[Charles H Levin]

As someone pointed out early in the thread, I believe you mean Indica. I take a gummy as part of an evening cocktail, which includes the gummy (Camino Sours, 10mg THC, 10mg CBN), two 10mg melatonin pills and two 25mg Seroquel pills. Marijuana is legal in NY and CA (I split my life between both coasts). After a rough time last year with sleep disruption, this has finally helped, big time.

As I understand it, the melatonin and gummy help you fall asleep; the Seroquel (aka Quetiapine) helps keep you asleep. I still get up to use the bathroom, but rarely have trouble falling asleep again.

Best of all, with a solid seven to eight hours of sleep, my symptoms are much more manageable. Before I found the Seroquel, I was getting five to six hours of sleep a night. This stressed my body and brain, leaving me exhausted and often feeling like my meds were wearing off a few hours early. Now the transitions between my meds (three times a day) feel seamless.

[Charles H Levin]

A year ago, sleep disruption became a very big problem. Initially I tried melatonin (at my doc’s suggestion) and THC/CBN gummies (my idea). But after a while, it just continued to worsen.

Finally, by August, I was at wit’s end, often getting less than six hours a night. This badly stressed my body, which aggravated my symptoms. It often felt like my meds were wearing off a few hours early.

I asked my doc for meds. First we tried Trazadone, which did not help. But then we tried Quetiapine (aka Seroquel), and it’s working quite well. I still take the melatonin and gummie (the latter is 10mg THC and 10mg CBN).

Now I’m sleeping 7.5 to eight hours a night without a problem. I still get up to use the bathroom but rarely have any trouble falling asleep again.

Better still, my symptoms are fine and my motor disorder score dropped by five points, which is quite dramatic.

[Charles H Levin]

Plenty of water, about six to eight cups a day (coffee or tea are fine). At least two large glasses with Metamucil, one in the morning, the second around dinner time … Over the counter stool softener (Kirkland band version of Colace, 400 capsules for $6.50) … Also, high-fiber diet with almost no cheese and no red meat or processed or fried food … With rare exception, this keeps me regular …

[Charles H Levin]

I drink a lot of water (sometimes tea and/or coffee) … at least six cups a day and two (one morning, one early eve) are with Metamucil. Recently I added a generic version of Colace that I take at bedtime. I use Kirkland (Costco) brand, which is the same dose and very inexpensive … about 400 capsules for $6.50 … I’m regular every morning.

[Charles H Levin]

So sorry to hear about your sister … My understanding of stem cell treatments is that they’re not yet approved by the FDA, and while these providers’ offices are located in the US, the treatments are done outside the border … I looked into one that’s championed by actor Ed Begley Jr. It was done in Tijuana and cost $12K. They made it clear that while it might relieve symptoms, it was not a cure.

Re: Mannitol … Totally bogus … If people think they’re symptoms have cleared up, it’s due to Placebo Effect, that is, the deep-seeded belief that the treatment will help, thus causing the brain to release dopamine … which obviously will bring some symptomatic relief … Also, the one clinical trial I followed with Mannitol in Israel, showed no helpful impact …

To piggyback on a previous comment, supplements are not regulated by FDA, so there’s no way to know what you’re getting without consulting your doctor … there are some that are helpful … talk to your neurologist …

cl

[Charles H Levin]

Yes … My maternal uncle had PD and he had the LRRK-2 genetic mutation … I also have it … his daughter (my cousin) also had LRRK-2 as does her daughter but neither have PD … her son does not carry the gene …

A cousin on my father’s side also has PD, but we don’t know if she’s carrying the genetic mutation …

[Charles H Levin]

I take a little less than a teaspoon at night in some water before I turn in. I wasn’t aware of it helping with PD … My primary said it would help with sleep, which has been difficult at times. Where did you hear about the relationship to PD? Gotta link?

Thanks …

[Charles H Levin]

I was diagnosed five years ago this June … Initially, sleep wasn’t much of a problem. I slept six hours and felt fine. (I’ve used a CPAP since 2005, long before my PD diagnosis.) My doc urged me to get seven. Over time, at my doc’s recommendation, I added 10mg of melatonin. Eventually I got to seven and even 7.5 and eight once in a while. That seemed to help but it wasn’t consistent.

