When you wake up at 11pm and start writing a post about having a sleep problem, you know it’s serious.
For a very long time now—pretty much since being diagnosed with Parkinson’s—I’ve had a serious sleep problem. Until recently, it was just one of many issues on my list of priorities.
Thanks to the amazing (please G-d it continues) impact of the Produadopa (Vyalev) pump (you can read my other posts on the topic), my sleep problem now feels like the big elephant in the room.
The Sleep Problem
According to one study, 71% of PD patients report sleep disorders as a significant symptom. I’m definitely in that majority.
I generally have no issue falling asleep, but when I wake up, I’m completely wide awake (except for those rare times when I wake up for the bathroom and manage to fall back asleep). Usually, I’m 150% awake (not a mathematical estimate) and can’t get back to sleep.
Data
Let’s take the last month as an example, courtesy of my Garmin (which I know isn’t perfect).
- Nights Recorded: 27 (excluding Friday nights when I don’t wear the watch)
- No Data Nights: 13 (nights like tonight where I woke up at 11pm after going to bed a bit before 9pm)
- Average Sleep Duration (14 nights): 3h 52m
- Average Wake Time (14 nights): 2:55am
As a CPA, I estimate my actual sleep average, assuming an unlikely over-estimate for the non-recorded nights of 3 hours, to be around 3h 30m, with wake-up time around 1:30am.
Granted, I probably nap occasionally during the day, but not for hours on end except on Shabbat (Saturday). Saturday night usually becomes a washout.
Impact
It doesn’t take a genius to see this is a problem. My late neurologist said missing sleep and having a disrupted circadian rhythm are huge factors impacting the disease.
The truth is, I’m not sure I know the full impact. I guess all the obvious things associated with a lack of sleep, but it’s been so long that I don’t really remember what it was like before. Because I’m on a high amount of meds and do a lot of exercise (relative to before), I don’t know the ‘counterfactual,’ as politicians say.
Some people don’t need much sleep. I hear that, and day-to-day I don’t usually feel tired, but I do want more sleep. I don’t feel tired driving (at least not for the last year or so) and I function during the day.
(Not) A Joke
We laugh about it at home. On many occasions, I come downstairs at 11pm/12am/1am when the kids are still awake and announce, “Good morning.” It’s ridiculous, but we’ve gotten used to it. It impacts relationships—I’m asleep when everyone is awake and awake when everyone is asleep. I don’t get in the way, but it’s not ideal.
My work colleagues suffer from working with someone who by 9am has finished his day of work, processed lots of emails, and is anxious to move on to the next topic. My clients in the US have gotten used to me being on Eastern Standard Time.
Routine
I haven’t set an alarm clock at night for a very long time, except for early flights, and I usually wake before the alarm. One time, I was ill in Athens and, thanks to a lot of cold meds, I slept for 9 hours. I’ve tried to repeat it, but no luck.
I’ve had to establish a routine. I write, work, follow the news, and fit in 45-60 minutes of walking/running and a yoga routine. It’s peaceful and productive, but not ideal.
Counter-Measures
I assume you’re thinking, “He needs to do x, y, z.” I’ve tried:
- Basic Google advice: Turning off my phone, room temperature, hot baths, pillow and bed comfort, ear plugs, etc.
- Sleep CBT: Looked promising but didn’t help. Tried going to bed later to force a cycle change, but often couldn’t fall asleep at all.
- Pills: Both prescribed (e.g., Clonex, Miro) and natural (e.g., Melatonin), plus many others you can think of.
- Cannabis Oil
- Alcohol
- Mixtures of the above
- Therapy for anxiety
A sleep neurologist specialist reviewed my case and said it’s related to PD and I’m doing what she recommends. She looked at all my notes, treatments, and basically said there’s nothing more she could suggest.
Not Giving Up
Today, I spoke to a tech company working on sleep for PD and I’m doing research. With other symptoms improving thanks to the pump, I have more bandwidth to tackle this issue. Hopefully, I’ll crack it and find 1-2 extra hours of sleep as a first step.
I’m partly writing this blog to motivate myself—making this a battleground and hopefully sharing good news soon.
Conclusion
PD is a complex, multi-dimensional disease. Its impact on the basics is important to understand, fight, and for science to address.
It’s now 1:49am, I’m completely awake, and on to my work actions and then exercise. Good morning all!
