Adapting to new roles and key issues for spouses


Parkinsonians have great difficulty sleeping. So very often they’re up and down all night long. And this was happening at a time when we were both sharing our bed and sharing a room of course. And then violent dreams started happening. Parkinsonians act out their dreams, whereas you and I in REM sleep are pretty well paralysed—we’re only moving our eyes and we can hear, whereas a Parkinsonian can act out their violent dreams. So you saw him, he’s a big man, and he got very punchy and kicked me, and one time he got up on one elbow and just gave me a black eye, and that was the end of our sleeping together, because he scared me. It really was, and he was devastated of course, and it’s just these dreams they act out their dreams. And I had been told about that and I had been, I had read about that. We had been to many Parkinson conferences where that was brought up, but I never believed it would happen to me you see. 

So we had to go with separate rooms, but it is important because you have to have your sleep. And so far, he gets up by himself and he gets in a scooter and he comes out and he sits in his chair and watches TV and dozes and he can manage that so far. Some nights I wake up and I hear him and I think he’s in a bit of distress and I get up and peak at him and see if he’s okay, but for the most part I do have my bedroom and my night to myself.

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