg problems that I have!" Three other people in my family have or had what we call the "fidgets", but I had never met anyone else who had it until the meeting.

It was interesting to hear everyone describe their experiences with RLS. There is such variety in which part of the leg it affects, which leg (or both), time of day when it happens, and the degree of discomfort. Much of the discussion, as well as the doctor's talk, centered on drug therapy. Fortunately, mine has not been so bad as to drive me to this, since it sounds like it's very hit-or-miss as to which drug will help, and whether it will continue to help as time goes by.

I think it's helpful just to talk to other people who know what it's like to have "jumpy legs". Not to mention our long-suffering spouses who can commiserate with each other! I'll be back at the February meeting to see what's new.


MEETING # 5, February 2, 1997.

WOW! It could only be called a movable feast - not just for the variety of goodies set out to eat - but for the number of limbs in motion in the same room at the same time! It was like Hines, Hines & Dad meets Sammy Davis Jr.

If you haven't had the opportunity, I do highly recommend that you make time to attend an RLS support group meeting. Information was available in all forms: printed, discussion, and a lecture followed by question and answer sessions with Dr. Mark Buchfuhrer, one of the treasured few who don't think we're all ready for the men in the white coats.

I was not aware of the many variations of this syndrome until, one by one, each of us introduced ourselves and told of the length of time we have endured this "monster under the skin" as well as the form it takes within each of us. Some of us.have put up with RLS since childhood and others for only a few years (Even a few years is way too long). It seems as if we have all tried the same methods to rid ourselves of the nightly symptoms but none of us has found "THE CURE".

I will not attempt to comment on the names or number of drugs available to treat RLS, but rest assured that relief is available to some degree to all of us. I knew that I had been 100% frustrated for a very long time over RLS, but what I didn't realize was that it was most likely also the reason that we tend to fall asleep while driving. Dr. Buchfuhrer said that car accidents were the #1 cause of death in people due to RLS! (I did know that it was dangerous because one night, years ago, while pacing the house in the dark, I cracked my head open on the stairs and needed 4 stitches! - so much for trying to be quiet and not wake up the rest of the family.)

To those of you who have just discovered this web site and to those of you who have been reading it for a while we need you at these meetings. The more stories we hear and the more we can learn from you and then the closer we can come to solving this relentless problem. As usual, just when you think you know everything necessary about a problem, along comes someone else with a new twist.

I hereby nominate ZZ TOP's LEGS and Dire Straits BROTHERS IN ARMS as our official songs! Please join us on May 4th for the next RLS meeting - and bring some cookies.

"Longwinded" Linda McNamara


Meeting # 6

Information on the last Meeting of our RLS Support Group - May 4, 1997.

Written by Lanore Rodenberg

On May 4, I attended my first RLS meeting. It was most reassuring to be among so many people with the same malady. However, I did walk away mildly depressed having learned about the numerous approaches being tried with no sure-fire relief. What seems to work for one person may not work for another - some approaches only work for a short time, then dosages have to be increased or another prescription tried. I cannot help but think there must be a common denominator somewhere (not just heredity). Perhaps a high blood calcium level, or even a certain type of food allergy. Wouldn't it be wonderful if it were something that simple?

Not long after attending the meeting there was a segment on TV in which Amnesty International was trying to intervene on behalf of a thrid world country whose people were being tortured. I found it particularly significant in that the most frequently used form of torture was "sleep deprivation." What does that tell us? RLS is such an insidious disorder - it very quietly gets worse, and worse, and worse. We all know about sleep deprivation and what it has cost us. In a word - you are NEVER functioning at 100%.

The meeting was a real eye-opener. It was good to find out exactly what I'm dealing with and that I'm not alone. I met people with all degrees of RLS, all within a wide age range. We all shared our symptoms and our individualized methods of coping. Interestingly, there were many spouses and other family members, not afflicted with RLS, present. This meeting probably helped them, too, in that they had an opportunity to share what it's like living with someone in "perpetual motion." In terms of information, this meeting was a bonanza for me. I'm reading everything I can get my hands on thanks to the resources made available.

Dr. Wayne spoke to us in very non-technical terms, which I'm grateful of, and shared a wealth of information. I thought it amusing that many in the room were standing up and or walking around throughout the meeting. Only a RLS sufferer could understand and identify with that. About 13 years ago I had to serve on a jury. It lasted a week and I thought I'd go mad from sitting so long. Doubt I could do it today

.


by Kenneth S. Wayne, M.D., speaker at the meeting.

Once again Presbyterian Intercommunity Hospital, Whittier, CA, hosted a meeting of the S.C. RILS Support Group. As the guest speaker, I was gratified by the inordinate turnout of patients and concerned family. A review of the history of the entity now known as Restless Legs Syndrome and that now described as PLMD (Periodic Leg Movement Disorder) commenced. This was followed by a discussion of the differential diagnosis of these conditions, the clinical presentation including signs and symptoms of these processes, and the potential familial and hormonal relationships of the symptoms.

An overview of treatment approaches was undertaken including focused discussion of the approach to medical therapy. Relevant medication groups from which to select or combine treatments were discussed in some detail, including indications, side effects, dose ranges, drug interactions and adverse effects. Alternative therapies including physical measures, acupuncture, heat and cold therapy, exercise programs and adjunctive measures to facilitate sleep/rest were explored with the audience in a lively question and answer session as well as group commentary.

A frank discussion ensued of the frustration engendered in the treatment of this condition for both the patient and the doctor in seeking to weave a pathway through the polypharmacy and the inherent side effects of applied medications vs. the incapacitating and poorly understood symptoms of RLS in an effort to maximize relief of symptoms and minimize adverse drug reactions.

My warm reception by those in attendance was much appreciated. I look forward to working with the group in the future.

 


Meeting # 7

August 3, 1997 Meeting

RLS AUGUST MEETING and SILENT AUCTION

GOOD SHOW

by Barbara Taw

The Presbyterian Intercommunity Hospital in Whittier once again hosted our So.Cal. RLS Support Group meeting, on Aug. 3rd, thanks to the ever-accomodating Jean Thornton. Our Silent Auction fundraiser was conceived and delivered handily by Elaine Quade and Linda McNamara. All of our members and the group at large contributed various and sundry items that ran the gamut from "GREAT" to "almost white elephant". Nearly every item sold, and when the tally was in, according to our treasurer, Tina Nelson, we had cleared enough funds to make a very significant contribution to the RLS Foundation for research. Many thanks to all who participated.

Our guest speaker was Peter Fotinakes M.D. from U.C. Irvine, who spoke of his experiences with RLS, his patients, their medications, and their attendant problems. He was most accomodating and graciously answered many queries. We thoroughly enjoyed having him.

Following our usual Break and refreshments, our tireless and devoted sponsor, Mark Buchfuhrer, M.D., again gave us his follow up on RLS. He generously gives both time and expertise, both on and off "The Web". We are greatly indebted to him.

We would like to thank ALL our donors, especially our anonymous donors, who make our tasks much easier, and who bring our goals closer to fruition.

A good time was had by all! We hope to see you again on Nov 2nd!


Meeting # 8

Summary of our last meeting held on November 2, 1997.

by Barbara Taw

One of California's hottest days of the year proved to be a good omen for our quarterly meeting at Whittier Presbyterian Hospital. Under the leadership of Elizabeth "Bill" Tunison, we held a roundtable discussion which enabled us to relate our symptoms and medications to one another in small discussion groups of ten. Each group then decided upon one relevant question to be addressed by Kenneth Wayne, M.D., our speaker. He comes to us from the Gallatin Medical Group in Downey, where he is in practise with Dr. Mark Buchfuhrer, our sponsor.

Dr. Wayne gave graciously of both his time and expertise regarding new and interesting information on drugs and research now in progress at various medical schools. ( We are finally getting noticed by the medical community for some long overdue research in addition to more than a passing comment regarding RLS in medical schools. But the road ahead is long and fraught with the hazards of bureaucracy and protocol. Hopefully, an RLS practicum can be incorporated in the medical schools so that new medical personnel will be informed in the future. )

Since money and research are inextricably intertwined, our group managed to raise a very significant amount of money from the sale of holiday cards designed by our own artist-in-residence, Nona Maloney, Both she and Laurie Wood worked feverishly to meet the deadline, and they produced a whopper of a best seller. Congratulations to both! Tina Nelson, our very adept treasurer, presented a graphic display of our finances, which improve with each meeting. We are once again in the BLACK.

A mere "Thanks" doesn't begin to cut it to our Board members, who are all focused and passionate in their determined efforts toward our goals. Neither does it cover enough mileage to thank Jean Thornton, who coordinates our meetings at Whittier Presbyterian Hospital. Nor does it cover our endless appreciation to Drs. Buchfuhrer and Wayne, whose expertise brings solace where it is sorely needed. We are a bunch of happy campers!

Watch for announcements about our next meeting in February '98. We are happy to have you aboard.
Cheers!

by the Medical Speaker, Dr. Kenneth S. Wayne

Today was the scheduled meeting of the S.C. RLS Support Group at Presbyterian Intercommunity Hospital in Whittier, CA. I was pleased to be the physician resource person in attendance. We were delighted to have as guests David Wilgarde, M.D. and Mr. George Martindale who were visiting from the Palm Desert/Rancho Mirage area where they contemplate organizing a similar support group.

In my opening comments I briefed the audience on the more widespread recognition RLS is receiving in the medical community as manifested by the recent article in Mayo Clinic Proceedings, 1997; 72:261-264, entitled "Concise Review for Primary Care Physicians: Restless Legs Syndrome". I also informed the group of the newly FDA approved Parkinson's disease medication, Mirapex (pramipexole), and speculated that as a dopamine agonist this may provide another option in the treatment of RLS. Finally I did a brief review of the soporific effects of a high carbohydrate meal by virtue of its induction of higher brain serotonin levels and suggested that for persons with RLS-mediated sleep disturbance and daytime drowsiness this might be an added contributory factor that can be alleviated by dietary reduction of carbohydrate load.

Following these introductory remarks, a compilation of questions from the audience was reviewed and discussed in detail. The following is an assortment of the covered material:

Long term effects of codeine.. is it addictive?
Neurontin...how does it work? Does it help?
Explain Ultram.
Long term effects of Permax on hormone systems.
Any relation of RLS to varicose veins?
Are drug holidays really needed?
Methadone and pain medications and addiction.
Darvocet dosing.
Which is preferable with no symptoms of pain, Darvocet or Halcion?
Is there a preferable first choice medication?
What is the relation between RLS and myoclonus?
What is myoclonus?
Does RLS worsen with age?
What are the effects of antidepressants on RLS?
Can Permax be used as needed or should it be as directed?
Is a medication available with immediate rather than delayed action?
Where does RLS originate?
Compare Sinemet to Permax in the treatment of RLS.
What can be done for daytime RLS?
Is RLS related to fibromyalgia? Is RLS inherited?
Will a TENS unit help RLS?
and finally the toughest question of them all..... How to get MD to work with the patient?!!!

So there it is... another enjoyable and thought-provoking meeting of the S.C. RLS Support Group. We'll be meeting again in February.  If you haven't joined us before... give it a try!!

Kenneth S. Wayne, M.D.


Meeting # 9

Summary of our last meeting held on Februray 1, 1998.

Despite California’s most destructive storms, the sunny morning of 1 February, l998, allowed our usual crew to attend our meeting in addition to many newcomers. Everyone was welcomed to help us celebrate our 2nd Annivesary with a beautiful table replete with colorful balloons, napkins, and a cake decorated in our colors of blue and white that served 100 people. As usual, Jean Thornton of Presbyterian Intercommunity Hospital, saw that our needs were met, and we thank her. After opening remarks by our Founder, Elizabeth “Bill “ Tunison, and Jannell Beech, Tina Nelson, our treasurer, was happy to report that we are once again in the black and holding our own. We then commenced with the roundtable discussions, which proved to be so popular last November. This form of discussion enables everyone to discuss their problems and vent some frustration among their peers. Each table again came up with a collective range of questions for Dr. Buchfuhrer.

Following the break , our Advisory Board presented Dr. Buchfuhrer and “Bill” Tunison with gifts of appreciation. Dr. Buchfuhrer received a beautifully enscribed plaque and “Bill” was presented with a lovely enscribed crystal paperweight for her computer room, where she spends many hours at the “Command Post”. We are all so grateful to “Bill” for founding our group and to Dr. Buchfuhrer for sponsoring us. They both spend many hours putting it all together. We are the only group with a web site that enables anyone in the world to have access to our information. Dr. Buchfuhrer both created and maintains the web to which RLS sufferers have become accustomed to using. We finally have a new and shorter web site entry for easy access; just type in the following: http://come.to/rls ( the old entry is still in working order, so you can use either access.).

New questions were asked about RLS from old and new members alike. In his usual gracious manner, Dr. Buchfuhrer fielded them and stayed until the last member had his or her query answered. He is painfully aware that each patient has different needs and responds to them accordingly.

We were pleased to offer the new 1998 edition of our book , which contains new material , essays by both “Bill” and Dr. Buchfuhrer, new medications , and new letters, all of which have been culled for their significant content and Doctor’s medical replies. They sell for $10.00 at the meetings, $15.00 if mailed.

Many thanks go to Bob Daggs, who films our meetings and makes them available on tapes. Congratulations to the winner of our beautiful gift basket done in a Valentine motif complete with many goodies contained therein. We had a great time and look forward to our 3rd Anniversary next year...and you are all welcome! Join us in May for our next meeting. Details will be contained in the So.Cal. RLS Support Group’s Newsletter due out in April.

barbara taw, ed.

 


Meeting #10

Summary of our last meeting held on May 3, 1998.

The Spring meeting of the SC. RLS Support Group was held this date at the main conference room of Presbyterian Intercommunity Hospital, Whittier, CA, with over one hundred attendees.

As medical discussant, I first clarified for the group the definition of a "drug" as that substance, which when injected into a lab rat, produces a scientific paper! With this introduction we then discussed two new products which may be of value in some individuals with RLS either individually or in combination with older established agents. Ropinirole - marketed as Requip by SK Beecham has been released at recommended doses of .25 to 8 mg three times per day. This is a dopaminergic agent with close similarities to Mirapex (Pramipexole) as well as some features in common with the older dopamine agonists, Parlodel (Bromocriptine) and Permax (Pergolide). As with all potent pharmaceuticals, it is important to begin treatment at low dose, increase very gradually and constantly watch for side effects or drug interactions. Another new product that may be of value in RLS is Tasmar (Tolcapone) which is the prototype drug in a new class, the COMT (catechol-O-methyl-transferase) inhibitors. COMT is an enzyme that metabolizes levodopa to an inactive metabolite. Blocking this enzyme increases the half-life and prolongs the effect of levodopa, which may allow dose lowering of same. The drug acts as a "levodopa booster". Liver function tests need be monitored when on Tasmar to assure patient tolerance.

With the formulary update completed, we then reviewed diverse questions from the participants with extensive discussion of such points as follows:

What is the cause of RLS? Is RLS hereditary? What is the natural history of the condition? Does RLS occur in children? How does it differ from ADHD? How does one initiate medication for RLS and build a program of combination therapy for same? What are the effects on RLS of exercise, magnetic field therapy, prior history of polio, Alka seltzer, shingles, antidepressant medications, physical therapy measures, etc

We talked about the various medications commonly employed in terms of actions, dose ranges, side effects, drug interactions and spent some time discussing the means of effectively communicating with one's doctor to assure that the physician is aware of RLS and the means of treatment thereof. I strongly endorsed the notion of obtaining a copy of the "Restless Legs Syndrome" book published by the Support Group (with Dr. Buchfuhrer's kind assistance) and sharing it with one's physician. The discussion continued with explanation of the various neurotransmitters in the central nervous system and their possible relation to RLS as well as the medications used in treatment. A final area of discourse was regarding the differential diagnosis of RLS and PLMD's and the need to recognize that many diseases and conditions share symptoms in common. With an undiagnosed case consistent with RLS it is first imperative to have a thorough history and physical with appropriately directed laboratory studies to seek other conditions which might be confused with same yet have totally different treatment approaches.

The completion of today's meeting was truly sweet sorrow as this will be my last direct participation with the SCRLS Support Group due to my impending move out-of-state. The last two years have been a time of education and professional growth for me stemming directly from my involvement with this organization, and I appreciate that opportunity.

Kenneth S. Wayne, M.D.

 


The Advisory Board of our group would like to add a few items to Dr. Wayne’s excellent report of our meeting on May 3rd, 1998.

 

Our treasurer’s report indicates that we are still in the black, despite large expenses involved in printing and mailing our new book, which has been very popular. We have Bob Daggs and an anonymous donor to thank for donations that have covered those expenses.

We were treated to a blow-by-blow description of what it was like to be part of the research experiment at NIH by Florence D’Ambroso, who spent endless days donating her time and body to the ongoing study. Wired from head to toe, and minus medication, she valiantly came through what must have been sheer torture, all in the name of science. Our hats are off to her, as we know she has made a significant contribution to our cause of finding a cure. Thanks, Florence.

We were all very saddened to learn of the impending departure of Dr. Kenneth Wayne. He has been so liked and admired by everyone. We will miss his informative lectures as well as his sharp wit and patience with our endless questions. We thought it apropos upon his last meeting to present him with a plaque honoring his contributions not only our group, but to RLS victims everywhere. We wish him and his family the very best of luck in his endeavor to practice medicine at a kinder and gentler pace in Iowa. We will miss him.

barbara taw, editor


Meeting #11

Summary of our last meeting held on August 2, 1998.

