I have recently been diagnosed with a rare form of #MuscularDystrophy called oculopharyngeal muscular dystrophy, or OPMD for short. To be honest, I’m struggling with this. I’m concerned not only about the progression as I age, but also how this impacts my family.
Although I’ve been experiencing symptoms for many years, it took my ophthalmologist to suggest I might have this disease. I followed up with a neurologist, who also believed I had this disease. I then got genetically tested and there was no denying what I had.
Even though I had a good idea I had OPMD, I was still rocked by the definitive diagnosis. It made me sad, partly because I had to figure out how to navigate this, but also knowing that my siblings and children have a 50/50 chance of inheriting this.
It’s never easy learning to live with limitations is it? I have to always be mindful of what I’m eating because swallowing difficulties has become a normal thing. It’s never comfortable trying to get food to go down without choking. It makes it a real challenge when I eat out or eat with other people at their home.
Another challenge is the muscle weakness in my upper legs and arms. I usually do ok walking in my home, although I use a rollator on more challenging days. I have to use a cane going up and down stairs, and since I’m always with my husband, he makes sure I’m safe. The leg weakness also means that if I fall I cannot get up on my own. Someone has to help me stand.
I do tend to spend a lot of time laying down, but that’s when I can do my best thinking and writing. I also listen to a lot of audio books and have a couple of coloring apps that I enjoy. I miss being able to do the things I could 25 years ago, but do my best to push myself a little to do things I’d rather not do.
I’m always trying to figure out ways to adapt to my new normal and stay as active as I can, understanding that there will be bad days and days that aren’t so bad. No one wants to be diagnosed with #MuscularDystrophy in any form, but I’m thankful to have found a community where I can find support and get great ideas on how to move my life forward and deal with the increasing challenges