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Elliemae

New member
Joined
Aug 23, 2014
Messages
7
Reason
PALS
Diagnosis
04/2013
Country
CA
State
ON
City
Windsor
Hi everyone, I've been reading some of the posts here and can relate to the frustrations with this disease. On one hand we are lucky we don't have ALS but we have a longer life to live with poor quality and lack of independence. On top of that we are at the bottom for any clinical trials. I read with interest about trials in Massachusetts on the "brainstorm" website. It certainly looks promising but they're only accepting U.S. residents in the Massachusetts area with ALS as volunteers. Thank God the ice bucket challenge went viral and money raised could lead to more trials worldwide. There's still hope for us :)
 
>Thank God the ice bucket challenge went viral and money raised could lead to more trials worldwide. There's still hope for us


:) hope can be like faith -- a renewing factor
 
I'm skeptical about the stem cell trials and so is my neurologist. If the disease attacks motor neurons why would it not attack those created by stem cells? So don't feel bad that you can't participate. It's a long shot. A blogger who had a transplant felt that it helped her for a while. She hasn't posted for some time. Don't know what that means.....
 
Schmidhogan, google "did an Israeli company discover a cure for ALS". It seems the drug called NurOwn is what makes the difference. There's clinical trials in Massachusetts now. I don't think they would go to the expense of trials without evidence it may lead to a cure.
 
There is ho pe that Brainstorm may be a treatment. Most people seem to feel if it does work it will require repeated treatments. My guess is that it may help some and not others just like the other stem cell method. Mass General is trialling both. Brainstorm is very restrictive and has lots of exclusions besides geography and citizenship. I met all the criteria except I have not had ALS long enough. ( 1-2 years is the window)
 
I have a feeling that a cure for als will be a cure for pls. But then I've always been cynically optimistic.
 
I asked my doc. if a cure for als was a cure for pls and he said yes. And I also google Nurown trials. I feel hopeful when I do that.

I don't fall as much now. I broke my clavicle last November. 3:30am Thanksgiving
morning. I now use a light weight 3 wheel rollator that I can easily lift in and out of
my car. I don't leave home without it. At home I use a 4 wheeler with a seat. The
seat is for transferring objects from one part of the house to the other. It is quite
convenient.

And when you are out in the public with the rollator you will never have to lift a
finger again. People will run to open doors for you. Children are terrific. I have
a renewed faith in the kindness of others. GET A ROLLATOR. You won't fall nearly
as much.

Also, when I am outside walking around trying to pull weeds, dead head roses etc
I use knee pads and a bike helmet. It's not a pretty sight but who the heck cares.
Be careful. Preserve your body for the cure.
 
> I use knee pads

Ah, yes. I remember the days when I could get down on my knees (on purpose!)
-----------------
I believe Max said once "While there's life, there's hope!"

Hi there Ellie Mae. How's Jed...? ;^)
 
I use knee pads to prevent knee damage when I fall out on rocks and brick. I can still
get down on knees but it hurts almost immediately and there has to be something to
hang onto to get myself up. I still can't believe this is me.
 
I agree Chris, I fell numerous times but didn't break any bones. I did however split my head open taking 10 staples to close the wound and two days later went down on my face and shortly after bulbar onset. I got a rollator and although I fell less, I still fell rollator and all. I got diagnosed properly 2 yrs later. If I got down on my knees I would topple over like a turtle.
Greg, Jed is eating dinner at the fancy eatin table with the pot passers (pool table) :)
 
Sorry to hear you didn't qualify, Nikki ... I thought they wanted people who had ALS less than 2 yrs. Maybe they will accept you eventually. I wish they would hurry up for all our sake.
 
>Hi there Ellie Mae. How's Jed...? ;^)

lol !
 
The 1-2 years is in the very fine print my neuro was hoping they would remove the restriction on the first end. But who knows what is around the corner? Good things I hope!
 
When we were in doc they did an excellent stem cell overview. A lot has to do with type, embryonic/IPS, and where they are placed, see NeuroStem and compare with Amy Feldman's work at U of M.
 
Exciting new for sure Max, hopefully soon we can all do a collective sigh if relief :)
 
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