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SDS/MSA SUPPORT GROUP NEWSLETTER 1-866-SDS-4999 www.shy-drager.com Fourth Quarter, 2000 Austin, TX. "To Educate and Support" We are new and Improved by Don Summers Hi everyone. I am pleased to write an introduction to the very first e-publication of the SDS/MSA Newsletter! We've all waited a long time for this event. Our intentions are to publish a thorough and informative newsletter each quarter. In these publications we will provide as much helpful and informative information as possible and do our best to get it to each of you in a manner that is enjoyable and understandable. There will be opportunities for input from you, particularly in the area of helpful hints and tips from both patients and caregivers. Also, I would like to see in future issues, comments about good relationship with your primary care physicians. Enough from me! Enjoy being part of a first! My very best regards to each of you and your families! ********************************************* CONFERENCE HIGHLIGHTS SDS/MSA Support Group Cleveland, OH. Sept. 15-17,2000 The 12th Annual SDS/MSA Support Group Conference was held at the Hilton Garden Inn in Cleveland, Ohio on September 15 - 17, 2000. President Don Summers welcomed returning and new patients, caregivers and thanked the physicians for coming. A special welcome and Thank You to Dr. Tom Chelimsky for hosting the meeting. The purpose for the meeting is to 'Educate and Support' which is our motto. We had a great turnout. There were 31 new attendees, 5 returning from last year, 7 physicians/medical staff and 3 board members totaling 46 who attend the conference this year. Dr. Tom Chelimsky introduced the doctors who were present: Dr. Donald Bodner, Dr. Janice Gilden, Dr. Fetnat Fouad-Tarazi, Dr. David Riley, and Cindy Lindeeman came later to the afternoon session. There were presentations given by each of the doctors. We all leaned a lot from them. The doctors formed a panel and answered the patients and caregivers questions. After lunch, Nan Todd gave a presentation on Being Prepared with your loved one and with your physician. Cindy Lindeeman, a Physical/occupation therapist, gave her presentation and talked about some of the things she brought to aid the patients with their needs, such as drinking cups and walking sticks. After the afternoon snack, the patients and caregivers broke out into separate sessions. Sylvia Dickinson was the facilitator for the patients session and Don Summers was the facilitator for the caregivers session. The day ended after the sessions. Sunday mornings meeting opened with a continental breakfast. Don Summers opened the general discussion with the group that was still in attendance. (Several folks had to miss the Sunday meeting.) A big concern was about getting the information out to others that couldn't make it to the meeting. Several suggestions were offered including to video the next meeting via Web Cam for those who have computers. We are also going to have a release form at the next conference so the names of the attendees can be made public. Sylvia Dickinson gave her thanks for putting in a long day. There were question and answer time. One of the questions asked was 'how is the city picked for the conferences'? Don S. explained that the Support Group meeting is usually held in conjunction with the American Autonomic Society conference when it is held in the continental U.S. Being the 1999 and 2000 conferences were held out of the continental U.S., alternate locations had to be made. The concentration of patients and easy access for the patients are important considerations when choosing a location. Cleveland was chosen by Don when he asked Dr. Chelimsky if he would like to host our conference for 2000. Comments from the group on the conference: Location was easy to get too. Interaction with the Doctors, patients and caregivers were great. Reassurance that one is doing the best they can because no one seems to know that much about the disease. Warm emotional experience meeting others with the disease. Presenters were caring, knowledgeable and enthusiastic. Meetings were quick Food was of a variety that patients could eat. Doors were light enough to open. Snacks were good. Temperature of the room was good. Mobility in the room was good. Need bigger lead time for meeting notice. On to the Business Meeting The financial report was read. Fund raising was a big and important issue. Shire U.S. Inc. is now our sponsor. They have acquired Roberts Pharmaceutical who previously sponsored us. We need to start raising funds and are asking you to help. Several fund raiser ideas were expressed. Don Crouse is our Marketing Director and Fund Raiser Chairman and would appreciate any help or support you can offer. Other committees were defined as Fact Sheet/Education; Newsletter/Publications; Website; Member Services/Recruitment. If you have a computer you can go to our web site www.shy-drager.com and view some of the photographs that were taken. We hope to see more of you at our conference next year. The date and location will be announced soon. ******************************************* CONFERENCE HIGHLIGHTS American Autonomic Society Rio Grande, Puerto Rico October 27-29, 2000 Dr Roy Freeman welcomed the numerous physicians and medical staff to Eleventh International Symposium on the Autonomic Nervous System. Sixteen countries were represented with presentations and/or Poster displays. There were 7 presentations on Orthostiatic Hypotension/Orthostatic Intolerance; 8 presentations on Cerebral Autoregulation; 5 presentations on Syncope; 3 presentations on Central Nervous System; 8 presentations on Peripheral Nervous System; 7 