Sandy Holleman has a daughter, Mary Beth, who has been diagnosed with SCA 15. Sandy shares her experience of what it is like to have ataxia run in the family.
Mary Beth is my daughter and she was diagnosed with SCA15. I can’t remember the specific age my daughter Mary Beth was diagnosed, but I would say she was probably 31. Back then, she struggled and just continued to teach. Her balance became worse over time. With her getting married and living in the city, I didn’t know that much about it. I didn’t know what was going on so much until she moved back.
The news of the diagnosis wasn’t a big shock in a certain way. I had a brother who died of it in 2006, and my mother in the year 2000. I feel really bad and guilty because supposedly it comes from my side of the family. I had a hard time dealing with that. But I really admire Mary Beth for all the networking that she is doing, and how she is taking care of her body. But also just getting out and doing things. She seems to be a living part of the community.
We haven’t necessarily become closer. We both live in the same town but she doesn’t drive and so we don’t see each other very often. We talked a lot on the phone and she started a support group two or three years ago. Before covid of course and I’ve played an active part in that. So I’ve kept up with what’s going on.
I would say that ataxia is a chronic degeneration of the spinal column and then Mary Beth corrects me and tells me I’m more elaborate or more concise definition. My mother and my brother had in the late 90s, and my brother spent the last couple of years in a nursing home 24/7. My mother just didn’t get along very well. So it was just kind of all confusing to me, but that also had to do with the fact that they didn’t know very much back then. With Mary Beth moving to the city where the national ataxia foundation is and the fact that she was diagnosed with it, it at first made me feel very confused. But with her being up there having all the resources and the knowledge of it, has made it easier. My mother and my brother had it a long time ago and Mary Beth has it now. And a big difference is that there’s so much research being done nowadays. I know that it isn’t curable but with the research being done, hopefully, there are things that they could do to slow the process or help manage it. I have a lot of hope now. Not for it to be cured but I do have hope.
For anyone who (probably) has ataxia or has a relative or friend who has it, but is not diagnosed yet, I would advise you to go to a neurologist who knows things about ataxia. Or go to the national ataxia foundation which is in Minneapolis and get tested there. Because until you’re tested it’s just kind of living in fear of what can be or what could be. I think that when you’re formally diagnosed, the doctors have more to work with. And they can help you better.
Thank you Sandy Holleman for sharing your experience, and giving out a valuable piece of advice!
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