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undiagnosed movement disorder

Brain & Nervous System | Last Active: Apr 19, 2023 | Replies (108)

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@beth11

Hi Lisa thanks! I am doing okay mobility wise, except that I am not driving. My toes are curled under and feet arched unless I'm standing upright with my full weight and so it is not safe to drive right now. I don't walk distances such as shopping at Walmart (my husband gets that duty now!). I have some leg weakness now from not being very active and hyper reflexes in my legs, but my arm reflexes were a bit improved from last time. I am starting to have more pain in my feet/joints from the abnormal postures. What is very difficult is the full body muscle spasms. It feels as though every muscle in my body is engaged/active at times and has lately been affecting my breathing i.e. I am unable to take a full breath when it affects my midsection. I refuse to give up and continue to look for effective treatment. My husband has been very supportive and although we have difficult days, he has continued to encourage and support me at all my appointments/tests/hospital stays. I will say that I have thought about what it may look like in the future if I need more help/support. It has opened my eyes to those who suffer from decreased independence as I am frustrated with my lack of independence.
Beth

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Replies to "Hi Lisa thanks! I am doing okay mobility wise, except that I am not driving. My..."

Hi Beth, I'm sorry you are afflicted with a horrible ailment. The midsection spasms are familiar to me. My movement disorder specialist suspects I have abdominal dystonia. The spasms can last for hours. If I am standing up, the muscles tighten, pulling my upper body forward, crushing the ribs and I can't get my breath. It feels like a boa constrictor is squeezing me. I will begin a new med this week. Austedo is the name of it. If that doesn't relieve the spasms,Botox is the Plan B.You are the first person I've "met" who has this. Do my descriptions sound familiar to you? I'm a 73 yr old lady who also has PD. I live in South Carolina.

Beth,I have no help on my own. My son lives in Calif and wants me to move there. I dont want to burden him.But I will seriously consider it. I have fallen several times.I use a walker to get around.If there is anything I can recommend please feel free.