Status
Not open for further replies.

boston

New member
Joined
Jan 20, 2015
Messages
1
Reason
CALS
Diagnosis
08/2014
Country
US
State
Massachusetts
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
 

GregK

Extremely helpful member
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
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?
 

travelbugg

Member
Joined
Apr 3, 2014
Messages
17
Reason
CALS
Diagnosis
01/2014
Country
CA
State
ON
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.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,629
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
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
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
>You do not necessarily have to wait until you are dead to help.

same for our clinic w/ appell ...
 
Status
Not open for further replies.
Top