Sunday, November 14, 2010

Short Nights

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.


  1. Another wonderful post, Marian. Thank you for writing these.

    I hope this week's appointments will help. Being able to sleep at night has to help, too.

  2. Marian, my heart goes out to you. I echo Alice's appreciation of your posts. I wish for you good sleep and good dreams.