I do realise that late-onset is a different beast and that most people who develop Friedreich’s Ataxia (FA) at a young age have more severe symptoms, and some may not be able to work a regular office job.
I am very fortunate to be still working in an office full-time. I work as a marketing manager/admin for an environmental consultancy.
I have found that, since diagnosis, being more open about my limitations with colleagues and friends has taken the pressure off, and we can have a bit of a laugh about things! For example, there are stairs in work and I joke with colleagues, if they are descending the stairs behind me, to go on ahead as it will take me half an hour! (slight exaggeration). And I am more comfortable asking for help now.
I definitely avoid things that I used to be very comfortable doing. I used to attend quite a few networking events, etc, and now I really only choose ones that we cannot afford to miss. My fear is having to walk, with difficulty, in front of lots of others, especially in an unfamiliar venue (negotiating uneven ground, stairs etc). Luckily, I have an understanding boss, and I can say if I am really not comfortable, and someone else might be able to attend in my place. This is very frustrating for me, though, as I feel it is my job, and that I should be doing it!
I know this may change as the disease progresses, as there are already some limitations, but I am very happy to be able to work with the support of a great boss and colleagues!
