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Suzannah

Distinguished member
Joined
Mar 19, 2014
Messages
132
Reason
DX MND
Diagnosis
08/2014
Country
Uni
State
TEXAS
City
Deep in the Heart of
Hi,

I was wondering about people's ability/inability to work with PLS. If you are of working age, are you still working? If you're past working age, could you still be working? If you can't work, how long were you able to work past a diagnosis or onset of symptoms? What symptoms ultimately caused you to stop? Was it specific to your particular job, or would you not be able to do any type of job?

Thanks for you help.
Sincerely,
--Suzannah
 
I was still working until 6/2012. My mid-afternoon fatigue and my awful balance both conspired to make me quit. I was a fund-raiser (primarily proposal writer for grants) for a local human services agency. It was a part-time job that I started in 2007 when my husband and I moved to Poughkeepsie.

I began experiencing serious symptoms of PLS in 1993. I kept working full time until 2003.

I was very sorry to leave my job but wasn't doing anyone much good in the shape I was in.
 
My PAL worked full time until his hand coordination and speech made him unable to, which was sadly quite early on. He did customer service unfortunately so it was a little hard when ppl couldn't understand him and he couldn't make change: (
 
I retired 2/2005 before my PLS symptoms became problematic. I was dragging my right foot a bit, had back spasms, and some other symptoms that I attributed to old age and a bad back. In 2006, I started a part-time bookkeeping job which I still do, working from home. I was diagnosed 8/2011. There is no way I could commute to a full-time job or sit at a desk all day. My voice is almost gone, so I email or mail reports, etc. I work only 8 to 10 hrs. a month.
 
I mainly was responsible for developing a software product that I invented. I did everything including training, customer meetings, documentation and development. I traveled quite a bit. I have Bulbar PLS so my speech gave out first. I had to get others to do tasks that required speech and continued with development. My walking was affected 4 years later and I finally decided to take long term disability and SSDI in year 6. I could have worked another year or so I didn't think it was worth the stress. I also had a side business developing specialized automation software to help a small company. I still help out with that a little. I setup Logmein so I do everything from home. I was in the process of expanding that when I became ill and decided against it. I started learning how to do Android apps and web sites but I haven't figured out any app I want to do and they all eventually require speech.
 
I'm fortunate to be able to work from home (I teach). If my home-based work arrangement goes away for any reason and I cannot find another position like it, I'm in huge trouble, because I am enormously challenged just to work from home.

Meds make me tired, as do pain and discomfort -- simply stated, I do not have the stamina to make it through a full work day at an office, in a physical classroom, etc., and so working from home allows me the flexibility I need to wrork around these "issues")....I work in the middle of the night when I cannot sleep, and so I put it my hours....but I'm able to lay off during the day if needed (try THAT with most jobs, will ya?!?!).

Such is life with PLS.
 
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>Such is life with PLS.

and ALS :-(
 
I haven't worked for about 3 years or so......I retired early. Probably could not hold a full time job right now...it would have to be something that did not require speech, and I could sit down really often!

Some days I thinks it is WORK just to get sh!t, showerd and shaved before noon!
 
>I haven't worked for about 3 years or so......

I am still working, but mostly at home. I am no longer doing UEFI development or architecture, as you really have to talk fast to keep up with our engineers so now it is mostly next gen auto testing of OS's. I am also doing so really kewl patent work which I can tell you about when I get them published (if I last that long :)).

Disability is looming, though. :-(

I really miss regaling all out the youngsters ...
 
I haven't worked for about 3 years or so......I retired early. Probably could not hold a full time job right now...it would have to be something that did not require speech, and I could sit down really often!

Some days I thinks it is WORK just to get sh!t, showerd and shaved before noon!

whats shaved. i haen't used a razor since spring of 87
 
.whats shaved. i haen't used a razor since spring of 87

I struggled and was able to get the dog shears to do most of it. Was sad when Sandy laughed :)
 
whats shaved. i haen't used a razor since spring of 87

I have to use a weed wacker on my butt...cause the hair is so thick!:oops::shock:
 
>I have to use a weed wacker on my butt...cause the hair is so thick!

wouldn't touch that one or allow a scary mental image :)
 
Still working, but it is getting harder. Had to leave early yesterday, just very tried and stiff. Don’t know how much longer hoping for around 2 years, still haven’t come to terms yet to what not working will mean, am I ready to give that up that part of my life. Don’t think I’m ready to give that to PLS yet, It is like driving. I find myself more and more letting Marshell drive when we go out, but it you told me I couldn’t drive we would have a fight on our hands. Maybe one day I’ll just wake up and say it is time and go in and give my notice. Can it be that easy?

Mike

Mark, Agree with Max on the weed wacher
 
Mike, it was an adjustment not working. I missed the interaction. I had Long Term Disability (LTD) insurance so I did not suffer much financially from going out on disability. Although it pays at a reduced rate I found the income is for the most part not taxable since I paid for most of it myself. Although I could work from home a lot it did require me to drive to work a few days a week. I found my reaction time getting longer and I tried to adjust but I could see I was taking a risk. We have Paratransit transportation and I could use it. It seemed like a lot of hassle. I did not regret it.
 
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