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NicoleS

New member
Joined
Jan 12, 2007
Messages
1
Reason
PALS
Country
US
State
New Jersey
City
Mays Landing
Hi my names nicole my step dad was recently diagnosed with ALS and my family and I are going through a very rough time. I was wondering if people can let me know what its like further down the road. He currently has some problems with his balance and still has his speech but thats going away. My mom is really stuggling and i dont know what to do to cheer her up because i dont even know how to help myself. Anything positive would be great to hear. thanks a lot i hope to hear from a lot of you thanks for your time.

-Nicole S.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Nicole. Welcome to our little corner of the world. Can we ask where you are from? It makes a difference in what organizations are available for support and information.
 

edna may

Active member
Joined
Dec 13, 2006
Messages
66
Reason
PALS
Country
US
State
orange county
City
laguna woods
Edna May

Hi Nicole, I was dX 8 months ago, My voice was bad but now is impossible for most people to understand, I now walk with a walker. it is diferent for every one can not even give it a guess as to what is in the future. You will get many of your answers when he checks in with an ALS clinic. Good luck & chin up. EM
 

hboyajian

Distinguished member
Joined
Oct 31, 2006
Messages
267
Reason
Lost a loved one
Country
US
State
Washington
City
Vashon
Hi Nicole, As each person experiences the progression of this illness a little bit differently (or even very differently) there is no guidemap of exactly what to expect next. My father, for example, lost his ability to straighten his spine first, then strength in his arms legs faded such that he was dependent on a walker, next his swallowing became difficult until he could only eat blended food. He could still talk until the end, though it was a little harder for him to enunciate, and just a short conversation exhausted him. I had gotten it in my head that he would become much weaker and be unable to walk or move his hands at all before he lost breathing function, but this was not how it went. He was able to button his own shirt, albeit slowly and with great effort, until the day he passed away. This is quite different from any number of other people with ALS. One thing that appears to me to be consistent is that the illness keeps progressing and people have to adjust, some quite rapidly, to increasing disability. It seemed to us that we were just getting used to a new need when something else, and more serious, developed that had to be coped with. If it is possible, try to stay one step ahead with equipment that will be needed, as when you need it you really need it soon if not immmediately. A suction machine was quite helpful at first, but became critical just days afterward. We had a bath slider waiting in the store room though dad still could climb over the edge of the tub to use the bath chair.
 
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