It started eight days ago. I woke up Monday morning, got out of bed, and couldn’t walk well at all.
Before that, with HD, I had only had balance issues but was walking fine. But last Monday I didn’t stagger or stumble or anything I’d ever envisioned I would do or had seen my relatives do.
I shuffled. A Parkinson- like shuffle. Hard to put one foot in front of the other. Small steps. Not covering much ground.
Two neurologists have told me that it can’t be HD. It came on too suddenly and has the wrong movement MO. I should investigate other areas.
And I knew nothing about other areas.
Over the past week, I have learned about Drug induced parkinson symptoms. I have learned about Lewy bodies, just enough to scare me.
Every day since it started, it has gotten worse. Today my doctor ordered me a wheelchair. By tonight my husband had to line one up to borrow so he could push me around if we had to go out before insurance approved my order.
And by the time he had made that arrangement, my walking had deteriorated to the point that it was just alternating sets of toes clawing. Nothing else happens. He called to see if he could borrow, instead, a chair I could push myself around the house in.
I had to use a makeshift bedpan tonight.
My husband is mentally rearranging furniture to make the house wheelchair accessible. We are both silently hoping we can get a chair that is narrow enough to roll through the old bathroom door.
We are hoping for the best but planning for the worst. I am being taken off meds that could cause effects like these and my MRI will be of my brain instead of my spine.
I don’t know if, tomorrow, I will be able to walk or if I have already walked my last step.
The one HD consolation prize, the gradual progression, has been ripped from me.
And whatever this is, I don’t know if it is going to stop now that it has taken my feet and my legs. Is it going to work its way up my body and immobilize it all?
Is it going to have its own accompanying horror show of symptoms for me to dread, or will it take me out so fast I won’t have time to go there?
My husband and I are on our own in uncharted territory. I have something that is undiagnosed, swiftly progressing and, so far, has no known treatment.
As well as HD.