Now I’m in a pretty rough cycle. I get up to pee and get back to sleep OK. But after the second visit to the bathroom, I’m often up for two hours (or for good). Naps help, but this is really disrupting my life. I’ve since added THC gummy (10mg THC/5mg CBD or CBN) and some Taurine. Seemed to help briefly but not really making a difference anymore.

I go to bed around 10-ish and lights out by 11 with plans to take my first c/l at 6 a.m. I never have trouble falling asleep (it’s never been a problem).

A few people mentioned Trazadone. Anyone having side effects?

Anyone trying Ambien or Xanax (or both as a cocktail)?

I’d also like to hear from anyone who’s tried L-Theanine, which my wife just found on the National Sleep Foundation web site … https://www.sleepfoundation.org/sleep-aids/l-theanine-for-sleep

For now, I’m managing my other symptoms pretty well. I get plenty of high-intensity exercise (stationary bike, boxing) as well as dancing, tai chi. I rarely drink alcohol and make sure it’s not too close to bedtime if I do. Diet is mostly vegetarian and fish with occasional poultry and red meat (latter, while rare for me, is getting even less frequent as it worsens my constipation).

Editorial note: I tried Mannitol for a few months. It made me very gassy, and while I thought it was helping, ultimately, I found it didn’t. Further research and talks with my doc led me to realize it’s likely a Placebo Effect. A small-sample clinical study in Israel showed no positive results.

sleepfoundation.org

L-Theanine for Sleep

Are you curious about L-theanine for sleep? Learn about potential health benefits and side effects of L-theanine and where you can find it.

[Charles H Levin]

Yes. I had Covid about a month ago. It was like a mild cold. Doc put me on Paxlovid and I was symptom free in about five days. A few days later, I had a rebound (somewhat common with this med), but it only lasted a few days. One more very short rebound again and then a lingering cough for another week or so.

But it did seem like my tremor was a bit more active for a few weeks and has since been calming down.

My doc said this is not uncommon when you stress you body, like with exercise or even a common cold. I always notice that when I get off the stationary bike, my tremor is a lot more active but returns to normal shortly after.

[Charles H Levin]

I haven’t read either of those titles … But I will recommend Brain Storms by Jon Palfreman, which I read a few years ago … and I’m now reading Ending Parkinson’s: A Prescription for Action by Ray Dorsey, Todd Scherer, Michael Okun and Bastiaan Bloem, which so far is excellent …

[Charles H Levin]

This appears to be a drug used for people with addictions to opiates and alcohol. How is it being used for people with PD? Are docs prescribing this?

https://www.webmd.com/drugs/2/drug-7399/naltrexone-oral/details

https://www.samhsa.gov/medications-substance-use-disorders/medications-counseling-related-conditions/naltrexone

webmd.com

naltrexone oral: Uses, Side Effects, Interactions, Pictures, Warnings & Dosing - WebMD

Find patient medical information for naltrexone oral on WebMD including its uses, side effects and safety, interactions, pictures, warnings and user ratings.

[Charles H Levin]

I began Sinemet about two years ago, 25/100, one pill, three times daily … In March, I discussed dosage change with my doc … I was starting to have a mild off episode after about 4.5 hours … so he left the decision of adjusting the dosage to me … I eventually settled on 1.5 pills, three times a day. Working fine. I have never had any side effects from the drug, either the initial dose or the revised one … I can’t say I understand why, but, obviously, I’m glad this is the case …

Thanks for the book recommendation … I plan on buying it …

cl

[Charles H Levin]

We just finished watching the first season of Shrinking on Apple TV+, starting Jason Segel and Harrison Ford on Hulu … Hysterical … and Ford plays a character with Parkinson’s … the depiction is fairly respectful and realistic ….

[Charles H Levin]

I play Wordle every day (occasionally Spelling Bee), read a lot (newspapers, books, magazines) and am a passionate amateur fine art photographer. The latter involves several software applications (Photoshop, Lightroom and others) that are challenging to learn and apply to images.

