One part of having HD is that I have to eat constantly to keep from losing weight. I found cramming it in too much can cause me to lose it, which doesn’t help the problem. I am using Ensure for three meals a day. My friend Rose, who is a social worker, told me I could request that my doctor prescribe that so Group Health would cover it. I did, but heard GHC has to decide whether it is medically necessary to see if they will cover it. Through the magic of bureaucracy I am still waiting for an answer a month later.
I had to give up popcorn because it is hard to swallow, which was a loss for me, because it was one of my favorite foods. I have been choking less, which Carol thinks is because I lowered the level of the tetrabenazine. The constant choking had me thinking I should move into an assisted living place. Then I remembered some advice my brother had about keeping my cell phone close to me. Now I know I can call 911 I I have a problem. I still can eat everything from bagels to taquitos.
Last week I forgot to thank the people who helped me move: Carol, Rose, Beth, Dick and Mary. My friend Richard provided the truck, wanting to thank me for taking him to some concerts on my comps.
I think I also forgot to say the Nursing Home my sister is interested in has a HD ward. The update is that she contacted them and found out they have an opening. She is taking medication that is supposed to help with the irritability. My father, who is a psychiatrist, thinks it would help better at a higher dose. Joan says the higher dose makes her too sleepy. Rose also suggested she see a doctor who could suggest a different medication.
Some good news is that Carol’s daughter Lena wants to be part of my care committee and lists Huntington’s disease and volunteering when I asked her what her current interests are.
In my care committee we had a discussion about naming my walker, since I said it is my best friend. I suggested Red, which is its color. Carol asked, how about Slick, because it is cool. But I countered Slick sounded pretty scary when you have trouble keeping your balance. So we agreed on Speedy. Apparently I speed along pretty well with it.
The present moment is entertaining.