Am I going to outlive this ?

Status
Not open for further replies.

TRB1

New member
Joined
Dec 6, 2010
Messages
8
Reason
PALS
Diagnosis
11/2010
Country
UK
State
Sussex
City
Chichester
I am 74. Not exactly in the first flush of youth. Until this year I sailed regularly but it got to a stage where I began to feel if I was always on the foredeck in a gale....even when I wasn't on the boat. Got suspicious so went to my GP a year ago and after all the usual tests was confirmed with PLS last week.
Now, all my family have lived into their 90's and I am told that barring accidents, (Which I seem to be having more and more recently) I could possibly live to my mothers age, she is just coming up 97. What I seek is some idea of what I can expect in, let us say 5 years. Currently I walk, with some difficulty, aided by a stick. I stagger around the house, up and down stairs very slowly. I still drive, fortunately this ability does not seem be be a problem yet..... but what can I expect in 5 or even 10 years....if I'm still here ?
 
Hi and welcome. I wish there was somebody that could answer your golden question. To have a looking glass would be great. Unfortunately there is no real answer. I have done much research into trying to get that answer myself and there is none. On average PLS moves at about a quarter the speed of ALS. so average 3 - 5 years becomes 12 -20 for PLS. But the speed of progression differs enormously. I know a chap who is in a wheelchair on a feeding tube at 6 years, others are limping a nd a bit week after 10 years. Best just to not think too long and hard about the natural progression on PLS because it's so rare that it's not been researched as much as other neurological illnesses.

I am sorry not to be able to help. If you post a thread on the PLS forum then others could give their experience, although we all differ, no 2 are alike.

I have been diagnosed early this year after 3 years of symptoms. I have a pronounced limp, turning in feet and proximal weakness. Still get about, but it's tiring. I still work partime as a neurology study coordinator and run a very busy
household. I am 49 . I can imagine that in your 70s this illness will be exhausting you.

Best of luck and again welcome
Aly
 
Thanks for your comments Aly. I have been connected closely with Pathology all my life but PLS is something that although it shows up on the Brain there doesn't seem to be any reason why. I did wonder if in my case it was the result of all the formaline fumes I must have ingested over the years, but it seems unlikely.
At least with PLS there is virtually no great pain apart from cramp, and that resulting from the very occasional fall. Its when I cant use a computer any more that things will get hard. However looking on the bright side Stephen Hawkings has managed up to now so who am I to complain.
 
Status
Not open for further replies.
Back
Top