living w/als over 10 years

Status
Not open for further replies.

hope2000

Member
Joined
Nov 15, 2010
Messages
26
Reason
PALS
Diagnosis
08/2000
Country
US
State
texas
City
kyle
:p Is there anyone out there that can tell me if u have lived this long and still self sufficient
 
nope! Sorry.
Patsy
 
I was diagnosed 10 years ago last month. Still functioning reasonably well. Can't walk but can stand if I hold on to something, can make myself understood, breathe unassisted, eat without a PEG and am still working.
 
I have heard through my ALS assoc. nurse that she knows someone who's had it 10 years. I can't say who, because I don't have her permission, but she still has a good quality of life.
 
This disease can progress slow or fast or even stop at a certain point. I love to hear of those who are living well with this disease, and it gives us hope to hear of 10, even 20 years. But i also have such love and admiration for thoses who have the full blown ALS but live theri lives so fully they inspire me to want to live well WITH this disease no matter what stage of it. We are wired for hope by our Creator, so i like to shoot for the highest hope presented to me in the moment, and when that is no longer possible, I shoot for the next highest possible hope available to me. This keeps me from sinking into living a diagnosis, rather than living my life. Right now I am making walking memories at the beach and in the mountains, so if I can no longer walk, I will be able to savor the meorey that God has given me as such a great gift. Then rather than be bitter over a loss, I can be full of gratitude for what i have been given and loss. How many people are not grateful for being able to do normal things like walk or talk or eat, or even breath? ALS can shake us out of that forgrantedness right into thankfulness and living fully the life we now have.
 
where do u live.what state
 
SOOOOOO! Happy 2 hear that John God bless U. Ur the first I've heard of that has lived 10 years. now theres 2 of us. I know theres more out there hopefully they will respond..
 
where do u live.what state
Hello Hope. I'm not sure if this is addressed to me but, if so, I live in Newfoundland, Canada. I do feel very fortunate. Hope you feel the same about yourself.
 
Yes John it was 4 u I feel very fortunate, I stopped working a few years ago cause got weak, and have lots of pain I also take muscle relaxers 2. I remember when it first started I would tell my drs. that I had lots of pain and some would say pain isn't associated w/als well they were wrong as the years have gone by I hear more and more about als patients having pain I guess they r still learning from us.......
 
Since you insist you want your thread in the "Stories of Hope" section I have moved it here.
 
Hi guys,

Take a look at Patients Like Me, maybe a UK website. There is a guy in Burnley, UK who is at 18 years! So set your sights long into the future.

Best wishes

Graham
 
We live in ky husband was diagnosed last year in dec. doc told us he has had 12 years that is when he had his first afo braces put on.
 
Status
Not open for further replies.
Back
Top