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Finding a Path Past Parkinson's - #1 Sleep!

Updated: Aug 11, 2023

Sleep - it’s been a discount/ignore kind of relationship for most of my life.


From early childhood, going to bed felt like a punishment, one that I knew I could escape once I was older. And escape I did, as soon as possible. Homework, television reruns, multi-hour phone calls, all took precedence. Then studies, parties, bar time. Then babies and chores and a never ending avalanche of tasks and deadlines.


Now I’m 55 and most of those reasons have gone away. The avalanche of tasks and deadlines have not - they have a permanent residence in my brain, and often goad me into late night projects. This, along with the cherished discussions that go until the wee hours, when my kids come to visit and have the time, and of course, the occasional tv series that grabs me and holds me captive for a week here and there. (Manifest and Ted Lasso are my latest.) Sleep still is not the priority.

Add to this the fact that, even if I manage to go to bed at a reasonable hour, I have trouble falling asleep. I would often be plagued with Parky symptoms because my meds were used up for the day. Once I was able to drift off, I would have to get up to pee once or twice and my mind would take off on its own at that point. Get past all that, and my body will usually not stay still for much longer than 6 1/2 hours anyway. My ribs start to ache and my mind continues to think.

I definitely feel better with more sleep, but it is a great effort to make it happen.


Add to that the fun fact that some of the medications for PD can cause nightmares with lashing out or yelling or somehow overcoming the coma-like state that is supposed to accompany the dream state. I have many more nightmares than I used to.


Reading about all of the restorative things that happen during sleep, - (see All the body Does During Sleep posted earlier in this space) particularly the brain detox - especially important with a neurological disorder. The system is called the glymphatic system, and is a "clearance pathway for your central nervous system. The lymphatic system clears the toxins form the body, and the glymphatic system clears away toxins from the brain." [Parkinson's Protocol by Jodi Knapp] [Additional corroboration by Harvard Health Dr. Anthony Kamaroff, MD* among others.] - Deep sleep, REM stage, is needed for this to occur. About 1 1/2 hours after you fall asleep and lasts 10 minutes, gaining more time during each cycle as the night progresses. The concept brings home the importance of paying attention, once again, fighting the anti-sleep bias and doing what I can do to foster longer stretches of sleep.


And so I tweaked just a few things -


I started taking my 4th controlled release Carbo/Levo right before going to sleep. This keeps a stable amount in my system throughout each 24 period and allows me to go to bed with enough dopamine so that getting comfortable and turning over in bed aren’t impossible. I also started taking my controlled release Ropinorole right before going to sleep. This helps take care of any dyskinesia that want to spring up on me. Both of these were approved by my doctor and help me fall asleep. (Know that I am not a doctor, and am not prescribing anything - just sharing my experience. Please do your own research and consult your doctor before making any changes to your medication regimen.)


The nightmares I have not tried to work on yet. The urinating - though drinking water is very important and I never get enough, I have tried to stop drinking much after dinner. This has helped. I’m thinking sleep is more important than hydration - though not by much. Also, the more active I am in a day, the better sleep I get at night.


It seems very sensible to say that detoxing the brain allows the brain to work better, for it to practice it's healing on itself. To help slow the progression of PD. That's why I put this at Planning Point #1!!!


To Ease In2 more sleep time - Small steps. Join me?

1. I pledge to start turning the tv off at 10:00, and not getting on my phone or my computer - unplugging. This will help my mind slow down a bit also.

2. I pledge to not drink much after 8:30pm

3. I pledge to go back to bed when I wake up prior to 6:30, even if I have to sit propped up - just to see if I'm able to fall asleep again.


*Excerpt from health.harvard.edu

Q. I've heard that toxins are flushed out of the brain during sleep. Is that true?

A. One of the most interesting discoveries in the past decade is that the brain has a "waste management system." Like people, in order to have the energy to do their work, brain cells need to eat (to absorb, primarily, sugar and oxygen). And, as in people, meals lead to wastes that need to be disposed of. The waste management system (called the glymphatic system) is a series of tubes that carry fresh fluid into the brain, mix the fresh fluid with the waste-filled fluid that surrounds the brain cells, and then flush the mix out of the brain and into the blood. This occurs primarily during deep sleep.

There is some evidence that an under-functioning waste management system may play a role in the neurodegeneration that follows traumatic brain injury (as experienced by some football players, for example). It may even play a role in other brain disorders, including Alzheimer's disease. Since chronic sleep deprivation increases the risk for various brain diseases, it is plausible that it does so by reducing the function of the waste management system.



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