Barbara Taw, Editor

We hosted a surprisingly large turnout for a hot day in California, with l8 new people in attendance. We are always very pleased to note that our efforts toward spreading the word about RLS comes back to us in the form of new people, whether they are new to the group meetings in person, or to Dr. Buchfuhrer’s web site. We have had a very big increase in our email from people across the country, as well as receiving many more letters, faxes, and phone calls. This makes our work very rewarding and worth all the time we volunteer. We also welcomed some members of the Westside Fibromyalgia Group in Santa Monica, some of whom have RLS. Upon request, we did a presentation of RLS for them in July. They were very interested in the dynamics of our group and especially pleased to hear Dr. Buchfuhrer’s talk

With our leader, “Bill” Tunison in charge, we conducted our usual roundtable discussions, allowing everyone to have a chance to speak and interact with each other on a smaller scale. Each table then decided on the most pertinent questions they wanted Dr. Buchfuhrer to answer.

We sold the last of our books, that have been in great demand, and apologize to those we had to put off for about a week. However, we are back with a new supply, so if any of you are interested, just click into the Books and Tapes section. Our tapes of Dr. Buchfuhrer’s presentation of RLS will be ready soon for distribution, having been edited and brought up to speed in color, sound and content by Bob Daggs, our Production Manager. Those groups who do not have access to a doctor/sponsor have found the tapes to be extremely valuable. The sale of our books and tapes has enabled us to stay in the black according to our treasurer, Tina Nelson

Our resident artist, Nona Maloney, produced some beautiful all-occasion cards with the theme of “Keeping An Old Art Alive”, which is about writing letters and the history of paper itself. Laurie Wood produced and packaged them, and we were pleased that they were so well received. More will be available at our next meeting in November. We were also informed by Jannell Beech that a cruise for 3, 6, or 9 days could be available for enough interested parties at a very reduced rate. We will have more information on that at a later date.

Following the break, Dr. Buchfuhrer, our Medical Sponsor, explained RLS. With his usual grace, he answered all questions, not only those from each table, but any and all from the audience. We tend to get questions that delve deeply into idiosyncratic symptoms, medications and their dosages, interactions within other medical problems, and even the bizarre. Dr. Buchfuhrer also keeps us advised about new medications and problems occurring with the older ones. Since RLS involves highly individualized treatment, we know how very fortunate we, and the RLS community at large, are to have an RLS expert for our medical sponsor. He really does a great service to our people by attending all of our meetings and maintaining this web site. We are truly indebted to Dr. Buchfuhrer for his time and patience. Our next meeting will be held on November 8th. We will be hosting some of the RLS Foundation Board members visiting from their headquarters in Minnesota. We are looking forward to welcoming them and having them in our midst. We also welcome you to our web site.


Meeting # 12

Summary of our last meeting held on November 8, 1998.

RLS FOUNDATION MEMBER, CATE MURRAY, EXECUTIVE DIRECTOR, ATTENDS OUR MEETING

Barbara Taw, editor

We were very pleased to welcome Cate Friedrich Murray, Executive Director of the RLS Foundation in Rochester, MN, to our midst for this important meeting. Cate gave us the background, functions and goals of the Foundation, emphasizing the importance of research with news that Dr. Bara-Jimenez, our Research Fellow, who did his work under Dr. Hallett at NIH, will complete his second year next July. His findings have indicated that the spine may indeed have an area of it’s own that either causes or contributes to the worsening of RLS and PLMD symptoms. ( We again congratulate our members who offered to be “ lab rats” for a weekend at NIH.) Much more study needs to be done in this area and to that end, the Foundation has announced a competitive grant program with several points of interest to be pursued. Eight finalists will now be interviewed by the Scientific Board in order to choose those who present the best credentials, abstracts, and area of study. We will keep you informed via our newsletter as we receive information on this critical event.

The best way to stay informed on the work the Foundation is doing, according to Cate, is to subscribe to the Night Walker's Newsletter. If you don't already receive this very informative publication, and would like to subscribe, contact the RLS Foundation, Ste. 201, 4410 19th St., Rochester, MN. 55901-6624. The subscription rate is $25.00/year and is tax-deductible. The importance of research is critical to finding a cure, to which we are all committed. Unfortunately, it takes money, and a lot of it, to fund research, as with any disease. Our group does everything we can to raise money, but we also need your help. All of us want and need a cure for this terrible condition.

We thoroughly enjoyed having Cate Murray with us, and she was very complimentary about our group. She was also very happy to meet our Medical Sponsor and Advisor, Dr. Mark Buchfuhrer, who answered all of the questions submitted by each of our round table members. We had many new people in attendance, most of whom had heard of us from our web site that Dr. Buchfuhrer maintains. We are so fortunate to have him and can’t thank him enough for his time. Please note that he now maintains both the old web address and the new one, either of which will get you to us at http://come.to/rls or http://surf.to/rls Dr. Buchfuhrer also treated us to some beautiful slides of photos he and his wife took on their vacation in Fiji. He is an underwater expert at photographing beautiful coral and fish. There are more photos on the web site...check it out.

Debra Pfanschmidt, Director of Outreach, was unable to attend our meeting as she, Cate and our Jannell Beech opened the RLS Booth at the L.A. Convention Center for the Society of Neuroscience on Sunday morning. The convention ran from the 8th of November through Wednesday, the 11th, and Jannell put in time on Sunday and Monday while Barbara Taw served Tuesday and Wednesday. “Bill” Tunison was on board Wednesday, and a very interesting and exciting time was had by all. We were amazed that almost 50-60% of the scientific people who visited our booth, ( 28,000 attended ) either had RLS or had a family member who was afflicted. Most did not know what RLS was, so we all felt that a great deal of information was not only disseminated, but would filter down to many others, and that’s what we are all about.

At our Sunday meeting, we also had reports on the success of our books and greeting cards. Nona Maloney, our artist-in-residence, has contributed all of the proceeds from her cards to the Foundation for research, and we are very proud to have her on our Advisory Board. Jannell Beech brought us up to date regarding the RLS Cruise on March 19 of ‘99. We still have cabins available, and can promise a fun time to be had by one and all. Dr. Buchfuhrer and his family will be our guests, and he will conduct RLS seminars. For further info, call and leave a message at 800-268-4070 and Jannell will return your call. The deposit due date has been extended to December l5th, and is only $100.00 per person (double occupancy). We want to thank all who brought snacks to the meeting and to our members and guests. Special thanks to “Bill” Tunison, our leader, and our Advisory Board, who made it all happen. Those of us who handle the mail, phone, fax and email, are always happy to connect a name to a face at these meetings. Our next get together will be on February 7th of ‘99. Mark your calendars and plan to attend. We wish all of you warm and happy holidays. It’s our great pleasure to be a part of your life.


Meeting #13

Summary of our last meeting held on Februray, 1999.

 

SOUTHERN CALIFORNIA RLS SUPPORT GROUP NOTES FROM OUR LAST MEETING, FEBRUARY 7TH, 1999. barbara taw, editor

We had cause for celebration on our first meeting of the new year due to the fact that we are starting our 4th year this month as a support group. Despite growing pains that all fledglings of any nature experience, we have managed to spread a lot of information about RLS, and we get better as we go (read grow). It hasn’t been an easy road and there have been some bumps along the way, but being a hardy group with a collective lifetime of experiences, we make it all come together. We still marvel over Elizabeth “Bill” Tunison’s determination to form our group and Dr. Mark Buchfuhrer’s endless patience in being our medical sponsor. He attends every meeting and stays until the last question is asked. He is also the keeper of the Web Site, and updates it regularly for you in addition to answering all of the email. We consider ourselves to be very fortunate indeed to have a doctor “in the house” at all times.

We shared our festive day, done in a Valentine’s theme, with the 95th birthday of our Board member, Will Daggs. Will is very active with a number of groups, as he has been all of his life, and continues to give both his time and funding toward the cause of spreading RLS information. We depend on his sound advice and find him to be a great joy in our midst. We were very pleased to announce that he has just been elected to serve as a Board Member of the RLS Foundation, and we wish him the best of luck in that capacity. We also wished Margot Smith, another Board member, many more years of good health, as today was also her birthday. Margot does a variety of things for our group and always does it with a twinkle in her eyes and a lovely smile that radiates genuine warmth.

Jannell Beech, our travel agent and Board member, brought us up to date on the plans for the coming cruise. We sail on March l9th-22, and still have room for anyone who wants to go along. The cruise line will donate $40.00/cabin to the RLS Foundation, so we are not only fundraising, but having fun at the same time. Dr. Buchfuhrer and his family will be in attendance, and seminars on RLS will be conducted by him. We also have Alan O’Brien from the RLS Foundation in Minnesota aboard to bring us up to date on their activities and plans for the future. Anyone who is interested in swimming along can click into the New Items and/or Events index of this web site and go directly to Jannell, or you can call and leave a message for her at (714)-281-4070.

Our note cards, created by Nona “Granny” Maloney have been a very successful fund-raiser, and Nona had a new Valentine’s card at this meeting in addition to all the others. She whips up a painting for any occasion we want to celebrate during her long nights suffering from RLS, and donates all proceeds from the cards to the Foundation for research. We all thank you, Nona.

The requests for our books, authored by Dr. Buchfuhrer, continue to gain in popularity due to the fact that they are the best reference around for the layman to read, understand, and have in his possession. We are still getting requests for them from people near and far and are making definite inroads within the medical community. The formula is simple: if your doctor doesn’t know what RLS is or isn’t familiar with the medications used for treatment, you won’t get a prescription to help you cope.

We continued to maintain our round table discussions as usual. The feeling is mutual among us that they evolve into the “kitchen table”, where everyone is welcome and feels comfortable sharing their problems. Each table listed the most imperative among the questions raised. They differ at each meeting but nearly always relate to medications used. The more sophisticated our members get from their attendance makes their ability to handle their disease much easier.

After our Anniversary and Birthday cake break, Dr. Buchfuhrer answered all of the questions raised. He still tends to use certain medications as the drugs of choice, and is very adamant about employing drug holidays for those of us who use the “RLS Cocktail” method, (Benzodiazepines, Dopaminergics, and Opiods). Each individual patient requires a different combination...one size doesn’t fit all. For more information see the Treament pages of our book, or click into the web site of the same title.

We had a very good meeting, and will leave you with the names of our very able Board members, who deserve a great deal of credit that was duly noted by “Bill” at today’s meeting. Many thanks to all.


Meeting # 14

REPORT OF MAY 2, 1999 MEETING

ANOTHER SIDE OF DR. MARK BUCHFUHRER

by Elaine Quade

A special treat was enthusiastically received by all who viewed Dr. Buchfuhrer's ten minutes of underwater slides of plants and sea creatures taken in the waters off Fiji Island. Did you know that he is a SCUBA Diver in addition to being an M.D., F.R.C.P. (C)., F.C.C.P., and our own Medical Advisor as an Expert on RLS? He is also a "Computer Whiz", having created and continually updating this So. Calif. web site.

We were happy to welcome five visitors who were new to the group. Although our attendance was smaller than usual, (about 60) the group was more close-knit and most appreciative of all of the helpful information that they received.

Jannell Beach reported on the success of the RLS Cruise, which was taken by 38 people from our group and other patients throughout the country, and even one from Paris, France. All participants really appreciated the outstanding seminars conducted by Dr. Buchfuhrer and Allan O'Bryan, Chief Financial Officer from the RLS Foundation. Approximately $2,500 will be sent to the Foundation as a result of this Fund Raising Cruise. Recognition was given to Jannell for a job well done.

Will Daggs shared his experiences as a new Foundation Board member at his first Board of Directors Meeting held recently in San Francisco. He gave an update on the Board's various activities and endeavors to bring awareness, treatment and a cure for RLS. They are a very active group and are making strong in-roads with the medical and pharmaceutical professions. He stated that Bob Waterman and Leon Krain are heading up fund-raising efforts.

Nona Maloney collected $75.00 for her beautiful art work at today's meeting. She now has prints of her water colors for sale at $7.00 and $10.00. We appreciate her efforts to share her professional talent to raise funds for research.

"Bill" Tunison reported on the RLS Foundation research activities in the area of a "Brain Bank", and she also distributed a survey form from Dr. Richard Allen from Johns Hopkins, to determine any possible connections between RLS and a family history of dementia.

Round Table discussions were conducted with leaders from the Advisory Board and other volunteers. Each person at the table was given an opportunity to share their experiences with RLS and to submit a question for Dr. Buchruhrer to be answered later in the meeting.

A break for refreshments was enjoyed by all. Many volunteer to bring snacks which are delicious and are greatly appreciated.

The last hour of the meeting was given to answering questions from the group by Dr. Buchfuhrer. This is always an interesting and informative time, highlighting problems with RLS and treating and coping methods used by those afflicted. Our appreciation of Dr. Buchfuhrer grows with each session.

Elaine Quade


Meeting # 15

REPORT OF MAY 2, 1999 MEETING

Sunday, August 1, 1999

The meeting was called to order by Elizabeth "Bill" Tunison, Support Group Facilitator. Members and visitors were welcomed. Approximately 60 were in attendance including several new people.

A report was given by Jannell Beech regarding the greeting cards available for sale. Jannell has spent many hours making the cards and had a very nice display showing all the latest designs Nona Maloney had painted. All greeting cards were $1.00 each or 12 for $7.99 just for this meeting. Jannell said approximately $100.00 was received from sales. The proceeds go to the RLS Foundation for research.

Special speakers from our own group included Janis Lopes, John Kaufman, Shelly Madrid, and Sheldon Goldstein speaking about their own experiences with RLS. Leonard Smith and Henry Lopes spoke from the spouses point of view. Bob Daggs read a letter and Mary Snodgrass read a newspaper clipping about RLS. All were very interesting and well delivered. Our appreciation to all who were willing to share so that others might better understand and cope with this syndrome.

A time of "round table discussion" was held allowing each person to share his or her experience with RLS. We feel this is a vital part of our meeting and is helpful to all who participate, especially those attending for the first time. We encourage people to share what they have found that helps their RLS so that others may find help from a source that they were unaware existed.

All enjoyed the many varieties of refreshments that were brought by members and guests. These contributions are much appreciated because it gives us a time to relax and interact with those who are new or ones that we have never met at previous meetings.

A video tape was shown on "Meet the RLS Foundation Staff". "Bill" was instrumental in putting this video together when she was in Minneapolis early this summer. It was interesting to meet the people who run the Foundation office and to hear what their position encompassed. "Bill" had composed a "test" paper with many questions on it that would be answered in the video. We were to fill in the answers as we heard them. This enabled us to fix in our minds the facts regarding the workings of the Foundation. We graded our own papers afterwards and a prize (a packet of our RLS notecards) was given to each person for their effort to "fill in the blanks". A special THANK YOU goes to Bob Daggs for his expertise in editing and showing the video. He did a great job!

We missed Dr. Buchfuhrer at this meeting but will welcome him back in November when he will again answer questions relating to RLS and also show us some of his latest underwater pictures of sea creatures.

The meeting was adjourned at 4:00 p.m. Next meeting, November 7, 1999.

Elaine Quade, Secretary


Meeting #16

Southern California RLS Support Group Last Meeting Details

SOUTHERN CALIFORNIA RLS SUPPORT GROUP MEETING

Sunday, November 7, 1999 1:30 PM
Presbyterian Intercommunity Hospital, Whittier, California

The meeting was called to order by Elizabeth "Bill" Tunison, Support Group Facilitator. Members and visitors were welcomed. Almost 20 new people were in the total attendance of approximately 75 persons. This is an encouragement to us on the Advisory Board as it tells us there is still a need to help inform and bring hope to those suffering with RLS.

Bob Daggs and his assistant video taped our activities so that others could share the experience with us. They were striving to make a professional filming of this meeting in order to distribute it to other support groups and individuals around the country. We appreciate his efforts and time spent to make this a reality. We will be anxious to view it as soon as he has it edited and made available.

Because of the remodeling of the main auditorium where we usually meet, we were in a smaller room which necessitated some adjustment to our small group discussions. In spite of the inconvenience, we were able to have a productive time discussing our struggles with RLS, especially giving time for new attenders to share. Questions were compiled to give to Dr. Buchfuhrer to answer later in the meeting.

A break was taken to have refreshments and to be able to visit with old and new friends. Many brought finger foods to share for which we were all thankful.

Dr. Mark Buchfuhrer was back after being on vacation at the time of our last meeting. He favored us with some remarkable underwater slides which he had taken while scuba diving on his vacation. This is always an extra treat for us. He then spent the next hour answering questions from the group. We seem to learn something new every time we hear him speak. His input is greatly appreciated.

Meeting was adjourned at 4:00 p.m.

If you would like a copy of the video tape, send a check for $7.50 (made out to the: So. Calif. RLS Support Group), along with your own mailing address to: Mary Snodgrass, 11163 Chadsey, Whittier, 90604.  She also takes requests or the "Books", and will send them out for $10.00 plus postage of $3.50.

Elaine Quade


 

Meeting #17

Southern California RLS Support Group Last Meeting Details

SOUTHERN CALIFORNIA RLS SUPPORT GROUP MEETING, February 6, 2000.

Margot Smith opened the meeting by welcoming everyone. We had approximately eighty in attendance with many new ones. We met in the newly redecorated auditorium which was done very nicely and met our needs perfectly, including all the new electronic equipment and the table set up.