presentations on Baroreflex and Chemoreflex; 7 presentations on Baroreflex Function; and 10 presentations on Orthostatic Intolerance. Each presentation was given 15 minutes with a short question and answer time after the presentation. These sessions ran from 7:30 a.m. to 12:30 p.m. with a coffee break at 9:55 a.m. This was a very rigid schedule and they really kept to it. The poster display was from 12:30 to 1:30 p.m. After that it was free time. Friday sessions started again at 7:00 p.m. and ran until 10:00 p.m. Saturday was the same schedule until 10:00 a.m. when they held their 30 minute business meeting. Don Summers gave a 7 minute pep-talk to the physicians thanking them for their dedication to finding a cause and a cure for SDS/MSA patients. Dr. Freeman introduced Felicia B. Axelrod as the next president for 2000-2001. The next conference will be held in California. Location and date to be announced later. Saturday night was the Presidents dinner for all attendees and their guests. Sunday was presentations until 12:30 p.m. The conference ended after the 1:30 poster display session. One of the presentations that really caught attention was Water drinking acutely attenuates orthostatic and postprandial hypotension in patients with autonomic failure. There was an article in The Vanderbilt Autonomic Letter that is written in layman's terms that I would like to include here. Water, An Unexpected Pressor Agent For many years, medical textbooks have been very clear that sodium rather than water is the primary dietary determinant of blood pressure control. When MSA patients began describing improved functional capacity following water ingestion, they were initially met with skepticism. However, in a series of investigations during the past two years, Vanderbilt investigation have documented not only that the drinking of water can raise blood pressure, but that it often raises it more than any currently used drug. On the average, 16 oz of tap water raised blood pressure about 40 mmHg, with a peak effect about a half hour after drinking. The magnitude of this effect was very surprising and encouraged subsequent studies in healthy young and healthy elderly volunteer subjects. Although water had little effect on blood pressure in young normal subjects, there was a 12 mmHg increase in blood pressure in older subjects, indicating that recent water ingestion is an important variable in blood pressure level in even healthy persons. This will require substantial changes in the way new drugs are evaluated and in the way hypertension is monitored by physicians in the future. Most importantly, this provides a new and more effective means to treat the blood pressure abnormality in Shy-Drager syndrome. In some individuals, the careful administration and withholding of eater at various times during the day has been the only form of treatment of blood pressure that has been required. Much further work is needed on this subject, but all physicians need to be aware that water ingestion is a powerful pressor stimulus in conditions associated with autonomic impairment and that it can be extremely helpful during the daytime when patients wish to be up. Conversely, it might be detrimental during the night when patients are supine, and when the pressor effect might raise blood pressure dangerously high. ******************************************* RESEARCH REPORT By Dr. David Robertson Multiple System Atrophy: Now a Major Research Priority For many years, only a few physicians were working to discover the cause and treatment of multiple system atrophy. This changed perceptibly in the 1990s as Physicians interested in the autonomic nervous system organized the American Autonomic Society. At the same time, neurologists interested in Parkinson's disease began taking a greater interest in MSA. Now for the first time in history there is a critical mass of physicians and scientists whose major interest is in understanding and curing this disease. Extraordinary achievements have recently been made. At first the Shy-Drager syndrome seemed like a particularly severe form of Parkinson's disease. Now the clinical differences have begun to emerge. The poor response to levodopa, the early autonomic involvement, the prominent urinary tract symptoms, cerebella involvement, apnea, emotional volatility and cranial nerve involvement and peripheral neuropathy are recognized as characteristic of MSA rather than Parkinson's disease. Differences in physical findings also soon emerged: the cold hands of the MSA patient. What is exciting to us now is the identification of significant functional differences in MSA and Parkinson's disease. For example, we now understand that in Parkinson's disease, surprisingly, there is significant involvement of the autonomic nerves in the heart, and many Parkinson's patients seem to lose almost all of their cardiac sympathetic nervous system innervation. In MSA, normal levels of sympathetic innervation of the heart seem to be present. This is encouraging because it means that the nerves are still there if we can just learn to control them properly. The importance of this was made clear by recent studies using the drug trimethaphan, which transiently shuts down both parasympathetic and sympathetic activity. It was found that in MSA patients, this drug greatly altered blood pressure and heart rate, proving that even though the patients had orthostatic hypotension, they still had plenty of sympathetic control of their vessels. It is just that this control could not be marshaled appropriately by the brain to do the job it needed to do. Yet, the most exciting new research is focusing on the similarities emerging in many of the neurodegenerative diseases