Old 01-20-2015, 09:24 PM #1 (permalink)
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Default research

Hi,
It has been suggested I introduce myself so since I am a moron re; technology, here I go.
My husband had a shower stroke (six blood clots) in July, 2011. When he experienced left
arm weakness, we just assumed it was stroke related.
When his knee flew upwards at the dr' office, I knew something was wrong. I googled EMG and
found the answer. He has rapid progression and we all are fortunate that he lost his mobility and now is losing speech. And who said ALS rarely causes incontinence? He was diagnosed in
August, 2014.
I am furious that tissue donation is not recommended for those with ALS, because no one with
ALS is a wimp! As one doc just said "well, it may be upsetting to some people." Really? Like turning into someone who cannot move is not upsetting! Or not being able to walk, talk or eat?
I don't understand how they can find the cure for ALS/MND without brain and spinal cord
tissue. Isn't that like trying to find the cure for cancer without cancer cells?
And really, assuming that patients cannot tolerate the idea of donating brain tissue is rather
patronizing, isn't it? Maybe the patients should decide on their own and the docs should make
it easy for families to follow thru on donation. Everyone wants this disease to end. Best to all,
Boston
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Old 01-20-2015, 10:02 PM #2 (permalink)
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Default Re: research

Wow. Your husband has had quite a run. I'm so sorry.

Regarding the tissue donation I suggest this page from the ALS Association and this page from the CDC.

And finally, is your hubby a veteran?
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Old 01-20-2015, 10:20 PM #3 (permalink)
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Default Re: research

Hi Boston, I agree with you that we need tissue donations galore if we're ever going to find a cure. In fact, we go to an ALS clinic in Toronto, and on our second visit we were asked if the research team could speak with us. One of the researchers has a lot of ALS in her family, and so has a personal interest. My husband gave blood that day, and has agreed to donate his eyes, brain and spinal cord after death. He also was tested for the genes.

I have already made arrangements with the funeral home and all of the paperwork is with them, so that when my husband passes, they will deliver his body directly to the research unit for autopsy before taking him to the crematorium.

I feel that it may be the only good thing to come out of this horrible disease.
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Old 01-20-2015, 11:55 PM #4 (permalink)
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Default Re: research

You do not necessarily have to wait until you are dead to help. They are studying biomarkers so if you are asked for mri,pet scan, spinal tap blood and skin they can learn a lot from those. Right now alstdi is recruiting for their precision study
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Old 01-24-2015, 04:20 AM #5 (permalink)
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Default Re: research

>You do not necessarily have to wait until you are dead to help.

same for our clinic w/ appell ...
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