Friday, February 11, 2011

No One Pities me This

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.


  1. Helpful to see how you stay focused on problem solving. Speedy is a great name for your walker!

  2. Good news this week! Glad to see it. I like the name Speedy, too.

  3. Marian, I continue to appreciate your blog so much. Something I learned as a medical writer is that if you ever do have to call 911, get in front of your front door in case you become unconscious before the squad arrives.

    Sure hope it never comes to that, of course!

  4. Hey, Marian,
    I enjoy your posts. Would it be useful if I came up with a recipe for a high-calorie, high-nutrient milkshake you could make yourself? I think you could make it both more cheaply and more healthfully than the Ensure (but it would be more trouble, and Group Health wouldn't pay for it). If so, let me know, and then I'll have some questions for you.