Status
Not open for further replies.

westjlittle

Active member
Joined
Dec 12, 2006
Messages
52
Reason
PALS
Diagnosis
October 2006
Country
US
State
CO
City
Denver
I am wondering how many people are still working with fairly advanced ALS. My example would be Stephen Hawking. He is basically completely disabled yet he holds a job and has aides to assist him.

It seems like there are jobs that could be performed with fairly advanced ALS. I write software. I am wondering how long I can reasonably expect to work. All I need to do is move the mouse, type. Over the past week, maybe 10% of my time required things I won't be able to do in the long term. Worst case you're using an eye monitor to move the mouse.

So, the questions are
- How reasonable is that?
- Is anyone doing it now?
- Has anyone tried it and failed?

Any comments?

Jim West
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Jim-Quadbliss uses an adaptive mouse-I'm not sure if it is an eye monitor or another form. But he paints and sells artwork that takes many hours to complete. I'm sure he'll check in soon. And there are others here who work - I remember one man who said he used his scooter mainly at work and kept his chair at home because it worked out better for him that way.

So you have started a great thread. A lot of folks urge the newly DX'd to quit work and go do some traveling or take up a hobby they've wanted to do for years but there is something to be said, I think, for having a responsibility to attend to and some contact with the outside world. JMO. Cindy
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
I think I could do many of the tasks actually required for my job (management at public mental health agency) for quite some time with adaptive aids and reasonable accommodation but have questions about maneuvering to and through the workplace. How to get to work, what about when I have to go to the bathroom at work, what if drooling becomes a problem, etc.? I definitely have to be able to continue effective face-to-face communication to keep working in my job.

I wonder who pays for Mr. Hawking's aides.

Looking forward to responses to Jim's query.

Liz

PS - my latest accommodation (today) was giant push pins for my bulletin boards to replace those tiny things I just can't grip anymore. Totally dorky. My office is starting to look like a kindergarten classroom.
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
I worked 6 years with ALS two 12 hour days and one half day and babysat for two days. I think if its not stressful and its not a chore for you to work and you rather work then its better to work then stay home it keeps your mind and soul alert. I quit because my speech was slurred and people thought I was drunk and I was tired of defending myself. So continue if you want God Bless Pat
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Pat - I specialize in working with people who are mentally ill and alcohol/drug addicted so me stumbling around and slurring my words at work may become a hard sell. I've already begun educating my clients about my condition to try to preempt some of the inevitable questions. I'll just have to see how it goes. - Liz
 

KateO

Active member
Joined
Jul 11, 2007
Messages
53
Reason
PALS
Country
US
State
Montana
City
Helena
Although I'm not advanced I have no intention of quitting work until I absolutely have to do so. I have the same question about Stephen Hawking: who pays for his aides. Actually, I assume he has the funds to pay the assistants to allow him to continue to work. Hiring aides to help me continue working will not be an option for me.

I am keeping my plans to be one of the facilitators at a national conference with 2,000 attendees in two weeks. I will be working from a wheelchair. I am really excited. Emotionally, I don't know if I could have done this even two months ago. It will be the first time most (99.9%) of those people will see me in my "new condition". I know it will be difficult to keep explaining myself. However, I am so grateful to be able to participate I'm hoping that will help get me through it.

When folks say I should quit and go do all the things I'd love to do, it's kind of difficult. A big part of me would love to do exactly that. Unfortunately, financially that's just not an option for me.

Good luck!
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Good luck with your presentation, Kate. I read somewhere that ALs patients tend to be highly motivated and I guess this group proves it. (Although I would like to be a fly on the wall when Liz comes stumbling in, slurring her words and trying to convince her peers that she is perfectly sober!:-D )
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Jim
I think it would have to depend on how ALS is progressing and what "parts" are affected.

My husband was in sales and people began to complain to management that he was drunk! Also he had to use a stylus with a palm pilot and couldn't manage to do it anymore. In retrospect, I believe he could have fought for alternative equipment to use and used the card the clinic gave us to explain his slurred words for a while anyway. But, I think his employer really wanted to be rid of him, thinking he was a liability in people's homes.

