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Climbing the Mountain of Life With Stiff Person Syndrome

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The mountain is still there, and I am still climbing. But this climb has been made easier by my amazing brilliant empathetic professor of neurology, and my amazing 24/7 caregiver and wife. And now I finally have a diagnosis, stiff person syndrome, along with bradykinesia — both progressive and incurable.

I have epileptic seizures that go with that. I’m fully awake, fully conscious, just a prisoner in my own body. Although the seizures are short in duration, they are terrifying and horrendous. But the worst thing is I know they are coming and can do nothing about it. I am just a passenger, and I can’t communicate because my ability to speak has gone.

This condition wears me down. No two days are ever the same. I can be enjoying the TV or reading a book or listening to music and then out of nowhere I have full body tremors. No part of my body is spared. My temperature spikes and I can do nothing about it; I just have to ride it out. Often I have lost the power of speech, but the really hard part is watching the person I love become frightened even though she has seen this many times before. And then she puts her hand in mine and it stays there until my symptoms are under control.

This journey, this climb is not about me, it is about us — my wife and I. She is the one holding the rope, she is the one who is stopping me from careening down the mountainside, she is the one who encourages and strengthens me. And this climb has helped us to educate and support people on a similar journey. Some people even laughed when I said I had this condition, but we are no longer laughed at. We have begun to educate and inform people on stiff person syndrome and the devastating effect it can have on people’s lives.

Originally published: March 16, 2022
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