An announcement was made by Janis Lopes regarding the April 30th meeting at the San Diego Conference Center with the leading neurologists who are doing RLS research. It will be held from 1:00 to 5:00 p.m. and is free, but you must have a reservation. Following the program, there will be a "Dinner With the Doctor" event at "Rainwaters" (within walking distance) at 6:00 p.m. where everyone will be seated at a table with one of the neurologists. The cost is $50/person. There is only room for 50 people, so please call Mary (562) 944-9402 for reservations and other information. Arrangements have been made with three nearby hotels for those interested in staying overnight. Reduced rates are being offered. Mary can help you with that information as well. Let's be sure to take advantage of this "once in a lifetime" experience.

Rosemary Speight announced the possibility of another RLS Cruise with Dr. Buchfuhrer if there is enough interest. It would be to Alaska or the Caribbean sometime this spring. A sign-up sheet was passed.

Will Daggs spoke about the need for everyone to become a member of the RLS National Foundation by enrolling with a $25.00 donation. Mary Jo Enyart showed samples of the Night Walkers Newsletters which come with RLSF membership. Bob Daggs mentioned that videotapes of the last meeting with Dr. Buchfuhrer answering questions, (Nov, '99) are available to purchase for $10.00.

"Bill" Tunison discussed the video that was to be shown, (Dr. Richard Allen on Medical Answers) and explained the worksheets at the tables for each person to fill out during our small group meeting. Time was also given to introduce those at our table and to hear RLS stories by each person. A break was taken to partake of the various refreshments brought by several people.

The video was then shown in segments allowing time for discussing what had been said by the program host and Dr. Allen so that we could remember each part and fill in our uncompleted worksheets. Mary Jo Enyeart recorded our responses on a flip chart. The film was very informative and helpful. We did, however, miss having Dr. Buchfuhrer with us to personally answer questions. He is planning to attend our May 7th meeting.

Rosemary Speight passed a "donation" basket for those interested in contributing to the work of our So. Calif. Support Group. Meeting was adjourned at 4:00 p.m. by "Bill" Tunison.

Respectfully submitted by Elaine Quade, Secretary

If you are in Southern California, or near by, you are cordially invited to attend our meetings: Sunday afternoons from 1:30 to 4:00 on August 1st, November 7, 1999, and February 6, and May 7, 2000. You don't have to sit still, but always have the opportunity to stand up and/or move around. We'd love to meet you!


Meeting #18

SOUTHERN CALIFORNIA RLS SUPPORT GROUP

QUARTERLY MEETING MINUTES

SUNDAY, MAY 21, 2000

PRESBYTERIAN INTERCOMMUNITY HOSPITAL

Meeting was called to order by Margot Smith at 1:50 p.m. Members and visitors were welcomed. Approximately 60 were in attendance including several new people. We felt this was a good showing considering the date of the meeting had been changed from our standing date of May 7th. This was done so that Dr. Buchfuhrer could be with us. Margot announced the resignation of Nona Maloney who has served so faithfully as a member of our Advisory Board since the inception of our group. We will miss her and her creative talents, but understand her desire to meet her physical and family needs. It was unanimously voted to make her an Honorary Member of the Advisory Board. Thank you, Nonie, for all you have done to help make our group what it is today.

Janis Lopes reported on the April 30th RLS meeting in San Diego that some of our group was privileged to attend. Approximately 300 in all attended the afternoon meeting including several persons from the National RLS Board. The information presented by the seven neurologists on the panel was at points challenging to absorb, but at the same time educational, encouraging and helpful. Bob Waterman from the National RLS Board gave a report on the progress of research being conducted because of grants becoming available from the Foundation. He felt it imperative we conduct a survey to determine the numbers of people in the country who have RLS so that recognition can be drawn to the need to fund research for a cure. He also encouraged those in attendance to become members of the RLS Foundation so that the work that has been started can continue. Much progress has been made in the last few years towards bringing awareness, improving treatment and finding a cure. He reported that a "Brain Bank" has been established at Harvard Medical School to receive and study brains that have been and will be donated to help find the cause and cure for RLS.

Robin Shadduck reported on the availability and sale of the greeting cards which were designed by Nonie Maloney. All proceeds from sales go directly to the Foundation designated for research.

"Bill" Tunison reported on the availability of our newly revised (3rd Edition) book on RLS and PLMD by Dr. Buchfuhrer. Thanks was given to Dr. Buchfuhrer for his time and expertise given to review medications and treatments found in the book, to Bob Daggs for the beautiful covers, and to Mary Snodgrass and Margot Smith for the many hours spent in editing and compiling the letters received by Dr. Buchfuhrer and his medical replies. The book has been well received and copies are available for sale at $10/each not including postage.

"Bill" also urged us to contact U.S House of Representatives: Nancy Pelosi and Duke Cunningham both of California, encouraging them to vote to create new funding for the Centers for Disease Control and Prevention. This program would create new funding for public awareness campaigns to help get people treated and diagnosed. These funds will be the important first step to collecting data on the prevalence of sleepiness and sleep disorders.

After a short break, time was given for small group discussions. This allows for each person to share their journey with RLS. Questions were written down by a recorder and presented to Dr. Buchfuhrer so that he might answer each one. The last hour of the meeting was devoted to questions and answers. Dr Buchfuhrer's presentation was even better than ever and the group was most attentive, even those who had to stand or walk. We learn something new and helpful at every meeting.

Special thanks to all who brought snacks to share!

Meeting adjourned at 4:00 p.m. by Margot giving thanks to all who attended and participated.

Respectfully submitted,
Elaine Quade, Secretary


Meeting #19

SOUTHERN CALIFORNIA RLS SUPPORT GROUP

QUARTERLY MEETING MINUTES

SUNDAY, AUGUST 20, 2000

PRESBYTERIAN INTERCOMMUNITY HOSPITAL

STANDING ROOM ONLY!!

The crowd came early, and there were many new people looking surprised to see so many others who had gathered with this same miserable malady. As they entered the auditorium, they looked over the books we had for sale and noticed that the refreshment table was already piled high with loads of delicious snacks to nibble on anytime during the meeting.

Eight round tables had been set up with ten chairs at each, to provide a setting for small groups to discuss their symptoms and treatments for RLS. The tables were soon filled.

Mary Jo Enyeart called the meeting to order and welcomed the visitors. She encouraged everyone to become acquainted with the others at their table. It was encouraging for all of us to have so many new people visiting.

Will Daggs gave a report on the Greeting Cards stating that this was a way for us to send money to the Foundation for research.

Mary Snodgrass informed us of the sales and distribution of the third edition of the book by Dr. Buchfuhrer and compiled by our group. She read letters that have been received telling of various recipients who have been appreciative of receiving a copy. Much of this was made possible because of the efforts and financial help of Will and Bob Daggs and the editing by Mary Snodgrass and Margot Smith.

“Bill” Tunison brought to the attention of the group the development of the “Brain Bank” at Harvard University through the National Foundation. Two brains, (including Virginia Wilson’s), have already been designated for RLS Research. Several members of our group have already sent for the forms to include the donation of their brains in their will. They include Nona Maloney, Will Daggs and “Bill” Tunison. Information and consent forms were made available to those interested in this endeavor to find a cure for RLS.

Robin Shadduck made an appeal for donations and distributed the basket for contributions.

“Bill” Tunison conducted an interview with Jack and Verlene King regarding their recent experience when Jack was treated at a hospital because he had not slept in two weeks, due to his RLS and stomach pain. He was given the wrong medication there, and thus he embarked on a nightmarish journey to four different hospitals who had no knowledge of RLS.

Fortunately Jack is doing better physically, but the trauma they experienced lingers. The reason they were willing to share with the group was to warn us that this could happen to anyone and we all need to be prepared. We need to know about the medications we are taking and to carry that information with us should we have to enter a hospital. We need to be aware of medications that should NOT be given to RLS patients: (antidepressants, antihistamines, and antinausea).

It is also a good idea to have your spouse or family member know about these things. We all benefited from the interview and we want to thank the Kings for sharing,

The next half hour was devoted to our discussion groups with time being given for each one at the table to share about their RLS experiences. Questions were prepared for Dr. Buchfuhrer to answer after our break for refreshments, and a chance to visit with each other.

Almost everyone sat spellbound for the next hour as Dr. Buchfuhrer answered our questions in such a clear, understandable and informative manner. However, since we ran out of chairs, some people were sitting on the floor, and others were standing around the room. It was truly a meeting with: STANDING ROOM ONLY!

Elaine Quade

Secretary


Meeting # 20

SUNDAY, NOVEMBER 5, 2000
Presbyterian Intercommunity Hospital
12401 Washington Blvd.
Whittier, CA.
(about a mile east of the 605 Fwy, on the north side of the street).

FIFTH ANNIVERSARY CELEBRATION

The meeting began with Round Table Discussion Groups. An opportunity was given to each one at the table to share their symptoms and treatments, and to suggest a question for Dr. Buchfuhrer to answer later.

At 2:00 o'clock, Jannell Beech opened the meeting by welcoming everyone and asking who all had come for the first time. Later, our special guests were introduced; namely, Dr. Buchfuhrer's wife, Dr. Laurie Buchfuhrer, and daughter, Julie, and Laurie's mother. We were so pleased to have them share this special day with us. Jannell also introduced Janis Lopes who will be our new facilitator-in-training. We are so fortunate to have Janis assume this responsibility with the hope that this year of understudy with "Bill" Tunison, our present facilitator, will result in her becoming our new facilitator.

Janis made announcements regarding greeting card sales, book and video sales and availability of other literature for those interested. Jannell made an appeal for those not already a member of the National Foundation to join today for a reduced donation of $15.00. The remaining $10.00 would be paid for by the So. Cal. RLS Educational Support Group. A total of 19 people took advantage of this offer. Donations in the basket go to the RLS Foundation in celebration of and appreciation for their five years of service and support to our group and in honor of our hard working members. Altogether, the checks that were sent in, along with the money from the greeting cards and the donations added to the basket, have added up to $1,300.00. (So far.) Did you want to add to that in Dr. Buchfuhrer's honor? Just make out a check to the So Cal RLS Group and mail it to E.L.Tunison, 5636 Ben Alder, Whittier, CA. 90601. Thank you!

Jannell introduced "Bill" Tunison, our very capable and loved facilitator, and thanked her for starting the group and for keeping it going with many hours of dedicated work these past five years. Her efforts have been greatly appreciated and our goal now is to make the transition as smooth as possible for her.

"Bill" presented the Charter Members: (attending today): Mary Ellen Baker, Jannell Beech, Jim Cox, Helen Da Pra, Barbara Diamon, Olive Hathaway, Dorothy Hickey, Nona Maloney, Florence Sheets, Sue Sturdevant, Elizabeth "Bill" Tunison and Laurie Wood, and presented them with personalized blue ribbons. Our thanks to these people for getting our group organized. "Bill" presented Advisory Board Members: (past and present) Kudos to these folks for all they do behind the scenes and at our meetings to assure the continuation of our group.

"Bill" also congratulated those present who had had outstanding attendance at our meetings during the past five years.

Additional time was given to round table discussion and recording of questions for Dr. Buchfuhrer before a break was taken to celebrate our 5th anniversary with a beautifully decorated cake provided by Robin Shadduck for the occasion. Our thanks to her and her mother and father who helped decorate the table and serve the cake. The snack table was laden with many donations of food brought by members and guests. We were all grateful for this time of refreshment and fellowship.

"Bill" introduced Elaine Quade who presented Dr. Buchfuhrer with a gift certificate to a local restaurant thanking him for his faithful involvement and untiring effort to inform and update us on RLS research and medications at each of our meetings. Our appreciation to him for his willingness to answer any and all questions posed to him at the meetings is beyond measure. Without his consent to be our "Sponsor Doctor" none of this would have become a reality. How grateful we are to him! He has helped so many of us cope with this disorder. Elaine also presented tickets to the Long Beach Aquarium to Dr. Laurie Buchfuhrer and their children to thank them for sharing their husband and father with us in such a selfless and generous way.

Bob Daggs read some letters that he had received from other group leaders thanking him for the video tapes of Dr. Buchfuhrer that he had sent them. They all appreciated having Dr. Buchfuhrer on tape, to bring to them the same answers to questions and inspiration that he brings to us at every meeting.

The last part of the meeting was spent with Dr. Buchfuhrer answering new questions from the group. Meeting was adjourned at 4:00 p.m. Our thanks to everyone who helped make our 5th anniversary celebration a success. We had approximately eighty present, many for the first time.

Next Advisory Board meeting is January 7, 2001 at the home of Stan & Elaine Quade.

Next meeting is February 4, 2001

Respectfully submitted,
Elaine Quade, Secretary


Meeting # 21

STARTING OUR SIXTH YEAR
Feb. 4, 2001

Elizabeth "Bill" Tunison opened the meeting at 1:30 p.m. extending a warm welcome to all of those in attendance (approximately 86). She spoke of the transition from herself as Group Facilitator to that of Janis Lopes who will be understudying with "Bill" for the coming year. She encouraged everyone to lend their support to Janis by making themselves available in various ways to make the transition as smooth as possible.

"Bill" introduced Janis Lopes who conducted the remainder of the meeting.

Janis thanked "Bill" for her excellent leadership over the past five years. She welcomed several members of the Huntington Beach Support Group to our meeting, and also asked all attending for the first time, to raise their hands. It is always surprising and encouraging to have these new people attend, as this is the goal of our group - to bring awareness, educational help and support to new people suffering with RLS. It was explained that our new schedule for 2001 will be three meetings (instead of four): February 4, June 3 and October 7.

Janis brought to our attention the national "Sleep Awareness Week", March 26 - April 1, and suggested we write our legislators explaining the need for research for Restless Legs Syndrome. Also, the special RLS meeting in Phoenix, Arizona will be presented by the RLS Foundation on Saturday, March 3, 2001 from 2:00 - 4:00 p.m. at the Phoenix Convention Center. For more information visit the Foundation's web site at www.rls.org. She told of the upcoming Forum on Sleep Disorders to be held in Washington, D.C. in March. Janis also expressed thanks to those who brought refreshments.

Mary Snodgrass brought us up-to-date on book and video sales, both of which were available at the meeting. She encouraged all who were not members of the Foundation to join. She mentioned the need to be aware of certain medications that can interfere with RLS medications. These are listed in the book and everyone should make note of them in case they are prescribed by your doctor or if should you have to go to the hospital where, perhaps, personnel wouldn't know of the conflict. It is a good idea to carry a list of medications you are presently taking as well as these that can interfere with RLS medications in your wallet.

Janis introduced Advisory Board members who were seated at tables to help with small group discussions. She explained the format of the discussions and the next half-hour was devoted to those who shared their journey with RLS. Gratitude must also be given to those spouses and friends who come along to support those with RLS. A break was taken to partake of the delicious refreshments. Janis introduced Dr. Mark Buchfuhrer who led in a time of questions and answers. Our appreciation of Dr. Buchfuhrer's willingness to give of his expertise and time at our meetings is unlimited. Many are helped during this time and have expressed their thanks for having such a knowledgeable person answer their questions in such a complete and understandable way.

Janis adjourned meeting at 4:00 p.m. Dr. Buchfuhrer remained afterwards to continue to answer questions of those who wanted to stay. Next meeting is June 3, 2001.

Elaine Quade, Secretary


Meeting #22

SUNDAY, JUNE 3, 2001
DOWNEY REGIONAL MEDICAL CENTER DOWNEY, CALIFORNIA

This was our first meeting at the Downey Hospital and we appreciated the spacious comfortable accommodations afforded us by the hospital. Janis Lopes opened the meeting at 1:30 p.m. with greetings to all those in attendance (approximately 60, with 8 new people), some coming from as far away as Tulare and Hesperia. Robin Shadduck reported on cards that are on display for sale. Donation basket was passed .

Mary Snodgrass spoke about Dr. Buchfuhrer's book. It is a wonderful resource of information for patients and doctors. It was noted that special attention should be paid to medications that can worsen or aggravate RLS. A letter was read from a Support Group leader expressing her thanks to Dr. Buchfuhrer and our group for providing such useful material.

"Bill" Tunison reported on her recent trip to attend the National Board of Director's meeting. There is a new Executive Director, Georgiana Bell. A new Director of Outreach has been hired to take Cindy's Stier's position. There are 16 members on the Board and they all have RLS, which necessitates a walk from time to time during the meetings. Dr Richard Allen was very encouraged about the momentum of the RLS research now taking place. The brain research is very important and it will be beneficial if more organ donations can be obtained. If anyone is interested in donating, the Foundation has all the necessary information. The Foundation apologizes to all the people who received a rather harsh letter sent without their consent, asking for further donations.

Everyone was urged to join the National RLS Foundation. Pamphlets were distributed with applications inside for those interested in joining. The cost is $25.00 per year. Janis introduced our Advisory Board members. She acknowledged members for all the delicious refreshments they brought to the meeting. Small group discussions were held with a break time afterwards. Dr. Mark Buchfuhrer was introduced and he answered many questions from the audience, which were very well received. Janis adjourned the meeting at 4:00 o'clock. The next meeting will be October 7, 2001 at the Downey location.

Respectfully submitted by Mary Snodgrass in the absence of Secretary, Elaine Quade.


Meeting #23

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP

Minutes of the General Meeting on Sunday, October 7, 2001
Downey Regional Medical Center, Downey, California

Janis Lopes opened the meeting at 1:40 by welcoming all those in attendance.  She announced that the "donation basket" would not be passed today because of the national situation and the aerial attack on Afghanistan.  It was suggested that any potential monies to our group be given to our national relief fund. 

