Thursday, December 30, 2010

Christmas Fun

The holiday was fun here.  Lots of presents under the tree mostly for Carol’s 14 year old daughter, Lena.

Carol told me about the singing group the Bobs, who I had never heard before.  Their day after Christmas concert had lots of tight harmonies and satirical lyrics made us laugh a lot.

I am getting rid of my old apartment I kept until it was clear Lena was comfortable having me live with them.  Louise is organizing help for the move.  Today I sorted which things I am going to donate to a thrift store so my stuff will fit into Carol’s house better.

My friend Sharon suggested I have an OT appointment in case something like weighted spoons might help.  I had that today but found that the unweighted spoon was actually easier to handle.

Thursday, December 9, 2010

Care Committee

Through the magic of bureaucracy, I am still waiting for my walker to be delivered, so still staying off the sidewalks and reading romances, as well as indulging my addiction to Law and Order TV reruns. Carol says she started watching the show when she was in law school and found it helpful with her studies.  I had a long period without a TV to catch up on

Meanwhile, my friend Louise pulled together our first care committee.  Her partner Liz says she has been nudging Louise to do this, so I am grateful to her, too.  The idea is that the committee will coordinate volunteers for whatever Carol and I need to help with my HD.  Louise plays with Rainbow City Band. She mentioned that some of the other players appreciate my big smile in the front row, and my writing about the band in my column.  She thinks they might offer to do various tasks including playing music for me (and Carol).  So we start joking about the arts and culture succommittee.

My friend Dick was at that meeting, too.  He lives close to Carol and me and is willing to give me rides.  Another friend, JoAnn, has done care giving for decades and was there.  Another friend, Mel, called to say she was looking at walkers in the thrift store and wondered if one would work for me.  Unfortunately it has to be a pretty specific kind of walker to work best for my HD.

The present moment seems generous.

Thursday, December 2, 2010

Celebrating Walker!

I finally made it to a pt appointment, yesterday, and found I am able to use a walker.  Had to order the one my cousin Bertie recommended as the best one for people with HD.  It should come soon. Yay!

Hypnotism helped with the worry about turning off the stove.  Plus I decided to listen to Carol who pointed out I haven't left it on yet.

Speech therapy reduced the choking, which makes me feel much safer.

I found the low dose of the tetrabenazine I am on helps a little with things like my overactive gag response, making it easier to brush my teeth.  Carol suggested increasing it a little, once my sleep gets stabilized.  Dr. Bird, the HD expert, agrees

I am realizing Carol's dog appreciates the attention she gets from having my home most of the day, which helps make up for the fact I can't walk her any more.

I am still enjoying the pleasure of the moment.