[Andrew L.]

OK will chime in…Bike 20 miles 3x per week on lifecycle. Takes me about 75 minutes and I do cognitive exercises at same time (when indoors obviously) utilizing ALZ life program on I pad (my own clinical trial, so to speak). Have gotten really good at Sudoku , haha.  Take the cycling outdoors with the sunrise on the weekends (afraid of COVID and traffic other times.)Was biking every day at high resistance indoors for awhile but pain in hips too much, so had to lower resistance.  Do 100 pushups/ day 5 days per week. Just started ab workouts every day for 10 min with you tube video popular with my kids (Chloe someone). Do PD warrior work outs (also out of Australia) about 45 min 2-3x per week  (mostly big moves, agility and balancing stuff with a little cognitive thrown in). Box 3 or more times per week for about 45-60 minutes a shot. Have a great Rock steady instructor, classes are virtual if anyone interested. Lift free weights a few times per week (nothing major) and do a gentle yoga program for 30 min about 4x per week usually at night. Prior to COVID was playing tennis (played most of my life) and pickleball, hope disease stays relatively stable so can return to it one day (hope/praying/working hard to keep balance  stable). My neurologist thought I was overdoing it and told me to cut back to (2) one hour  exercise sessions twice a day, but probably do closer to 3 hours per day on average.

[Andrew L.]

I have also been told that to get a similar effect with CBD one would have to take up to 50x or more CBD than is normally “prescribed” and this is associated with liver toxicity. Stated differently , to get the same beneficial effects using CBD versus micro dosed THC, one would have to take a toxic dose.

[Andrew L.]

Mary- Here is the deal as I see it today (am always learning) after much consultation with respected physicians in the field…THC is not a placebo unlike CBD. Taken in relative “microdoses” (the only way to do this scientifically is with capsules, otherwise the actual ingested dose is guesswork, particularly if smoked), it does decrease anxiety, causes some pain relief (prob not as much as advil but noted nonetheless), and helps with sleep. It is also a mild appetite stimulant. Only other “side effect” is feeling of mild euphoria, which prob gives it addiction potential; however this is certainly better (imo) than Parkinson’s depression/anxiety.  Sativa vs. indica prob not an issue at microdoses. Some neurologists be concerned with longer term cognitive impairment, however  studies don’t support this and  I don’t think this is a long term problem with the proper dosing . As with any medicine, risks must be weighed versus benefits for each patient. Thus not for everyone, and definitively needs to be done under competent physician supervision. Disclaimer: None of this is medical advice, just sharing what I know.

[Andrew L.]

I believe CBD is a placebo unless taken at extremely high and potentially toxic doses. It doesn’t bind to the receptors of the endocannabinoid system. It has been speculated that it may boost your body’s endocannabinoid production, but I don’t buy it. Any non-placebo effects of CBD are mainly from the THC in the oil.

[Andrew L.]

Was also very excited by the study, but “years” is a bit depressing. I guess there are different stages of clinical trials, and it has to go through at least 4 before being approved.Maybe they can fast track it….

[Andrew L.]

Hi all: Will stick my two cents in …

I totally understand the strong desire to avoid pharmaceutical dopamine replacement for PD  (I think this is part of the “denial” stage we all go through), but the medical studies do not support this as an effective form of treatment. It has been said you won’t die from Parkinson’s but with it. Dopamine replacement therapy is what allows us the ability to live the healthy lifestyle we need so we can still be productive and don’t die or get debilitated from something else before our time. By taking the meds, many of  us can effectively live productive lives, including doing things like exercise, which is necessary to maintain a normal cardiovascular system, bone density, better sleep ,mood, cognition etc. etc. By not taking the meds,  I am of the opinion that we are effectively diminishing the quality of our lives as well as diminishing our overall health and well being and ultimately our lifespan, because of the things we can’t or won’t do when we are chronically dopamine depleted. I think it is important for us collectively not to be our own doctors, but to seek out qualified medical opinions before acting on alternative treatments, so we DO NO HARM to ourselves.

