Travels With Lewy: Hypnos, where art thou.

Sleep, I have read in different groups that it is, at times, hard to come by. I have always been able to fall asleep and get a good night’s rest until recently. In the beginning of my travels, my neurologist asked if I had bad dreams or trouble staying asleep. I did have trouble getting back to sleep so she ordered me some Seroquel to help me stay asleep. I must say it worked until recently. There were occasions when the amount that I was taking was increased but it has been running smoothly for 6 months now. Then the nightmares, night tremors and the wanting to run away came back. I didn’t know what to do. I had a Tele appointment yesterday with my Neuro and she added some more pills to my bed time. It worked last night. I was out like a light. I must say it felt good but how long does this stop on the Lewy train last??

An update from last week and the Parkinson tremors. They continue and I talked to the Dr about them. It seems that this means that I have slipped a notch. It is not a sign of continued slipping but just a notch. From all the groups that I have joined, I have seen many people who have continued Parkinson’s and are still quite active for years after the onset. I know we are all different and things can happen to me that do not happen to others and vice versa. But while I still can, I remain as positive as possible.

For all my Lewy friends that I have met and those I have yet to meet, please do not worry yourself into a dark space with this or anyone else’s account of their story. Your journey may be shake free. But that would be no fun as I start to do the twist if I am standing when the shakes get bad. The old story, if life gives you cherries, enjoy the pits.

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