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, July 11, 2008

Sleep Doctor

John had an appointment with the sleep doctor today. A year and a half ago I got John to go to this sleep doctor and he had a sleep study which showed very mild sleep apnea, not serious enough to treat. The doctor wanted to do another sleep study in a year, but this visit was more motivated by the Parkinson's specialist we saw in April, who wanted John off the Imiprimine he has taken for sleep for many years because it makes the REM Sleep Behavior Disorder worse. John has always had trouble sleeping, and the combination of Clonidine and Imiprimine is the first solution that has worked for him long term. The sleep doctor wanted a new sleep study before changing the medication and that can't be scheduled until early September. He said he would then try John on Klonopin and assured John that that would help him get to sleep.

With the specialist in April, John said he was willing to try to change his terrible sleep patterns, but now he has decided he is too set in his ways. He falls asleep in a chair around midnight watching TV or reading or using his computer and doesn't come to bed until sometime between 3 and 5 am. He also drinks a half a bottle of wine about three nights a week, starting about 10 pm. I hadn't expected him to change his ways--my thought instead is to get him a really comfortable recliner so that he sleeps in his chair in a more comfortable position. The wine is clearly problematic but it is his major hobby so he isn't going to give it up. He drinks late rather than with dinner because I don't drink and am somewhat uncomfortable when he does (I think it makes him less aware of other people's needs and feelings). If the doctor had pushed the point I might have volunteered that John should have his wine with dinner instead, though I wouldn't have liked that. The sleep doctor did raise the issue of alcohol disrupting sleep but he backed off when John asserted that he doesn't see any difference in his sleep between nights when he drinks and when he doesn't.

We see the Parkinson's specialist at the end of July so there will be chance to run this all by him before making any changes. I don't have strong feelings about what needs to happen. Because of the REM Sleep Behavior Disorder I'm just as glad not to overlap in the bed very much with John (I get up at 5 am to swim two days a week, between 6 and 6:30 other days). When John does wake me up crying out and thrashing in his sleep I just move to another room.

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