This is my first time posting. My name is Brita I am 29 and was diagnosed with ALS in Nov 2015. It’s been hard to come to terms with but thankfully everyone around me is very supportive. The biggest issue I am struggling with lately is if I should/how much longer should I continue working.
When I was diagnosed I was living and working in NYC. I did tell my managers and they were supportive of my decision to move to my parents in Miami and I moved to South Florida in Feb. I am fortunate to have a job that involves desk work, lots of emails, phone calls etc. I work for a retail company, so instead of working in a large office, they’ve allowed me to work from a store. This has been fine until recently, I am finding the act of getting to work is absolutely exhausting. Fighting traffic, taking my computer bag in, the quarter mile walk from the handicapped spot I park in to the store. All the small things that used to just be annoying are now exhausting! My HR person is very helpful and informative and I am thinking my next step is to apply for FMLA intermittent leave. I don’t want to quit just yet, I love my job and my company so I want to work as long as possible. Plus I have a lot of student loan debt, private and public, and it’s a heavy burden to think about.
So my real question is at what point did you decide to stop working? What sort of “reasonable accommodations” did you go through before coming to that decision? How did you handle the prospect of paying back debt if you did quit?