ALS (1 Viewer)

[Cjw_55106]

My son, who is a Freshman, told me his friend wasnt at school yesterday because his dad was diagnosed with ALS. I took to the internet last night and it seems 2-5 years is the average life expectancy.

It seems there is an outside chance he could live up to 20 years, but that seems remote. Anyone have any experience with this?

 

[walnutz]

One of my really good friends was diagnosed with ALS last year. Not terribly sure on a lot of it. His symptoms seemed to proceed pretty fast once the diagnosis came in. 2-5 years is pretty commonly the life span that I have heard.

Sorry to hear it. It is an incredibly ####ty disease.

 

[TLEF316]

Back in like 2005, there was a freshman in the basketball program at my old high school. His father had been diagnosed with ALS about 18 months earlier. At that point, he was already completely wheelchair bound and obviously required 24/7 nursing care. He could still make small movements and could sort of communicate verbally but it was a really tough situation. They didn't think he had a ton of time left (due to the rapid progression) so they let his son sit on the varsity team and play some mop up duty at the end of games. (since they didn't think the father would live long enough to see him actually make the team and be a contributor). My younger brother graduated that year so I kind of loss track of the situation.

I had always assumed that the father had eventually passed away.

2 years ago the team made a deep run in the state tournament so my dad and I decided to go watch a game. I walk into the gym and sure enough...the father is still alive sitting in his usual spot. This is almost 10 years later. Not only did he live to see his older son finish out his career, but his younger son as well. At this point, he's 100% immobile and has lost all ability to communicate, but he's still alive.

So I guess the point of the story is that people can live a pretty long time with this and the progression of the symptoms is pretty unpredictable. Personally, if it were me, I'm not sure I'd want to spend all that time (or any time really) in a state of total dependance on others. But I'm guessing someone with children who just wants to see them grow up would feel much differently. Its just an incredibly sad disease and unfortunately it doesn't look like we've made a ton of progress in treating it.

 

[Cjw_55106]

Thanks for the info. So am I correct in assuming that while you eventually lose all physical abilities, you are still fully functioning mentally?

 

[beer 30]

Thanks for the info. So am I correct in assuming that while you eventually lose all physical abilities, you are still fully functioning mentally?

Yes, kind of the opposite of Alzheimer's were your mind turns to mush but your body is healthy. My f-i-l passed from ALS and we have a few friends that are in various stages of it now. F-i-l had shown signs for a while but nothing overt, just little things like increasing slurred speech. He was diagnosed in December and passed away in February so it was a very quick decline for him (and a pretty horrible way to go if you read up on it).

Take that in contrast to a friend of ours who was diagnosed 8 years ago and while he has lost most functionality of his limbs and is slowing losing his ability to speak, still preserves on. The doctors gave him 2 years, he's since seen his son married and 3 grandchildren and is an absolute rock at our church. He is getting close to the end of his journey but I never bet against him.

 

[Dan Lambskin]

My friends dads friend had it

He would ask him to help him kill himself anytime he visited.

 

[Johnnymac]

I worked with two people who had it, one was in his 50's and the other was in his 20's. They are both gone now, been several years ago. The one friend died when he was just 27. Had a one or 2 year old baby too. Really sad, just a terrible disease.

 

[Zigg]

Whenever I see someone on the news trying to make assisted suicide legal, they have ALS. Just an awful disease.

 

[Spanky24]

I lost a close family friend to it 10 years ago. From diagnosis to his passing it was just over 2 years, happened waaaay to fast.

Awful, awful disease.

 

[belljr]

My son, who is a Freshman, told me his friend wasnt at school yesterday because his dad was diagnosed with ALS. I took to the internet last night and it seems 2-5 years is the average life expectancy.

It seems there is an outside chance he could live up to 20 years, but that seems remote. Anyone have any experience with this?

think my cousin made it 6

 

[chet]

Terrible disease. Stephen Hawking has lived with it for 50+ years so there are exceptions. GL

 

[badmojo1006]

Whenever I see someone on the news trying to make assisted suicide legal, they have ALS. Just an awful disease.

My sister had it. Just died in 2013. But she had it at least 10 years. The last 2 years were so painful. I can't tell you how many times when I visited her I wanted to put the pillow over her face

 

[Doctor Detroit]

Whenever I see someone on the news trying to make assisted suicide legal, they have ALS. Just an awful disease.

My sister had it. Just died in 2013. But she had it at least 10 years. The last 2 years were so painful. I can't tell you how many times when I visited her I wanted to put the pillow over her face

Jeez, that sucks. Among the worst afflictions possible.

 

[Johnnymac]

Whenever I see someone on the news trying to make assisted suicide legal, they have ALS. Just an awful disease.

My sister had it. Just died in 2013. But she had it at least 10 years. The last 2 years were so painful. I can't tell you how many times when I visited her I wanted to put the pillow over her face

Wow that's just awful. So sorry for your loss and what you had to go through. It really is an awful disease.

 

[The Kerminator]

Had a good friend with ALS. Passed away about 2 years after diagnosis. Horrible horrible disease.

 

[Judge Smails]

Hate to even think about it. Horrible. Can't even imagine.

 

[Daywalker]

My co-workers MIL just got diagnosed two days ago. She's 62.

 

[Emerson Biggens]

One of my best friends got diagnosed when he was 32, died 2 and a half years later. He was a tremendous athlete and it just took over quickly. Terrible, awful disease.