such as MSA, Parkinson's disease, and even Alzheimer's disease. alpha-Synuclein has been identified in tiny bodies in the brain cells of patients with MSA. These are called glial cytoplasmic inclusions and while structurally distinct from the Lewy bodies of Parkinson's disease, nevertheless, seem to have many of the same components in them. The widespread presence of this alpha-synuclein has encouraged some scientists in the past few months to classify Parkinson's disease and MSA by the new name of "synucleinopathies." alpha-Synuclein is a normal component of the human genome. Therefore, it obviously has some important purpose although that purpose is not now understood. Still, when it is present in such extraordinarily high concentrations in the brain cells of patients with MSA, that surely must be telling us something about the cause of MSA. alpha-Synuclein does not appear to be the culprit causing MSA but it may only be one or two steps away. That offers much hope for understanding MSA. In alpha-synuclein, we may not yet have discovered the perpetrator, but at least we have apprehended one of the accomplices. And we expect to learn a great deal from this accomplice. Clearly, we have made greater progress in understanding the cause of MSA in the past three years than in the previous 100 years. There is every reason to expect more progress in the future. I have never been more optimistic about discovery of the cause of MSA than I am in the millennial year. ******************************************* WE NEED YOUR HELP!!! The SDS/MSA Support Group needs your help to increase the public awareness of SDS/MSA Some of the ways this can be accomplished are: 1. Write or call your U.S. Representatives and Senators, encouraging them to allocate more funding for Autonomic Research. 2. Encourage Physicians to learn as much as possible about the diagnosis and treatment of SDS/MSA. 3. Become a member of the group! Call 1-866-SDS-4999 and become a member. Membership is open and free and your information can be taken over the phone. Or send email to [log in to unmask] or write to: SDS/MSA Support Group - Membership 2004 Howard Lane Austin, TX. 78728 4. Volunteer your time! We have several committees you can lead or be a part of: Fund Raising - contact Don Crouse Member Service/Recruitment - contact Nan Todd Newsletter/Publications - contact Don Summers Web Site - contact Sylvia Summers The addresses can be found under Board of Directors. We also need financial help to keep the support group going. With the growth that we are experiencing it is no longer possible to expect Shire U.S. Inc. to carry the whole load. If you are able to contribute financially contact the group president, Don Summers. You all have a part! Remember our Mission: "To Educate and Support". We see the process as a circle with information and support constantly making the rounds from patient, to caregiver, to family member, to physician. Please join us in our efforts to educate and support one another! ****************************************** We are very sad to say Sylvia Dickinson has resigned from the Board. We have added three new members: Nan Todd, Chris Pearson and Sylvia Summers. Current Board of Directors Don Summers - President 2004 Howard Lane Austin, TX. 78728 1-866-SDS-4999 [log in to unmask] Donald Crouse - Marketing Director/Fund Raising 20 Tower Hill Drive Red Bank, NJ. 07701 [log in to unmask] Dr. David Robertson MD - Physician Advisor Clinical Research Center Room AA-3228 Medical Center North Vanderbilt University Nashville, TN. 37232-2195 Nan Todd - Support Group Coordinator 2514 N. 11th St Sheboygan, WI. 53083 [log in to unmask] Chris Pearson - Shire US Inc. Representative 7900 Tanners Grate Dr. Florence, KY 41042 1-800-282-2100 [log in to unmask] Lyn Wood R.N. M.S.N. - Caregiver Representative Evergreen, Co. (not active at this time) Sylvia Summers - Webmaster/Admin. Assistant 2004 Howard Lane. Austin, TX. 78728 [log in to unmask] ******************************************* Support Groups in your Area NATIONAL HEADQUARTERS: SDS/MSA Support Group Inc. 2004 Howard Lane Austin, TX. 78728 U.S.A. Phone: 1-866-SDS-4999 or 1-800-288-5582 Fax: 512-251-3315 Contact: Don Summers, President email: [log in to unmask] REGIONAL SUPPORT GROUPS Ohio SDS/MSA Support Group Contact: Judy Biedenharn 3954 Larchmere Drive Grove City, OH. 43123 phone: 614-873-5531 email: [log in to unmask] Washington, DC Area SDS/MSA Support Group Contact: Bill Werre 1308 Dulles Place Herndon, VA. 20170-3818 phone: 703-471-7215 email: [log in to unmask] or Perry Sennewald 1108 Pheasant Crossing Charlottesville, VA 22901-6204 804-244-0018 email: [log in to unmask] Boston, MA Area SDS/MSA Support Group Contact Carol Langer 21 Winthrop Road Lexington, MA 02421 phone: 781-862-5435 email: [log in to unmask] Minnesota SDS/MSA Support Group Contact: Diane Rydrych 2628 Harriet Ave #1 Minneapolis, MN. 55408 email: [log in to unmask] Middle Tennessee SDS/MSA Support Group Contact: Christine Latham 1428 East Cedar Lane Nashville, TN. 37115 email; [log in to unmask] Western Tennessee SDS/MSA Support Group Contact: Amy Beckman 2741 Higbee Ave Memphis, TN. 38111 Phone # 901-452-7443. email: [log in to unmask] Oregon SDS/MSA Support Group Contact: Judy Mears 1512 Kenard St. N.W. Salem, OR. 97304 phone:503-581-8941 email: [log in to unmask] N. California SDS/MSA Support Group Contact: Sophia Dohm 10 Bay Tree Hollow Novato, CA. 94945 phone: 415-897-8993 email: [log in to unmask] IMPORTANT DATES Oregon Support Group meeting Oregon Health Science University Library January 14th, a Sunday at 2p.m. International Conferences on Catecholamines, Alzheimer's and Parkinson's Diseases (Kyoto, Japan) March 1-April 5, 2001