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.


  1. What a beautiful essay, Marian! Thanks for writing and posting it.

  2. Marian,
    I ache for you, but also know that you are strong and will make the best of everything in your life. Lessons learned, wisdom gained. Thanks for posting. Kathy Cochran

  3. Thanks so much for sharing this, Marian. I'll be following along with you! Lots of love, Aunt Miriam

  4. Thanks for writing this, Marian. Margaret & I have thought of you often, and this helps us know you are, as usual, making the most of the hand dealt. Carol must be a very smart woman.


  5. I send you my love, dancing partner of old! Keep on moving and never thirst!

  6. Ages ago I read a book by Peg Bracken which semi-facetiously asked:

    "Would you rather have a big problem that shows or a big problem that doesn't show?
    ...Would you really?"

    I'm proud to be your friend (not to mention much the richer for it).

  7. Hey Marian, thanks for sharing your life. I think of you often and always when I dance. I will continue to check in. Much love, Marcella

  8. Hi Marian,

    Glad to get an update. I'm sad to hear of the new necessary meds and the risk of falls. I'd urge the walker since it is the safest.


  9. Thanks for sharing, Marian. I hope you'll keep writing, it's good for me to read. Do take care of yourself. Love, Kit

  10. Marion, I want to be just like you when I grow up...talented, strong, determined, insightful and wise, to mention just some of your wonderful attributes! I look forward to more posts.
    Much love, Sharon