Broken Door Handle

The bad news this week is that I broke the handle on the bathroom door after Carol told me not to pull too hard on it.  I couldn’t  figure out how not to do that.  She says she is bummed she has to fix it.  I apologized.

We were watching a cooking show and Carol saw a dish she said looked good.  I thought she was suggesting I make it.  I said I wouldn’t be comfortable chopping the vegetables.  She said she meant for her to cook it.  That reminded  me of a goat cheese stuffed chicken breast recipe in a book at my ex, Donna’s.  I asked her for the recipe.  It does include some cut up sun dried tomatoes  I can do that safely with a butter knife.

My new old tv series passion is Six Feet Under.  Very fun, if dark, stories.  Carol has the set.  I am working my way through it impatiently.

The present moment is soft.

Seattle Insight Meditation Society

    My friend Jude has been giving me rides to another friend Ange who gives me free acupuncture. That makes the trip last a half hour rather than one and a half by bus.
    Jude does Insight Meditation, which I also do.  On our ride, together, she mentioned she is going back to Seattle Insight Meditation, lectures by Rodney Smith, that meet at St. Mark’s Cathedral.  I had gone there, but stopped, several years ago.  I had found it hard to make a commitment to be there every week.  The talks build on each other. Jude had a conflict every other Tuesday, but felt she could follow the thread. I figured I could, too.
    I was a bit nervous that my movements might distract the person sitting next to me. My next door neighbor was Mary.  She started to chat to find out what my disease is.  Mary said she was happy I sat down next to her, because my HD put her concerns in perspective.  Very helpful for me that she said that out loud.
    The present moment is sunny.   

No Fear of Falling

I had been using the walker only outside, since I hadn’t had any falls indoors.  I had one, last week.  It’s a bit of a challenge remembering to use it indoors, now.  It’s a drag having to clean off the wheels.  Carol pointed out that that would be easier if I had a second walker.  At first I thought the extra one would get in the way.  Then, I realized she was right (those magic words).  I had the one my friend Leslie had given me downstairs as a spare.  I moved it up.

Using the walker indoors means I can’t vacuum (unless I take my friend Mary’s advice and get a riding vacuum cleaner).  I feel badly adding that to Carol’s already long days.  She says maybe we can hire Lena to do it.

I also fell outdoors when the walker ran across a crooked patch.  A reminder to slow down.  I think my 18 years of Aikido helps me remember to fall safely, even though that was a long time ago.  It doesn’t scare me.  Just feels stupid.
 
That reminds me of a conversation Carol had with her mother about the fact that her mother found using her walker embarrassing.  Carol asked, “Is it less embarrassing to fall in front of your friend.?”

My friend Rose also does Interplay.  She gave me a ride there, this week.  At first, I was nervous about doing the improvisational dance movements with the walker.  I have to remember to have one hand on the walker at all times.  The leader Christa pointed out that I could sit and dance.  She put a few chairs down and invited the others to use them for their dances.  She acknowledged that I am a lifetime dancer, and said I never have to stop Interplay.  She also got my permission to push me in the walker in a dance, which was fun.

I noticed that, after I went to the trouble to separate the meat from the dishes I cook, the teenager hasn’t been eating them.  She is on a run of deli food and pizza from the food coop.  Carol says it is all right to put the shrimp back in the rice and beans.  I remembered I know how to make meat loaf, also comfort food.  We can  rotate the beef with turkey, since iron is implicated in my HD.

The present moment makes me laugh.

Dance Me to the End of Love

Last night we went to see Madeleine Peyroux perform to review for my column. Carol turned me on to her. Her name didn’t sound familiar to me, until she sang “Dance Me to the End of Love,” Oh, right, that Madeleine Peyroux.” It is a great song. Carol reminded me she had added it to the playlist for our wedding. She wasn’t sure whether Peyroux wrote the song so I googled it and found out Leonard Cohen did. His music and lyrics and her voice are a fantastic combination.

I had been assuming Instant Breakfast would mix with water, so it would be easy to do at the gym. It takes milk. I figured out I could add instant milk. Carol hates the taste of powdered milk because her mother watered down the real milk with powdered when she was growing up, because they were poor and five kids went through a lot. She didn’t think it was a very good solution. My only childhood association with milk being gross was after someone told me it has formaldehyde in it. My friend Mary suggested I might be able to get milk in the vending machines at the gym. I told her there is actually a cafe that has it. I think I will go with the cheaper version.

Oscar did indeed help me with my computer. I offered to take him out to dinner. He just wanted some pasta at home. I wound up having an extra free ticket for Cris Williamson’s concert, since Carol has a conflict, Oscar agreed to use it. When I said I would like to take Carol out to dinner to thank her for for all the work she did on the computer, she reminded me we have coupons for free dinners leftover from our wedding.

By the way, my friend Alice, who is a technical writer, offered to help with the setup.  It was good to know we could ask her.  Carol wound up figuring it out herself. We did ask Alice about something that was turning up on Carol’s computer, which we use as a backup, that looked like a virus after a computer shop had cleaned out viruses and set up better protection. It turns out what we had was malware. She told us how to download free protection from it.

The present moment is springlike.

Smoothies

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.

Travel

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.

Exercise

    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.