Besides that, I’ve always been an exercise person and more so now: cardio on a stationary bike four days a week; weights and straps, three days a week; yoga and meditation daily; and soon adding pickleball.

[Charles H Levin]

As you can see from the first post, the Today Show (NBC) has picked up the story. Beyond that no other major outlets like NPR, PBS, NY Times, WaPo, WSJ have yet to follow. Yes, this does look incredibly promising.

Krukar … Do you have a link for the trial? And must you live in the Bay Area to participate? Lastly, what level of symptoms are they recruiting from? Advanced? Unable to walk?

 

[Charles H Levin]

This may be worth investigating more. But this study was published in 2008. Why have we not heard more about it since then? That raises some serious red flags for me.

[Charles H Levin]

Interesting … I’m not having that issue … I do about 35-40 mins on my elliptical, 30 of those minutes at 80-85 percent of my max heart rate … I monitor with an Apple Watch …

What I have noticed after my workout is that my tremor is more pronounced and I can barely type for about 30 minutes… which is frustrating …

I get fatigued on occasion, but it always seems to be on days when I didn’t get enough sleep … In general, my energy is still great and I plan on hiking the west coast of Ireland in August …

My case is a rather odd one … I developed an action tremor (diagnosed as Essential Tremor) in 2007 … It didn’t change until early 2019, when it was clearly a resting tremor … I was also developing some slowness for about six months before that (bradykinesia) but, like so many parkies, I had no idea what was happening until my diagnosis in June 2019 …

My docs call it benign tremulous parkinsonism … the word “benign” is a bit misleading … it means it’s moving at an “exceedingly slow pace” … How rare or frequent this is depends on the doc you’re talking to …

Thanks, Daniel Novak, for mentioning that book … I will check it out … BTW: I just finished Jon Palfreman’s “Brain Storms,” which was very good …

[Charles H Levin]

I meditate nearly every day. I’ve been doing it for 11 years, which is eight years before my official diagnosis (docs have credibly shown that my PD symptoms started in 2007 or earlier; it’s complicated) ….

As for PD, I suspect that meditation helps to lower stress. Meditation is widely recognized in the healthcare community as beneficial. All my docs endorse it.

If you are skeptical of meditation, read “Ten Percent Happier” by Dan Harris, an ABC news correspondent and anchor. The book is a memoir of his journey to discovering the benefits of meditation and becoming one its biggest proselytizers. It’s written in plain English, laced with lots of humor and never devolves into a lot of New Age silly speak.

 

[Charles H Levin]

I agree with most of these posts …

Cardio … 4x a week … I use an elliptical and go 30 continuous minutes at 80-85 percent of my max heart rate … I monitor it with an Apple Watch … my doc (head of dept. at Cedars in LA) stressed this and hitting those numbers …

Strength … 3x a week about 30 minutes … combination of TRX and dumbbells

Flexibility … Yoga, 20-30 minutes every day …

I also do Neuro-boxing 3x a week … developed by Jennifer Parkinson, a nurse who got hit with early onset at roughly 32 … she studied the Rock Steady program and developed her own that can be tailored to people with stroke, TBIs or MS or other neurodegenerative disorders … I believe U. of Indiana Med School has compiled a lot of good and supportive data on Rock Steady …

Dancing … my girlfriend is a longtime pro dancer and we do salsa lessons intermittently … lots of studies showing the benefits for PD of these kinds of movement studies (dance, tai chi, etc.) …

 

[Charles H Levin]

Here’s an update on Mannitol … I stopped taking it after four or five months when I noticed that there was really little to no change in the long run … It also made me horribly gassy … My doctor explained to me that whatever positive effect I thought I experienced was likely placebo effect … Just my experience … can’t speak for others …

[Charles H Levin]

Who is the author? Is this a book about PD?

[Charles H Levin]

Written by my doc … Michele Tagliati … at Cedars Sinai in LA … I have yet to read it, but it’s on my list

[Charles H Levin]

Hector … Where are you buying THC syrup? I’ve been trying CBD gummies (300 mg) to help me sleep a full night, but it doesn’t appear to help …

[Charles H Levin]

Thanks, Krukar …