[Andrew L.]

Thanks for sharing that Bob! Plan to  get another scientific opinion on this…

[Andrew L.]

Meant to say latter two, not to. Now off to virtual boxing class, haha.

[Andrew L.]

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[Andrew L.]

For the record, I have been on Lion’s Mane, Magnesium, probiotics and many other supplements I researched and am on a strict diet since diagnosed a few years ago. I exercise like a maniac (for me), and am on an uber healthy diet. As a result,  I am actually in the best overall physical shape of my adult life, and my labs have never looked better (except for the low uric acid.) Am on relatively small dose of  Carbi/Levo, but need it around the clock.  Have been doing the intensive light/sound therapy for about a year now, and hour a day. If anyone is interested , I can tell you how to go about it.  Do it while on lifecycle and doing cognitive work , all simultaneously. Feel it has helped my cognition.  Have been on drugs initially thought to be neuroprotective (there are none), but in the end had failed studies. Azilect, selegiline, isradipine. Now on latter to, isradipine very low dose. Feel I have one of the best docs in the world when it comes to research and knowledge, and he calls a lot of these pseudo scientific cures “medical tourism:.  And yet, with all that…feel disease is slowly progressing, and I certainly can’t function without the dopamine. It is what it is, taking it one day at a time. I guess we all progress at different rates, and I agree with comment above, if there was a silver bullet we already would be on it.

[Andrew L.]

Dopamine boost directly into brain via inactivated virus. Immune modulated response attacking harmful brain protein accumulation. Effects of light and sound therapy on brain. Not exactly excited (more interested) but trying to stay positive.

[Andrew L.]

I tried. Didn’t work. All of those things help and are worthwhile and even necessary adjuncts For a lot of reasons. but in the end it depends how much dopamine ur brain is producing. Over time the brain produces less not more so when the critical mass is reached  then we need some form of dopamine to replace what is lost. there really is no way around it other than dopamine or dbs barring s major scientific breakthrough. I hope U r the exception…Good luck!

[Andrew L.]

Alan: Glad this has helped you. I have also used 10 mg in the day, but do better with 20mg as an anxietolytic dosage, mainly at night. ( I get trying to keep your dose a low as possible, but unaware of any side effects at higher dosage.) I used to think that any THC was a bad thing, because the last thing I wanted was the jittery and paranoid feeling of being high that I had in my youth (sometime in the middle of the last century when I went to college.) But my thinking has evolved as there are many beneficial effects in the whole flower not only from THC but from the terpines and other compounds which all somehow work collectively in the so called “entourage effect”. And I never really feel high from the amount I ingest (indica dominant when THC is involved), just better…. At any rate I guess it is all trial and error for all of us, glad we have this forum to discuss it…

[Andrew L.]

The short answer is yes. The benzos hang out in ur body and are cumulative. The half life of clonazepam, which seems to be the drug the neuro guys like for PD, is something like 40 hours, which means every time you take it half is still in your body up to 2 days later! (note: others are shorter but are still quite long.) The THC I am ingesting can be considered microdosing. The 3 puffs are very small, just enough to turn the light of the disposable vape pen on for a fraction of a second, it is a minimal inhalation, and I don’t visibly blow smoke out. I never get high, 4 hours later maybe mildly groggy but it goes away , esp with physical activity. Note: As noted above, I have also microdosed the drops sublingually, which seem to hang around a bit longer, more like 6-8 hours. Add that to the delayed onset using drops and I don’t like it as much as the inhalation. Note: I am asthmatic, so also have to be careful. Finally, it is my opinion (solely anecdotal based on a small sample size) that most neurologists no little to nothing about cannabis, esp in states where it has been recently legalized or remains illegal. I also forgot to say that I take a dose of carbidopa/levodopa ( 25:100) in the middle of the night as well (by itself not enough to put me back to sleep.) Finally, I tried timed release carbidopa:levodopa, didn’t work well for me at all. Again this is obviously just what has worked for me, not giving medical advice or suggesting what others do.

