To work, or not to work? How having ALS influenced your decision

[Dagmar Munn]

For many ALS patients, the progression of their symptoms along with fatigue forces them to leave their employment. For others, who are too young to qualify for disability options having a sustainable income is a serious situation. What did you do? What tips or resources can you share that would help others who are facing this decision?

[Glen North]

Work is my passion, I’m lucky in that regard.  I’m President of PNP Pharmaceuticals and going into work everyday keeps my mind active and off of the challenges that are in front of me.  Without work, I fear I would have too much time to think about my disease.  For me anyway, work is a time where I feel needed and not ill, it’s a time out from ALS, albeit only for 8hrs a day.

[Kim Belden]

I was a college professor for 25 years. I took my pension in a lump sum and “retired.” I’m busier now than when I was working. I moved, got a housemate, and found lots of new friends in my new condo. I had the remodel done before I needed it and that gives me a bit of comfort.

I’ve written textbooks but now I devote more time to recreational activities. I don’t need to travel. Did all that when I was young. I’m getting involved in my new church and cultivating relationships.

I have no family so my friends are important to me.

[Angie]

I still work.  I went from 8 hours a day to 4 hours a day.  I like the routine, and find 4 hours a day is the perfect balance, at this point.

 

working keeps me busy and social, my coworkers are amazing!!  I am fortunate that my employer will allow this.

 

Also, just getting to and from the building I work in is my daily workout ?? ??‍♀️

 

[Cecilia Crow]

I am grateful my employer lets me work from home 4 hrs a day. It’s perfect. It gets me out of bed every morning and keeps my mind busy and challenged.

 

[Ray Chandler]

My doctor more or less made this decision for me.  He sent my employer a letter stating that I should not be working and they sent me on my way the next day.  I started drawing STD, then LTD.  Not knowing a progression rate or what the future held I didn’t fight this.  I feel like I could still be working although some accommodations would have to have been made.  I cannot return to work now due to SS and LTD benefits.  And I am also becoming weaker so I guess I would have to quit now for sure.

Ray

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