Gathering statistics.

[irismarie]

We cannot do much to help ourselves but I wonder if what I am about to suggest has already been done here?
While we are all in the same boat, why not compare our pasts, searching for possible unexpected connections, similarities? For example, have more of us than the "normal" community had exceptional trauma of one kind or other in our lives? Have we been more sporty than most? (I read that an unexpectedly high number of professional footballers have ALS), etc etc.
I am ready to create a form and put it out here on the net for people to fill in to search for correlations if you think it might be any use at all. I just feel, Who knows? I read about the 'nice gene' - well, that could be the sort of thing, but that is a bit subjective and vague. I should like to hear your opinions and suggestions for items that might be included - maybe, have we sufferred from clinical depression or if we have sufferred from pollution from pesticide or herbicide use.

over to you
Irismarie

 

[sadiemae]

my husband(age 45) ran his first marathon when he was 10. He joined the Army Nat guard at 18. He worked in the asbestos removal business for 15 years. He fell 28 feet off a roof in 2004, suffering a head trauma that resulted in Meneires disease, a vertigo and balance problem resulting from the hairs in the inner ear being damaged. For the past 4 years he worked in a PVC pipe manufacturing plant around a lot of nasty chemicals. This has all been investigated, but we believe it probably has something to do with vaccines he received when he joined the Military. He did split training, so he got a double dose in a years time.

 

[indigosd]

irismarie, I do agree with you but there are just so many variables and how do you look at it scientifically? What would be ideal is if we could interest a Neuro Scientist to create a study that we could complete online in the forum. [I know it isn't cigarettes! lolol] I do think that it has something to do with immunizations and the DNA having some area that allows the disease to turn on. Maybe our focus should be to let the medical research community know that there are PALS and CALS here that are willing and able to give the information so that they could have data to sift through to find the common threads...there is a common link somewhere that ties us all to one another. We all need to be proactive. Who but us is more passionate about finding a cause and a cure?!

 

[Al]

I hate to refer people there but patients like me does some of what is being talked about here as far as profiles go. Just remember to come back here. lol.

AL.

 

[BethU]

Hopefully, when the ALS registry gets up and running next year in the US, some patterns will start to emerge. Again, hopefully, they will ask extensive questions in the registry. And even more hopefully, other countries will follow suit.

I agree that one of the fastest way to figure out what's happening is looking at what PALS may have in common in experiences and exposures.