Can You Help?
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ITEM CYH502
I read that Rotary International has raised millions of dollars for their Polio Plus campaign to assist with the mass immunization of the world's children. Is any of this money available to polio survivors?
Response: Rotary International 's response to this question: "... no direct funding assistance (for polio or any other project) is available through this office (the international office, Chicago area). Funding requests, including humanitarian project grants, scholarships, and Rotary sponsorship, must begin at the local club level. To, contact the Rotary Club nearest you, please write or telephone the Rotary District Governor for your area. He/she can help determine if the local Rotary clubs would be interested in cooperating with you or sponsoring your project."
If you do not know the name and address of your Rotary District Governor, contact PID@rotary.org or write to Rotary International, 1 Rotary Center, 1560 Sherman Avenue, Evanston, Illinois USA 60201 (www.rotary.org/programs)
Rotary is a private entity and their original mission in regards to polio is "tied very tightly to the eradication effort." They anticipate that they will be involved in eradication efforts until at least 2008. If you have an idea, contact them. They had supported some rehabilitation projects in the past.
You may also have heard about the Bill & Melinda Gates Foundation. One of its goals is "to combat major diseases that disproportionately affect impoverished areas of the world." The foundation has joined the polio eradication effort (PO Box 23350, Seattle, WA 98102, www.gatesfoundation.org).
ITEM CYH501
In reading the extensive material on your website, I found several references to fatigue. I do not experience fatigue but am experiencing weakness in one leg. I have plenty of energy. Is this typical?
Response: It is important to remember that any list of symptoms is a listing of the possible symptoms and certainly does not mean that you will experience all of them. Fatigue is often reported by polio survivors and finding the cause is necessary before a physician can offer a management plan. Finding the cause can take some time. Fatigue can result from overus, disuse (deconditioning), respiratory muscle weakness that causes underventilation, depression, chronic pain, side effect of medication, etc. Weakness is considered to be the hallmark symptom of post-polio syndrome (www.post-polio.org/edu/hpros/task/experts.html). Pain is often reported as well and is the symptom that usually "gets people to a physician's office." It is also important to remember that "post-polio syndrome" is a diagnosis of exclusion and that the symptoms of fatigue, weakness, and pain can be caused by many things. Part of the diagnosis is to find AND treat the other causes of these very general symptoms: www.post-polio.org/hpros/task/diffdiag.html
ITEM CYH500
My husband and I want to know how/where/to whom to donate a body and/or to arrange for any specimens that may be of use in ongoing research on post-polio syndrome. We planned to start this search for donation information tomorrow, as Mom has been adamant for years that she wanted her remains to do some good for other polio survivors. Obviously, with neurologic tissues and family issues, this must be decided sooner. If you can help, please respond at your earliest opportunity.
Response: A Brain Tissue Bank in the Southern California area has a procedure for collecting nervous tissue. Call 310-268-3536, the number for the National Neurological Research Bank in Los Angeles, whose information we have published from time to time as a recipient of nervous tissue of polio survivors. As you indicated, it is important to act immediately.
Follow-up: The Brain Bank was able to arrange for someone to come out and take the tissues (brain, spinal cord, pituitary, blood, CSF) this afternoon. They are at brainbank@UCLA.edu. Thank you so much for helping us make the connection. They were wonderful on the phone, ad the funeral director said that matters were arranged very quickly.
