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I was diagnosed with OPMD in 2016. my mother, grandmother and a few of her siblings had OPMD although none of them were ever diagnosed with it. My mother was the first person in my family to have a blood/ genetic test with a diagnosis. She was 80 and died a few years later. Not from her MD.
After my mother passed I decided to get tested because I had all the same symptoms as my grandmother and mother. My older sister and a cousin we also diagnosed right after I did my test. My neurologist told me there is nothing I can do, and my muscles will continue to deteriorate. He told me not to go out and start exercising or trying to do anything to change this. Obviously he had no bedside manner. I cried for a lot then I got mad.
I have always been a healthy person who is physically fit and I watch what I eat. The week after my diagnosis I went to a Pilates studio near my house and asked for a job. I started doing Pilates and feel like I am the strongest I have been in over 20 years. I completed a reformer and mat pilates certification in 2017 and now teach Pilates three to four days a week. My students are mostly over 50 and a few are in their 80’s. We talk about our issues and have learned to accept our aches and pains as part of being us. We are great support for each other.
I have days where my eyes droop more, I have more difficulty swallowing, and I have more weakness but I never stop looking forward, praying for a cure, and being thankful that I am still living a normal life with very little difficulty. I only have to look around to see how blessed I am.
in 2021 I had a follow up appointment with that same neurologist and told him all the wonderful things I have been doing since my diagnosis. He didn’t even listen! Just asked me a few questions. Didn’t check my strength or request more testing for swallowing or ptosis. He is the “neurologist to see” if you are diagnosed with MD! I have seen a couple more neurologists in the past four years for migraines and they have done many strength tests and talked to me about my symptoms and what I do alleviate them. With my migraine neurologist I have been able to live nearly migraine free for the last year. Other than that I really have no complaints!
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