Jean Walsh: What Friedreich's ataxia feels like
Massachusetts-based Jean Walsh was diagnosed with Friedreich’s ataxia 40 years ago at 19 years old. She describes the development of her physical symptoms throughout the course of her disease’s progression.
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Physically feels, I think the first feeling — although I’m not sure this was physical or not — but you lose your ability to do stuff. So for example, I used to be a horseback rider, like way back in the day when I was a kid. I started becoming symptomatic when I was probably 14 to 16, something like that, and it felt back then like I used to be able to do stuff like, for example, ride — and this is true for any sport — but in riding you know what you’re doing and you’re not like looking at yourself doing it. But because I was losing my ability to do stuff I kept looking down at my hands and my feet to make sure I was doing what I was supposed to be doing. So, it really felt like a loss of balance and coordination at the beginning.
It still feels like that. You know, things have gotten worse, obviously. The progression of the disease is awful. And it just keeps getting worse and worse and worse.
For me, at this point in my disease, which has probably been the last five to 10 years, I can’t quite remember when it started, but my hearing is not going, but background noise is really hard to [hear in]. So, going to a restaurant and that kind of stuff is really tough. These days, I lose my balance and coordination. It’s so bad I use a wheelchair. I progressed when I was in my 30s to a walker, then in my 40s to a wheelchair. So, that’s kind of how it has felt.
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