When to go on disability?

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Moderator emeritus
Jun 20, 2005

I am still working full time in an office.

My co-workers are aware of my condition.

I can still meet the performance requirements of my job - but it is slowly getting tougher.

Typing out anything but a short e-mail is a chore. My speech is still reasonably good - but there is some slur and I get tired talking on the phone for extended periods of time. And I am becoming pre-occupied and distracted.

My job can be very stessful at times - and I do need to work long hours occassionally - but I'm trying to cut back on that.

I should be OK for at least another year - it gets hazy beyond that...

I'm only 39 - and I'm partly afraid that if I go on disability - I will become consumed with thoughts of ALS - whereas now my thoughts are often taken up by work - but I don't think that stress is a good thing.

For those of you who were not retired when you were afflicted with ALS - when did you make the decision to go on disability? Did you work until you could not longer perform your job at all - or did you call it quits before that?
Hi, I am new to the forum, I was diagnosed in June of this year. I carry mail for a living
and I am planning to retire this Friday. I have already applied for disability from my job
and from Social Security. My job is stressful and physical. I looked at it like this while I
have the energy to go and do things, I want to spend time with my family and take care of my grand daughter some. I thought it was unfair of me to spend what quality of life I had left at my job then quit and say now I need my family to take care of me. I have 4 children a son 26, twin girls 25 and a 17 year old at home. I am 45 and I am having a hard time leaving my job especially for this reason. My job gets harder for me to do everyday. I have lots of friends on my route that I will truly miss, but I feel like I
am doing what is best for me. As far as thinking about the ALS since I have been diagnosed I have cried just about everyday, even at work. I believe I am accepting it
but sometimes it is just more than I can handle. So I just cry and have a pity party
and I believe it will get better when I am not working anymore. I wish I could give you the right answer talk to your family and pray about it and I am sure you will make the right decision for you.
Love and Prayers, Rhonda
Hi, my advise would be to go on disability as soon as you can.
(I was diagnosed Aug 05)
You need to save your energy for the things you want to do and spending time with loved ones - don't waste it on work. If you have the provision to end working - do it!

I am still working every day and cannot get out of it for awhile yet. (No provision for disability or retirement) The stress is a real killer for me - I find Stress is my biggest enemy. So my advise is to eliminate as much stress as you can as quick as you can.

There are really good charities you can give your time to so you can keep busy and your mind off ALS.

My thoughts are with you - this is a hard decision - it feels like we are giving up and going home to die. But that is not the case! We go home, reduce stress so we can live longer. It is all about quality of life now.

Good luck on your decision. Let us know what you decide.
When my husband was diagnoseded at age 40 in 8/2004, he went back to work for about 2 days---to clean out his desk and get things inorder for the next person! Then he took sick leave until his retierment took effect. He worked for the federal government at a National Wildlife Refuge...so he was able to get a federal disability retirement and SS. Even though he liked his job okay he just had so much he wanted to do while he still could....he worked on our house, hunted that first fall, traveled, bought a sailboat and sailed it to Mexico for 2 months, and yes, he also laid on the couch a lot and cried and was sad about dying......but he was processing this tragedy and it was important time.
At the time I was shocked that he quit working so soon (he only had one arm with weakness, thought he had carpal tunnel when he went to the doc!)....now I am so thankful that he took the timeto follow his dreams.
Everyone is different, but that's how it went for him....
Good Luck with your decision..Beth

I also would retire if I had the option. I am self-employed and have no safety net whatsoever.

You only get one shot a life, whether you have als or not. You may survive quite a bit longer not working. It may require other tough choices along the way but in my opinion - I would go for it.

Good luck and good health to you however you choose!

I would go for the retirement, I will be doing that today or tomorrow, handing in my sickness and accident papers.........and my disibility papers........and my retirement request, which I am going to fast track thru my union.............Its one of the toughest decisions that I have had to make. BUT it is the right decision in my case.......but family comes first..........thats all that matters........I hope and pray u make the right decision for yourself and your family.......We are a family here and we have to fight everyday, and make tough decisions....
I was taken off work right away by my doctor,,,now i see why. I drive truck otr,,i thought i could still do it now i know i cant. I didnt know als went so fast.
I think the decision should be based on several things. Are you a fast or slow progressor? How much do you enjoy your work? What are your alternatives to work? Do you need the money?

