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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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10. Things Get a Bit Worse

Mother was still walking with assistance. She was friendly and liked to call friends and relatives on the phone (although eventually she needed someone to dial the numbers for her). At this point, she didn't do a lot around the house. She stopped reading and wasn't interested in the books on tape that a friend gave her. (She also had great difficulty remembering how to use the stereo's tape player.) She watched television with Dad, who likes news programs, and Mother seemed to retain a lot of the news. We were sometimes impressed by her knowledge of current events, while her memory of other things wasn't so good. Some things from the distant past were remembered, others weren't; some recent things were remembered, others weren't.

"L-dopa helped with Mother's extreme muscle tension for a while"
There were a couple of incidents of nighttime incontinence, but physical problems were really the next big concern. Mother's walking was a problem, and her arms had a lot of muscle tension. If you held her hand, she would crush your fingers. We sought assistance by returning to the local neurologist, the one who had been reticent to talk about dementia. We informed him that Mother had had a full work-up at Columbia Presbyterian, and they concluded that she had Lewy body disease. He was very interested in hearing about the tests that had been done and produced his notes, which showed that Lewy body disease had been his diagnosis too. He had a couple of ideas for dealing with Mother's mental and physical problems. He noted that Mother was taking 5 mg of Aricept a day, so he suggested increasing the dose to 10 mg. We followed that suggestion briefly, because right away Mother became very agitated, just as she had when she first started taking Aricept, and we weren't going to go through that again. On our own, we went back to the original dosage and her agitation subsided. This is another reason why we think the Aricept was not a good drug for Mother.

To help Mother with the muscle tension, the neurologist prescribed L-dopa (levodopa/carbidopa or Sinemet), which is commonly given for Parkinson's disease (and was the "miracle" drug in the movie Awakenings, based on the book by Oliver Sacks). One big concern was that L-dopa could make Mother's hallucinations worse, which meant there was a tradeoff between improving her physical symptoms and worsening her hallucinations. A small dose of L-dopa did seem to improve Mother's flexibility for a while. As things got worse again, the doctor bumped up the dosage, which again improved things for a while.

Another thing the doctor did was to prescribe a round of physical therapy. The physical therapist was based in a local hospital but made house calls. Medicare covered a limited number of visits. The therapist told us that she had two other patients with Lewy body disease, but it was a relatively new disease for her too.

"The physical therapist ordered a walker, a wheelchair, a hospital bed, and a commode"
The physical therapist was good. She took Mother through a series of exercises and got her up and moving around. The best thing, though, was that she knew that the house had to be set up for improved safety and to prepare for future deterioration of Mother's condition. Until that point, Mother was still sleeping in her bedroom upstairs, the same level the bathroom was on, but she needed to go downstairs to eat and sit in the living room. The aide assisted her on the stairs, in using the bathroom, in getting dressed, and with her daily hygiene. Mother could no longer rise from a chair by herself, so the aide would pull her up by her arms and assist her in walking from room to room. The physical therapist didn't approve of Mother's using the stairs, and she knew what equipment we could get through Medicare. Immediately, she ordered a walker, a wheelchair with a gel seat pad, a hospital bed, and a commode. When these arrived, the dining room was converted into Mother's bedroom. The commode went behind a screen in the corner. Now, the aide brought basins of water for Mother to wash with. Getting this equipment was the greatest service provided by the physical therapist. (Only the walker turned out to be inessential, since Mother couldn't use it — she was too unstable. The commode was useful for about a year, until the incontinence increased.) Any physical improvement from the therapy was short-lived, however. In fact, about six months later, the neurologist again prescribed physical therapy, but the therapist said that she could no longer help Mother.

Later on, the neurologist also thought it might be helpful for Mother to visit a rehabilitation doctor. That doctor thought Mother might benefit from being in a rehab facility for a while. Although Mother was amenable to the idea, it seemed totally unrealistic to the rest of us, since Mother's condition was progressive and it wasn't clear that the rehab center was prepared to give Mother the level of care she now needed. Instead, we opted for more physical therapy at home, but as noted, the therapist thought it wouldn't help.

Shortly before going to the rehab doctor, Mother developed a visual problem. She had trouble seeing things in the left side of her field of vision. For example, if a glass of water was to the left of her plate, she wouldn't notice it. In the living room, Dad usually sat in a chair to the left of Mother's wheelchair, so she sometimes didn't know he was there. The rehab doctor confirmed the presence of the visual problem, but there was nothing she could do about it.

9. We Need Aides
11. The Wheelchair Ramp
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