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orangeherring

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Learn about ALS
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Seattle
This is my first post on this web site. I am deeply moved by the experiences I have read on this forum and by the outpouring of support provided by the individuals here.

In my limited research of ALS, I have noticed that many of the people diagnosed are seemingly of normal weight, or at least close to normal weight, but I've never actually looked at numbers on this subject. Just anecdotally, it seems to me that thin people are disproportionately diagnosed. I even remember reading an article once that tried to provide a weak link between ALS and runners or something.

Has anyone ever heard of or encountered an individual (yourself included) diagnosed with ALS who was obese or very heavy?
 
Hi Orangeherring,
Welcome to this site.
I havent heard of weight being a factor of ending up with MND.

Most people during diagnosed end up loosing weight though as a consiquence of the condition thus when finally diagnosed they are lighter than they were, if that makes sence.


In my case when i first noticed symptoms i had a BMI of app 37.
during the following couple of years i made an effort to reduce weight, (ease the pressure on my legs) and on diagnosed i was at a BMI of app 33.Currently still at that level (maintaining weight is important)

Both those figures put me in the obese range but i am happy that i am maintaning my current weight.

cheers:smile:
Peter
 
Hey Orangeherring,

Welcome to the site.

Interesting name you have. With some white stripes , we could call you Nemo.

I , for one , started out 55 lbs overweight. I have always been able to eat . I am happy to say that even though I have made the PEG preparation , I can still feed the pie hole. Pecan , apple , lemon merange , key lime ,,, OH YES , I love food.

So far I have been keeping up the weight , though the shift is showing. Arms and legs and even my smartass wideass are sending the weight to my tummy. Its what the doctor ordered. I mentioned it the first time I met her at Rehab, and she said , by all means , keep my weight up. "Yes Mam , I can follow that recommendation".

I am still pushing 240 lbs.

Glen
 
Thank you for your responses. In learning about such a mysterious disease, it can be seductive to come up with pet theories. I don't know how doctors collect data about ALS, but I feel as though they don't know enough. It would be nice if there were a database of information for patients to self-report to, where researchers could look at the data and try to come up with theories and ideas.
 
I wish I were slim and trim, but most of my adult life I've been overweight (not obese), compounded by having three kids. I actually gained weight during the 18 months from onset of symptoms to diagnosis, I believe from a combination of decreased activity and mild depression resulting in extra drinking and chocolate consumption. In fact I have continued to gain weight since my diagnosis and am now the heaviest I have ever been outside of pregnancy. My doctor told me not to lose weight. Now he tells me after I spent the last 25 years on a diet! :) I have limb onset and thankfully still no problems eating.
 
I think what you are referring to is a possible link between very physically active people and ALS. And that activity could have been in the past, for example high school athletics.

Washington University in St. Louis mentions it on their website.

Just because you are fat or skinny now has no relevance apparently. And I'm not a doctor, so what do I know?

Most likely the relevance of where you were standing during the last lunar eclipse has as much to do with it as whether you are fat or skinny.:lol:

p.s. OK, I'm a smart-aleck too.
 
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