LEWY BODY DAILY JOURNAL

This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.

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Friday, June 20, 2008

Flies

John came through last night—he not only made dinner but cleaned up afterwards. I slept pretty well but was still groggy in the morning. And my eye still hurt when I blinked--the medicine didn't seem to be helping at all. I called around until I found an ophthalmologist who could see me, but he didn’t see anything wrong. He didn’t deny what I was reporting entirely—he said it was probably the beginning of a stye. But it still felt like another experience of my pain not being seen and believed. I haven’t had a stye in 20 years or more, but it makes sense as something that might be a result of stress (particularly as I don’t ever wear makeup, which is the other thing that can cause styes).

John got focused today on flies. The house has a screened porch that connects the two parts of the house, and there were a number of flies inside trying to get out. First John wanted to leave the kitchen door shut on a lovely sunny morning so no flies would get into the house. Then he broke a large bottle of homemade olive oil and balsamic vinegar salad dressing trying to kill a fly. Then he drove into town solely for the purpose of buying a flyswatter. Punding here we come. But I don't think it is the result of too much levidopa, as such behavior was growing worse before John started medication.

I wish he would think about what we might do to enjoy the day instead. I suggested to our daughter that she would have to motivate us if she wanted to go to the beach. She and her brother took a walk on the beach alone (I was just back from the doctor and helping my mother with a car). I would have been happy to go out on the boat if someone else had gotten us moving. But with the kids taking a vacation from their ADD medication I can’t really expect them to do it.
We have friends coming tomorrow for one night. It happens to be my birthday, though I am trying to ignore it. My mother said I am too young to want to ignore my birthday. I’ve never been unhappy about getting older, but right now I don’t want to think about my birthday because I feel like my future has been taken away from me.

1 comment:

Spouse said...

Excuse me!!! "your future has been taken from you" ? I thought you said that John was the one diagnosed with LBD-- You will still be able to go run miles down a country road. You will still be able to go have lunch with friends. You will still have the opportunities to accompany your kids on events and trips and weddings and possibly grandchildren. At this point I believe you are focusing too much on the inconveniences you may find in the future. Your family has just completed a fabulous European vacation on your own schedule, with only a few minor glitches. Your family will still be able to do things like that for a while. Yes, some things will have to change- those changes do not come all at once-they come gradually, and you learn to cope a little at a time. You will gradually need to learn how to do jobs that John has always done. Do encourage him to keep doing things, like dishes and computer for as long as possible. But ease him into being a passenger in the car so you might not need to fight over the car keys. (that should be easy with 2 teens.) Now is also the time that you need to help your children cope with the changes too. Your Daughter's poem was wonderful ! Encourage them to have conversations with their Dad about what it was like when he grew up, and when he got his first jobs etc. They will be a great help to you later if you let them do a little assisting now.
The main point of all this is to encourage you to RELAX. Your cup may not be overflowing, but it is certainly more full than empty.
RELAX AND ENJOY YOUR BIRTHDAY !!!
Di