Status
Not open for further replies.

Blaine

New member
Joined
Jul 15, 2006
Messages
2
Reason
PALS
Country
US
State
Kansas
City
Leavenworth
I was recently diagnosed a few days ago. I have suspected a ALS diagnosis for two months. It is a very helpless feeling as you all know. In your experiences do you know of any medicine or vitamin supplements to slow down the disease process. Any information that you have would be helpful.
 

rcharlton

Moderator emeritus
Joined
Jun 20, 2005
Messages
610
Reason
PALS
Diagnosis
11/2005
Country
CA
State
Ontario
City
Toronto
Hi Blaine,

Sorry to hear about your situation. I'm sure you are pretty overwhelmed right now. After I was diagnosed I assumed I would never be able to laugh or be happy again. It's been over a year now - and I laugh plenty. You will adapt to a new normal very quickly.

The ONLY medecine which has been CLINICALLY PROVEN to have any impact on the progression of ALS is rilutek (riluzole) - and we are talking of about 3 months to 1 year of increased lifespan and quality of life.

Whatever you do - don't spend any significant money on any potions or products. Don't substitute someone else's common sense for your own.

Anyone telling you that any specific regimen, treatment or diet definately makes a perceptable difference is probably lying or deluded.

Due to the nature of ALS - it's virtually impossible to tell if any given treatment is making a difference - any perceived improvement may simply be the natural course of the disease which naturally has its up and downs - if an improvement is due to some diet change or supplement - who knows if it was due to something you did yesterday or a year ago - no one can say for sure - outside of a controlled test environment (and even then it would be tough) it's impossible to say.

Having said this - from a general health point of view it makes sense to focus on diet - will it have an impact on your ALS? Who knows - but there are enough related health benefits to justify making a conscious effort to eat healthier - but don't go bananas. Try and eat organic foods when you can - limit processed food intake.

Shortly after I was diagnosed I was very strict about my diet - was afraid to go out - stressed about eating. Now - I still watch what I eat - but I want to live a bit too. So I'm treating myself more often. If I'm going to have a feeding tube stuck in me I want my memory of food to be of something I enjoy - not dry organic granola and raw vegetables - I'll save that stuff for the feeding tube.

Good luck.

Al and David - do you have your Scam radar on re Glutathione?

I think we should have a sticky for newly diagnosed patients about this subject because it keeps coming up.

Richard
 

David

Moderator
Joined
Apr 24, 2003
Messages
391
Reason
Other
Diagnosis
00/0000
Country
CA
State
ON
City
Cobourg
Richard, the thread you mention has been closed.

I'm skeptical also; it appears that these individuals promote a new therapy every 2-3 months, cash in on the marketing and then move on to the next "greatest new therapy".
 
Status
Not open for further replies.
Top