Post Polio Notes
December 1999 | San Diego, CA |
A Note from Mary Clare Schlesinger As
1999 comes to a close, I’d like to thank you for your support,
contributions and donations. I
especially appreciate your kindness and consideration in sharing
information. Dr. Susan Perlman to speak in San Diego On Sunday, June 18, 2000, Dr. Perlman associate clinical professor of neurology, a leading expert on PPS, and director of the Post-Polio Clinic at UC Los Angeles will talk in San Diego. Details will be published later. Keep the date open! San Marcos PPS Meeting Fifteen PPS people attended the October meeting. The group discussed the upcoming conference of the March of Dimes in May 2000 and addressed these needs: educate the medical profession and include PPS in nursing curriculum, care of chronically ill patients, expedite approval of new drugs (NGF), research on neuromuscular disease that prolongs nerve cell life, create more awareness among polio survivors who don’t know about PPS and make assistive equipment available to more PPS patients. Rose Wiant shared her positive experiences with Dr. Lara Le, an internist at the Graybill Medical Group located at 335 E. 2nd Ave. Escondido (760) 796-6700. Dr. Larry Presant, an internist at the Center for Health Care located at 17190 Bernardo Center Drive Rancho Bernardo (858) 675-3100 was also recommended to the group. Anita Adsit shared her volunteer work with 2 women who have Alzheimer’s. Anita finds that focusing outwards and staying busy helps her to feel well. Marilyn Salisbury has a service dog in training and works in cooperation with CoPilots for Independence. |
San Diego PSG Meeting Nick and Virginia Nichols greeted 24 people at the La Jolla meeting. Judy Sander asked 5 new members to share their PPS history. Kay Meers had polio in ’56 and was diagnosed with PPS in ’91. Kay’s service dog has been helping her overcome new PPS challenges in the last 7 years. Henrietta Wahl had polio at 18 months in NYC, while in the hospital for whooping cough. Richard Willebonn had polio in NYC in ’55 and developed PPS symptoms in ’87. Steve Goldman also had polio in NYC at 4 years old and is now semi-retired. Dr. Jim Donovan reported the National Institutes of Health (NIH) in Bethseda, MD is accepting PPS patients for participation in clinical research. They will provide medical, surgical or other hospital care. For information contact Dr. Marinos Dalakas of the NIH Institute of Neurological Disorders and Stroke (301) 496-0079. Dr. Donovan related these PPS issues to the Steering Committee for the March of Dimes International Conference on PPS, May, 2000:1) PPS should be included in medical school and nursing curriculum. 2) The World Health Organization should address polio and its future PPS complications. 3) More assistive devices should be available for independence. 4) Pursue more research with neural stem cells. 5) More active involvement from Fred Gage at the Salk Institute with his research of neurotrophin 3 that stimulates growth in damaged nerves, from John O’Brien of UCSD with his research of neurodys and lipidoses and from Mark Tuszynski, also from UCSD with his research on spinal cord injuries. 6) Research from Washington University, St Louis on a protein molecule (SLIT) that directs developing nerve cells and transplants neurons to the site that needs them. |
Persistence of Polio Virus
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More Research News Tracking Post-Polio Syndrome by Warren Froelich appeared in the Fall ’99 issue of Salk Institute Signals “In a lab area once occupied by polio vaccine pioneer Jonas Salk, researchers are now tackling some unfinished business: post-polio syndrome. ‘The syndrome’s difficult to ignore, and it shouldn’t be ignored.’ said Assistant Professor Samuel L. Pfaff, a developmental neurobiologist at the Salk Institute. Though medical science can offer little to these patients for the moment, Pfaff talks enthusiastically about the possibilities for the future, particularly with new advances in gene therapy that one day may direct immature stem cells into becoming mature motor neurons.” Thanks, Herb, for keeping us informed.What Can You Do If You Get the Flu?From Dr. Robert Sarnoff, pulmonologist, Scripps Clinic, Torrey Pines The FDA approved Tamiflu (osltamivir) in October, the second major flu drug to be endorsed since Relenza (zanamivir) last summer. Tamiflu comes in capsule form while Relenza is a powdered inhaler. Taken within 48 hours of getting sick, Tamiflu and Relenza can cut the duration of flu symptoms by one and a half days and also cut in half the risk of complications such as bronchitis and sinusitis. A new study finds that Tamiflu taken for six weeks before any symptoms, may help prevent flu. However, the best defense is a flu shot. Note: This is not intended as medical advice. Consult your doctor. Thanks To Rhoda Damsky, Irene English, Alice Gowing, Shelah Michael, Marian Retzlaff, Joyce Sapp, Fred Space, Betty Svare and Rose Wiant for supporting the printing and distribution of this newsletter. |
It Couldn’t Be Done by Edgar A. Guest (From Franklin Smith)
Somebody said that it couldn’t be done, Somebody scoffed:
