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Seahorse714

Member
Joined
May 24, 2015
Messages
21
Reason
DX UMND/PLS
Diagnosis
05/2015
Country
US
State
Fl
City
Summerland Key
For those of you that have PLS and our using PWC, can you tell me how many years it was before you started having to use them from your diagnosis date?
 
My Pals was just a few months from a suspected diagnosis of PLS (April to September). However his diagnosed has now changed to ALS. So not sure that this is helpful to you.
 
Hi Sandy,
I wear an AFO, a foot brace. I have a scooter as I'm no longer able to drive. I have a wheelchair that's manual, which I really don't like as it takes away my independence.
I first had symptoms with my foot 3 1/2 years ago, but have only had the footbrace since July last year, and gave up driving almost twelve months ago.
You know all the boring side I guess, we are all different blah blah whatever. I'm with you by the sounds of it, if I could have specific dates for when things stop working I would be so much happier. Even though I can walk, I just get so tired these days, and my back and hips hurt like crazy if I walk too far. And I end up in bed for a few days if I over do it.
There's no easy answer.
I can feel your frustration. Keep asking questions. Questions and answers help us all.
God bless, Janelle x
 
Went to mod. Sorry Nikki and Bec! J xxxxx
 
Janelle, I was diagnosed in Mar 2012 and was in PWC by Nov 2014, so about 32 months for me. But we're all different, blah, blah, blah.... TB
 
Sorry TB, what I meant, said rather badly, is that we ARE all different, and knowing timeframes unfortunately won't change anything...sometimes I think it would be so much easier if we were the same...knowing exactly where I'm headed would be beneficial for me that's for sure.
God bless, Janelle x
 
It was about 30 months after my first walking symptoms and about 7 years from my first PLS symptoms (speech). I've talked to 2 people that have similar experiences with Bulbar PLS. I've also communicated with people that can still use a walker after 20 years. It sort of makes me believe there may be different forms of PLS. Since it can take years to get a diagnosis I think it is better to measure from first symptoms.
 
Billbell52, mine started with speech issues 7 years ago and leg/balance problems about 3 years ago. Walking normal to a PWC in about 32 months.

So my journey sounds remarkably similar to yours. Thank you for sharing. TB
 
MOD = Moderator PALS = People with ALS CALS = Caregivers of people with ALS
 
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