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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Thursday, June 26, 2008

email to doctor

I've slowly been working on an email to the specialist who saw John. He wanted John to have neuropsych testing before trying Alzheimer's medications. The neuropsych testing didn't show much, but I still have some hope that Alzheimer's medications would help. So I am trying to explain in my email the issues that the neuropsych testing didn't show. So far I have written:

The testing doesn’t show problems, but I experience our daily life as radically changed. Some friends came to visit last weekend and were struck not only by John seeming physically frail but also by how he turns to me to do things for him and/or tell him what to do and by his being detached from what was going on (even more than he used to be).

Let me see if I can be more systematic about what symptoms are affecting our life:

  • John can’t manage planning things like travel or family activities. I notice this most with anything that requires trading off several considerations to decide what to do, but it is also an issue with simple family activities because he doesn’t take initiative. He doesn’t seem depressed, just passive.
  • John gets focused on something small to the exclusion of what is significant. One day at the family summer house he was focused on flies (there were indeed some flies in the house). He knocked into and broke a large bottle of salad dressing trying to kill a fly, then got obsessed with going to town to buy a flyswatter. What I thought should have been significant was whether we were going to take our kids to the beach.
  • John’s memory has never been good but it is significantly worse. Mostly plans or things that need to be done go out of his mind but he will remember if I remind him. But occasionally he doesn’t remember even when reminded.
  • He gets confused about things such as what we need to do or why. Mostly I can explain whatever it is to him and he will get it (or at least say he does). I haven’t seen him get lost in familiar territory yet, but he did fail to recognize our rental car after we had had it almost a week.
  • He will usually either leave the room and go read or sit without saying much if there are more than two or three people gathered, even with friends and extended family. He has some trouble with his hearing if there is background noise but it feels to me more like he gets lost.
  • It usually takes him until at least 10:30 to be ready to go anywhere in the morning.

John doesn’t tend to get anxious and is only rarely defensive or in total denial. He seems willing to put himself in my hands. But I can’t do everything. I need to be able to put some of my energy this summer into my own work and our son’s college search. I’ve been hoping that Alzheimer’s medications will help.


2 comments:

Joann said...

Sounds like a lot of stress, even among the good things. I am glad you had a good birthday.

spouse said...

It is very hard not to stress when changes happen. You might might not realize it, but you are making progress every day !!! probably better than, or at least equal to the decline in John. you are recognizing so many of the slight changes in his attitude and mannerisms that will be very helpful to his MDs.
You are also recognizing that you still need to be you and carry on with the things that are important to you !!! Have confidence, my dear. You can do more than you think you can. But do ask for help whenever you feel the load is getting too heavy. Many of us have added your family to prayer chains.
And answers will come as they are needed.
Di