“Oh, you’ll never do that; There are thousands to tell you it cannot be done, Second Annual PPS Picnic Crown Point in Mission Bay provided another perfect picnic place for 20 PPS families and their pets. Sammie Domich, Lenawee Garcia and Andrea Hollenbeck organized the event. Rod Garcia put his culinary skills to use as the chef for the occasion. The warm bright day on the bay added to the comfort of lasting friendships. Many people enjoyed the picnic till 7PM. Thanks Andrea, Lenawee, Rod and Sammie! |
Falling
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March of Dimes Wants to Hear from You
The March of Dimes committee invites polio survivors to give their feedback in order to identify the best practices in diagnosis, treatment and care of PPS. The International Conference on PPS will be held May 19-20, 2000 in collaboration with the Roosevelt Warm Springs Institute for Rehabilitation in Warm Springs, GA. The purpose is to raise awareness of PPS for better clinical management, to initiate networks and partnerships among relevant organizations, practitioners and to address research priorities. The committee is interested in you. Joan Roe, March of Dimes, 1275 Mamaroneck Ave., White Plains, NY 10605 Or E-Mail to: jroe@modimes.org For more information contact Joan Headley, the
Executive Director of Gazette International Networking Institute (GINI) at: Letter to the March of Dimes Dear Ms. Roe: The March of Dimes is in a unique position to raise awareness of PPS in both the medical community and general public. The problem with the medical community failing to consider PPS as a condition that can be treated was made evident recently by one of the most prestigious medical institutions in the world, the Mayo Clinic. Attached is a page from their web site that shows their dismissive attitude http://www.mayohealth.org/mayo/askphys/qa990820.htm. Also attached is a letter I wrote in response (see Post Polio Notes October 1999 at the web site). The MOD can use its influence to educate the medical community that the symptoms of PPS can be alleviated and that new drugs and treatments may impede the muscle degeneration. |
Second, the MOD can educate polio survivors that are
experiencing PPS but do not yet realize the cause of their symptoms.
Once polio survivors know the cause of their new symptoms they can
help educate their doctors to the treatment options available.
The MOD is in a position to influence polio suriviors that are
prominent in the public eye (entertainers, politicians, athletes, etc.).
http://www.geocities.com/Heartland/Ranch/ Sincerely,
Stories that Shaped the Century From Barbara MacKinnon The LA Times noted the historical significance of the Salk vaccine and reprinted two articles from April 14,1955: First Child in L.A. Gets Polio Vaccine and Eisenhower Acts to Share Vaccine Data with the World. Kit Rachlis writes in the Nov.8,’99 LA Times, A Vicious Epidemic Is Overcome by Vaccine. Kit’s mother had polio while she was pregnant and today has PPS. Kit writes, “Salk did not just prevent a disease, he exorcised a ghost that had been haunting the world for more than 40 years. Polio generated a terror—a sense of dread that so permeated society that it became part of the air people breathed—for which AIDS provided the only modern equivalent.” “Despite all the breakthroughs, it turns out that polio had one more terrible surprise left…post polio syndrome. Having regained the use of their bodies, having every reason to believe the illness had been defeated, polio survivors face the prospect that they have to fight the battle all over again. But this time the odds are not in their favor. This time, there is no Dr. Salk, no vaccine, no physical therapy on the horizon.” Thanks, Barbara. |
Dr. Lauro
Halstead to Speak in Phoenix, Arizona
Dr. Halstead of the National Rehabilitation
Hospital at Georgetown University School of Medicine, Washington DC is one
of the leading authorities on Post Polio Syndrome and a respected
international lecturer. He has
been published in leading journals of medicine and rehabilitation. Dr. Halstead will speak at a meeting of the Phoenix PPS
Support Group, Polio Echo on Saturday, March 18, 2000, which will be open to
the public. He makes few
personal appearances, so this is a special opportunity.
More details will be available later.
Second
Annual Holiday Party Music for the Holidays Marty Bloom organizes musical performances by the San
Diego Master Chorale. Dec. 12 at 2 PM Handel:
Messiah For more information E-Mail: mbloom@fatcity.com |
Upcoming Events December
4 North County PPSG December 9
Holiday Party December
18-and
January 29, 2000 January
13, 2000 Escondido area and small groups: Visit our Web Page! http://sandiego_polio.tripod.com With
recent photos and back issues of Post Polio Notes! Directions and maps to the
North County meeting in San Marcos and the San Diego meeting in La Jolla! Post Polio Notes is published by Mary Clare Schlesinger with news of Post Polio Activities in the San Diego area and general information on Post Polio Syndrome. Your written contributions are welcome, please send them to: Mary Clare Schlesinger |
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