Down Syndrome and Alzheimer's connection

kristy's picture

My 22 year old son (Forrest) with Down syndrome is grieving the death of a long time older neighbor and friend who lived with Alzhiemer's for many years. Forrest and Julie were great together,neither one ever seemed to notice that the other was different or "disabled". Julie was a scrabble champion and Forrest excels in Chess, so "connect-four" was fair compromise on rainy afternoons. Julie's pre-Alzheimer's life was that of a socially engaged wealthy widow with many friends. Forrest loves going to the movies and Julie would frequently tag along. When Julie didn't understand the plot she would look at Forrest's gleeful animation to clue her in. They were easy-going buddies and a rare authentic bond formed between them. No agency or "day program" was paying one to socialize with the other.

When I told Forrest about Julie passing away last week, he surprised me by crying intensely. He asked "why" and said he wanted to see her again. "Julie always let me sit in the front seat" he said through his tears.I remembered then something I had read about several years ago about about chromosomal similarities between people like Julie and Forrest. Scientists were searching for a useful link that would one day provide a "cure".

The relationship between Down Syndrome and Alzheimer's disease is mysterious: there is a connection between chromosome 21 in both of these. The 21st chromosome is the one that gets an extra "arm" (trisomy 21) in the beginning of fertilization that makes people with Down Syndrome share similar facial features and with unusually creative and loving personalities (remember,this is a mother writing). Studies of the brains of people with Down Syndrome reveal that, by the age of 40, almost all develop the brain changes characteristic of Alzheimer's disease. Scientists have hoped to find a link between the two "patients" in hope of one day finding a "cure".

Perhaps their relationship was a perfect anecdotal example of what science is trying to prove. I believe Julie and Forrest found the "cure" in their shared 21st chromosome. Perhaps we should consider matching up these wonderful citizens in their day programs and rehab centers.

Kenton Stafford

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Submitted by Anonymous on Sun, 08/17/2008 - 17:48.
hello You are absolutely right !!! Submitted by sidkirkland on Sat, 06/28/2008 - 23:00.
Karin Hatfield

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Layne Gould

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Submitted by Anonymous on Tue, 08/19/2008 - 06:21.
your blog

thank you so much Kristy for your thougtful musings. Every piece of information we get sent our way in new to us, as Julie was not able to relay anything to us. So we count on stories about her from others because unless we were there or someone clues us in, the memory is gone!

I had heard about the alzhiemers/down's connection some time ago and thought it was very interesting. I think this idea of pairing them up
could really be a catchy concept! I'm sure there are many people in
both categories that could benifit from being brought together. but how... Craigs list ???

Julie had such a beautiful death. I was so heartened our kids got to be
there and experience the whole thing, as it was the most incredible introduction to the reality and the actual process. and of course opened up some very interesting conversations about where she is now....

It was so perfect that Tom and I and your mom were there, each on one hand and her head in Tom's lap...Ginger probably told you she had a fighting spirit up until the last hours, and we all think she was having such a good time being the center of attention she was not liking the lights going out!! but they did, several hours later.

Thank you again for your post, and we have said many times that a side benifit of havaing Julie here the last three and a half years was the wonderful relationship we have with all of you, especially your amazing
mother.

steph and Tom

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Karin Austin

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Submitted by Anonymous on Tue, 08/19/2008 - 15:45.
Downs Syn/alzhiemers

Forgive me for intuding on your Blog. I dont know how I found it. I am at my wits end seeking long term care for my 44yr old Downs daughter now suffering Alzhiemers. I recieved notice that her home of 23yrs where she has been very happy can no longer care for her. she must be out of where she lives by June 16th 2008.I have called every Nursing Facility on the Medicaire list with no luck. I have an ulcerated stomach to show for this and countless sleepness nights. Someone please offer a glimmer of hope no matter how small if you have one .I live in South Florida . I am hoping some one can offer suggestions. The facility must be Medicare/medicaid and anyone can reply to the following email address since I dont think I could find your page to follow thorough.I am truly desperate ,Thank you all so much. J finnegan, EMAIL ADDRESS IS> englishfinn@bellsouth.net

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Lorene Hart

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Submitted by Anonymous on Tue, 08/19/2008 - 11:28.