Hi, my name is Tom, I'm 38 years old, and I was diagnosed with FA in 1997. I live independently in my own house, which is very important to me. I strive to do whatever I can to maintain some level of independence for as long as possible. Living alone at times can be very difficult. I find myself getting frustrated more easily because I routinely find different things that I either cannot do, or have more and more difficulty doing. It's almost as if I am continuously mourning the loss of different abilities. My constant struggle to maintain my independence can also be very difficult to friends and family members. I am very resistant to ask for, or accept, help. A lot of people around me get upset with me because they want to help, rather than watching me struggle with an otherwise easy task.
Staying active, to me, is a very important part of being able to stay independent. Staying active, doesn't necessarily have to involve exercise, but I think that is a huge part of it. I subscribe to the "If you don't use it you will lose it" rule, meaning if you have muscles that you don't use on a regular basis, they will gradually deteriorate, and eventually you won't have them to use. I work out at the gym four days a week, doing whatever I can. I also participate in physical therapy twice a week where I exercise my core muscles and walk, albeit for short distances. I also travel a lot, and participate in many social activities.Add a comment