[Andrew L.]

Just thought I would add that I am not a fan of the benzodiazepines because of tolerance (need more and more for same effect over time), plus addiction potential (probably the least of our worries with PD but nonetheless a problem.) Plus I don’t like them in my body during the day (most have very long half lives) as I think exercise is a critical part of treatment for PD, and I want to have the energy for big workouts and not feel lethargic. Just one man’s opinion fwiw.

[Andrew L.]

Hello: Have been experimenting with medical cannabis for anxiety and sleep for the better part of a year now. I find that all of the different dispensary’s in my town in Florida have slightly different products. Have started using 12.5:1 CBD to THC. The dose for anxiety is 20mg (for most concentrations this is one full dropper) sublingual. I like this best in the evening before going out or just for chilling a few hours before bed. Definitely helpful so I am somewhat relaxed when I hit the hay. I have also been struggling mightily with sleep but for the first time in eons think I may have found a solution (for me) as I have now had 3 of the best sleeps I have had in several years after getting this horrible diagnosis. Note: I have tried benzodiazepines, melatonin, antidepressants, exercise, meditation and massage all with little to no avail. So what I do is CBD as above a few hours before bed time, shut lights around 11 PM, and then when I wake at 2 am (which is always) I vape pure indica based THC. Because I can’t tolerate big “hits” due to a sensitive airway, I take 3 small puffs…have done this 3x now and the result is I have slept 4-5 solid hours more. Wonder drug if this continues! AM tempted to praise the almighty. (before trying this I would sleep from 12-2am and maybe 5-6am on average.) Don’t get high or feel euphoric, just relaxed and sleepy. Like a normal person! And the next day I feel like a new man cause I finally got some rest. So the argument against this is that there are not enough studies done to determine the potential cognitive impairment from THC over the long term. But I would argue that the cognitive impairment from chronic sleep deprivation is considerably worse, plus the amount I am ingesting is 3 very small puffs. Note: I have tried sublingual THC , don’t like it as much cause onset takes too long. Now I can say that the times I feel most “normal” (like myself pre diagnosis) is when I exercise vigorously (which I pretty much do for multiple hours every day) and when I am able to sleep. None of this is a medical recommendation, just thought I would share my journey….

[Andrew L.]

Sleep is an ongoing challenge.

I have accepted the fact that I will wake up somewhere around 2-4 am pretty much no matter what I do (I go to bed around 1130), and will probably be awake around an hour or two.

My neuro recommends a dose of dopamine when I wake up, so I have been doing that (1 tab at 1030 pm, 1 tab middle of the night 25/100 carbi/levo) when I wake up (try not to do it if it is under four hours since last dose). Note: It seems to be acceptable to take as much as 8 pills of 25/100 carbidopa/levo in 24 hour period, and my doses during waking hours are fairly low. So am thinking if someone is already on fairly high day doses of Carb/levo, this may not be an option.

I also do 10-20 mg of 12.5:1 CBD:THC 1 hour before bed and again at 2 AM. Even if it doesn’t put me to sleep, it reduces any anxiety I may have around it.

OF course everything is better with exercise, including sleep. I also have a meditation chair and a massage chair that I use when I can’s sleep that are near my bed. There is also the option of taking a small dose of a benzodiazepine (I like estazolam) if all else fails.

I may try the pure indica THC route again, but if so will be very careful to inhale only a tiny amount.

Finally, melatonin does nothing for me, thought I would mention that. Someone once mentioned taking 2 time released Sinemet plus melatonin as their “magic bullet”, but time released Sinemet was like taking a placebo for me (i.e. didn’t work,) though only took one.

Note: None of this is medical advice, purely anecdotal….

[Andrew L.]

