It’s been a while. Harder times have come to stay. I have extreme chorea now which I didn’t expect to happen so early. I had to go off a medication that apparently had masked it. I found out that the mood stabilizer I had been taking for 13 years was the reason for my extreme OCD. The buying of houses and cars and food and stuff that I couldn’t stop. I couldn’t be quenched. I learned the lesson that no medicine should ever not be reevaluated. I can’t take terbenazine because of suicidal side effects. The movement is untreated then and that’s ok for now. I am never still. I have cramping and fl ..read more

But I am still me. I feared that when it really kicked in, I would become another person. The terrified person in my nightmares about the future. That future is unfolding. I have chorea now. Involuntary movement of my arms, leg, feet, trunk. But they are the same body parts I have always had. I observe them changing and we adapt and adjust. The walker is now an option. Ramps are needed for thresholds. I use the walls as handrails as I go about my day. Because of some other bad effects, I recently stopped taking Abilify and that’s when it started. The neurologist said that the Abilify had likel ..read more

I remember when it happened. The first time I tried to figure out something and it was so hard I gave up. It was in Algebra 2. I thought and thought and it just would not compute. It was so unpleasant that I decided I didn’t want to spend periods of my life feeling so overwhelmed and confused. So I stopped trying. I had already started drinking by then. Drinking gave me an excuse to not try and to not care that I wasn’t trying. Fast forward to now. It’s harder for me to do things now. Thing by thing. It hurts to try until I give up trying. I sit on the couch and wait. Wait until I am unable to ..read more

I dropped a piece of tissue and picked it up off the floor and it fell out of my hand. I picked it back up and it fell out again and again and again. I leaned forward to grab it tightly and I knocked over the trash can. I staggered trying to refill the trash can because I was dropping and dropping. I left the bathroom and nobody saw it. But it really happened. It’s happening. A kajillion times a day. I’m in danger of cracking glasses and plates that just want to be cleaned and put away with no molestation. I fill out a form and it feels like I’m using the pen for the first time. I’m no longer ..read more

https://lifeeffects.teva/us/articles/hd-me-and-rupee-life-with-my-new-service-dog ..read more

One of those nights when I can just feel my brain cells dying ..read more

Maybe you promised and maybe you researched and prepared. And maybe you vowed to be there for me when times were the darkest. But then things got dark. Too dark. And I disintegrated in your eyes. You misinterpret things I say and think they are sinister. There is no sinister. There is only love and me trying to live and express myself through the cloud of this disease. You treat me suspiciously, like a stranger, despite the forty years. But the truth is, I am still me. You are the best friend I have ever had and I will always love you. And because I love you, I release you from your promise. T ..read more

When I lived in New Bern, I went from being able to decorate a tree to not being able to. I started to feel too bad emotionally or physically, and I couldn’t break it all down into tasks and initiate them. My friend, Ari, would come over the last few years and decorate it for me. She would give me directions and I would follow them. Those were some trees. This is a picture of my tree this year. Friends gave us the tree, freshly chopped from the forest. I helped my husband install the tree in the stand he ordered. That was around Thanksgiving. It sat there on the porch every day with no water ..read more

Just as I will no longer flog myself because I weigh more than other people, I’m finished feeling guilty for not wanting to do things, for sitting in my house looking out the window. From now on, the best I can do is good enough and I won’t think I need to apologize for it. I am bursting out of the shame of Huntington’s disease. No more thinking that my ancestors and I are somehow morally flawed to the extent that our genes turned us into shriveling animals who hurt ourselves and the people we love. I’m letting go of the perception that my stigma is equal in intensity to that of a sexual offen ..read more

Bruce Martin Today Bruce Martin turns 66. That’s a great reason for us to come together and celebrate. His wife, Helen, thinks it would be great if we all send him a birthday card, and I agree. It doesn’t matter if our cards are a few days late. Bruce, enjoy your special day, but know that you are beautiful and valuable each and every day. Here’s the address: Castle View Nursing Home, Glenfaba Road, Ballatessan Meadow, Peel, Isle of Man, IM5 1DX. Thanks everyone. Love ..read more