ALS- Questions

tarcone · 05-12-2017, 10:45 PM

I just connected with an old friend. My best friend from HS. I was his best man at his wedding. We went our separate ways about 20 years ago. Last saw him 12 years ago.
I have always looked for him, but could never find him. Some other mutual friends could never find him.

I finally did. It was great to reconnect. I really missed him. He told me he was diagnosed with ALS 3 months ago. He is 49.

Does anyone have any experience with this disease?
Is it true that he will only live about 5 years?
I read there are variables, but how likely is it that he will live longer?

Any help would be great.

Groundhog · 05-13-2017, 08:42 AM

I've had a non-blood uncle and a friend of a close friend both diagnosed with ALS within the past 2 years. Maybe most cruelly, the later was a nurse looking after people with ALS (amongst other similar diseases). All I can say is that there are some treatments today that can potentially enhance quality of life beyond what was expected a few years ago, but it's still a pretty grim outlook.

cartman · 05-14-2017, 11:48 AM

I had one of my mentors pass away from ALS a few years ago. It is a fucking horrible disease. Your mind is absolutely fine, and you are completely aware of your body failing. The outliers like Stephen Hawking are incredibly rare. Like you said, the average time between diagnosis and passing from ALS is about 5 years. Sorry to hear about the struggle your friend is now facing.

EagleFan · 05-14-2017, 12:01 PM

Sorry to hear that.

MizzouRah · 05-14-2017, 11:10 PM

I didn't even know someone that young could get ALS.. thoughts and prayers go out to you and your friend.

05-13-2017, 08:42 AM	#2
Groundhog Coordinator Join Date: Dec 2003 Location: Sydney, Australia	I've had a non-blood uncle and a friend of a close friend both diagnosed with ALS within the past 2 years. Maybe most cruelly, the later was a nurse looking after people with ALS (amongst other similar diseases). All I can say is that there are some treatments today that can potentially enhance quality of life beyond what was expected a few years ago, but it's still a pretty grim outlook. __________________ Politics, n. Strife of interests masquerading as a contest of principles. --Ambrose Bierce Last edited by Groundhog : 05-13-2017 at 08:42 AM.

05-14-2017, 11:48 AM	#3
cartman Death Herald Join Date: Nov 2000 Location: Le stelle la notte sono grandi e luminose nel cuore profondo del Texas	I had one of my mentors pass away from ALS a few years ago. It is a fucking horrible disease. Your mind is absolutely fine, and you are completely aware of your body failing. The outliers like Stephen Hawking are incredibly rare. Like you said, the average time between diagnosis and passing from ALS is about 5 years. Sorry to hear about the struggle your friend is now facing. __________________ Thinkin' of a master plan 'Cuz ain't nuthin' but sweat inside my hand So I dig into my pocket, all my money is spent So I dig deeper but still comin' up with lint

05-14-2017, 12:01 PM	#4
EagleFan Hall Of Famer Join Date: Nov 2000 Location: Mays Landing, NJ USA	Sorry to hear that. __________________ The EagleFan YouTube Channel - Reactions Soarin' & Scratchin' YouTube Channel - We react to music, videos, TV, we talk, we are planning some field trips Soarin' & Soothin' - Meditation, Relaxation, and Sleep Aid; mental health is important

05-14-2017, 11:10 PM	#5
MizzouRah Hall Of Famer Join Date: Sep 2002 Location: Troy, Mo	I didn't even know someone that young could get ALS.. thoughts and prayers go out to you and your friend.

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