Janis mentioned the literature that was available on the back table for those interested.  She also mentioned joining the National RLS Foundation.

Janis introduced our special guest, Shannon Turner-Nellias, a RN from the San Diego State University School of Nursing.  She developed a questionnaire for her Master's Thesis because she also has RLS and wanted to see how diet may affect the symptoms of RLS.  Her main targets were Vitamin A, sugar and caffeine.  She had inquired about our group being willing to participate in her research and it was enthusiastically given.  Time was allotted for those in attendance to fill out the form in order for Shannon to have them to take back with her.  If she needs more participants, we will give her some more names to send questionnaires to at her expense.  She will let our Advisory Board know of her findings as well as the National RLS Board.  We are encouraged to know research is being conducted to find better treatment and eventually a cure and we thank Shannon for coming to our meeting.

  

A break was taken for refreshments, literature perusal and visiting. Approximately fifty persons attended our meeting with several new people joining us.

Dr. Mark Buchfuhrer spent the next hour discussing RLS and answering questions from the audience.  He spoke of two trial tests that he is conducting on new medications - Gabitril (an anti-seizure medication) and Requip (to determine effectiveness of medication for RLS symptoms).  He is conducting the Gabitril tests on his own and requested those interested in participating to sign sheets at each table.  Glaxo, Smith, and Kline Pharmaceutical Company is sponsoring the Requip 21-day trial.

Janis adjourned the meeting at 4:00 p.m.  She thanked all that brought refreshments.

We extend our sympathy to Janis and Henry Lopes upon the death of Janis' mother last week.  We appreciate their willingness to attend and conduct our meeting today.

Respectfully submitted by,
Elaine Quade, Secretary

Next Advisory Board Meeting - January 6, 2002 at Mary's home, 1:30 p.m.

Future General Meetings in 2002:  Feb. 3, June 3 and Oct. 6.  


Meeting #24

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP MINUTES OF THE GENERAL MEETING ON SUNDAY, FEBRUARY 3, 2002

             DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA

Janis Lopes opened the meeting at 1:30 p.m. by welcoming all those in attendance.  Several new attendees were present, one coming from as far away as Las Vegas.  Although this was Super Bowl Sunday, we had 47 present. Janis mentioned the literature that was available on the back table for those interested.  Advisory Board members present were acknowledged.

Robin Shadduck spoke of the death of Advisory Board member, Willis Daggs, and said all donations given today would go to the RLS National Foundation for research in memory of Will.

"Bill" Tunison reported on the Foundation news by first giving an interesting personal account of what the Foundation has meant in her life.  She also told of her journey to discover her problem and to cope with living with RLS.  She found a way to fight back by starting the Southern California RLS Support Group, and later, as she became a member of the National Board.  "Bill" expounded on the ways the National Board can accomplish things that support groups cannot; that is by "bringing awareness" through contact with medical personnel, scientists and pharmacies, "funding research" that will discover medications and other therapies for RLS, thereby fulfilling the goal of developing effective treatments and ultimately "finding a cure".   We can be a part of this endeavor by joining the RLS Foundation.  "Bill" pointed out the many benefits of belonging to the Foundation, which are found in the brochures available on each table. She encouraged everyone to become a member.

"Bill" read several e-mails that were exchanged between Cate Murray, former Executive Director of the Foundation, and Bob Daggs, Will Daggs' son, after learning of Will's death on January, 23, 2002.  These e-mails told of the Foundation's love for him and how he will be missed on their Board. Will was a favorite on our Advisory Board because of his winsome ways, gentlemanly manners and wealth of information and experience.  Everywhere he went he brought humor and kindness.  We all benefited from knowing him and we will greatly miss this fine man.  "Bill" mentioned the memorial service to be held on Saturday, February 9th at Bel Air Presbyterian Church, encouraging those that could to attend.

A time of sharing in small groups was held, after which a break was taken for visiting and refreshments.

Dr. Mark Buchfuhrer shared information about the upcoming study sponsored by the GlaxoSmithKline Pharmaceutical Company on the medication Requip.  This will be a 12-week study that Dr. Buchfuhrer will oversee in our area.  The goal of the study is to obtain FDA approval for the first and only medication for RLS.  For those interested in participating, sign-up sheets were made available at each table.  Dr. Buchfuhrer spent the next hour answering questions on RLS from those desiring answers to their problems. Many additional questions were asked making it a very lively and excellent interchange between Dr. Buchfuhrer and our members.

Janis Lopes adjourned the meeting at 4:00 p.m.

Next Advisory Board meeting will be April 7, 2002 at Margot's home.

Next General meeting will be June 2, 2002.

National Sleep Awareness Week will be April 1-7, 2002.

Respectfully submitted,

Elaine Quade, Secretary


Meeting #25

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP

MINUTES OF THE JUNE 2, 2002 GENERAL MEETING

DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA

 

Janis opened the meeting at 1:30 p.m. by welcoming all those in attendance (approximate 60).  Many visitors were present, some as far away as San Diego.

ANNOUNCEMENTS:         

Robin Shadduck explained that a donation basket was on the refreshment table for those who wished to make a contribution.  It was stressed that visitors need not make a donation, but rather to take this opportunity to become acquainted with our program and to feel welcome in our midst.  A memorial has been established through the RLS National Foundation for Willis Daggs, an active member of our group for many years.  Any wishing to contribute to this may send monies to the Foundation direct.  The foundation has requested a list of members of our group.  Any not wanting their name on this list should note such on the proper for found on each table.

Mary Snodgrass reported that books were available on the back table for $10.00.  Also, free literature was available.  She encouraged everyone to join the Foundation if they had not already done so.  Many benefits are received by members, including the Nightwalkers publication.  This also makes available operating funds for the organization.  Mary spoke about RLS medications and the need to be aware of other medications that have adverse reactions when taken conjunction with RLS medications, mainly antihistamines.

“Bill” Tunison said that she and Janis would attend the RLS National Convention in St. Louis, Missouri, September 27 & 28.  They have been asked to participate in a seminar at the Support Group Leaders meeting the first day of the Convention.  Cartoon posters have been made available from the Foundation for distribution in doctor’s offices, senior centers, convalescent and retirement homes, etc. to bring awareness to RLS.  Space at the bottom of the posters allows information on local support group to be noted.  These were available for anyone at the back table.  Doctors who wish to be on a referral list at the Foundation should send appropriate form to them.  These are doctors who are knowledgeable about RLS and who are willing to see patients with this disorder.  “Bill” stated that at the Harvard Brain Bank special freezers are being used to hold donated brains from RLS persons who are deceased and have willed their brain to the bank.  This will ensure that these brains will be studied primarily for RLS information and, hopefully, to find a cure.

Janis expressed regret that Both Dr. Buchfuhrer and Shannon Allex Turner could not attend today’s meetings due to unexpected circumstances.  Both sent their apologies and regrets that they would be absent.  Forms are available at each table for those that would like to participate in the Requip study that Dr. Buchfuhrer is conducting.

Small group discussions followed to enable persons at each table to share their journey with RLS.  Time was given to write questions for Dr. Buchfuhrer to answer either by e-ail or at the next meeting.  A break was taken for refreshments and fellowship.  Robin had decorated the table in a beautiful patriotic theme.  Thanks to all who had brought refreshments.

During the last hour time was given to have every share answers to specific questions on RLS if they wanted to.  Robin conducted the session and everyone felt it was a successful experience.

We look forward to our next meeting when Dr. Buchfuhrer will be with us, as well as Shannon Turner.  Shannon will give us an update on her recent thesis study on RLS in which our group participated.

Respectfully submitted,

Elaine Quad
Secretary


Meeting #26

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP

MINUTES OF THE OCTOBER 6, 2002 GENERAL MEETING

DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA

As Janis was on vacation, Robin opened the meeting at 1:30 p.m. by welcoming all those in attendance (approximately 67), many for the first time. It is very gratifying to have so many join us as we learn, share and encourage each other in our pursuit to find ways to cope with RLS. A big thank you to all on the Advisory Board who did so much to make this meeting successful. The food table, with its many contributions and fall decorations, was beautiful and a thank you to all who contributed. The book table had an array of helpful literature. It was wonderful to have our new PA system in place and our gratitude goes to the one who made it possible. Having it enhanced our meeting considerably.

ANNOUNCEMENTS:

Robin Shadduck explained that Henry and Janis Lopes were on vacation after attending the RLS National Convention in St. Louis, Missouri, September 27 & 28. “Bill” Tunison also attended and will bring report of meeting later in the meeting.

Both Janis and “Bill” were actively involved by conducting a Seminar for Support Group Leaders. She announced the availability of our new “Medical Alert” card and said it was very well received by the Foundation. Mary was to give more details later in the meeting.

Several of our visitors heard about the meeting through the web site and others through the newspaper or friends. Many came from far distances to attend the meeting.

Mary Snodgrass reported that the revision of our RLS Manual is being conducted and will soon be ready for print. Our thanks to Margot and Mary for editing the revision, and to Robin for all she did to make the “Medical Alert” card become a reality. We are grateful to Bob Daggs for his input regarding the cover and for covering the cost of the printing. Mary explained the information on the “Medical Alert” card, especially the medications that are to be used with caution when taking RLS medications. Many hours have gone into the design and printing of these cards and it was gratifying to have the Foundation approve its use. “Medical Alert” cards were available at the meeting for distribution to anyone who wanted them.

“Bill Tunison” gave a report on the Convention stating that there are now eighty-four Support Groups in the United States and Canada. There were representatives from sixty groups at the Seminar that Janis and “Bill” conducted on Friday of the Convention. Most wanted to know how to find a Medical Advisor for their group. Dr. Buchfuhrer had written a letter addressed to potentially interested doctors, encouraging them to become Medical Advisors. He stated in the letter that it has been a very rewarding experience for him, as he has learned much from those attending the meetings by listening to their stories regarding their struggles to cope with RLS. He said it has been very gratifying to be able to help patients by prescribing the correct medications. This article was distributed at the Convention and used by “Bill” and Janis in their Seminar. Hopefully, it will encourage other doctors to get involved in a support group.

A “tool box” was given to each attendee at the Seminar by the Foundation. It was a file folder and contained helpful literature most of which was developed by our group.

“Bill” said a national directory of doctors willing to treat RLS patients has been printed by the Foundation along with a number of other new publications. These are available through the Foundation. She commended Janis for doing an outstanding job at the Convention. Six outstanding scientists and doctors spoke on Saturday. Among items of interest: $500,000 has been given by the NIH for RLS research; RLS is not a sleep disorder but a neurological disorder that affects sleep; our circadian clocks are all different; onset of RLS can begin in childhood or later after age 30; PLMD is rhythmic in nature; iron deficiency is difficult to determine - a ferritin level test is advisable; warned about the augmentation possibility with Sinemet and grogginess with Klonopin medications; study is being conducted regarding use of spinal anesthetic during childbirth in the hopes of locating a gene in the spinal cord or brain that causes RLS.

Robin mentioned that a new PA system has been donated to our group. It was given in honor of Willis Daggs, by his son, Bob Daggs.

Rosemary Speight made announcement regarding donations and baskets were distributed. We are very grateful to those who contribute to help with on-going expenses of our group.

SMALL GROUP DISCUSSIONS

Time was given for each person at the various tables to introduce themselves and tell of their journey with RLS. A break was then given to visit the refreshment table.

Robin introduced DR. BUCHFUHRER and a time for answering written and oral questions from the group was conducted by Dr. Buchfuhrer.

Meeting was adjourned at 4:00 p.m.

Next Advisory Board meeting will be at Mary’s home on October 20th at 1:30 p.m.

Next General Meeting will be Sunday, February 2, 2003.

Respectfully submitted by

Elaine Quade, Secretary


Meeting #27

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP

MINUTES OF THE FEBRUARY 2, 2003 GENERAL MEETING

DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA

 

Janis Lopes opened the meeting at 1:40 p.m. by welcoming all those in attendance (approximately 52). She introduced the Advisory Board members in attendance (Bob Daggs, Mary Jo Enyeart, Henry and Janis Lopes, Stan and Elaine Quade, Kei Sakita, Robin Shadduck, Margot Smith, Mary Snodgrass, Rosemary Speight, and Elizabeth Tunison). She thanked the Board for their commitment and hard work stating how much she appreciated the help she received from each one. Janis introduced Bob Daggs and reiterated the many ways he has advised and helped the group with printing of book covers, Medical Alert Cards, making videos, setting up equipment and his generosity in supplying our PA system. His valuable contributions are much appreciated and help make us function in a professional way at our meetings. Because of his help we have been able to send materials to all the support groups in the United States as well as to several countries outside our borders. Bob spoke in response acknowledging his father, Willis’, contributions to the RLS cause and his pleasure in being able to continue to be involved with our group as a consultant.

ANNOUNCEMENTS:

Robin asked “How do we support ourselves as a group”? The answer was through a group effort, with donations being made by those who wished to help. It was suggested that those in attendance for the first time not feel it necessary to contributed, but to enjoy the meeting and glean what helpful information they could to assist them in their struggle with RLS. Stan and Rosemary passed the baskets.

Mary gave a brief overview of the group’s beginnings and how Dr. Buchfuhrer set up the Website and from that the material for the Educational Guide which now is available in a 3rd edition with updated supplemental information. Mary and Margot were responsible for editing the new supplement. We were pleased to use one of Dr. Buchfuhrer’s beautiful underwater photographs on our new book cover. He also oversaw the development of the Medical Alert Cards along with Robin and Bob.

“Bill” reported on RLS Foundation news stating she will remain on the National Board as an Advisory Council member along with six others who had finished their six-year terms this past year. She gave some of the history of the Foundation telling how it all came into being with the vision of seven people some ten years ago. At the brain bank at Harvard University, there are now seven brains from RLS people being studied with progress being make to find a cure. One half million dollars is being made available this year through the NIH (National Institute of Health) to study RLS. This is a very significant acknowledgment of RLS and the need to find a cure.

DISCUSSION TIME

A time of sharing at the tables was given each person with an opportunity to write questions for Dr. Buchfuhrer to answer later in the meeting.

BREAK FOR REFRESHMENTS

INTRODUCTION OF DR. BUCHFUHRER

Dr. Buchfuhrer answered questions from the group and then spent time afterwards with individuals who had further questions. This phase of the meeting is very well received and the time given by Dr. Buchfuhrer is greatly appreciated.

Janis concluded the meeting by thanking people for coming commenting that their presence helps others realize they are not alone in their journey with RLS. Special thanks to those who brought snacks, and who help in so many other ways.

MEETING ADJOURNED at 4:00 p.m.

In order to show our appreciation to Bob Daggs, the Advisory Board met for dinner at Mimi’s restaurant after the meeting. Acknowledgement of Bob’s contributions were expressed and thanks was given to him for his help in innumerable ways to our group.

NEXT GENERAL MEETING: Sunday, June 1, 2003

NEXT ADVISORY BOARD MEETING: Sunday, April 27, 2003 at Henry and Janis’ home.


Meeting #28

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP  

MINUTES OF THE JUNE 1, 2003 GENERAL MEETING  

DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA 

 A warm welcome by Janis Lopes opened the meeting at 1:40 p.m. Eighty-four people were in attendance with approximately 18 visitors. This was one of the best attended meetings we have experienced in our history. A sense of excitement and anticipation was felt by all.  

ANNOUNCEMENTS: 

Janis mentioned the upcoming RLS Regional Meeting to be held in Phoenix Mesa, Arizona on Sunday, November 23, 2003. She encouraged all who could to attend. 

Janis also shared her news about being interviewed for a video news release and press release for RLS awareness.  It was part of a larger PR package expected to be released June 10 for television stations and newspapers to use. 

Mary gave a short overview of the history and origin of the 3rd Edition of the RLS Educational Guide Book by Dr. Buchfuhrer who also started our Web Site. Both of these tools are much used and appreciated by many. Mary told about the Medical Alert Card and she encouraged everyone to pick up some at the literature table after the meeting. She also mentioned the book Sleep Thief and the Nightwalker magazine both of which are available through the Foundation. She encouraged everyone to become a member of the Foundation as the benefits are numerous. 

Robin spoke of the two new CD’s that the Foundation has made available. One is designed for physicians and the other for RLS patients. Many helpful, informative items are discussed on the CD’s and she encouraged members to avail themselves of copies. She had her computer set up so anyone could view the CD and acquire one from her limited supply or by placing an order through the Foundation. It was suggested to give a copy to your physician if you thought he/she might find it useful in learning about RLS. 

Janis mentioned that our next meeting on October 5 will have a different format in that Dr. Buchfuhrer will speak at the beginning of the meeting with the small groups meeting during the latter part of the program. The donation basket was passed giving opportunity for anyone wanting to contribution to our Support Group to do so. 

SMALL GROUPS met to share with one another regarding their experiences with RLS. 

A bountiful table of refreshments was available during the break. Janis thanked the many who brought items. Thank you to Rosemary, Robin, Margot and Henry for decorating, serving, and making punch and coffee. 

DR. MARK BUCHFUHRER answered questions from the group for the next hour. Everyone is so appreciative to have an opportunity to ask questions about RLS and the resources that are available to help them cope with this disease.  

Meeting was adjourned at 4:15PM. 

NEXT ADVISORY BOARD MEETING - August 24, 2003 at Rosemary Speight’s home. 

