Parkinson’s dreams. As in the ones we Parkinsonians act out. Like when I dreamt I was playing basketball, and found myself standing on my bed and leaping onto the floor as I reached for the ball. Or the one where I was again standing on my bed and diving into the swimming pool in my dream, which translated into diving onto the floor in real life, laughing hysterically as I landed. WTF?

Most of my friends complain (a lot!) about sleep issues, i.e. not enough.  Never enough. They try everything and just can’t sleep as much as they’d like, or feel they need to. 

The Facebook Parkinson’s groups are filled with sleep laments – too much or too little. I’m in the former category. Rod Serling might intone: “In a world where up is down, daytime is sometimes night, and sleeping like a baby means a 70-year-old turns into an infant, sleep becomes an impossible objective, as elusive as the snow leopard or Bigfoot. The harder the insomniac tries, the more unattainable sleep becomes. Enter the world of Parkinsonian slumber, also known as The Twilight Zone.” (Literally.)

I’ve had the usual, non-Parkinson’s sleep issues for years, mainly trouble falling asleep. I’d toss and turn for hours, sometimes trying to read myself to sleep, or playing games in my head like remembering every child alphabetically in my elementary school or camp. It sorta kinda worked sometimes. I was actually doing a bit better pre-Parkinson’s diagnosis with the help of a sleep specialist who happens to be my therapist. Here are his directives:

1. Decide what time you want to wake and how many hours of sleep you need every night.
2. Say you want to awaken at 7:00 a.m. and get 8 hours of sleep a night. Count backwards eight hours from 7:00 a.m., which means you go to bed at 11:00 p.m. EVERY SINGLE NIGHT. And awaken at the same time EVERY SINGLE MORNING.
3. No phone or computer screens for an hour or two before lights out. (TV is okay if you’re not right on top of it.) If it takes you more than 20 minutes to fall asleep (or fall back to sleep if you wake up in the middle of the night), get up. Go into another room and read, listen to music, or watch tv. When you feel tired, try again to sleep. Lather, rinse, repeat.

Here’s my current rather bizarre sleep schedule:

7:00 a.m.   Wake up.  Turn on phone, play Spelling Bee and crossword  puzzles in New York Times, Wordle in English, French. and sometimes Italian and Spanish.  

8:00 a.m. Take meds, which include two pills of the sedating pramipexol. Continue puzzles.

8:30 a.m. Back to sleep for first nap of the day, Or is it just a continuation of my night’s sleep broken up by the aforementioned puzzle interlude?

10:00 a.m. Re-awaken after Nap #1.

10:00 a.m. – 3:00 p.m. Go about my business.

3:00 or 4:00 p.m. Nap #2

5:00 p.m.  Re-awaken.

5:00 p.m. – 11:00 pm.   Live my life.

11:00 p.m. –  12:00 a.m.   Back to sleep.

This doesn’t feel right. I don’t like it. Sometimes I forego the morning nap. I’m pretty energized those mornings, but then I’m exhausted in the afternoon.

Sadly, I find I can only engage comfortably in one or two activities a day. If I go to the supermarket in the morning, forget about dinner with a friend at night. That’s a bit of an exaggeration but you get the drift.

This limitation is perhaps my greatest loss – the reduction of time to just plain LIVE.

In a support group posting, advocating for getting past the fatigue, Gaylord-Tanya Diedrich says, “I literally tell myself “you can be less tired on the couch or tired on the go…seriously….choose go.”

I’m working on finding the self-discipline to just get the hell up and GO.

Some entertainment for the week:

Workin’ Moms. Those fun Canadians are at it again (see Dan Levy/Schitt’s Creek post from last week), with an amusing take on the challenges of parenting while working.

Starstruck, in which an average but very disarming woman inadvertently gets mixed up with a movie star. Romance and charm ensue.

Hacks, starring the indispensable Jean Smart as a past-her-prime comic who enlists the assistance of a down-on-her-luck young writer (Hannah Einbinder) to help her get back on top.

See you next week!

Andi