MM experiences continued:

I think it is about to become mainstream in the PD community (by this I mean neurologists specializing in PD) that CBD at a 20 mg dose is helpful for anxiety associated with PD. Heard this from someone very high up in the PD medical hierarchy, though doubt there is any hard scientific data to back it up . I have also experimented with 12.5:1 CBD: THC for sleep which helps a bit as well (dose 10-20 mg CBD). I use the SL drops or gummies, does NOT make me high. Don’t like smoking as have asthma and possibly some chronic aspiration going on, and don’t want to harm the airwy. Finally, during a recent sleepless night I bit the bullet and vaped indica based pure THC for the first time, as this is supposed to be the most powerful treatment for insomnia as far as mm is concerned. The person at the dispensary told me to count 1 mississippi 2 mississippi to determine how long I should inhale. Big mistake for me. Not only did I get absolutely ripped on 1 hit, but also could not move without feeling dizzy. Wouldn’t recommend doing this alone. Needless to say sleep didn’t happen for a while (but a few hours later I did fall into a 4 hour coma). So if I try it again (doubtful right now) would take the smallest of inhalations or better yet microdose the sl drops (problem here is it takes longer to work). Of course the biggest problem with THC is cognitive impairment, however for those of us with severe insomnia nothing is worse than the cognitive impairment of not sleeping. So pick your poison. As always, nothing I am saying should be construed (or misconstrued) as medical advice, just relating personal anecdotal experiences.

[Andrew L.]

I have vaped it, used edibles, and sublingual tincture.
At 20 mg I believe it reduces anxiety. 10 mg hit or miss with anxiety. Doesn’t really help with sleep.
Most of what is sold in the dispensaries here in Florida is hybrid, one dispensary here has indica dominant. Actually don’t like the way the indica dominant CBD makes me feel. I have also tried it at 12.5:1 CBD:THC hybrid. Not much different. Like the edibles best (10 mg per gummy, onset a little longer.) Bottom line it is not a panacea (at least for me) , just another tool for the tool just. As an aside, I found that indica dominant THC tincture microdosed under tongue helps with sleep (2-6 drops). Unfortunately only lasts about 3 hours and feel it the next day (a little cognitive “foginess” in the AM.) Does not make me high at all.

[Andrew L.]

Have it a couple of years.PD is Dopamine deficiency. While everybody has different manifestations, there is probably a decent chance that once you begin to adequately  replace your dopamine u will be able to do things again that you did before though for how long and how well is uncertain As everyone is different.There are no generalized answers to your questions and you need to work with a good neurologist and get on the right meds as needed and then Discuss these things with your doctor

[Andrew L.]

Thank you Jean for all that you did and do! Live strong, one moment at a time!!

[Andrew L.]

Hi Joel; am personally unaware of the benefit of one part of the light spectrum vs. another till I saw it here. As for the “experiment”- I was all set to hire an electrical engineer to wire my house when I found a program (app) that works on certain types of I -pads that have a minimal refresh rate of 120 HZ. Sound and cognitive exercises included in the app as well. I do not want to advertise for hardware / apps that cost money but If u r so inclined U could look at Alzheimer’s apps in the App Store and find it yourself …the app explains  the hardware specifications . Note . I believe there is a phase 1 clinical trial at mit on this going on now but for Alzheimer’s, not Parkinson’s ..ar any rate On 1/6 I will be getting a world expert opinion on whether there is anything to this or if  it is just another scam. Will post more then tho I couldn’t wait and have started it already, figure If nothing else the cognitive exercises would he potentially helpful.

[Andrew L.]

I am doing an unscientific (i.e. not a controlled double blind study and a sample size of one) clinical trial on myself doing this with synchronized flickering light and sound at 40HZ. Just finished the logistical part of it, good to go starting today or tomorrow. Plan is 1 hour per day. As Jean pointed out the research appears to be for Alzheimer’s , however in my admittedly limited understanding the plaques are the same, just in different places in the brain in P.D. vs. Alzheimer’s. Anyway, will provide more feedback on this going forward if anyone is interested.

[Andrew L.]

I like that Jean. Normal is good. :)Plus we are getting older, so maybe it is not all Parkinson’s if we slow down a bit.