NEXT GENERAL RLS MEETING - October 5, 2003 

 Respectfully submitted by 

 Elaine Quade, Secretary


Meeting #29

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP

MINUTES OF THE OCTOBER 5, 2003 GENERAL MEETING

DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA

Janis Lopes opened the meeting at 1:30 p.m. by welcoming everyone. Sixty-six were in attendance, almost half of them for the first time. Many found out about the meeting through the Times newspaper and the RLS website. It is very encouraging to know the information is being seen and acted upon.

Janis gave the following announcements:

RLS Regional Meeting to be held in Mesa, AZ, Sunday, Nov. 23, 2003

Essay contest to be held through the National Foundation on the subject of “How I Make it Through the Day and Night” in 200 words or less. Forms are available for those interested in participating. Janis requested that those writing essays to please send copy to her. It would be great to have someone from our group win.

Due to the change in agenda for this meeting, we held the small group discussions first so Dr. Buchfuhrer could commence the question and answer part of the program at 2:00 p.m. Many questions were posed to him with answers to each questions being given in a clear and informative way. Many expressed their appreciation for the help they received.

A break was taken for refreshments. Rosemary Speight, Margot Smith and Robin Shadduck set a beautiful table with fall decorations and many snacks provided by various ones that came to the meeting. We are always grateful for their contributions.

Janis Lopes and Elaine Quade made up four “Holiday Baskets” to help raise funds for The National RLS Foundation research program. Tickets were given for donations and names drawn to determine winners. A total of $255.00 was realized. A big thank you to Henry and Stan for handling ticket donations.

Janis adjourned the meeting at 4:00 p.m.

Respectfully submitted,

Elaine Quade, Secretary

NEXT ADVISORY BOARD MEETING: January 4, 2004 at Mary’s home at 1:30 p.m.

NEXT GENERAL MEETING: February 1, 2004

FUTURE GENERAL MEETINGS: June 6, 2004 and October 3, 2004


Meeting #30

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP

MINUTES OF THE FEBRUARY 1, 2004 GENERAL MEETING

DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA

Janis Lopes opened the meeting at 1:30 p.m. by welcoming the sixty people in attendance, five of which were at the meeting for the first time. She highlighted the fact that we were celebrating the 8th Anniversary of our Support Group. Since it was also Super Bowl Sunday, we were altering our program by closing the meeting one half hour early to accommodate those wanting to get home to watch the game.

Tina Nelson read a letter from Georgiana Bell, Executive Director of the RLS National Foundation, thanking us for our recent donation of $255.00 given as a gift to the Willis Daggs Memorial Fund, which is designated for research. This money was raised at our last general meeting.

Robin Shadduck announced the “door prize” drawing to be held later in the meeting as a way of celebrating our anniversary. She expressed thanks to all for contributing to the success of our group these past eight years. The beautiful “Valentine Basket” for the drawing was put together by Janis Lopes.

An array of delicious refreshments provided by various members was served off a beautifully decorated table. Thank you to Margot Smith and Rosemary Speight for their efforts in setting the table with a Valentine theme

Small groups met together for a time of sharing and compiling questions for Dr. Buchfuhrer, to be answered later in the afternoon

Janis read excerpts from “Bill” Tunison’s “How It All Began” telling of her struggle to find help for her RLS symptoms and how our support group was founded. “Bill” was the founder of our group and has been an inspiration to all of us. We thank her for her efforts to form the group and her ongoing contributions to us and to the RLS Foundation. Many have been helped because she took the initiative to start a group.

A short break was then taken where everyone was invited to partake of our anniversary cupcakes which were served off a tiered cake stand made and decorated by Stan Quade. It was very festive and our thanks go to Stan for his contribution.

Dr. Buchfuhrer drew the winning ticket for the door prize, which was won by Advisory Board member, Kei Sakita.   Dr. Buchfuhrer then answered all questions submitted, as well as additional questions from the floor, followed with adjournment of the meeting at 3:45 p.m. by Janis. She announced that the RLS National Meeting will be held in Long Beach, California, September 25-26, 2004.

Respectfully submitted,

Elaine Quade, Secretary

NEXT ADVISORY BOARD MEETING: May 2, 2004 at Mary’s home, 1:30 p.m.

NEXT GENERAL MEETING: June 20, 2004 (Note Date Change) and October 3, 2004


Meeting #31

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP

MINUTES OF THE JUNE 20, 2004 GENERAL MEETING

DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA


Janis Lopes opened the meeting at 1:35 p.m. by welcoming the 43 people in attendance, 5 of which were attending for the first time.  She wished all the fathers a Happy Father's Day and announced that a drawing for the fathers would be held later for a gift basket prepared by a board member.

Janis also shared information about the upcoming National Conference.  It will be held November 13, 2004 in Long Beach, CA at the Hilton Long Beach Hotel, with a welcoming reception on Friday evening, November 12.  She told members to check our website, as well as the Foundation's and the NightWalkers for further information on registration details.

Book and literature table was also mentioned, as well as a thank you for all of the wonderful refreshments provided by members.

Small group discussions were then held where members shared their experiences and compiled questions to submit to Dr. Buchfuhrer.

Prior to the break Janis drew for the basket which was won by Shel Goldstein.   Members then took a short break for refreshments, as well as a time to look over the literature table and meet other members.

Dr. Buchfuhrer was introduced and the next hour was spent answering questions that had been prepared by the members.  After those questions were answered he spent additional time taking additional questions from the members.  One of the highlights of his talk was the mention of the drug Requip being close to being approved by the FDA for RLS.  He also asked members who were interested in a Mirapex study to complete a form.

Meeting was adjourned at 4:00 p.m.

Respectfully submitted by:
Janis Lopes (for Elaine Quade, Secretary)


Meeting #32

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP

MINUTES OF THE OCTOBER 3, 2004 GENERAL MEETING

DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA

Janis welcomed 13 visitors plus approximately 35 other attendees at 1:35 p.m. to our meeting. In asking how they heard about the meeting the following answers were given: a friend, wife, website, L.A. Times, Dear Abby and a nurse. Janis introduced each of the Board members in attendance and told how through their various jobs they served our group. Janis reminded everyone of the upcoming National RLS Conference, November 12-13, 2004 at the Hilton Long Beach Hotel stating that Dr. Buchfuhrer would be one of the key speakers. Information and reservation forms were available for those interested.

Mary Snodgrass gave a short history of how the RLS Educational Guide evolved due to our need for funds to support our group. In 1997 with the help of Dr. Buchfuhrer and his website we put together 50 books and took them to our next meeting. Will and Bob Daggs were instrumental in making books available by supplying covers and other financial support. These books were well received necessitating a 3rd edition and supplement. Complimentary copies have been distributed to many support groups both nationally and internationally. Bob Daggs also made and funded videos about RLS. Ninety-five copies of these have been distributed. We have realized funds from both these avenues. The primary purpose, however, was to make RLS information available to as many as possible.

Robin Shadduck made announcement regarding the P.I.G. (Program Impact Giving) program the National Foundation has started to raise funds. Because of the overwhelming response to receive a piggy bank, it might take awhile to receive yours. We are to put our loose change into the banks for the coming year (Aug. 15, 2004 - Aug. 15, 2005) and at the end of that time are to write a check for the amount collected and mail to the Foundation to be used as you designate. Funds in the amount of $10,000 will be matched by the Foundation. If you join the Foundation, you will receive a free piggy bank. By joining the Foundation, you will receive the quarterly Nightwalkers publication, Medical Alert Card and other RLS up-to-date information as well as help meet the on-going expenses of the Foundation.

Small group discussions were then held, followed by a short break to stretch and have refreshments.

After being introduced by Janis, Dr. Buchfuhrer answered questions received from the small groups for an hour after which Janis closed the meeting. It was decided at the last Advisory Board meeting to shorten the length of our meetings by 1/2 hour and we were able to close at 3:30. Janis thanked those who brought refreshments.

Next Advisory Board Meeting - Saturday, January 8, 2005 at the Quade home.

Next General Meeting - February 13, 2005 - Our 9th Anniversary Celebration.

Respectfully submitted, Elaine Quade, Secretary


Meeting #33

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP
MINUTES OF THE FEBRUARY 13, 2005 GENERAL MEETING
DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA


Janis welcomed many visitors and regular attendees (55) with opening remarks highlighting our 9th anniversary as a support group. Many things have been accomplished through the years that have made our efforts as a group rewarding. Among them was the growth we have experienced since "Bill" Tunison began the work with a handful of people who were suffering with RLS. The main goal was to encourage one another as well as find ways to help others. Since then our group has grown because of the dedication of our Advisory Board and Dr. Buchfuhrer, our sponsor doctor, whose input at our meetings and on the internet has been invaluable. The RLS Manual that was compiled and distributed to so many support groups throughout the country and world has been a successful endeavor for many on the Advisory Board as well as the introduction of the Medical Alert Cards. We hope to expand our efforts to bring awareness and eventually a cure for RLS in the years ahead. We have appreciated the leadership of Janis as our facilitator since she took over that role when "Bill" resigned. The National Foundation has also given valuable assistance and we will strive to partner with them in the goals they have set.

Robin spoke about the benefits of membership in the National Foundation and stated that one of them was the Nightwalkers publication they distribute As a way to encourage membership, the Advisory Board decided to give a one-year subscription to someone at the meeting who was not a member. A drawing was held and one of the non-members won the subscription.

Robin also reminded those who had not obtained their savings piggy bank to write the Foundation for one. The Program Impact Giving (P.I.G.) is a means to save your change and then send a check for the amount to the Foundation for RLS research. She mentioned that Sue was at the table in the back to help with the distribution of free RLS materials as well as selling the Manuals.

Advisory Board members were seated at the tables to help with the small group discussions giving each one an opportunity to share their struggles with RLS as well as encourage them by answering questions they might have.

Next General Meeting - June 5, 2005

Respectfully submitted, Elaine Quade, Secretary


Meeting #33

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP
MINUTES OF THE JUNE 5, 2005 GENERAL MEETING
DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA

At 1:30 p.m. Janis welcomed everyone (approx. 56) to the meeting including several guests who were with us. She announced the Successful Aging Expo to be held in Long Beach in October and encouraged all to attend as well as help out with the RLS display table which will be made available to us. Donations for the 4th printing of the RLS booklet were requested as funds for doing this project are not available. Robin gave an update on the P.I.G. program stating the monies should be sent to the Foundation by Aug.

Janis introduced our guest speaker, Bert Jones, of GlaxoSmithKline pharmaceutical company. He is the Executive Manager for State Programs and Allied Development, State Government Affairs for GlaxoSmithKline covering the states of California, Idaho, Nevada, Oregon, Washington and Wyoming. He is responsible for health policy as it relates to legislation and regulation. He gave a slide presentation entitled “The Value of Medicine”. We thank Mr. Jones for taking the time to speak to our group and informing us of the state of pharmaceutical research by GlaxoSmithKline. He gave us the websites for two groups that assist people in obtaining medications at a savings: helpingpatients.org. and togetherrxaccess.org.

After a break for stretching and refreshments, small group discussions were held to give everyone an opportunity to share their journey with RLS.

Dr. Buchfuhrer returned from Chicago where he was giving an educational RLS presentation to physicians in order to be at our meeting. We are so grateful to him for adjusting his time to present an informational question and answer session for those in attendance. Everyone gleans so much from hearing about solutions to our problems with RLS, especially the data on medications that he is so knowledgeable about.

Janis introduced Ali Joy Sideroff from Hylands, a homeopathic supplement company, who was visiting our meeting to learn more about RLS and how the company might help to find natural ways to treat the symptoms of RLS. Ali Joy Sideroff stayed after the meeting to speak to anyone wanting more information on this topic.

Meeting adjourned at 4:00 p.m.


NEXT GENERAL MEETING: Oct. 9, 2005

Respectfully submitted,
Elaine Quade, secretary


Meeting #34

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP
MINUTES OF THE OCTOBER 9, 2005 GENERAL MEETING
DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA


JANIS welcomed thirty-six members, including six who were there for the first time. Also attending was GlaxoSmithKline pharmaceutical representative, India Rubin.

ROBIN discussed the interesting RLS article in the June 20, 2005 issue of the Wall Street Journal. The article quoted Dr. Buchfuhrer as an RLS specialist. She also announced that Dr. Buchfuhrer would be doing a trial test of Requip XL (extended release). Those interested in participating could sign up at the book table.

JANIS announced the birth of the fourth edition of our “An Educational Guide to RLS” booklet. She thanked the committee for their hard work and as well as those who donated funds for the printing. The Foundation helped to defray printing costs as well.
MEDICAL ALERT CARD – Robin spoke of the card, which has been updated on our website and can be downloaded. She also said that she and Dr. Buchfuhrer were working on making the card as editable text so you can type in the personal information that now has to be written in. She announced you could pick up current cards at the book table.

RLS AWARENESS WEEK was Sept. 19-25. Janis and others shared ways that brought attention to this disease through brochure distribution, media news and mayoral proclamations.

P.I.G. (Program Impact Giving) Robin announced donations were due in August. Send check to Foundation with your contributions.

RLS REGIONAL MEETING - Nov. 11-12, 2005 in Orlando, FL. Janis and Henry will attend and Dr. Buchfuhrer will be one of the speakers.

10TH ANNIVERSARY - Because the date, Feb. 5, 2006, conflicts with the Super Bowl, we will start the meeting early (1:00 p.m.) and dismiss early (3:00 p.m.) and have Dr. Buchfuhrer speak first. Members are encouraged to come with stories and experiences of their RLS to share. Special friends will be introduced. An anniversary cake will be provided by Board member, Rita Storms, but members are welcome to provide additional snacks.

SHELDON GOLDSTEIN, member, read an article about placing a bar of soap under bed sheet for RLS relief. Many members have tried this. Dr. Buchfuhrer said he receives many questions about this also. No conclusions were reached on its success.

SMALL GROUP DISCUSSIONS were held.

BREAK AND REFRESHMENTS - An array of refreshments were available thanks to the contributions by those in attendance. A donation basket was on the table for those wishing to contribute to the expenses of the support group.

JANIS introduced DR. BUCHFUHRER by sharing his RLS travels this year, which included Texas for the launch of Requip; Colorado, for a meeting regarding future FDA approval of Mirapex; Arizona, where he spoke to a group of neurologists for a Requip training meeting. He will be in Florida in November as a featured speaker for the RLS National Conference. She also announced that his book would be published this spring. He then answered questions with a good audience response. He stated his goal for successful treatment of RLS is 90% control of symptoms with proper medications.

MEETING ADJOURNED at 3:30 p.m.

NEXT ADVISORY BOARD MEETING - at the Quade’s home on Saturday, January 7, 2006.

NEXT GENERAL MEETING - February 5, 2006 - our 10th Anniversary.

FUTURE MEETINGS - June 4, 2006 and October 1, 2006.

RESPECTFULLY SUBMITTED by
Elaine Quade, Secretary


Meeting #35

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP
MINUTES OF THE FEBRUARY 5, 2006 GENERAL MEETING
DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA
10TH ANNIVERSARY CELEBRATION

See pictures of the meeting on our Photo Page


Janis opened the meeting at 1:00 p.m. by welcoming everyone, especially the people who had come for the first time (approximately 8). Because this was Super Bowl Sunday, we started the meeting ½ hour early and introduced Dr. Buchfuhrer first on the agenda to answer questions about RLS that the 49 attendees might pose.
Janis introduced several special guests that were with us to highlight our anniversary, which included:

Dr Buchfuhrer, who has been our sponsor doctor since the group first started. His expertise, which he shares at each meeting in such a warm and clear manner, has been the mainstay of our meetings. He also has been instrumental in creating our RLS website and he spends countless hours keeping it current as well as answering all e-mail requests for help in dealing with RLS. For his generous participation in our group, the board gave a gift certificate and a plant for him and his family.

Bob Daggs, our business consultant. He has contributed as a tribute to his father, Willis Daggs, our book covers and medical alert cards and has been available to answer business questions and give guidance for printing needs. Bob shared his involvement with our group through the years, especially about his father who was such a vital part of our advisory board until his death. He received a gift certificate and a plant from the board as a way of showing our appreciation for all he has done for us.
We were also delighted to welcome Lewis Phelps, the new Chairman of the RLS Foundation Board of Directors. He spoke about the direction of the Foundation highlighting the need for matching funds to further research in the future A proposed drive for these funds will soon be launched. He congratulated our group on the excellent work we have done over the past ten years. He also thanked Dr. Buchfuhrer for the excellent website he maintains for the support group.

Board members, Mary Snodgrass and Margot Smith, were honored as they both had recent birthdays. Thanks was given to Mary for handling our membership rolls, mailing of newsletters and help in several revisions of our manual. Her daughter, Sue, has also helped with these jobs as well as manning the book table at our meetings. Margot has recently returned to our Board and we are so pleased to have her back as she has helped us in so many ways, especially with editing our publications. Henry and Stan delivered beautiful bouquets to both ladies.

Lastly, but most importantly, “Bill” Tunison was honored for her involvement in organizing our group and then leading our efforts to bring awareness, offer educational and emotional support and to help find a cure for RLS. She has been an inspiration to all of us. Even though she handed over the facilitator’s duties to Janis Lopes five years ago, she has remained active on our Board. “Bill” gave a thumbnail history of our journey. A red rose and a plant were presented to her along with our heartfelt thanks for all she has done. “Bill” graciously thanked Janis for the excellent job she has done since taking over the leadership.

