Wish they could whoop ALS

[Archaea]

http://www.deseretnews.com/dn/view/0...212240,00.html

[FMCoug]

You have no idea. We have a nasty strain of familial ALS (the type that is hereditary) that runs in my dad's family. My Dad, two of his brothers, his mom and her sister, and one of my first cousins all died of it. We assume it goes further back but was unknown before then.

Oh and if you have a parent that died of it, there is a 50% chance you will get it.

[bYuPride]

Originally Posted by Archaea

http://www.deseretnews.com/dn/view/0...212240,00.html

Wow... I don't deal well with death so that story was hard to read. Best of luck to them! That's amazing what he's doing and how well she has survived all this time...

[MikeWaters]

Originally Posted by FMCoug

You have no idea. We have a nasty strain of familial ALS (the type that is hereditary) that runs in my dad's family. My Dad, two of his brothers, his mom and her sister, and one of my first cousins all died of it. We assume it goes further back but was unknown before then.

Oh and if you have a parent that died of it, there is a 50% chance you will get it.

Here's to the dice rolling the way you would prefer!

[Archaea]

May you beat the odds.

Ironman had a guy a year or two ago in Kona, who had ALS. It was very sad knowing he would not likely beat the odds, once he was diagnosed. Progress with this disease is very slow.

I saw Mike's post below and realized I had incorrectly identified the false disease. It was ALS that this athlete had.

[MikeWaters]

MS is peanuts compared to ALS.

[FMCoug]

Originally Posted by Archaea

May you beat the odds.

Ironman had a guy a year or two ago in Kona, who had ALS. It was very sad knowing he would not likely beat the odds, once he was diagnosed. Progress with this disease is very slow.

I saw Mike's post below and realized I had incorrectly identified the false disease. It was ALS that this athlete had.

Progress is extremely slow. I know there is not much funding because it's not real well known and its incidence is fairly low (a good thing to be sure).

I've done a fair amount of reading up on this for obvious reasons. One of the things I found most interesting is that there is not affirmative diagnosis for the disease. They basically have to rule out other neurological disorders first until all they are left with is ALS. If I remember correctly, the closest they have come to finding a genetic marker is they can do a test on people like myself who have it in the family to see if you carry the gene. But if you hve it it just means you are in the 50% possibility pool. Mike or some of the other docs might know better but that's my understanding.

But then there is the emotional part of such a test. If they had such as test to say I was going to get it or not, would I want it? Interesting dilemma.

[MikeWaters]

At the very least, you might take comfort that should you be called across the veil, your family will not be destitute (assuming you are not in huge debt!).

It would be a tough call, whether to get the test. Families with Huntington's disease have the same dilemma. And in some ways it is worse, because you know you will rapidly become demented and crazy before you die.

This may be one of the cases where one is not disappointed with non-paternity (i.e. Milkman syndrome).

[FMCoug]

Good pont re: Huntington's. One of the good things about ALS is that it does not affect the mind. It really comes down to removing the ventilator when the time comes.

Another good thing about ALS. The incidence is low enough that they don't ask about it on life insurance. Which is a very good thing as if they did I'm fairly certain I would be uninsurable. And we're loaded for bear on the life insurance for that reason. So the family will be fine.

[SteelBlue]

My uncle is dying of ALS. He's in his third year and deteriorating rapidly. Very tough way to go.