Friday, March 25, 2011


Elizabeth sent some nice recipes for nutritional shakes that include delicious non dairy options like coconut milk.  She also shared some research about cream and butter being good for people with HD (PHDs).  Carol and I have an appointment with the HD expert, Dr. Bird, soon, and will discuss cream with him.  Meanwhile, his social worker, Donna, told me he recommends Instant Breakfast, for people PHDs who are also eating, since Ensure is intended for folks who aren’t eating at all.  Also Instant Breakfast is cheaper.    The fact that it dairy doesn’t seem to bother him.  At first, I thought I would go to Instant Breakfast completely, since it costs less.  Carol suggested I make the smoothies most of the time, because they are healthier.  I agreed with that.  Days I’m going to the gym, I’ll do the Instant Breakfast, because it is easier to carry.  Liz and Louise gave me some hemp protein they weren’t using which works for me, if I don’t mind green shakes.  I don’t.

Donna invited me to  come along to a talk she was giving at Jewish Family Services about HD, so I could talk about my experience.  Her talk was good.  I ran into a man named Dick there whose wife has HD.  I had missed him and Barbara in our support group meeting.  He mentioned they had moved because Barbara was having trouble with stairs.  That led me to thinking that I would move into an Assisted Living Facility (ALF), if I couldn’t handle the stairs in our house.  Then it dawned on me we could ramp the front door steps.  And I could ask for help with laundry.  I have Long Term Care Insurance, which can be used  for an ALF, but also for household help.

Speaking of household help, another friend, Dick, told us he has a spare electric broom we can have.  So the problem of the vacuum cleaner being of the fritz is solved.

My new addiction is going through the episodes of the old TV program West Wing.  Carol turned me on to them.  I somehow missed them the first time they ran.  My friend Mary was a librarian in the late Reagan early Bush white house.  She says they are pretty authentic.  They sure are engaging.  I can’t wait to flip the disk over.

The present moment is blue skies.

Friday, March 18, 2011


I was catching up with a high sschool friend, Ed, and told him about my trip to Nicaragua to help my sister come home.  I'm impressed that he also went to the same country, because Bainbridge Island has a sister city there.  He drove, which I knew was a theoretical possibility..  He asked me if that was my last big trip.  One thing I learned on that flight is that one can ask for wheelchairs and attendants to get across airports.  I have no hesitation about asking for that help.  My mother made trips to Hawaii and London right up to the time she went into a nursing home at 70.

I have been saving up Amtrak frequent rider points through a credit card with the goal of taking Carol to see my gay pen pal with HD in Toronto.  If I manage to save up more, she gets to choose the next train destination.

I'd love to take Carol to Italy, a country I love for its beautiful language and delicious food.  She is an art enthusiast and would eat up that part of the culture there.  Money is tight, so we won't make it there unless we have a surprise infusion of cash.  Nicaragua may wind up being the last intercontinental trip.

I made a day trip to Vancouver, BC, for a longitudinal study I am in at UBC.  I had a thinko and made my reservation to Vancouver, Washington.  I didn't find that out until the day before I went, when Amtrak left me a message about changing the train to the bus. By that time, the right train was full.  I took a Greyhound that arrived too close to my appointment.  I was half an hour late.

I broke my glasses and had to make an appointment to replace them.  I asked my friend Dick to give me a ride but also come along as a fashion consultant, because I am too butch to choose frames.  Dick was about to say he doesn't have the designer sense gene as a gay man, when he remembered a time we had gone dancing.  I fit the stereotype of a lesbian telling him it was all right to wear rubber bottom shoes, because I had some duct tape in the car.  He fit the stereotype of the gay man going immediately to Nordstrom's for some leather soled shoes.

The present moment makes me laugh.

Friday, March 11, 2011


    One of my heroes in the HD world is Lavonne Goodman.  She is an internist who has a son and daughter at risk.  Dr Goodman is very good at pushing researchers.  She ran a trial of supplements I was in that kept me stable for five years.  LaVonne gave me an article about one person with HD whose balance improved when she did some stationary bicycling and weight lifting.  I started doing the same thing twice a week.  It feels like it helps, plus I love the endorphins.
    My friend Dick told me about a gay exercise group that stretches and does dynaband work and takes a walk followed by lunch out.  I did that until my walking problems interfered.  I still enjoy meeting them for lunch.
    It is widely known that learning a language helps keep brain cells agile.  Carol gave me a copy of Christina Garcia’s Dreaming in Cuban for Christmas in Spanish, because I told her I wanted to keep up what I learned for my trip to Nicaragua.  I am inching through that, because I have to look up a lot of words.  Great book.
    My computer went belly up, so Carol and I decided to buy a new laptop together.  I’m not feeling confident enough to set it up, because of my thinking problems, so that, as well as establishing wireless and replacing a modem, also on the fritz, has fallen to Carol at the end of her long days.  Fortunately, my friend Oscar has also been helpful doing things like loading Drop Box on my computer so I didn’t lose files.  He is willing to do that again on the new one.  I definitely owe him and Carol dinner to thank them.
    I forgot to mention another thing, last week, that is helpful with cooking.  Pre-minced onions and garlic keep me from having to chop them with my unsteady hands.
    My sister called to say she is basically happy in the nursing home.  The other patients are more disabled than she is, which is not surprising.  There will probably be less of a difference in time.  It is new for her to call.  I’m usually the one who does that with both her and my  brother. Tom has started calling more regularly.  I like that.
    The present moment is greening.

Friday, March 4, 2011


     Carol is working long hours at her job.  I want to reduce stress for her.  I decided it wasn't fair to simplify my life at the expense of complicating hers.  I offered to do half of the cooking.  She pointed out it was kind of extreme for me to go from doing all the cooking to doing none.  She said it would be helpful if I would cook occasionally. I am doing somewhere in between.
     One of my favorite dishes is cajun rice and beans.  I had been making that with sausage which is hard to chew.  Shrimp substitutes nicely.   It is easy to make a veggie version.  Thanks to my friend Hyojin for turning me on to the automatic rice steamer which turns itself off.  Chili is also easy to cook with the meat separate and is satisfying.
     I had been doing pharmacy runs for various of my medications.  Carol said it would be easy for her to pick them up on her way home from work.  Waiting her turn wound up taking a half hour.  I offered to ask my friend Dick to take me to Group Health after our standing lunch.  He said he would.  The bus home from there comes fairly frequently.  I think the wait might be less during the work day.
     Group Health decided not to cover Ensure, because I am not having trouble absorbing nutrients.  I am going to appeal because I think swallowing difficulties are a medical necessity. 
     Fortunately, my friend Elizabeth, who is a nutritionist, says she can come up with high calorie, high nutrient milkshakes I can make myself, cheaper than Ensure and more healthy.  The only issue is that I am limiting milk, because people with HD who don't drink milk do better than those who do.  She is creative.
     The latest on my sister is that there was a brief moment my brother decided he didn't want her to move into the nursing home in Boulder she was planning on moving in to because he was intending to go there, too.  He was afraid they would have a fight and be stuck there together. It has a Huntington's ward.  I thought my brother had priority, because he is the one of us who has stayed in our home town.  My father thought my sister's needs trump, because she has no place else to go.  He talked my brother into it, saying the facility is large enough that they could each have their space.
     Joan managed to get there safely by train.  She moved into the nursing home, yesterday.  There is a two month residency requirement.  My father is paying the non-resident rate, which is expensive.
     The present moment is fragrant.