An “RLS” break with anniversary cake and other refreshments was taken before time was given for personal RLS stories from those in attendance. Thanks to Robin and Margot for being in charge of the beautiful refreshment tables.
Because of the Super Bowl game, the meeting was adjourned shortly after 3:00 p.m.

Respectfully submitted,
Elaine Quade, Secretary


Meeting #36

MINUTES OF THE JUNE 4, 2006 GENERAL MEETING

DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA

Janis opened the meeting at 1:35 p.m. by welcoming those in attendance (27), especially those coming for the first time (3).

ANNOUNCEMENTS: Dr. Buchfuhrer’s book Restless Legs Syndrome: A Guide for Patients and Families, has not yet been released. Book is written by leaders in this field; explains what is known about RLS, including its cause and manifestations, and what can be done to manage it. Specific chapters cover treatments, including drug and non-pharmacologic therapy, RLS in children, lifestyle changes, resources and more; 256 pages.

“Bill” Tunison has improved, but has had a hard year. She very much wanted to attend meeting but was not up to it. Janis encouraged members to use blank cards on table to write a note to her.

Robin: Mirapex will be FDA approved for RLS soon, going much faster than Requip for approval. Shared RLSF response to April 11, 2006 edition of The Times Online, British newspaper which asserted that RLS is “relatively rare” and “exaggerated by the media” as well as “invented to boost profits of pharmaceutical companies.” RLSF states it is important to be prepared to take what could be negative publicity and turn it into positive publicity; will be publishing statement in next Nightwalkers publication.

Janis: West Coast Clinical Trial for Ropinirole XR (extended release) and Neuro-Search research study testing on investigational formulation of a treatment in patients with both evening and nighttime RLS -- information on back table. Foundation is getting involved in the public policy arena; look on website at RLSF Advocacy Center for initiatives it is pursuing; can send letter to Congress. RLS Medical Bulletin's last update was 2005 - it is really valuable to share with physicians. HC Provider Directory no longer done. Now HC Provider membership online; doctors can subscribe to. New books available on RLS: new book by Bob Yokum, former RLSF President - RLS: Relief and Hope for Sleepless Victims of a Hidden Epidemic is on Foundation website. E-mail newsletter is good way to cut costs, since we exist solely on donations. Please complete form and remember to notify of address changes. Interviewed by Kathryn Taylor, writer for CMA Today (Sept/Oct issue); asked how did I feel support groups help; patients can join a support group to feel less alone and to learn from other members and the medical advisors who may be associated with these groups. “To be in a room with people you don’t have to explain your crazy symptoms to is awesome!” Lopes says, “No one tries to offer you a chair if you are standing, or look at you strangely as you stretch or kick your legs.”

 

Page two - Minutes of General RLS meeting, June 4, 2006

SMALL GROUP DISCUSSIONS AND BREAK FOR REFRESHMENTS

Janis introduced Dr. Buchfuhrer by sharing his recent RLS speaking engagement travels which included Seattle, Portland, Las Vegas, Anaheim and Salt Lake City. He maintains our website on a continuing basis, is a soon-to-be published author; medical advisor; and popular speaker. We welcome Dr. Buchfuhrer to discuss RLS and to answer questions those in attendance may have. It was a lively hour. He addressed the London Times article by stating the RLS medical community (doctors connected with Foundation) have decided not to respond, but rather leaving it to RLS sufferers and the Foundation.

Meeting was adjourned at 3:30 p.m. by Janis.

NEXT ADVISORY BOARD MEETING: At Mary Snodgrass’s home on Saturday, August 13, 2006.

NEXT GENERAL MEETING: October 1, 2006

Respectively submitted by

Elaine Quade, Secretary


NEXT GENERAL MEETING: Sunday, October 1, 2006 at 1:30 p.m. 


Meeting #37

MINUTES OF THE OCTOBER 1, 2006 MEETING

DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA


Janis opened the meeting at 1:35 p.m. by welcoming those in attendance (28) along with the three new people who came for the first time. She encouraged people to avail themselves of the literature at the back table.

ANNOUNCEMENTS: Dr. Buchfuhrer’s new book on RLS is almost ready for distribution and Janis hopes to have some available for sale at the next meeting. She stated the RLS National Meeting is to be held in San Antonio, Texas on November 17 & 18, 2006. Janis introduced Janice Hoffmann, who is a member of the RLS National Foundation Board of Directors.

JANICE HOFFMANN: She praised our support group for its active participation not only locally but also with the Foundation and stressed the importance of being involved in order to help others and bring encouragement by sharing your successes and struggles with RLS. Many areas of research are being conducted at John Hopkins, Stanford, Emory, Penn and Harvard and much is in the “pipeline” including the possibility of a patch to administer medications. She said the recent media news on “disease mongering” was addressed in the latest Nightwalkers Publication.

SMALL GROUP DISCUSSION was held with a break for refreshments afterwards.

DR. BUCHFUHRER spent the next hour fielding questions posed by those in attendance. He also gave us the latest information available on RLS advances in medications and other areas of interest. His help and expertise is very much appreciated and makes the meeting very worthwhile for those seeking ways to cope with RLS.

ADJOURNMENT: Janis adjourned the meeting shortly after 3:30 p.m.

NEXT ADVISORY MEETING: Sunday, January 7, 2007 at the Lopes’ home 1:30 p.m.

NEXT GENERAL MEETING: Sunday, February 4, June 3 and October 7, 2007

4th ANNUAL NATIONAL MEETING: November 17 - 18, 2006 in San Antonio, Texas

Respectfully submitted,
Elaine Quade, Secretary


Meeting #38

MINUTES OF THE FEBRUARY 4, 2007 MEETING
DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA


Janis Lopes opened the meeting at 1:30 p.m. stating that this was our 11th year as a RLS support group. She introduced “Bill” Tunison who was the founder, Dr. Buchfuhrer, our sponsor doctor and the Board members who were present: Tina Nelson, Janis & Henry Lopes, Stan & Elaine Quade, Robin Shadduck and Margot Smith. She thanked each one for their significant role as leaders of our group. There were 30 in attendance with 4 visitors present.

ANNOUNCEMENTS:

1) Janis mentioned that anyone interested in making a memorial gift in honor of Mary Snodgrass could do so by sending a check to the Foundation directly or through our group by seeing Tina during the break. Mary was one of our valued board members.

2) Mirapex is now FDA approved as a specific medication for RLS.

3) Dr. Buchfuhrer was interviewed in a recently aired RLS segment on NBC Nightly News.

4) Dr. Buchfuhrer’s book is available for sale today and he will sign books at the break.

GROUP DISCUSSION assisted by our Advisory Board members.
BREAK, REFRESHMENTS AND BOOK SIGNING
QUESTIONS/ANSWERS WITH DR. BUCHFUHRER

Janis, who thanked all those who brought refreshments, adjourned meeting shortly after 3:00 p.m.

NEXT ADVISORY BOARD MEETING: April 22, 2007 at the Quade home, 1:30 p.m.
NEXT GENERAL MEETING: June 3, 2007, October 7, 2007.

RESPECTFULLY SUBMITTED BY
Elaine Quade, Secretary


Meeting #39

MINUTES OF THE JUNE 3, 2007 MEETING
DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA


Janis Lopes opened the meeting at 1:40 p.m. by welcoming all those in attendance. We had 29 present including four who were visiting for the first time. She said more of Dr. Buchfuhrer’s new book were available for sale ($18.00) at the literature table. He will be available to sign them at break time. The RLS National Foundation’s Annual Report (2006) has a terrific picture of our Advisory Board members and our sponsor doctor, Dr. Buchfuhrer, with a quote by Janis. The Foundation’s new theme/logo is “Friends Family Future” and our picture is highlighted on the “Friends” page. Copies of the Report were also available.

Janis introduced the Board members. Those present were Henry and Janis Lopes, Tina Nelson, Kei Sakita, “Bill” Tunison, Stan and Elaine Quade. Janis mentioned the resignation of Robin Shadduck from the Advisory Board as she has relocated to Arkansas. Appreciation for Robin’s contributions to the Board as well as the group was expressed. She will be missed.

Janis was pleased to announce the involvement of longtime Hollywood couple Corbin Bernsen and Amanda Pays, both actors with film and careers spanning more than two decades. They recently joined forces with the National Sleep Foundation (NSF) and GlaxoSmithKline (GSK) to launch “If Your Legs Could Talk,” an educational campaign to raise public awareness for restless legs syndrome (RLS), a neurological condition that can make sleep difficult and profoundly impact quality of life. It has been a dream of “Bill” Tunison, the founder of our support group, to have a famous spoke person for RLS It is nice for her to have that dream realized.

Janis spoke of the need for contributions to meet the financial needs of our support group. A basket is available to donations. Thanks to all who brought refreshments.

Small group discussions were held around tables with a Board members facilitating each group. After a short break, Dr. Buchfuhrer told the audience about all the new research going on to find a cure for RLS or to bring relief from the symptoms. A “patch” (Neupro) has been introduced as well as other medications which might help reduce the symptoms of RLS. A time of questions and answers was held for the next hour. Many positive comments were expressed by those in attendance about the meeting.

Janis closed the meeting at 3:30 p.m.

NEXT ADVISORY BOARD MEETING: Sept., 2007 at the Quade home.
NEXT GENERAL MEETING: Oct. 7, 2007
RESPECTFULLY SUBMITTED: Elaine Quade, Secretary


Meeting #40


Minutes of the October 7, 2007 General Meeting

Downey Regional Medical Center, Downey California

 

The meeting was called to order by Janis at 1:45 p.m. by welcoming those in attendance (14), including one new member.

ANNOUNCEMENTS:  Janis read an excerpt from the Foundation’s press release regarding the gene finding, pointing out the fact that the members were also responsible for this work with their contributions.  She encouraged all to consider joining the Foundation.

SUPPORT GROUP ACCOUNTABILITY:  She announced that signing the sign-in sheets was important as the Foundation needs to know how many attended, as well as what took place at the meeting.

Dr. BUCHFUHRER’S BOOK/SUPPORT GROUP BOOKLET:  She mentioned that both books were still for sale. Three of Dr. Buchfuhrer’s books were sold and he was there to sign them.

SMALL GROUP DISCUSSION:  Due to the smaller number in attendance, the format was changed and the group participated as a whole.  Prepared questions were asked of the group and a microphone was provided as they responded.  Some of the questions related to early experiences with RLS, sharing of tips to help relieve symptoms, what the support group means to members and why they are attending.

This format seemed to worked well with a small group and Janis asked the members to complete a “feedback” card.  Comments were very favorable in continuing with this format and they enjoyed being able to share as a whole group.

DR. BUCHFUHRER:  The final hour was devoted to a lively question and answer period by Dr. Buchfuhrer and members.  The members expressed their appreciation for his expertise and his willingness to attend all our meetings.  It was also mentioned by Janis the many compliments she receives from across the United States on our website and she expressed appreciation for all his time spent on that, as well.

ADJOURNMENT:  Janis adjourned the meeting at 4:00 p.m.

 

NEXT GENERAL MEETING:  Sunday, February 3, 2008

2008 GENERAL MEETING DATES:  February 3, June 8, October 5

 

Respectively submitted,

Janis Lopes (for Elaine Quade)


Meeting #41

Minutes of the February 3, 2008 General Meeting
Downey Regional Medical Center, Downey, California


Janis opened the meeting at 1:10 p.m. by welcoming everyone, including two new members plus 23 others who attended. She shared the evaluation comments from the recent American Society of Health-System Pharmacists held in Las Vegas. Both Dr. Buchfuhrer and Janis spoke at the meeting and were well received. The pharmacists were especially pleased to have Janis, who has RLS, tell of her experience with the disorder. Janis felt it was very educational for the attendees as their comments indicated a desire by the pharmacists to implement changes in their practice as a result of learning more about Restless Legs Syndrome.

Janis also read portions of e-mails from members of the support group who shared their very moving reasons for keeping the support group active. Janis indicated she would continue the support group because of the positive response she had received and expressed her gratitude to the members for being willing to share so passionately.

The meeting then moved into a group discussion led by Janis. She posed questions to the members and asked for their response from their personal experience. The last hour of the meeting was devoted to Dr. Buchfuhrer as he answered questions submitted from those in attendance.

Dr. Buchfuhrer’s books were available from Tina for those interested in purchasing one.

Janis thanked those who had brought snacks to share. Since it was Super Bowl Sunday, the meeting closed at 3:00 having started early at 1:00 p.m.

Next Advisory Board Meeting - no date has been set.
Next General Meeting - June 1, 2008
Future General Meeting - October 5, 2008

Respectfully submitted,
Elaine Quade, Secretary


Meeting #42

MINUTES OF THE JUNE 1, 2008 GENERAL MEETING
DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA


Janis opened the meeting at 1:40 p.m. by recognizing the Support Group Board members that were present: Henry and Janis Lopes, Tina Nelson, Stan and Elaine Quade, Kei Sakita, and “Bill” Tunison. She welcomed everyone to the meeting - about 25 in all. Also in visiting with us today was Janice Hoffman, Chair of the RLS Foundation Board of Directors.

ANNOUNCEMENTS
Janis reminded everyone that the RLS Foundation has decided to have Regional meetings in the future instead of one large national meeting in the hopes that it will attract more attendees. They will be held in Chicago, Atlanta and San Francisco. The one in San Francisco will be Saturday, August 23, 2008. Everyone is welcome and encouraged to attend. Janis has found them to be worthwhile. Dr. Buchfuhrer will be a speaker.

The Neupro patch has been recalled until further notice. Apparently, there was a problem with the drug crystalizing on the patch rendering them less effective.

A “Tribute Card” is available on the tables for those who want to make a donation to the RLS Foundation honoring someone. Janis will mail all contributions together that are made at the meeting today.

The last edition of the So. Cal. support group booklet are available for $5.00.

NEW FORMAT
As everyone seemed to like the idea of staying in the large group instead of splitting up into small ones, we will continue to conduct our meetings that way in the future. It gives everyone a chance to hear and react to stories and comments by the entire group. Janis posed the following questions to stimulate comments:

1) How does sleep deprivation control your life?
2) If you believe certain foods trigger your RLS, what are they?
3) Has your doctor’s advice changed from your 1st visit to a more recent one?
4) How about marijuana treatment for RLS?
5) What creative things do you do when RLS medications don’t work?

There was lively discussion about all these topics and questions were prepared for Dr. Buchfuhrer’s question and answer session. Our guest, Janice Hoffman, offered information on several of the subjects discussed.

Janice Hoffman encouraged those who don’t have membership in the RLS Foundation to do so as it is good source of information . She mentioned the “Moonlight Walk” to help raise awareness about RLS. She will find out more information about it to see how our group could participate.

Janis introduced Dr. Buchfuhrer. He told us about a Focus Group that will need volunteers to try out a device that has been developed to help alleviate RLS symptoms. It is to be used while resting or sleeping and can be placed on any part of the body. It is a counter pulsation technique - a vibration pad. A sheet was passed to the group for those to indicate their willingness to try the device for a week - several signed up. Dr. Buchfuhrer will contact the volunteers as soon as the device is ready for use. A stipend of $200 will be given to those who are chosen for the trial.

Dr. Buchfuhrer answered questions about the device in addition to others that were posed to him.

Janis thanked those that brought refreshments which were enjoyed during the break.

NEXT ADVISORY BOARD MEETING: August 24, 2008

NEXT GENERAL MEETING: October 5, 2008

Meeting was adjourned shortly after 3:30 p.m.

RESPECTFULLY SUBMITTED BY
Elaine Quade, Secretary


Meeting #43

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP
MINUTES OF THE OCTOBER 5, 2008 GENERAL MEETING
DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA

The meeting was opened at 1:35 p.m. with Janis recognizing everyone for coming, including several new members. She also recognized attending board members, Margot Smith, Tina Nelson, Pat Adam, Elizabeth “Bill” Tunison, and Henry Lopes. 27 members were in attendance.

ANNOUNCEMENTS
Janis announced the following:

• Janice Hoffman, RLSF Board Chair, is hosting meetings in Claremont on the second Saturday of each month at The Claremont Club. This is not a support group, but they will discuss RLS issues.
• new drug application for Solzira, a drug for moderate to severe RLS
• ropinirole (Requip) has been approved for use in generic form
• more awareness in the field of CAM (complimentary and alternative medicine)
• people needed for new focus group study for device to alleviate RLS
• support group booklet for sell for reduced price
• Dr. Buchfuhrer’s new email address
• the passing of Dr. Wayne Hening

GROUP DISCUSSION

Members participated in an extremely lively and stimulating discussion as Janis presented questions and gave all an opportunity to respond. This is done as an entire group discussion and is well received. The following questions were discussed:
• How do you deal with well meaning friends who offer suggestions as to how to “cure” your RLS?
• If your RLS is under control, do you still have problems with sleeping?
• Do you have an opinion about alternative medicine?
• Is your RLS under control or do you have setbacks? If so, describe them.

Members then took a short break anticipating the question/answer discussion with Dr. Buchfuhrer for which they had prepared questions for.

After waiting for approximately 20 minutes for Dr. Buchfuhrer to arrive, Janis asked members if they would like to continue discussing in small groups as they were doing during break, or would they like to continue with the entire group answering more questions presented by her. They all wanted the latter, so the group finished out the meeting with the following questions:

• What is perhaps the most valuable information or advice you have received at a support group meeting?
• How did you find out you had RLS?
• What do you do to “spread the word” about RLS?

