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Did You Have to Change Careers, or Even Retire, After Being Diagnosed with ALS
If you were already retired by the time you had your first ALS symptoms, what type of career did you have before being diagnosed with ALS? If you were still at that job today, do you think you could do it with ALS, or have to quit?
Many working-age ALS patients need to continue working and do, but need workplace accommodations or have to change jobs altogether. Have you had to do this? How is it going for you?
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7 Replies
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Hi Dagmar,
I retired a month after my diagnosis. I was 60, I turn 62 this year. I was an IT professional for 40 years and I was losing dexterity in my hands my voice was changing. My wife and my ALS team all recommended that I retire and I was glad I did.
Daniel
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I was fortunate to be 70 and 6 months retired from USAID before my diagnosis. I’m a nutritionist and still doing some part-time consulting, but limited to text as my speech is pretty impaired. Of course, travel is no longer possible, but virtual meetings keep me engaged.
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Dagmar,
I initially took a leave of absence when I was diagnosed in 2020 with the thought of going back to work. I was a nurse case manager over the phone and I worked from home. While on leave, my husband and I made the decision that we would be financially OK if I took the option of Long Term Disability that my company offered. I was so fortunate to be able to do that! While my progression is slower than most, I would not have been able to keep up with the pace of the job for much longer anyway and my fatigue at the end of the day would have been terrible if I had to work all day. I was 50 the year I was diagnosed and just called it “early retirement” when I resigned!
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I was an optometrist when the disease took me out of practice at age 63. I really enjoyed my career. I chose optometry while in 10th grade and did not even have my first eye exam until my senior year. After trying to work for others for a year, I realized that I would be happy if I could have my own practice. However, we were with limited means. My wife encouraged me to just find a way and do it. My practice became very successful by treating patients as if they were part of the family. I will forever thank my wife for her loving guidance.
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I am a financial analyst and have continued working since my diagnosis on October of 2019 at age 60. However, after 3 years with ALS I am progressively weakening, especially hands, so this year I am considering retirement. I love my job but I think its time to change careers.
Susana
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I was teaching full time, choreographing and directing shows, dancing and singing professionally, acting, designing for the opera. ALS first affected my breath, so I had to retire from everything but designing for West Bay Opera. I danced in the studio for almost 5 years after diagnosis. My ALS has progressed to my limbs, so I had to retire from the Opera. My acting career was recently revived with a small part in a movie. “New Life”. Watch for it in the fall!
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I was an ESE teacher finished 2020 online
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