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When Life Gives You Parkinson’s: The Search for Sleep — A Virgin Voyage with Cannabis Oil

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One of the more common symptoms for people with Parkinson’s is trouble sleeping. Some of us can’t get to sleep, some can’t stay asleep, while others are awaken by tremors, painful dystonia cramping or realistic nightmares.

I can’t stay asleep.

My sleeping journal is more of an awakening journal. One day it reads “up at 3a,” the next “up at 1a,” followed by “up at 3a, up at 3:30a, and up at 4:20a.”

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I’ve tried Melatonin, Magnesium Glycinate, light therapy, aromatherapy, silence, music, meditation, reading, more Levodopa, later bedtimes, earlier bedtimes and the list goes on.

Sleep is important for everyone. When you don’t get enough sleep you are less productive, less attentive, less present, less creative, less active, less everything it seems except tired. WebMD suggests it also puts you at “greater risk for depression, heart attack, stroke, high blood pressure, diabetes and death.” I know you’re not supposed to believe everything you read on the internet, but it’s WebMD, right?

I’m also told by researchers that sleep is the time your brain needs to redistribute chemicals into all of its nooks and crannies and for your mind and body to assimilate after each day’s journey. (Both points seem especially relevant when you have a degenerative brain disease which is triggered by the lack of production of the brain chemical dopamine.) One of my doctors suggested if I don’t get regular REM sleep, I am increasing my risk of a mental meltdown. Needless to say, sleep is an issue that I must address.

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My neurologist suggested Mirtazapine, an antidepressant that is also apparently a good sedative. It also causes an increased appetite and weight gain. Neither of which I need right now. I suggested an alternative.

As Canada legalizes cannabis, I asked, “What about CBD Oil?” For transparency, I’m not a cannabis enthusiast. I have used it before, I inhaled, and I liked it well enough. But, I never smoked regularly and have not recently.

My neurologist didn’t discourage me and suggested it wouldn’t hurt to try, but it is trial and error.

I did some homework. In discussions with users and by reading about Cannabidioil or CBD, there are a few things I learned.

CBD is hit and miss. Some in the Parkinson’s community swear by it and others who’ve tried it never found it to be effective. I’ve heard from several sources it’s a 50/50 proposition.

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There is no prescription. How much to take, when to take it and how to take it are up to you to discover and debate. It’s fairly intimidating. Some days I feel like I couldn’t make ramen without the instructions on the package. I brought this up to Barinder Rasode, the founder of the National Institute for Cannabis Health and Education. She agreed with me, “I share your frustration about no knowing how much or what type of cannabis to take.” She had to do trial and error when figuring out her own regiment of CBD for her sleeping issues.

Rasode is bullish on cannabis as it relates to treating symptoms of Parkinson’s disease. “It reduces both the tremors and some researchers think it actually saves the neurons from further damage caused by Parkinson’s.” She admits those findings are anecdotal at this point, but is hopeful for more scientific trials in the wake of legalization.

The truth is there has been little research on cannabis and Parkinson’s. So, not much is actually known. However, one trusted medical professional shared with me that while it is very likely CBD will make me drowsy, it is less likely to support and promote a regular sleep cycle.

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What the heck. I’ll give it a try.

Let the adventures into the world of cannabis begin. Sweet dreams? I hope.

We did asked our partners at Parkinson’s Canada for their official position on cannabis:

“To-date, it has not been conclusively demonstrated by science based evaluation that marijuana can directly benefit people with Parkinson’s disease. There is a need for larger, controlled studies to better understand the efficacy of medical use of marijuana for Parkinson’s. If you are considering medical use of marijuana for Parkinson’s, we recommend you consult with your health care professional to carefully weigh potential risks and/or benefits for your individual situation. We will continue to monitor the topic of marijuana for medical purposes and will update our resources as new information becomes available.”

Parkinson Canada offers this resource for people with Parkinson’s who have sleep issues.

 Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

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Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to my wife Rebecca Gifford and our son Henry.

Thank you to the founder of National Institute for Cannabis Health and Education, Barinder Rasode. Follow her on twitter @BarinderRasode. For more information on NICHE Canada try: https://www.nichecanada.com/ and here is a link to the Parkinson’s Foundation Center of Excellence research on Parkinson’s and Marijuana http://parkinson.org/Understanding-Parkinsons/Treatment/Medical-Marijuana

For more info on our partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline mentioned in this episode is 1-800-565-3000

Or follow them on Twitter

Parkinson Canada            @ParkinsonCanada

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Parkinson Society BC      @ParkinsonsBC

Credits

Dila Velazquez – Story Producer

Rob Johnston – Senior Audio Producer

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