As Dr. Buchfuhrer failed to arrive, the meeting was adjourned at approximately 3:15 p.m. with Janis thanking everyone for their flexibility to change the meeting and for their enthusiastic support of each other with their responses to questions.

ADDENDUM: It was determined that evening in a response from Dr. Buchfuhrer to Janis’ email that that due to an on-call schedule change at the hospital and busy the day before running a workshop for doctors that he quite simply, though thoroughly embarrassed, forgot the meeting. He humbly apologizes to all and is eagerly looking forward to our next meeting, at which time he will answer questions that were prepared for this meeting. It was suggested by him that a reminder email would be helpful so in the future it will be done. Janis graciously accepted his apology on behalf of the members.


NEXT ADVISORY BOARD MEETING: January 11, 2009

NEXT GENERAL MEETING: February 15, 2009

RESPECTFULLY SUBMITTED BY
 

Elaine Quade, Secretary 


Meeting #44

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP
MINUTES OF THE FEBRUARY 15, 2009 GENERAL MEETING
DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA

Our 13th anniversary meeting was opened at 1:35 p.m. by Janis Lopes. She welcomed several new members who had driven from various locations throughout the Southern California area. There were 30 in attendance.

As this was the first meeting since “Bill” Tunison’s death, we wanted the meeting to be in her honor. Janis gave a brief history of our Support Group citing how “Bill” was the one who began the group. She put many hours into meetings where guidelines and ideas were presented. An Advisory Board was established to help her in her efforts to provide help to those suffering from RLS. This was in 1996 and the work under Janis has continued.

Janis Lopes gave a short talk about her memories of “Bill” as did Elaine Quade, Tina Nelson and Margot Smith, who were all members of the original Advisory Board. “Bill” was an inspiration to all of us and will be greatly missed by all who knew her. Her shoes will be hard to fill but we will strive to educate and encourage those that attend our quarterly general meetings. Janis mentioned that a Memorial has been set up by the National RLS Foundation if any would like to honor her with a donation.

During the group discussion Janis posed several questions and invited any interested to share their thoughts with the group. As always, it was a lively discussion as members shared;

A short break was taken to stretch and get something to eat.

Janis introduced Dr. Mark Buchfuhrer, who told us how he became involved as our sponsor doctor and speaker. He first spoke in 1996 at the urging of “Bill” and has been faithfully available to inform us of the latest information on RLS and the medications that help to alleviate the symptoms. He is very much appreciated by the Board and all the members that hear him speak.

The meeting was adjourned at 3:30. Janis thanked Margot for decorating the refreshment table and also those that brought something to share at the break.

Respectfully submitted,
Elaine Quade, Secretary

NEXT ADVISORY BOARD MEETING: April 19, 2009

NEXT GENERAL MEETING: May 31, 2009


Meeting #45

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP
MINUTES OF THE MAY 31, 2009 GENERAL MEETING
DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA

The meeting was called to order by Janis Lopes at 1:45 p.m. Twenty-five persons were in attendance with a few there for the first time. Members were asked to introduce themselves, their city, and when they learned they had RLS. It is most interesting how far some travel to attend. Janis also asked how they had heard about the meeting. The internet seems to be how most people hear. Janis introduced the Board members and shared how long they had been attending the meetings.

A time of sharing was held as Janis posed questions to the audience and those who wanted to could answer. Some of the questions were:

What do you do when you see people in public places, i.e.; restaurants, displaying RLS symptoms? Do you approach them?
Do you feel more validated now because of more public knowledge about RLS?
Do\your RLS symptoms get better or worse based on the weather?

Member responses created very interesting and lively discussions. Sometimes their responses took us in new direction and that was welcomed as members learn from each other how to cope better. The purpose was to learn how to cope with RLS in different situations with the hope it would help others and that was achieved.

We enjoyed a short break for a stretch and to sample the many refreshments brought by many of those in attendance. A big “thank you” to Margot Smith and Henry Lopes for decorating the table and making the punch. The hospital provides our coffee, as well as the ice for our cold drinks. It is most appreciated.

Janis introduced Dr. Mark Buchfuhrer who answered questions submitted by the members, as well as additional questions from the floor. As always, his responses were full of interesting and useful information on various aspects of RLS.

Meeting was adjourned at 3:30 p.m.

Respectfully submitted,
Elaine Quade, Secretary

NEXT ADVISORY MEETING: August 23, 2009 at the home of Pat Adams in Huntington Beach.
Time is 1:30 p.m.

NEXT GENERAL MEETING: October 4, 2009


Meeting #46

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP
MINUTES OF THE OCTOBER 4, 2009 MEETING
DOWNEY REGIONAL MEDICAL CENTER, DOWNEY, CALIFORNIA

 

The meeting was called to order by Janis Lopes at 1:40 p.m.   Several visitors  were present and Janis welcomed each one.  The Board members were recognized.  All but Margot Smith were present.  Margot had surgery and was still convalescing, therefore could not attend the meeting.  We all missed having her with us and wished her a speedy recovery.

Janis introduced Gwen Hards, support group member, who related her personal experience with the use of medical marijuana to help her cope with severe RLS.  She covered such topics as first seeing her doctor for needed letter, visiting smoke shop to buy it, using vaporizer to inhale, what form it comes in, cost, side effects, etc.  Afterwards she opened the meeting up for questions from those in attendance.  This topic invariably comes up at each of our meetings.  It was one of our groups most interesting sessions.  Dr. Buchfuhrer came early so he could hear as well as participate in the discussion.  It became a very much-needed education about the use of marijuana as a treatment for RLS symptoms.

Marijuana is legal in the state of California for medicinal purposes only (Prop. 215, passed November 1996) and can be obtained by going through the proper channels here.  Prior to Gwen speaking, Janis read an email from Georgi Bell, Executive Director, explaining that a disclaimer had to be announced, but also that the foundation had received numerous letters from members sharing similar positive experiences such as Gwen’s.

Janis thanked Gwen for her willingness to share her story and commended her for her courage in doing so.

A break/refreshment time was taken before Dr. Buchfuhrer spoke fielding questions from those that had submitted them.  Many revolved around the marijuana issue.  As always, Dr. Buchfuhrer answered each question in a clear and understandable way much to the appreciation of everyone.

Thanks were expressed to those who brought refreshments.

Meeting was adjourned at 3:30.

Respectfully submitted by:
Elaine Quade, Secretary

NEXT ADVISORY BOARD MEETING:  January 10, 2010 at the home of Elaine Quade

NEXT GENERAL MEETING DATE:  May 23 and Oct. 3, 2010 


Meeting #47

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP
MINUTES OF THE MAY 23, 2010 MEETING
WHITTIER HILLS BAPTIST CHURCH, WHITTIER, CALIFORNIA

The meeting was called to order at 1:40 p.m. by Janis. She welcomed those in attendance (35) including seven who had not attended before. We were all encouraged by the numbers as it means we are reaching those that need such a group as ours for encouragement and learning. All of the Board members were there, except for Margot Smith, and Janis introduced them. We held our meeting at the church because Downey Hospital was closed to us for the unforeseeable future.

The first part of the meeting was devoted to discussing the need to find another location for our meetings. Although the church location is not freeway friendly, it was acceptable to many. Other suggestions were made including Community Hospital of Long Beach. A member, Kathy Church, has a contact there and will check to see if we could meet in one of their rooms. A number of places charge a fee for use of facilities and that is not readily acceptable to us.
Janis will continue to check out facilities as will Elaine at the church.

A break was taken for refreshments.

The remainder of meeting was with Dr. Mark Buchfuhrer. He graciously answered questions from those who have problems with RLS symptoms. This is a helpful time for all who attend and we’re grateful for Dr. Buchfuhrer who brings us up-to-date on new medications for RLS and news from the Foundation.

Meeting was adjourned at 3:40 p.m.

Respectfully submitted,

Elaine Quade, Secretary

Next Advisory Board Meeting: August 2010
Next General Meeting: October 3, 2010


Meeting #48

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP
MINUTES FOR OCTOBER 3, 2010
COMMUNITY HOSPITAL OF LONG BEACH

The meeting was called to order by Janis Lopes at 1:30 p.m.   This was our first meeting at the new location.  The hospital has graciously donated the use of their auditorium for our meeting and Janis expressed our gratitude to Kathy Church, support group member, for being our liaison. 

There were 25 in attendance, of which almost half were new members.  Board members present were Henry & Janis Lopes, Pat Adam, Margot Smith, Tina Nelson, Stan & Elaine Quade.

Janis welcomed everyone and had the new members share how they heard about the meeting.  Most learned of the meeting either through the Foundation flier that was mailed to area residents or from the Foundation website.

As part of the announcements, Janis encouraged those who were not members of the Foundation to avail themselves of the opportunity.  She shared the benefits of being a member, i.e. NightWalkers publication, email updates, and receiving current news on any research breakthrough.  Cost is $30 a year.

After announcements, Janis began the meeting by sharing a member's story, as well as her own, about learning to live with not only RLS, but other conditions as well.  She then opened it up to members to share.  Questions were also asked about the worst public experience with RLS that members remembered and how it made them feel.  Before break, Janis brought attention to a new “Special Accommodations" card developed by the foundation and now available to members.  It is designed to assist you with special seating during travel, theater, dining, etc.   More cards are available at the Foundation website.

After break, Dr. Mark Buchfuhrer was introduced by Janis and spent the next hour answering questions that had been posed in writing and then he opened it up to further questions from anyone in the audience.  As always, many questions were asked by members and answered by Dr. Buchfuhrer in a clear and precise manner.  Our appreciation was expressed to him for his willingness to sponsor our group and to keep us informed of any new developments in the quest to find relief from the symptoms of RLS as well as finding a cure.

Janis thanked those who brought refreshments.  She adjourned the meeting at 3:30pm.

NEXT ADVISORY BOARD MEETING:  January 2011 at the home of Stan & Elaine Quade

NEXT GENERAL MEETING:  February 20, 2011

RESPECTFULLY SUBMITTED.

ELAINE QUADE. SECRETARY


Meeting #49

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP
MINUTES FOR JUNE 5, 2011
DOWNEY REGIONAL MEDICAL CENTER

Janis opened the meeting at 1:45pm.  It was our first meeting at Downey Regional Medical Center in over a year.  We had moved to Community Hospital of Long Beach after DRMC informed us we could no longer meet at their facility.  We returned when we were invited back.

25 were in attendance, including 9 new members.  Board members present were Janis & Henry Lopes, Tina Nelson, & Kei Sakita.

Janis shared announcements including information on the new FDA approved drug, Horizant, and information on the official name change from Restless Legs Syndrome to Willis-Ekbom Syndrome which will take place officially on September 23, 2011.

As our group discussion started, Janis encouraged the group to ask each other questions instead of using the prepared questions.  They were quite willing and a very lively discussion followed on such topics as methadone, medical and edible marijuana, as well as the many drugs available for RLS.  A lot of the time focused on when to take any medication. 

After a short break, the meeting reconvened with our Medical Advisor, Dr Mark Buchfuhrer, answering questions submitted by members.  Topics included marijuana, methadone, Lyrica and weight loss, Horizant & Abilify.  As always, members were attentive and receptive to the knowledge of Dr. Buchfuhrer.  After the submitted questions were answered he took additional questions from the floor.  He was thanked by all for his dedication to our support group;

Janis thanked all who came and for their refreshment donations and reminded the members of the next meeting on October 2.  Meeting was adjourned at 3:40 pm.

NEXT GENERAL MEETING:  Sunday, October 2, 2011

RESPECTIVELY SUBMITTED,

JANIS LOPES, SUPPORT GROUP LEADER

For

ELAINE QUADE, SECRETARY

 



 

Medical Director
Mark J. Buchfuhrer, M.D.

Support Group Leader
Janis  Lopes

ADVISORY BOARD
Henry & Janis Lopes
Tina Nelson
Stan & Elaine Quade
Kei Sakita
Margot Smith
Pat Adam



Honorary, Deceased
Will Daggs
Nona Maloney
Mary Snodgrass
Elizabeth "Bill" Tunison, Founder
 

National RLS Foundation Medical Advisory Board (1999-2005, 2008-Present)
International RLS Study Group
Editor of RLS Foundation NightWalkers Newsletter
Member of the RLS Foundation's Scientific Bulletin Task Force
Mark J. Buchfuhrer, M.D.


Meeting #49

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP

MINUTES FOR OCTOBER 2, 2011

DOWNEY REGIONAL MEDICAL CENTER

Janis opened the meeting at 1:45pm.  18 members were present, including board members Kei Sakita, Tina Nelson, Janis & Henry Lopes and speaker, Dr. Mark Buchfuhrer.

ANNOUNCEMENTS:

OPEN DISCUSSION:

Q/A – DR.  MARK BUCHFUHRER:

CLOSING:

 

Respectively submitted by:

Janis Lopes. Support Group Leader for

Elaine Quade. Secretary


Meeting #50

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP
MINUTES FOR FEBRUARY 12, 2012
DOWNEY REGIONAL MEDICAL CENTER

Janis opened the meeting at approximately 1:50 pm by welcoming all members.  22 were present, including 3 new members, with Janis & Henry Lopes representing the board.   She first apologized for the confusion regarding whether there would be a meeting due to lack of RSVP’s.   Announcements were then made regarding Dr. Buchfuhrer’s absence from the meeting, RLS name change, RLSF new address, and read excerpts from an article entitled “Who comes up with these silly names?”, obtained from the RLS website.

Janis then opened the group discussion by having members introduce themselves and share what city then lived in.  It was noted that members sometimes travel a great distance to attend.  She then posed the question “Do you remember when you came out of the closet with regards to your RLS and were you able to talk to non-RLS people and if not, why not?”  That question opened up a larger discussion with a variety of topics being discussed.

After a brief break the meeting reconvened and due to Dr. Buchfuhrer absence, we welcomed as a guest speaker, Dr. Clara Yu, D.O., a second year chief resident of the Family Medicine Program at Downey Regional Medical Center.  She addressed the topic of sleep, something that all RLS sufferers can relate to.  She first posed questions to our members regarding the myths of sleep.  Each question generated a lively discussion among members.  Dr. Yu was very responsive with questions posed to her and ended her talk by having members learn a yoga exercise that could possibly benefit their sleep routine..

Janis thanked Dr. Yu for coming and the members showed their appreciation as well.  She thanked members for their attendance and participation and encouraged all to attend the next meeting on June 3, 2012. Meeting was adjourned at 3:30 pm.

NEXT GENERAL MEETING:  SUNDAY, JUNE 3, 2012

RESPECTIVELY SUBMITTED,

JANIS LOPES, SUPPORT GROUP LEADER

FOR ELAINE QUADE, SECRETARY


Meeting #51

SOUTHERN CALIFORNIA RLS EDUCATIONAL SUPPORT GROUP
MINUTES FOR JUNE 3, 2012
DOWNEY REGIONAL MEDICAL CENTER
 

The meeting was opened by Janis at 1:40 pm by welcoming all attending, which was 24, with no new members.  Board members present were Tina Nelson, Kei Sakita, and Henry & Janis Lopes.  Announcements were made promoting the RLSF Nightwalkers, the benefits of becoming a member, and the FDA approval of Neupro. 

The meeting was then opened for group discussion by asking members to make suggestions or pose questions to the rest of the group.  Gwen Hards, member, posed the first question regarding what members did to relieve RLS symptoms in the middle of the night, specifically with food.  A discussion followed with several members participating.  Janis asked Gwen if she would share an update on her experience with medical marijuana.  This generated several questions and lots of good discussion. 

After a brief break, everyone was ready for our medical advisor, Dr. Mark Buchfuhrer, to answer the questions prepared during the discussion.  He was introduced by Janis by sharing some of his additional volunteering activities, as well as revealing that he is quite the cyclist, having participated in several races of over 100 miles each and will also be riding in another in July.  Our support group is fortunate to have such an involved doctor to support us.  He answered all the questions submitted on a variety of topics.  It is always amazing to find that our members can ask questions that have not been asked before and as a result all receive new information at each and every meeting.   This meeting was no exception and after answering all the prepared questions, more were asked from the floor. 

Janis thanked all for attending and reminded them of the next meeting on October 7.  The meeting was then adjourned at 3:30 pm.

 

NEXT GENERAL MEETING, SUNDAY, OCTOBER 7, 2012.

RESPECTIVELY SUBMITTED, 

JANIS LOPES, SUPPORT GROUP LEADER

FOR ELAINE QUADE, SECRETARY


Meeting #52

Southern California RLS Educational Support Group

Minutes for October 20, 2013

St. Mary's Hospital, Long Beach, CA

This meeting was the first meeting of the Southern California WED/RLS support group since October 2012. The meeting was held at a new location, the Health Enhancement Center at St Mary Medical Center in Long Beach, offering a modern and spacious facility with the services of a Call Center for accepting and confirming reservations. This location is also home to a senior center which boasts a membership of over 3200 seniors. The support group meeting benefitted in that it was publicized in the St Mary seniors monthly newsletter, Senior Connections. A total of approximately 60 persons attended the meeting.

Upon sign-in, each attendee received a Medical Alert card for their personal use. There were also various materials available at the sign-in table, including brochures, handouts and prior newsletters from the Willis-Ekbom Disease national foundation. A questionnaire was disseminated as well.