In my case I am still working nearly 6 years after my diagnosis and don't plan to quit until I have to. I really enjoy my job (science research) and I can still do it adequately. The social aspect of it is also important to me. My employer makes some allowances for my impaired mobility and that has also influenced my decision to stay on.
I retired in June of 03 and was diagnosed in Oct 03. I was glad I retired because I was able to take the time to do some of the things that I had been putting off. I had a decent pension so could afford to retire. That enters the equation. Can you afford to maintain some semblance of your former lifestyle. If your job isn't too stressful and you enjoy it I'd say it probably won't kill you but it does cut into family and fun time. Good luck with your decision. AL.
Thanks everyone for your input.

Greatly appreciated.

I do have some disability coverage - enough to get by.

I'm not missing out on too much family life at home - my wife is in school - so she is gone most of the day - there's just the 3 beagles sleeping all day...

I work with my dad - and it would kill him if I went on disability - so that's a factor too...

I'll probably stick it out for a year still - but cut back on my time...
Tough question.Ive thought about it ...but decided to keep working for as long as I can.Ive worked retail for the same co.for 21 yrs and I really enjoy what I do.Yes it is stressful but when you enjoy it , it lightens the stress factor.My employer is very supportive and tells me that he will accomadate my needs...so what more could you ask? Besides ,I would probably turn into the largest couch potato around.
How about tomorrow?

Well, as most say it is a difficult decision. I personally have made the decision that I have worked as long as I can. I am going on disability as of Monday. I too enjoyed my job and the company has been extremely supportive. The problem is that I have always been a productive worker and it has gotten to the point that I can no longer be productive. I was told that I could come in and do nothing but as a worker I cannot. Now I have to sit and watch my coworkers slave along. This is frustration, I want to help but can't. I told my boss make me a manager and I might be able to do nothing and collect a check, but as a worker I can not. The decision became easier when I learned that my health coverage would be better with medicare. But like this disease it is individual and each has to decide what is best for themselves. I just know what a burden it is on my wife to get me up and out to work every morning. I am hoping that this will make her life a little easier.

Rich ò¿ó

I am new to this arena. My husband was diagnosed 10 months ago. The doctors have deemed his a "mild progression", but he is completely unable to walk, has minimal use of his left arm and hand, and is in the beginning stages of saliva build up and slurring his speech. We have four children, ages 10-19, and he decided, within two months of his diagnosis, to go out on disability. We have since traveled as much as we are able, with everyone's schedules and spent a lot of quality time together.

Our doctor described ALS energy, as a battery life. She told us that in most situations, you work harder to build muscle, but in situations where the muscle is dying, it is wisest to conserve as much energy as possible...because you have a battery life, and when that runs out, there's no replacement. She urged him to expend energy on things that matter to him, not the mundane every day tasks. I couldn't agree more....Blessings, Teej
I was diagnosed 4/05. My neurologist told me to quit working, and "go spend time with your loved ones". One month later, I resigned. I felt like my world had been ripped in half. At 45 years old, I was not ready to give up my career as a nurse. In fact, I was half way through grad school, working toward my Master's in Nursing. But my legs were giving out on me, and I couldn't do my duties, so I said buh-bye. I spent the summer with my family :)-D ), and filed for disability. Nearly lost my religion completing form after form for Social Security, and talking on the phone with my case worker! Geez...certain conditions/diseases should eliminate the litany of redundant questions, but that's another battle. It took from May until November to get my SS disability payment, so don't delay starting the process.

While I miss being at work, I still keep in contact with the hospital. I sorta function as a consultant, so I am still helping others. Due to the fact that I am an anal-retentive, type A personality, watching TV all day just doesn't work for me (although I do love Judge Judy!).

Yep, ALS will end my life early, but I'm not dead yet. So I will take on each day, and do what I can as a mom, nurse, wife, sister, pet-owner,etc. Try to capitalize on what you CAN do. Cry when you need to, but don't dwell on the poop. Smile, laugh, and love every day, especially the love part.:wink:

29 year old husband with ALS

My husband was diagnosed on March 9 2006 with ALS. His progression is very slow. He walks without assistance and is mostly affected on the left side of his body so far. (Basically his left pointer finger and some in his left leg) Sean worked as a manager is a financial services firm in Chicago until he was diagnosed in March. He has been on leave of absence since then. We made the decision to move back to Kansas to be closer to family. Sean would like to still work for the same company, but in a different capacity. Previously, he was in sales and worked a lot of hours. Now, he has inquired into being able to work from his home in another role. This is a fortune 300 company and Sean was well on his way to being a successful executive within the company. Sean still feels that he can be of value to the company, but in a different capacity. What rights does my husband have? Can the company just cut him lose because of his new disability or should they have to accomodate Sean? If anyone has any advice on who to ask or where to find resources on this topic I would be greatly appreciative!


Jenni Younger
Chanute, KS
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