DNMILLER@osu-20.ircc.ohio-state.edu (David Neal Miller) (05/31/90)
Index Number: 8524 Does anyone know of an organization or organizations devoted to post-polio syndrome? (There is/was one in the Washington, DC, area, but mail sent to a ca. 5-year-old address was returned as undeliverable.) Thanks in advance. [Note from Bill McGarry: See the following article]
wtm@bunker.uucp (Bill McGarry) (05/31/90)
Index Number: 8525 I got the following information from the National Organization for Rare Disorders (NORD) database (on Compuserve): Post-Polio National, Inc. (Post-Polio League for Information and Outreach) 3581 University Drive Fairfax, VA 22030 (703) 273-8171 National Organization for Rare Disorders (NORD) P.O. Box 8923 New Fairfield, CT 06812 (203) 746-6518 Polio Information Center 510 Main Street, Suite A446 Roosevelt Island, NY 10044 (212) 223-0353 National Easter Seal Society for Crippled Children and Adults 70 East Lake St. Chicago, IL 60601 (312) 726-6200 (voice) (312) 726-4258 (TDD) British Polio Fellowship Bell Close West End Ruislip, Middlesex HA4 6LP England Hope this helps! Bill McGarry UUCP: {oliveb, philabs, decvax, yale}!bunker!wtm INTERNET: wtm@bunker.uucp l-hcap@vm1.nodak.edu BITNET: l-hcap@ndsuvm1.bitnet (300/1200/2400 baud, 24 hours) Compuserve: 73170,1064
rbarth@tumtum.cs.umd.edu (Dick Barth) (06/04/90)
Index Number: 8585 In Issue # 1300, DNMILLER@osu-20.ircc.ohio-state.edu (David Neal Miller) writes: >Does anyone know of an organization or organizations devoted to >post-polio syndrome? The following is INFO file P from the HEX BBS. Hope it's useful. ..... INFORMATION FOR POLIO SURVIVORS Polio survivors may be experiencing new health problems, such as: *Muscle weakness *Muscle and joint pain *Unaccustomed fatigue *Breathing difficulties Recommended reading on this subject is the "Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors". This practical, easy-to-read booklet is available for $6.00 from Gazette International Networking Institute (G.I.N.I.) at the address below. The International Polio Network is open to polio survivors and interested health professionals. For an annual membership fee of $5, members receive "Polio Network News", a quarterly bulletin with the latest in post-polio research, support group activities, and upcoming polio conferences. In addition members receive the Post-Polio Directory of physicians and post-polio clinics, and support groups across the country. Membership applications are available from G.I.N.I. Proceedings of the 1983 and 1985 polio conferences sponsored by G.I.N.I. are available for $16. The 1987 conference is scheduled for June 5-7 1987 at the Sheraton Saint Louis Hotel. Write for further information. The foregoing information is from G.I.N.I.'s letter to HEX of 30 January 1986. They may be contacted at: Gazette International Networking Institute 4502 Maryland Avenue St. Louis MO 63018 (314) 361-0475 ----------------------------- Richard Barth, W3HWN, rbarth@tumtum.cs.umd.edu Handicapped Educational Exchange... (301) 593-7033 (TDD & 300 baud ASCII) (301) 593-7357 (300/1200 baud, 8N1)
wtm@bunker.uucp (Bill McGarry) (07/04/90)
Index Number: 9020 The following information is from the National Organization for Rare Disorders (NORD) database (on Compuserve): Post-Polio National, Inc. (Post-Polio League for Information and Outreach) 3581 University Drive Fairfax, VA 22030 (703) 273-8171 National Organization for Rare Disorders (NORD) P.O. Box 8923 New Fairfield, CT 06812 (203) 746-6518 Polio Information Center 510 Main Street, Suite A446 Roosevelt Island, NY 10044 (212) 223-0353 National Easter Seal Society for Crippled Children and Adults 70 East Lake St. Chicago, IL 60601 (312) 726-6200 (voice) (312) 726-4258 (TDD) British Polio Fellowship Bell Close West End Ruislip, Middlesex HA4 6LP England The following is from Dick Barth's BBS (the HEX BBS): Richard Barth, W3HWN, rbarth@tumtum.cs.umd.edu Handicapped Educational Exchange... (301) 593-7033 (TDD & 300 baud ASCII) (301) 593-7357 (300/1200 baud, 8N1) INFORMATION FOR POLIO SURVIVORS Polio survivors may be experiencing new health problems, such as: *Muscle weakness *Muscle and joint pain *Unaccustomed fatigue *Breathing difficulties Recommended reading on this subject is the "Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors". This practical, easy-to-read booklet is available for $6.00 from