Going back to work

[debasismishra]

I am on short-term disability leave until the end of October and am exploring the possibility of going back to work in November. For some context, I am a Director of Software Engineering leading a large engineering team to develop a mobile application for a large bank. This job requires frequent email and verbal communication, which of course means lots of typing, clicking, and speaking. After my ALS diagnosis in July, my right-hand fingers are weak, making it difficult to type and use a mouse. My voice is also affected, making it difficult to verbally communicate. I’m sincerely asking forum members to advise if there are any viable options to make it easier for me to effectively manage my work. I really love what I do and would like to work for as long as I possibly can.

 

[lgelb]

This page may help. You might try a hybrid setup for now, where you have access to a trackpad (adjust the settings for low force taps/scrolling) but also use a head mouse and begin looking into eye gaze.

Mac and iOS devices have built-in head/eye gaze capabilities to try.

 

[DW7186]

I still work full time (I have flail arm syndrome though not ALS). I work from home.

I never had use of my left arm but as my right arm and hand have weakened, my employers have provided me with any tech so far I need and a commitment to any further requirements.

I'm in the UK so may be different in other places,but we have a disability act that states reasonable adjustments must be made,wherever possible.

Apologies for the lack of practical tips but more of a note to say it is possible with an understanding employer and technology!

All the best,Denise

 

[Nikki J]

I wonder if you can somehow use ai to your advantage? Help with composition or formatting?

 

[santimo]

I'm in a somewhat similar position to yours, just came back after a couple months off. On top of other people reccommendations, you might be able to discuss with your managers a task adjustment, where you can work for some less hours and perhaps focus more on mentoring and oversight so your impact can be meaningful even if you work less time each day and have less urgent responsibilities. At least that is what I did in order to make my return sustainable.

 

[swalker]

I don't envy you having to make this decision!

I was in the software development business for over 30 years. Leading up to diagnosis, I had to step back from some of the responsibilities that I had. Once diagnosed, I continued working for about 3 months, but then realized I just could not do that work at an acceptable level and my attempts to keep working were causing faster progression.

I finally made the decision to stop working and in hindsight that was the best decision I could have made. Removing the workload seemed to allow my progression to slow down. It also freed up time for me to pursue all the paperwork, phone calls, and doctors' appointments that were so necessary and burdensome during first year of the disease.

It also freed up precious time to spend with my wife while I still had the ability to travel and have a few adventures.

Financial considerations are important too. You have been out on short term disability. For me, that was necessary before long term disability kicked in. If you go back to work, will it affect your disability benefits (especially how much work you need to miss to qualify for long term disability)?

Also, note that you will not be able to qualify for Social Security Disability Insurance (SSDI) payments if you are still working.

I was good at what I did and enjoyed it very, very much. I worked with some amazing people solving hard and really important problems. It was emotionally very difficult to stop working. It was also pretty sobering to realize just how much income I would have to walk away from.

In hindsight, I can say that I worked too long and doing so adversely impacted my health.

Good luck making your decision. Please let me know if I can help in any way.

Steve

 

[KimT]

It's hard to make a decision. In retrospect, I probably could have easily worked five more years. My diagnosis scared me and I was alone so I took my pension in a lump sum (I was a college professor.). I loved my work but I did have to supervise a department, write grants, and train other teachers to teach online. I worked about 90% from home. I regret my decision but only because I progress so slowly.

Now I'm involved with our condo board and do some pro bono work tax returns for low-income people and a few friends.

Sometimes I toy with the idea of maybe teaching a remote course as an adjunct but I get tired easily and I have other interests.