Wednesday, April 30, 2008


I've been focusing on wanting to move (not right away, in a year and a half) to the smaller house I first bought in Clemson, which is currently rented to students. It seems like the only way to simplify our life. It would make us get rid of a lot of junk, as the house we live in now is much bigger. And I think it would have a better space for my husband. But that doesn't help in the present, and indeed will be a lot of work in the next two years.

In the short run, I'm struggling with how can I possibly manage everything? The latest is a roof leak. The contractor who arranged the new roof when a tree fell on the house five years ago came to look at it and said it was because we hadn't swept the roof in an area where the pitch is low and two parts of the roof come together and leaves accumulate. It hadn't been swept in several years. I'm not sure whether my husband was just too busy or had some sense even a year or more ago of his balance being less secure. I have done it once or twice in the years we have been in this house, but I have more than usual fear of heights and I find it awfully scary. The contractor kindly had his men sweep the roof. But it has been leaking for a while into my son's room and the ceiling will have to be replaced.

Monday, April 21, 2008

to the specialist

We saw the Movement Disorder Specialist at Medical University of South Carolina today. He said in his clinical judgement my husband has the Lewy Body variant of Parkinson's. My husband pushed the doctor for some kind of timeline but he wouldn't give any. I felt he was thorough but in a just-the-facts kind of way.

Wednesday, April 16, 2008

first open water swim

The air temperature was about 65, the water temperature in Lake Hartwell something similar. There was a large group of triathletes, maybe 15 people, all in wetsuits. My wetsuit still fit, which was my first anxiety. I've swum in colder water even in a bathing suit--it wasn't numbing to my bare feet. But when I started to swim my first reaction was that it was too cold, I wanted to give up. After a few minutes I settled down and felt ok. I swam about half an hour, only about half the standard swim to the sewage treatment plant. I didn't hang around afterwards and socialize but I wasn't chilled when I got home.

Monday, April 14, 2008

from an email group

Heck, I've even gotten past the "anticipatory terror" stage, and am steadily making progress on simply living day to day.
Ah, there is an name for it. I am in the anticipatory terror stage.

Sunday, April 13, 2008

a different view of the world

My husband has his appointment with the Movement Disorders Specialist at the Medical University of South Carolina a week from tomorrow, so we don't know much more yet except that a low dose of Sinemet (the classic Parkinson's medication) is helping him. In the meantime, what has been consuming my time (besides my own work) is starting to work through our financial situation. I regret we don't have long-term care insurance and am now planning to buy it on me (it is too late to get it for my husband). The hard thing about trying to figure out the financial issues is that it requires me to look ahead to how difficult it is likely to be farther down the road.

I was for a while feeling very trapped, but I am feeling better. What helped me was coming to the conclusion that it is the way the world works that most people who deal with things like a spouse with a progressive disease do it because we don't have any choice. There is a kind of peace in not having a choice--less opportunity for second-guessing.

I was at a conference in Charlotte this weekend. This morning a few minutes before 5 am the fire alarm went off in the hotel. I put on my running clothes and after walking down six flights of stairs and standing around outside the building for a little while talking to people I went and ran three laps around a silly artificial lagoon.