Gazette International Networking Institute (G.I.N.I.) at the address below. The International Polio Network is open to polio survivors and interested health professionals. For an annual membership fee of $5, members receive "Polio Network News", a quarterly bulletin with the latest in post-polio research, support group activities, and upcoming polio conferences. In addition members receive the Post-Polio Directory of physicians and post-polio clinics, and support groups across the country. Membership applications are available from G.I.N.I. Proceedings of the 1983 and 1985 polio conferences sponsored by G.I.N.I. are available for $16. The 1987 conference is scheduled for June 5-7 1987 at the Sheraton Saint Louis Hotel. Write for further information. The foregoing information is from G.I.N.I.'s letter to HEX of 30 January 1986. They may be contacted at: Gazette International Networking Institute 4502 Maryland Avenue St. Louis MO 63018 (314) 361-0475 Hope this helps! Bill McGarry UUCP: {oliveb, philabs, decvax, yale}!bunker!wtm INTERNET: wtm@bunker.uucp l-hcap@vm1.nodak.edu BITNET: l-hcap@ndsuvm1.bitnet (300/1200/2400 baud, 24 hours) Compuserve: 73170,1064
shafer@skipper.dfrf.nasa.gov (Mary Shafer) (07/07/90)
Index Number: 9057 Rancho Los Amigos Hospital (RLAH), in Downey, CA, has a very active post-polio program. My husband's been very pleased in his dealings with them. RLAH is a rehabilitation center for Los Angeles County and is over 100 yrs old. My allergist did her residency managing iron-lung patients there in the fifties. We're especially impressed with their expertise in wheelchair systems. They've recommended that Ken go to a motorized chair and suggested a very small, light-weight system that attaches (semi-permanently) to a conventional chair. The huge conventional motorized chairs would really limit his mobility here at NASA Dryden (he's the Senior Staff Scientist), since it, like many government facilities, has too much equipment and too many people in too little space. Mary
wtm@bunker.uucp (Bill McGarry) (10/02/90)
Index Number: 10691 This information is from the National Organization for Rare Diseases's database on Compuserve. NORD is an organization that specializes in information on rare diseases and will put you in contact with other people or parents of children with the same disease or disorder. Their address is: The National Organization for Rare Disorders (NORD) P.O. Box 8923 Fairfield, CT 06812 (USA) Phone: (800) 999-NORD (203) 746-6518 (In CT) NORD can also be reached on Compuserve. NORD has information on some 500 rare disorders and also has information on orphan drugs. Post-Polio Syndrome occurs at least 10 years after a person has been stricken by polio. It is characterized by gradual deterioration of muscle function and increased weakness which usually occurs in the limbs that had been most severely affected by polio. Sometimes the disorder involves those muscles apparently fully recovered or previously uninvolved, including muscles necessary for respiration. Other symptoms may include fatigue, muscle pain and twitching (fasciculations). The exact cause of Post-Polio syndrome has not yet been identified. Theories that the dormant polio virus may be reactivated years after polio first occurs have been dismissed in the absence of scientific proof. Other theories that Post-Polio patients appear to be aging more rapidly in certain parts of their central nervous system than their peers are also unproven. Recently, scientists determined that Post-Polio Syndrome is not a form of Amyotropic Lateral Sclerosis (ALS). In a 1987 study of Post-Polio Syndrome patients, scientists found evidence that nerve cells in affected muscles may grow many small sprouts from the message-transmitting axons of healthy nerve cells during recovery from polio. These sprouts take over the function of neurons killed by the polio virus. After years of functioning beyond capacity, the nerve cells can weaken and lose the ability to maintain these sprouts, which then begin to shrink, and the whole muscle becomes weaker. As a result of this discovery, researchers hope to develop an experimental treatment that may improve sprouting of the axons. Other studies, such as investigating the presence of abnormal proteins in cerebrospinal fluid, and the effect of the polio virus on nerve cells in muscle fibers of Post-Polio patients.