The meeting came to order at 1:10 pm and the new support group leader, Susan Schlichting, went over the agenda and discussed the group’s ground rules. The meeting included a breakout session during which the attendees got to know each other a little. This session was led by Mary Jo Enyeart, a volunteer who has lived with RLS for over 25 years and over 35 years of teaching experience. The attendees separated into teams of 6 to 10 persons per table and shared their RLS triggers and how they coped. Lists of the triggers and coping mechanisms were captured on easel paper and are included in the meeting materials.

The meeting concluded with a Question and Answer session led by the support group’s medical advisor, Mark Buchfuhrer, M.D. A link to the videotape of this session is in the final stages of edit and will be provided on the www.rlshelp.org website soon.

The meeting was adjourned at 3:50 pm.

Twenty attendees completed the questionnaire that was disseminated at the beginning of the meeting. 45% of those responding have had RLS for 21 years or more. 95% felt that access to a medical advisor during each support group meeting was essential. More than 50% of the respondents traveled 16 or more miles to the meeting and two attendees traveled from San Diego and Santa Barbara, respectively. 65% of those responded wanted to meet either once a month or quarterly, while 35% wanted to meet every six months or once a year. 63% disagreed or strongly disagreed that future meetings should be held over the internet, and 67% of those responding who were not members of St Mary’s wellness center disagreed or strongly disagreed that the $5 parking structure fee was a hardship. Further details of the survey (“Questionnaire Results”) are provided in the meeting materials.

A total of $40 was donated to reimburse the local volunteers for refreshments during the break.

Discussion topics Outbrief: Click this link

The next meeting’s particulars are TBD. All attendees will receive early notice of same.


Meeting #53

Southern California RLS Educational Support Group

Minutes for April 6, 2014

St. Mary's Hospital, Long Beach, CA

The meeting was held at the Health Enhancement Center at St Mary Medical Center in Long Beach. A total of approximately 38 persons including spouses, other family members and friends, attended the meeting.
Upon sign-in, each attendee received a Medical Alert card for their personal use. There were also various materials available at the sign-in table, including brochures, handouts and a synopsis of the 2013 Patient Odyssey results, all provided by the Willis-Ekbom Disease national foundation.

The meeting came to order at 1:00 pm and the support group leader, Susan Schlichting, went over the agenda, mentioned the nature of the support group, membership in the National WED/RLS Foundation and the 2013 Patient Odyssey survey results.
In order to promote awareness and education of the disease, an “RLS Basics” quiz was played amongst the attendees. Those attendees with the highest scores received free six-month trial memberships in the National Foundation, compliments of the Foundation.

The next activity was a breakout session, led by Mary Jo Enyeart, during which the attendees broke into smaller groups and shared how RLS affected the quality of their lives and ways they coped. Their experiences were summarized on easel paper and are included in the meeting materials.

The meeting concluded with a Question and Answer session led by the support group’s medical advisor, Mark Buchfuhrer, M.D.

Read more about the meeting agenda and Quiz/Answers: Click this Link

Discussion topics Outbrief: Click this Link

The meeting was adjourned at 3:50 pm. It was announced that the next meeting is scheduled to take place on Sunday, October 5th, 2014, at the same time and place. For those persons who do not have email addresses, it was requested that they send a self-addressed stamped envelope to be notified of future events.


Meeting #54

Southern California RLS Educational Support Group

Minutes for October 5, 2014

St. Mary's Hospital, Long Beach, CA

Meeting Summary:

The meeting convened at 1:10 pm.  Ms. Schlichting opened with introductory remarks and a slide showing the Foundation Wordle. The agenda was displayed indicating that the meeting would depart from the programming of the past two meetings.  Whereas a workshop segment was usually conducted where attendees split up into smaller groups and shared experiences, that time slot would be filled by a special guest speaker, Dr. Fred Burbank.  Dr. Burbank was on the agenda to discuss his research into the improvement of sleep for WED/RLS sufferers and his invention, a counterstimulation treatment, for WED/RLS.  The invention, a vibration pad, is the first FDA-approved nonpharmacological aid for the treatment of primary WED/RLS.  In addition, the medical director for the support group, Dr. Mark Buchfuhrer, would be leading a Q&A discussion afterwards. Dr. Buchfuhrer has been the medical director of the support group from its inception and, with his special expertise, vision and generosity, makes attending the support group a unique experience.  It was mentioned that Dr. Buchfuhrer is listed as one of the authors of Parts 1 and 2 of the original research and helped perform the clinical trials for the vibration pad invented by Dr, Burbank.  Ms. Schlichting stated that while the WED Foundation does not recommend or endorse any specific tests, products or procedures, it agreed to allow us to use this forum to expose the attendees to a first-of-its-kind device and afford them the opportunity to ask questions of the inventor and medical director to help the attendees further evaluate the information provided.  The sign-in register showed a total of 52 attendees.  The meeting was adjourned at 4pm.

Meeting Details:

Dr. Burbank used his experience as an RLS sufferer to entertain the audience, using comic relief and graphic slides.  He gave us a fresh perspective of Willis and Ekbom and the value of their contributions to the field. He enthusiastically distilled the basis of his research into information comprehensible to the lay person.  Dr Burbank's invention is truly groundbreaking and his presentation captured the imagination and offered new hope to many.  His appearance attracted the attention of even the most knowledgeable members of the audience, some of whom were long term support group members and who drove more than two hours to attend the lecture.  A patient who had been using the pad for a few weeks was at the meeting and shared her experiences and answered questions to the delight of the attendees.  In addition, a demonstration pad was available for touching and feeling.   Rounding out the meeting, Dr Buchfuhrer led an additional Q&A that clarified and provided more in-depth information pertaining to the pad as well as other more traditional areas of patient inquiry, e.g., pharmacological treatments, dosages, iron infusion therapy and augmentation.

One of the volunteers. MJ Enyeart, worked the sign ins and other front desk functions and donated appetizer-type snacks, and another volunteer, C Weinstein, brought pastries and coffeemakers for regular and decaf coffee with all the accoutrements, which proved more popular than the bottled water.  We received $30 in voluntary donations from the attendees to help defray expenses for printing and mailing flyers and postcards and other snacks and bottled water.  Sensory Medical paid directly to the publisher for an announcement that went into a large metropolitan newspaper in Long Beach with a circulation of over 250,000, the Long Beach Press Telegram.  The announcement adhered exactly to our flyer with the exception of the left margin WED/RLS criteria.  All in all, the meeting was a resounding success, although given the guest speaker and the stepped-up publicity, a larger audience was anticipated.

Dr. Fred Burbank’s talk/slide presentation: CLICK HERE


Meeting #55

 

Minutes to So California WED/RLS Support Group Meeting, April 19, 2015

 

Long Beach Community Hospital, Long Beach, CA

 

Meeting Summary:


The meeting convened at 1:10 pm.  Ms. Schlichting opened with a story illustrating how widespread ignorance about WED/RLS still exists and how it is frequently brushed off as a figment of someone’s imagination.  Quoting RLS pioneer Virginia Wilson, she said that it is “up to us to insist that so-called ‘minor’ sleep disorders are taken seriously.”  Each of us has the responsibility to educate ALL of our doctors.

It was noted that 33 persons were in attendance.  Based on an informal headcount, more than half of the group had never attended a meeting of the support group before.

After the agenda and nature of the support group were discussed, a letter by Chairman of the Board Bob Waterman from the NightWalker Winter 2004 issue was read.  The letter touched on various issues that are relevant to this day, including the dearth of knowledgeable physicians, the multitude of treatments with which each patient is confronted, and potential effect from dopaminergic drugs called augmentation.  The letter drew heavy applause. 

 

The large group then formed seven break out groups to discuss two topics: 

       How have you changed or altered your lifestyle due to your RLS?

       When did you first learn you had RLS and who diagnosed you?

 

After the table captains reported highlights from the topic discussions, there was a break after which Dr. Mark Buchfuhrer led a Q&A discussion.  In her introduction of him, Ms. Schlichting pointed out that Dr. Buchfuhrer had been the medical director of the support group from its inception, totaling about 19 years.   It was also mentioned that, besides his numerous credentials,  Dr B was also featured in an article called “Allaying Augmentation” in the February 2015 issue of Sleep Review, A Journal for Sleep Specialists.   The meeting ended with applause for the doctor.  The meeting was adjourned at 4:30 pm.  (Although the meeting was set to end at 3:30 pm, as usually the case, the doctor stayed until all questions from the attendees, both written and voiced, were answered. )

Meeting Details:

Here is a sample of some of the questions that were asked of Dr. Buchfuhrer:

Does extended release Requip also induce augmentation?

Is it possible for restless legs symptoms to be on your face (i.e.,upper lip, up to your eyes, creepy crawly feelings)?\

I am currently under the care of a neurosurgeon, but he doesn’t seem very knowledgeable about RLS.  What type of physician would you recommend to seek for treatment?

Has anybody had bad side effects to Horizant?

Are there links to Parkinson’s disease?  (brother has Parkinson’s, father and I have restless legs)

Is it worthwhile to check out and try a yoga posture to ease the RLS?  Any feedback?

Standing for a long time seems to make my RLS worse.  Is it true?

Magnesium injections (intravenous) are given to relax the body and reduce RLS symptoms.  (Please comment.)

Should Mirapex be the cause of extreme daytime drowsiness?

Are there events or foods, etc,. that trigger RLS or is it an individual event?

Does long term use of low dose narcotics  for RLS lead to dementia or an increase in heart attacks?

Do more women or men have RLS?

Does the new “restless leg” pad help patients?

What is your opinion of medical marijuana and were your patients able to get off other drugs and just use marijuana?  There are two kinds of marijuana – What about using the one with high cannabinoids?  Also, is vapping okay?

How much Mirapex can be (safely) taken?

Has there been any success using acupuncture to ameliorate RLS symptoms?


Respectfully submitted,

S. Schlichting


Meeting #56

Minutes to So California WED/RLS Support Group Meeting, October 4, 2015

Long Beach Community Hospital, Long Beach, CA

Meeting Summary:

The meeting convened at 1:00 pm. Sue Schlichting, the support group leader, indicated that she was going to try something new and different for this meeting, that one of the guests is a leader from the scientific research community. She went on to explain that the organization structure of the RLS Foundation consisted of a Medical Advisory Board (MAB) and a Scientific Advisory Board (SAB) and described their respective functions. It was further mentioned that a key person in developing the latter Advisory Board was one of the early Chairmen, Bob Waterman. (He coauthored In Search of Excellence,) He knew a man named Bruce Alberts, a molecular biologist at UCSF, and later the President of the National Academies of Science (he’s in his 70’s now) Dr. Alberts said: "You’ll never get anywhere on cause and cure unless scientists are involved." "You’re an interesting problem," he told Waterman, and the combination of interesting colleagues and an interesting problem is like catnip to top scientists." Finally, it was mentioned that the fruits of the collaborative efforts between the two Boards have led to the formation of the RLS Brain Bank and scientific advances such as the linkage between iron-deficiency and the RLS brain, and sites of possible genetic abnormalities.

It was mentioned that when someone becomes a Foundation member, they will receive four issues of the NightWalker a year plus they have access to all past editions. The newsletter has excellent articles and covers the waterfront including alternative therapies and Medical Marijuana for RLS. There have also been excellent free webinars hosted by the Foundation including one on Augmentation. It was noted that there is one coming up on Wednesday, October 28, called, "What’s New in RLS Research" presented by Lynn Marie Trotti, MD, assistant professor of neurology at Emory University School of Medicine and a member of the Foundation’s medical Advisory Board.

Approximately 35 persons were in attendance. Due to technical difficulties with the projector, there was only time in the program for two guests, Y.Y. Lai, PhD. and Mark Buchfuhrer, MD. (There was no time for group break outs.)

Karla Dzienkowski, Executive Director of the RLS Foundation, honored us with a surprise visit. We were sorry that there wasn’t time for her to share some remarks with our group (and would enjoy the opportunity in the future!). The meeting was adjourned at 3:30 pm. )

Meeting Details:

The meeting slides as well as handouts from Dr. Lai are attached.

IRLSSG White Paper on Augmentation :

Augmentation is a phenomenon whereby drugs (dopaminergic) can specifically worsen RLS severity. The IRLSSG White Paper reaches a consensus among the International RLS Study Group, the European RLS Study Group and the RLS Foundation on the prevention and treatment of augmentation. Copyright forbids reproduction but a copy at the back table was available for review and you can look at it and download it here.  It was mentioned that Dr. Buchfuhrer is one of the 13 members of the task force and that we’re lucky to be able to tap him because his office is relatively speaking a short distance from here and he is willing to give generously of his time

Presentation by Dr. Lai

Introduction of Yuan-Yang (Diane) Lai, PhD

Having received her BS in Biology at the National Taiwan Normal University in 1974, Dr. Lai completed her MS in Life Sciences and her PhD in Physiology at Indiana State University and Texas Tech University, respectively. She initially studied REM sleep behavior disorder (RBD) and then sleep-related motor systems during this period. She then pursued postgraduate studies in the Department of Psychiatry and Biobehavioral Sciences at the David Geffen School of Medicine at UCLA. In the early 1990’s, she was a Visiting Researcher and then a Visiting Professor in Taiwan at the same time that she was performing research as an Associate Physiologist at UCLA. She has held increasingly more responsible positions at UCLA leading to her present position as a senior Research Physiologist (in the Department of Psychiatry and Biobehavioral Sciences at the David Geffen School of Medicine) at UCLA. She received her first research grant from the RLS Foundation in 2002 and the prestigious IRLSSG Wayne Hening Sleep Medicine Investigator Award in 2011. Dr. Lai led a research team at UCLA using animal models funded with a seed grant by the RLS Foundation. Based on the results funded by this grant, the team received a five-year grant from the National Institutes of Health to delve further into the subject. We will have the opportunity to ask Dr. Lai questions about her research and how it may impact how RLS is treated today as well as the implications to finding the cause of RLS. Dr. Lai is also interested in hearing about us and how we experience RLS. She will be talking to us today about her recently-funded research on the effect of Histamine H3 receptor antagonists on PLMS using iron-deficient rats. Her study was highlighted in an article published in the Spring 2015 edition of the Nightwalkers.

Information about Dr. Lai's research: Click here

Q & A led by Dr. Buchfuhrer

Brief Resume of Mark Buchfuhrer, MD

Born in Montreal, Canada, Dr. Buchfuhrer went to medical school at the University of Ottawa and finished his internal medicine residency in Toronto. He then moved to California and was trained in pulmonary diseases at Harbor UCLA Medical Center. After finishing his specialty training, Dr. Buchfuhrer went into private practice in Downey, CA, working also on staff at Downey Regional Medical Center (now called Presbyterian Intercommunity Hospital Downey). He started a sleep laboratory at that hospital in 1983 and then became a Diplomate of the American Board of Sleep Medicine.

Dr. Buchfuhrer became interested in RLS in about 1992 and has developed a large outpatient RLS practice locally and also practices at the monthly Restless Legs Syndrome Clinic at the Stanford Center for Sleep Sciences and Medicine in Redwood City. He has developed and maintains a website on RLS (www.rlshelp.org) and has served on the Medical Advisory Board of the RLS Foundation twice and was also the editor of its NightWalker newsletter. Dr. Buchfuhrer has written several publications on RLS including both patient books and clinical handbooks for doctors. As recently as February of this year, Dr B was featured in an article called "Allaying Augmentation" in the Sleep Review, A Journal for Sleep Specialists. He is currently updating the IRLSSG White Paper on Augmentation for journal publication as well as undertaking an update of a book he co-authored with the late Dr. Wayne Hening on the clinical management of RLS. Dr. Buchfuhrer has been the medical advisor of the support group since its inception in 1996 and, with his unique expertise, vision and generosity, makes attending our support group a very special experience.

If you are interested in volunteering for future support group meetings, please contact me by email (susan@rlsgroups.org). We need help with hospitality, publicity, membership or general assistance during the meetings. Special THANKS to Mary Burns for her general support and assistance at the registration table.

Respectfully submitted,

S. Schlichting


Meeting #57

Minutes to So California RLS Support Group Meeting, April 24, 2016
Long Beach Community Hospital, Long Beach, CA

Meeting Details:

The meeting convened at 1:10 pm. Ms. Schlichting announced that

(1) the RLS Foundation webinar will be held on May 13, topic: RLS and Depression (John Winkelman, MD.) Register at rls.org
(2) the RLS Foundation Augmentation video is available on YouTube
(3) the Survey for Dr. Lai is available on the membership table for those who haven’t completed it; and
(4) a 90-day free Foundation membership is available for new members.

A member summarized the recent program held by the RLS support group in San Diego, including the topic of medical marijuana.
The group in attendance was relatively small (less than 25) and was conducive to holding an open forum during which several topics were discussed. The discussion was lively and almost all of the attendees participated.

Beginning at 2 p.m., Dr. Buchfuhrer made two presentations using PowerPoint slides on the following two topics: RLS and Sleep Quality and Opiates and Treating RLS: Controversies, benefits and risks. . Dr. Buchfuhrer took questions during his presentations; much information was gleaned and exchanged. After a break, a general Q&A led by Dr. Buchfuhrer was held. The sense was that the nature of the information discussed at this meeting was educational, practical and critically relevant to all in attendance. The meeting adjourned about 3:45 pm.

Respectfully submitted,

S. Schlichting

















Source: Southern California Restless Legs Support Group Old Meetings Page
http://www.rlshelp.org/Meetrls.htm
This web page was last modified on Wednesday, May 04, 2016.
This page was created with the FrontPage 98, a Web Page Editor.


 

Click here to return to the Southern California Restless Legs Support Group Homepage