So if you can still work and want to - go for it! I think it helps mentally to do what you really want to. My husband misses his job tremendously.
 

westjlittle

Active member
Joined
Dec 12, 2006
Messages
52
Reason
PALS
Diagnosis
October 2006
Country
US
State
CO
City
Denver
I have also been encouraged to quit and travel the world. Seems like a way to spend resources you will need later. I have been thinking about taking a FMLA absence to travel then return to work. How many people have done that?

As an engineer, I make good money have good health insurance. I would rather be working with good insurance than sitting at home watching cable on govt. assistance.

jim
 

quadbliss

Distinguished member
Joined
Dec 12, 2006
Messages
392
Reason
PALS
Diagnosis
07/1998
Country
US
State
California
City
Benicia
Hi Jim,

It sounds like you have the perfect job to continue working for an extended period of time. There is one thing however, that can't be overstated. Stress contributes to progression rate in a big way. When I finally decided to quit my stressful job, my progression rate slowed to 10 or 20 percent within a few months. But, if you enjoy your work, and you feel no stress, I say go for it.

I would start setting things up to work from home. As the disease progresses things like transportation, using the bathroom, and wheelchair accessibility, will become issues. If you are already set up at home... no problem.

Although I use a head pointer and a cheek switch to type, paint, and operate AutoCAD, I am definitely slower than I used to be. Check out the Home Automation Page on my website for an idea of how technology can keep pace with your disability.

Finally I would like to point out that although I retired over 7 years ago, and am completely paralyzed from the neck down, I have little time for TV. :-D

Mike
 

Omar

Distinguished member
Joined
Apr 13, 2007
Messages
138
Reason
PALS
Diagnosis
08/2006
Country
BE
State
Belgium
City
Brussels
Hey Jim, Hello to all,

I do agree with Mike that you have a job to continue working for a longer period of time.
I am also a Graphic designer and mostly I use the mouse and the keyboard while designing and so far I am still doing ok even though I am not able to write anymore.
Just like Jimercat said, go for it if you feel like doing it. I am even still hoping to find a job cause I like my profession and I still can do it, so we have more or less the same case but what I am afraid of is whether I will be accepted in a company because of my ALS and if so
how It will be in the later stages when I wont be able enough to reach my job, to communicate with my colleagues and to hold a client meeting, even though I will be still able to do my work. I was also thinking about the possibility of working from home.


Omar
 

paula B

Active member
Joined
Jul 23, 2006
Messages
87
Reason
PALS
Country
US
State
wisconsin
City
seymour
your body will tell u when your done working. I had to stop right away,,i drove truck over the road.

PaulaB
 

guwainengle

Distinguished member
Joined
Jul 9, 2007
Messages
112
Country
US
State
PA
City
Duncansville
Paula-- What was your biggest struggles while driving? I am in sales and drive alot over the road. Althought not diagnosised- I am having some struggles.

G
 

ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
City
McEwensville
I am in the early stages and continuing to work. As of right now I'm the sole source of income so I don't see me quitting any time soon. I'm trying to lay the foundation for a new job that will allow to continue work from home when I can no longer do sales. Unlike quadbliss I have the artistic ability of a two by four so I'll have to find another way to keep my mind occupied. I'm thinking I can work on all that process improvement stuff my employer has been talking about since I started 7 years ago :)
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
ZenArcher said:
I am in the early stages and continuing to work. As of right now I'm the sole source of income so I don't see me quitting any time soon. I'm trying to lay the foundation for a new job that will allow to continue work from home when I can no longer do sales. Unlike quadbliss I have the artistic ability of a two by four so I'll have to find another way to keep my mind occupied. I'm thinking I can work on all that process improvement stuff my employer has been talking about since I started 7 years ago :)

May God bless you, Jeff! Good luck to you!

Irma
 
Status
Not open for further replies.
Top