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    • #14249
      Dagmar Munn
      Keymaster

       

      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.

      Are you still working? Do you commute to work, or work from your home? What are your challenges?

      Do you have tips or resources can you share that would help others who are facing this decision?

    • #14272
      Cate
      Participant

      I still work, and I’m interested in hearing from other pALS on this topic. I commute 150 miles round trip three days a week, work from home two days. I’m a writer/editor, I can walk with a cane, have full use of my right hand, and my speech is pretty clear (diagnosed 8/19 but have had symptoms 2.5 years). I’m lucky! Will be getting voice to text software soon and work is fully supportive. Eventually, I will work full-time from home.

      My challenges: knowing how long it is safe to drive (going into the office is good for my mental health); getting easily distracted by my ALS symptoms (including getting tired, weakness of left hand, general worry); determining when I will need to go on disability; what and when to tell co-workers (management and HR know, but peers do not).

      Would love to hear experiences of those ‘farther along” than I and happy to answer questions from others.

    • #14376
      richard fredericks
      Participant

      I am still working. My commute is easy, from bedroom to an office alcove. Fortunately, my work as a leadership coach can take place on teleconference as effectively as in person. And with voice-recognition software I can provide follow-up notations. I will be challenged as my voice starts to give way. I will take wise counsel from this group on practices to preserve elocution.

      I am also challenged by  fatigue and try to sneak a nap each afternoon. Work is highly engaging and keeps me connected to very bright people in the world beyond my condo’s wall.

    • #14464
      Susana Rave
      Participant

      Hello,

      I am still working full time as an analyst and I am fortunate I have a 6 mile (round trip) to work.  I am still driving short distances but getting nervous about driving long distances. Getting ready in the morning is becoming increasingly difficult so I am contemplating on requesting a modified work schedule to start work an hour later.  I have not discussed my illness with my boss or HR just yet. I want to continue working because my work occupies my brain and i forget the illness.  I take a nap at lunch and that helps regain my energy for the rest of the day.

      Susana

    • #14468
      Owen
      Participant

      My wife has been working for the past year, but is just about to go on short-term disability, and then that might be it after that. She gets tired more easily and driving (which she does a lot of) is becoming more of a challenge, but most of the issues have been around using a computer, as she’s lost most of the use of one hand, and part of the other.

      I would say the biggest challenge has been around reasonable accommodations under ADA. Despite submitting the request and doctor letter in October 2019, her work has been dragging their feet/fighting her on basic accommodations like speech-to-text software and flexible work hours/additional telecommuting. It’s been a pretty disappointing process, and my wife is going on STD out of frustration as much as anything. My recommendation to others would be to start the process as early as you possibly can, and shoot to secure accommodations such as: Nuance Dragon Professional (speech recognition software‎), a flexible work schedule and/or additional work from home days for when you’re tired or have medical appointments, handicapped parking (if you have the tag) and possibly a device like an iPad if you move around a lot for work. And if you’re not already signed up for short-term and long-term disability insurance, do so as soon as possible at your work’s next open enrollment event.

    • #14497

      Yes, I commute 20 miles each way 4 days a week. I have weakness in my right hand, ankle weakness, and flip foot. I’m still able to work but the stress worries me. I am not sure  when I should stop working.

    • #14712
      Cyndi Zach
      Participant

      I have had ALS for 1+ years; have 95% disability in my non-dominant arm, and am now experiencing weakness in other arm and one leg.  I can still walk and no vocal, breathing loss yet.  I work full time and have a 100+ mile commute round trip; also work 12 hr days w/commute, 4 days/week.  I plan to retire next month due to concerns regarding driving.  I can still function in my job and enjoy it very much (a great diversion from ALS).  Working from home is not an option d/t poor internet connection.  Too bad!  I fear I will  struggle with depression without something active to occupy my time.  My advice:  if you enjoy your work – stay with it as long as possible.

    • #14713
      Cate
      Participant

      I agree, Cyndi! I am in a similar situation, but fortunately can work from home. I do enjoy going into the office, though, as it helps my mental health (I work from home 2 days a week). When I have to go to full time at home, I will need my fam and friends to get me out of the house so I don’t get depressed.

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