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karzy81

Active member
Joined
Nov 7, 2017
Messages
52
Reason
Loved one DX
Diagnosis
03/2018
Country
CA
State
ON
City
Thornhill
Hi Everyone. I just want to say that I am very grateful for this site and the time that everyone takes to respond to each post. My dad started displaying symptoms last summer. He was falling a lot and having fasiculations. He went through a boat load of tests and was diagnosed with als this past March. On the day of his diagnosis he could walk the hallways at the hospital. Fast forward to this month and he couldn’t even get into the hospital without a walker. He took a breathing test and he is still at 89 which the doctor says is good. I have no idea what that means. His upper body is still working pretty well, he just has a bit of weakness. No eating issues either. I guess what I am wondering is, if he progressed this fast in relation to his legs will it continue at this pace and affect everything else pretty fast as well. I know there is no straight answer, I guess I just want to hear everyone else’s experience.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,239
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
You’re correct that there is no straight answer. Each muscle area seems to have its own rate of progression, though some people are fast progressors and others slow in general.

I was progressing fast in the legs for a while. Then the hands started in. Then the hands plateaued. Now the hands are progressing like gang busters, the legs moderately slowly. The bulbar and respiratory regions are progressing much more slowly. I can still walk, but hands are starting to fail.

So everyone is different. There is little rhyme or reason. It’s hard to make plans and forecasts.
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
963
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
City
Barrie
Lacking a crystal ball no one knows. Having said that the life limiting factor in ALS is breathing. You can loose every other muscle in the body, as long as your diaphragm( phrenic nerve) holds out. So if the first thing to go is the phrenic nerve, you have a short prognosis. In Steven Hawking's case he lost most muscle control fairly quickly, but did not need breathing support for Twenty odd years. And that was held off for another twenty odd years on a ventilator. Bipap support is vital to not over stress the diaphragm. But that usually isnt an issue until you are <60%. Hope that helps. I have been on Bipap over night for 2+ years and my breathing has been stable around 50% since.

Vincent
 

Tessiegirl

Active member
Joined
Jul 15, 2018
Messages
32
Reason
PALS
Country
US
State
South Carolina
City
Inman
ALS stops ,starts back up,plateaus,or in some cases reverses. Worry about things as they occur . It will run u nuts otherwise. I’m a long time survivor and you have to stay positive. I will beat this disease hopefully to die of something else. Run away bus anyone? Lol
 

chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,255
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
City
renick
Everyone seems to be different but one thing is certain, comfort levels. Get what equipment you need before you need it and you will be ahead of the nightmare.
Sorry your here the fourm is great resource post often
Welcome
Chally
 

ThisPresentMoment

Distinguished member
Joined
May 30, 2018
Messages
123
Reason
Lost a loved one
Diagnosis
12/2017
Country
US
State
MN
City
Minneapolis
Agree with Chally on equipment! Has he been measured for a power wheelchair? Have you started on ramps or lift? What about a vehicle to transport him in a power chair?

My Dad started with arms, but we're only eight months from diagnosis and I wish we'd started the items above sooner. He went from needing a walker to needing help into or out of the house because of three steps. Right now, we have a loaner power wheelchair from ALS, temporary ramps, and we did purchase a van conversion. It makes a huge difference that Mom & Dad can come and go without help from someone else.
 

karzy81

Active member
Joined
Nov 7, 2017
Messages
52
Reason
Loved one DX
Diagnosis
03/2018
Country
CA
State
ON
City
Thornhill
Thank you everyone. We did just get a power wheelchair and it should arrive within days. He gets tired easily so it should help.
 
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