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