Starting Huntington's Treatment

Two weeks ago, I had my first clinical appointment for Huntington’s Disease at Johns Hopkins HD Center. I had been there for testing and research, but never for treatment. My symptoms have progressed to the point where they needed to be looked at by a professional. This has taken me years to come to terms with. Kim scheduled the appointment with Dr. Bang, who spoke at the Boordy event. She took off work and drove me and sat in and took notes.

We went through all sorts of tests. Family history, medical history, a questionnaire on behavior, sleep, activities of daily living. A physical, neuro tests, cognitive tests, showing her my walk and balance. I’ve been pretty open with my balance issues. I’ve had falls. Luckily, I haven’t been hurt. It’s mostly really embarrassing. I have also had trouble swallowing. This is particularly scary because so many of us die from choking. I feel like I’m a few short years away from needing a wheelchair and dying.

Dr. Bang didn’t think I needed medication. She does want everyone around me to learn the Heimlich. There’s not much in the way of treatment, so she wants me to go to therapy (because all of this is hard to deal with), physical therapy for balance, and speech therapy for the swallowing. It’s a LOT. With very little payoff. My neurons are dying no matter how much time and money I put into it.

I went home and told Tristan about it. I cried. He held me and Rip head butted me. He asked if I wanted lunch, and I said I wasn’t hungry for the first time in my life. But we went anyway because I didn’t want to sit around feeling sad. We go to John Brown Butcher (Hunt Valley, not the one in Remington, which is also great) to order a burger and chicken shawarma and falafel pita, which I picked at even though they were both delicious. They have a small dine in area for lunch only, and I shit you not, I’m sitting right under this first aid for choking poster.

So I’ll take a hug if you see me, but this is really my plea for everyone to learn the Heimlich. It’s also to warn people about changes you’ll be noticing.