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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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18. The Wound Doctor (April 2003)

Over the past few months, Mother developed some additional physical problems, but there was also a glimmer of good news.

On most days Mother spent many hours sitting in a wheelchair. Since she went to bed early and got up late, about half her day was spent in bed. Also, during the day she would be put to bed for a couple of hours, mainly to relieve the pressure on her back side and prevent bedsores. It turned out that this wasn't good enough. From sitting in the wheelchair so much, Mother started to develop many sores on her back and behind. Now, she spends most of the day in bed, and the aide shifts her position now and then. Because she is spending so much time in bed, she now seems more isolated.

"From sitting in the wheelchair so much, Mother started to develop many sores"
A second problem is that Mother developed a red rash on the upper half of her body. The source of the rash is a mystery. Several months ago, a doctor started coming over every week or two, originally to examine Mother's hand wound. He seems to think the rash might be an allergic reaction. But Mother never had allergies and the rash affects only her upper body. In any case Mother now takes an allergy medicine, which seems to be having some effect.

This particular doctor started making house calls to examine wounds that had developed on Mother's hands. Mother had so much muscle tension that her hands were always clenched into fists and her fingertips were digging into her flesh. Her left hand was a particular problem, since her thumb was usually trapped inside the fist. Until the doctor came over, the aide tried to put a rolled-up washcloth inside each fist. The doctor, who specializes in wounds and bedsores and often sees patients in nursing homes, found that Mother's fingers had damaged the tendon of her left thumb. He sent her to a local hospital, where they built splints to hold her fingers apart somewhat. Use of Duoderm, a fabric impregnated with medicine, helped the wound heal. Although the splints seemed to work, the damage to the tendon was done and Mother's left thumb is permanently damaged. Additionally, the splints irritated the rash Mother had developed, so the aide can't use them for now. That means it's back to using the less effective rolled-up washcloths. The only thing that has prevented this from being a bigger problem is that Mother's muscle tension has decreased somewhat due to a new drug treatment.

The wound doctor consulted with a neurologist about how to deal with Mother's extreme muscle tension. The neurologist recommended a drug called Requip. This drug is sometimes used by people with Parkinson's disease. Apparently, it can enhance the effect of L-dopa, which Mother was already taking for muscle tension. A major side effect of Requip is somnolence. In fact, Mother had tried Requip over a year ago, but she was always so sleepy that we had it stopped. This time around, the Requip has had a more positive effect.

"A small dose of Requip made Mother more vocal and alert"
The doctor started Mother on a small dose of Requip, and the aide reported that her flexibility increased. To us, a second effect was more striking: Mother became more vocal and seemed more alert. Before the Requip, Mother was almost always silent, but now she started talking again. She responded to questions and spoke up during the conversations she heard going on around her or to words she heard on television. Admittedly, a lot of what she said wasn't coherent. Still, it seemed to be a positive development. Over the next few weeks, the doctor increased the dosage. Unfortunately, that had the effect of inhibiting Mother's speech.

We liked it when Mother was more alert and more vocal on the lower dose of Requip. The aides, on the other hand, like the higher dose, because Mother seems to be more flexible. Our first reaction was to go back to the lower dose, especially since our goal isn't to make life easier for the aides. Rather, we want what is best for Mother, which is an almost impossible judgment at this point. Does greater alertness increase the quality of Mother's life, or does it just make the family feel a little better? It turned out that the proper course to take became clear. The aides told us that Mother is better able to eat and swallow with the higher dose. The higher dose it was.

The weather is warming up and Mother has been able to spend some time outdoors. We hope she can enjoy it.

17. Future Concerns
19. Various Problems (August 2003)
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