Since my last post, I haven’t had the energy to write because the insomnia from the tetrabenazine I was taking woke me up a 4:00 in the morning. To solve that I had to cut down to such a low dose I might as well stop altogether. The sleep deprivation had me doing some dingy things.
My cousin, Bertie, who also has HD, reminds me canes don’t work for us. Just as I was making peace with a walker, my HD social worker, Donna, told me some people with HD can’t use walkers and need scooters instead. I thought that would be hard because of my hand movements, but she says the controls can be set to be more sensitive. My friend Rose raised the question whether the PTs at Group Health, where I am a member, would be able to evaluate that, or whether I should go to University of Washington Medical Center, where they have more experience with HD. I left a message for Donna, asking that question, and am waiting for an answer. Meanwhile I am staying off the sidewalks. Fortunately I have a stack of lesbian romance novels I am reviewing for my column in Seattle Gay News. We decided Carol’s dog will be all right running herself in the large back yard. Carol and my friend Louise are being helpful with grocery runs and rides to appointments.
Balance issues mean I had to give up most dancing. I had been doing ballroom, salsa, country and western, square and contra dance. I can still slow dance with Carol
Another symptom can be compulsive thoughts. I have been worrying I will leave a stove or heater on, since I leave my key in the door. Carol points out that I haven’t left anything on yet. I have an appointment with a hypnotist who I hope can help with that tomorrow.
I choke several times a day, which worried me. I have an appointment with a speech therapist, Wednesday, who should be able to help.
I still manage to stay in the delicious moment most of the time.
Sunday, November 14, 2010
Thursday, October 21, 2010
Living with Huntington's Disease
I am 57 years old. I was diagnosed with HD eleven years ago. My sister and my brother also have it.
It affected my memory enough that I retired and went out on disability three years ago. Before that I had done a variety of student services and office jobs at University of Washington for 28 years.
It also gives me chorea movements. A couple of months ago I realized I was having falls about once a week. At that point I started a new drug called Tetrabenazine, which significantly improves my movement and stopped the falls. It also had side effects of depression and insomnia, so I take an antidepressant and sleeping pills. A month ago I reduced the tbz because of the sleeplessness, and during that week, I had a few falls I think are from the change. The last three weeks I have been free of falls. I slow down and make a meditation of each step.
People with Huntington's are supposed to use walkers rather than canes, because our arms movements make it hard to coordinate a cane. If I have another fall, I should technically got to a walker, but I think I would try a cane first since I do know one phd who uses one. My friend Liz suggested a pronged cane. I might try that.
One reason I resist the walker is that there is a stubborn dog in our household I like to walk. Also I do some dog walking as a way to earn some money. And I enjoy that.
My partner Carol is very supportive. She also has a disability which helps her understand. She is a lawyer so she is a good advocate. We have been in a relationship for two years. I love her a lot.
Carol's daughter Lena was thirteen when Carol and I met. We went to an HDSA conference early on and told her she could sit by the pool and not participate, but she decided to jump into the youth activities. The next year, when the conference materials arrived, she got all excited. I appreciate her very much.
I have a friend Louise who has offered to coordinate my care for Carol and me, organizing help we need. I am thankful for that. I also have long term care insurance, which should help a lot.
I have a daily meditation practice that helps me stay in the moment most of the time. When I am there, there is nothing to fear.
It affected my memory enough that I retired and went out on disability three years ago. Before that I had done a variety of student services and office jobs at University of Washington for 28 years.
It also gives me chorea movements. A couple of months ago I realized I was having falls about once a week. At that point I started a new drug called Tetrabenazine, which significantly improves my movement and stopped the falls. It also had side effects of depression and insomnia, so I take an antidepressant and sleeping pills. A month ago I reduced the tbz because of the sleeplessness, and during that week, I had a few falls I think are from the change. The last three weeks I have been free of falls. I slow down and make a meditation of each step.
People with Huntington's are supposed to use walkers rather than canes, because our arms movements make it hard to coordinate a cane. If I have another fall, I should technically got to a walker, but I think I would try a cane first since I do know one phd who uses one. My friend Liz suggested a pronged cane. I might try that.
One reason I resist the walker is that there is a stubborn dog in our household I like to walk. Also I do some dog walking as a way to earn some money. And I enjoy that.
My partner Carol is very supportive. She also has a disability which helps her understand. She is a lawyer so she is a good advocate. We have been in a relationship for two years. I love her a lot.
Carol's daughter Lena was thirteen when Carol and I met. We went to an HDSA conference early on and told her she could sit by the pool and not participate, but she decided to jump into the youth activities. The next year, when the conference materials arrived, she got all excited. I appreciate her very much.
I have a friend Louise who has offered to coordinate my care for Carol and me, organizing help we need. I am thankful for that. I also have long term care insurance, which should help a lot.
I have a daily meditation practice that helps me stay in the moment most of the time. When I am there, there is nothing to fear.
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