I apologize if this is a morbid question, but my 56 yr old husband has PN to the point where he is blind and bedridden (hopefully not forever), in constant pain, despite (or because of?) at least 27 meds/supplements. At one point they told me I'd never get him home, but thanks to our 'Star Plus' program, I have him home with 50 hours a week of attendant care. I checked him into a nursing home for Respite Care (after 2 years of non-stop caregiving and bedside vigils) and they asked which funeral home I'd want him sent to (a standard question). I was told if I wanted his body 'donated to science' I had to have that pre-arranged. So, what I'm asking is, 'How do I find out if there is an institution interested in doing an autopsy to learn more about PN?' We live near Austin, TX.

know what kind of PN?

I believe your local hospital could help you as far as autopsies. This is a sad situation.

I'm not sure I want, or would be able to pay for, an autopsy, although one of the staff neurologists was interested enough to probably study, so I will check into it. His PCP said being bedbound would probably mean he'll survive 4-5 years. He has atonal and demylineating PN, caused by nutritional deficiencies following rapid (unplanned) weight loss (almost 200 pounds in less than 3 months..I blame personality change brought on by medication, mostly clonidine/catapres (spelling?)).

Good heavens, what a sad story! Yes, precisely what type of PN does he have?

If you have a well-known medical school near Austin, you could call them. I know that here in Ohio, Ohio State University School of Medicine does accept remains for research. Our niece's husband wanted his remains to go there and they were accepted by OSU in June.

Best wishes,

Sheltiemom

I know that a lot of places do not charge for an autopsy. They want to learn too. It is a sad situation.

I think you are one of the bravest people I know - your life must be so difficult and yet you are thinking of helping others find a cure. I wish you so much luck.

My institution is interested in MY body, and I am not near freaking dead yet!

I am sure a lot of places would appreciate this donation, if this is what your husband specified, then, certainly I would look around.

You might check with the Neuropathy Assn. at
www.neuropathy.org
they fund research, and could probably direct you to the right institution.

Just to add a note, I am truly sorry for what you and your husband have endured....This disease is awful and it medical science has made so little progress on it.

I agree, as Bob said, the Neuropathy Assn. or you can google neuropathy centers to see if any of them would be interested.

My doctor already told me, my brain would be of use to them, and as goulish of a thought that is to me, I am glad he let me know it would be helpful. Not all institutions want bodies for science. Some have too many.

I would say also, make sure that blood has been reserved for a full genetic study on your husband. If you have offspring, it would be a good idea. My worst fear is what I have is some genetic disease yet undiscovered....and has passed to yet my grandchildren.

Hugs to you in your trying time....this is a painful thing to go thru, and my heart goes out to you. And thank you, for your offer to science, for those of us still suffering with this disease. I will PM you my academic center, and you can see if they are interested.