4 ms·

I lost a parent to ALS. Morbidly, I guess for me it might be a race between that and the cancers that killed off the other side of the family. I don't really

by jddj 3y ago

I lost a parent to ALS. Morbidly, I guess for me it might be a race between that and the cancers that killed off the other side of the family. I don't really care to get checked for the gene, but I do have a general idea of what needs to happen once the speech starts to go.

ToddWBurgess 3y ago
Lost my mother to ALS. She was a nurse so she made a point to ask if there was a chance she passed it onto her kids and was assured no we are fine. It is a small consolation considering all she had to endure. ALS is a horrible way to exit this earth. It is a death I would wish on no one
bloomingeek 3y ago
Sorry to hear. My aunt died of ALS, so my sister and I scheduled some tests with a neurologist for some peace of mind.
A_D_E_P_T 3y ago
> Morbidly, I guess for me it might be a race between that and the cancers that killed off the other side of the family. ≤10% of ALS is inherited. And even if you carry a gene which makes you more susceptible to ALS, the risk seems to cap out at ~50%. So, at worst, it's a coin flip. So. It's not an inevitability -- not certain doom. It's a roll of the dice, with the odds in your favor.
- asveikau 3y ago
  The article says that is true for most of the mutations causing ALS, but the specific mutation that the subject of the story has is more of an inevitability than the other, more common ones.
- jddj 3y ago
  That's true, and if I were a gambling man I'd probably back the various cancers in that competition anyway, but still these things have a way of changing your outlook in subtle ways. That coin-flip-at-worst still probably gives one a better than evens chance of falling on the side of the average life expectancy where folks don't live to enjoy a long healthy retirement, for example. You might, though, so you can't burn it all either. There's also some added complexity that comes along for the ride when choosing to have children or not, saddled with a family history of nasty, fairly early onset baggage. Another commenter said that embryo selection can help in that regard, which is an interesting angle that I hadn't considered.

by jddj 3y ago

ToddWBurgess 3y ago

Lost my mother to ALS. She was a nurse so she made a point to ask if there was a chance she passed it onto her kids and was assured no we are fine. It is a small consolation considering all she had to endure. ALS is a horrible way to exit this earth. It is a death I would wish on no one

bloomingeek 3y ago

Sorry to hear. My aunt died of ALS, so my sister and I scheduled some tests with a neurologist for some peace of mind.

A_D_E_P_T 3y ago

> Morbidly, I guess for me it might be a race between that and the cancers that killed off the other side of the family. ≤10% of ALS is inherited. And even if you carry a gene which makes you more susceptible to ALS, the risk seems to cap out at ~50%. So, at worst, it's a coin flip. So. It's not an inevitability -- not certain doom. It's a roll of the dice, with the odds in your favor.

asveikau 3y ago
The article says that is true for most of the mutations causing ALS, but the specific mutation that the subject of the story has is more of an inevitability than the other, more common ones.
jddj 3y ago
That's true, and if I were a gambling man I'd probably back the various cancers in that competition anyway, but still these things have a way of changing your outlook in subtle ways. That coin-flip-at-worst still probably gives one a better than evens chance of falling on the side of the average life expectancy where folks don't live to enjoy a long healthy retirement, for example. You might, though, so you can't burn it all either. There's also some added complexity that comes along for the ride when choosing to have children or not, saddled with a family history of nasty, fairly early onset baggage. Another commenter said that embryo selection can help in that regard, which is an interesting angle that I hadn't considered.