before i started w/symptoms or actualy while in denial of symptoms i was a mechanic and retail managment, tried to keep working as long as i could, still work a few hours a week although only as a cashier,mgr is pretty understanding and i dont think many others would give me the opportunity he has. oh by the way its been 4 years since i first noticed leg fatigue and foot drop, just starting to get upper body symptoms but i am confident i will beat this!:-D
i am a research technician for the Agricultural Service. Still 5 years away from normal retirement but have been working sick for two years. My job depends on using my hands which I'm losing. My boss pledges to keep me on until I absolutely have to go.
I love my job and the people I work with are wonderful so I think working is actually keeping me on the bright side.
I am an independent consultant. I work from my home and also travel. I've had symptoms for just over a year now and was diagnosed last March.
Travelling is difficult, but I love it so much I will continue to do it as long as I am able. I use a walker and do tire easily. I just figure out my priority each morning and plan time for rest in the middle of each day. Even when I travel I plan a 1.5 hour rest in middle of day.
Some people say, "why continue to work when you know you're going to die?". I love my work so I want to continue !
That's like asking why travel when you know you are going to die. Or why spend so much time with your family, playing poker, reading, or sitting in the sun when you know you are going to die. Why assume that because some people don't like thier job, nobody does?
this is a very interesting thread, thanks everyone for sharing! I worked in the hospital for 15 years and in a fitness club on the side. Then I went back to school for my newest degree, mass communications with emphasis in journalism, and in the third year I became ill, but I did finish and graduate. I have chronic polymyositis so it is not expected to go away, but maybe get better. I am hoping the time will come when I can go out and use my new degree. I have been trying some freelance from home. I hope that works out!
I love my job - and I mean every aspect of it! It is a family business, so maybe that makes a difference and I'm the boss and my brother is the owner.. I pray to God I will be able to continue working as long as possible. But the onset of all this was only last August(2006) and I am already in an electric wheelchair and have a lost a lot of motor functions in my hands, but I will setup an office in my bedroom and work from there if I have to! I am their leader, their 'go to' person - from my crews out in the field, my project Manager and everyone in our office. My brother is the "Field Man" of 27 years(semi-retired) and he is a genius out there, but he doesn't even know how to turn on a computer! I am terrified of not being there due to ALS and how fast it has progressed - I just keep praying it will slow down... Oh - we run a foundation drilling corporation that does deep caisson foundations for cell towers, sub-stations, bridges and large tall buildings for the Southeastern US (FL, GA, AL, MS, TN, SC & NC). Our Dad started out 50 years ago and now it is just my brother and I. It is fascinating and I don't know how I will survive if and when I ever have to stop and put it in someone elses hands to run... It takes 3-4 hours to get up and get there some days(today), but it is what keeps me going - I have already hired some people to try and teach and relinquish some responsibilities to, but it's not easy I can tell you that! It is like trying to give away your own children! Well maybe that's a little stretching it, but still it is quite difficult after you have raised it and nurtured it and watched it grow.... Sorry about the rambling again.... until next time my precious friends..