Knowing when to step down.

September 17, 2000

Hi all! I've enjoyed the conversation regarding our speech. Since

school started up again in late August my speech has really gone down

hill. It's interesting that we have so many different types of

speech. I had my first speech evaluation this last week and the

speech clinician said she had " never seen anybody like me before. "

She wanted to know if my flaccid speech was typical of PLS and I

pulled out a copy of the discussion and she about fell off her

chair! ha! BUT, what I'd like to throw out to you is this: What

were the driving forces / circumstances behind having to stop work

and going on disability. Was it speech, mobility, pressure from

bosses, etc.? I'm sure that in many cases it wasn't something any of

you were truly ready to do.

Thanks! Hope everyone has a great week! Sally

September 17, 2000

Thanks Sally, you have a great week too. I have not

stepped down nor quit work. But I have had to cut down

a little. However, I will be working full-time for about 8

weeks now due to a co-worker going on medical leave.

I will step down when I no longer can drive myself to work,

no longer am able to concentrate enough to do many

tasks simultaneously, can no longer speak or write

understandably (is that a word?)

God bless.

Laurel

**********

> Hi all! What

> were the driving forces / circumstances behind having to stop work

> and going on disability. Was it speech, mobility, pressure from

> bosses, etc.? I'm sure that in many cases it wasn't something any of

> you were truly ready to do.

> Thanks! Hope everyone has a great week! Sally

>

>*************

>

September 17, 2000

Yes, I am one who had to leave work before I wanted to. My intolerance to

heat was a big factor, as the hospital was typically hot--around 76-78

degrees. Also, my immediate supervisor was not willing to support my needs.

Quite honestly, she was a very insecure, rather unqualified person for her

job. She verbalized to me many times, that I should have been in her

position, as she recognized the fact that I was more experienced and

qualified. The fact that she had alcoholic tendencies, only added to the

situation. When I finally left, I filed a complaint against the hospital,

with the Americans with Disabilities Act office. I won--not that I wanted

my job back at that point, but they did make some financial settlements with

me.

Dolores

Knowing when to " step down. "

>

> Hi all! I've enjoyed the conversation regarding our speech. Since

> school started up again in late August my speech has really gone down

> hill. It's interesting that we have so many different types of

> speech. I had my first speech evaluation this last week and the

> speech clinician said she had " never seen anybody like me before. "

> She wanted to know if my flaccid speech was typical of PLS and I

> pulled out a copy of the discussion and she about fell off her

> chair! ha! BUT, what I'd like to throw out to you is this: What

> were the driving forces / circumstances behind having to stop work

> and going on disability. Was it speech, mobility, pressure from

> bosses, etc.? I'm sure that in many cases it wasn't something any of

> you were truly ready to do.

> Thanks! Hope everyone has a great week! Sally

>

September 17, 2000

> Hi all! I've enjoyed the conversation regarding our speech. Since

>school started up again in late August my speech has really gone down

>hill. It's interesting that we have so many different types of

>speech. I had my first speech evaluation this last week and the

>speech clinician said she had " never seen anybody like me before. "

>She wanted to know if my flaccid speech was typical of PLS and I

>pulled out a copy of the discussion and she about fell off her

>chair! ha! BUT, what I'd like to throw out to you is this: What

>were the driving forces / circumstances behind having to stop work

>and going on disability. Was it speech, mobility, pressure from

>bosses, etc.? I'm sure that in many cases it wasn't something any of

>you were truly ready to do.

>Thanks! Hope everyone has a great week! Sally

I was an electrical engineer for the University of Virginia. I used

to be a Laboratory Instrument Maker and did much the same things, but

they promoted me. Speech isn't the thing that got me, though. I used

to fix electrical stuff for the physiology department of the medical

school, and when it got to the point that I was more likely to fall

into an experiment than fix it, well, the end was rather apparent.

They would have kept me around for a bit, they were all doctors and

researchers and were very understanding. But it became rather obvious

that I could no longer perform like before, and no one was under the

illusion that I might get better. I can't really knock it, compared

to deals that others have gotten. As a retired employee of the

Commonwealth of Virginia, I have to admit that while the pay for

disability isn't all that great, you never have to worry about

layoffs. The speech went south a few years after I gained a new

excuse for my lack of gracefulness.

Galen Hekhuis, NpD, JFR, GWA ghekhuis@...

We are the Cro-Magnon of the future

September 17, 2000

For me it always has to be brutally obvious. I was doing foster care

for my county of delinquent teenage boys. The county tried to say I

was too handicapped to do foster care anymore, so I charged them with

discrimination under ADA. They relented so I dropped charges, then

they simply stopped making placements with me. I switched to a

privit

non profit agency that has been very understanding. i still don't

get

very many placements but at least I get some. I would go crazy if i

could not do something. I had unipolar depression once. i would

rather have PLS than depression. " The spirit can sustain our

imfirmities, but a wounded spirit who can bear? " I can feel the old

fears of depression comming back just thinking that someday I will no

longer be able to contribute to much of anything. Right now we have

only one child in placement. have been that way for nearly a year.

if not for the help of my family we would have lost our home. I hope

yet to convice the powers that be in our county that i can still do

my

job even without arms and legs. Eventually I know I will have to

give

it up, but I hope to have a few more productive years before before

that happens. I hope the county figgures it out before I am really

no

longer capable of doing it.

September 18, 2000

I closed my business (architectural design, co-owned with my son) because of #1) fatique #2)mobility #3)speech. It was my decision but I didnt' really want to do this. I found it difficult to make client meetings sometimes. I was just too exhausted. Other times, site visits left me exhausted. I had to climb around on hilly, rocky lots or construction sites. I was not comfortable walking around construction sites. My speech worsened by the end of a client meeting making it very tiring just to talk. My speech took a turn for the worse after I closed the business. I seriously doubt clients talking to me for the first time would hire me with the way my speech is now, although some days are better than others.,

September 18, 2000

Hi: I have had PLS for 20 years, and was in the insurance (property &

Casualty). My legs started to become stiff, and I had difficulty

bending, and also my typing and speech were starting to change. Living

in New Hampshire, when it would snow or ice up, I would " panic " , being

afraid to walk for fear of falling on ice. So I decided to stop,

applied for SS Disability, and bingo I got it. Now when the ice falls,

I just sit in the window and breath a sigh of relief. Retirement is

fun, and I feel better mentally not having the stress of trying to

function in the work force. Yes, you have to give up a lot of material

things, but my Pastor said " you can't back a U-Haul up to the grave with

you " , and he is right. So now I just LIVE!!

Rita

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

September 19, 2000

From: Sue

Hi Sally,

My reasons for retiring were: fatigue, mobility and stress. I found that

stress caused my symptoms to progress quickly. After retiring, all

progression slowed and I felt and still feel much better. Things are still

progressing but I think I would have been much worse long ago if I had not

retired. I retired in 9/98 by the way.

Also, I would like to add to everyone going to the CT gathering, that I

don't mind sharing my NIH report at the luncheon meeting on Saturday. I

think it would be rather interesting and informative to check out and talk

about the differences. We should, however, make sure we have plenty of

time for just plain old socializing and fun. Was that political enough???

LOL

Sue