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  • This topic has 23 replies, 14 voices, and was last updated 8 months ago by JoeE.
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    • #12784
      Ally
      Keymaster

      Cannabis, also known as marijuana, was recently legalized for recreational use in Canada, and it’s been legal here for medicinal purposes for some time.

      Researchers in the U.S. and Canada are testing cannabis as a treatment for many illnesses and diseases, including neurological conditions like Parkinson’s disease, but despite several clinical studies, it has not been demonstrated that cannabis can directly benefit people with PD.

      Do you think cannabis should be legal for recreational purposes or only medicinal reasons? Have you tried any kind of cannabis treatments? Did you find them effective? What are your thoughts on research dedicated to cannabis and PD?

    • #12789
      Jean Mellano
      Participant

      I Have mixed feelings about legal cannabis for recreational purposes. Alcohol is legal, why not pot?  But, on the other hand, do we want to encourage more impaired people getting behind the wheels of their cars?  I have not tried for medicinal purposes and from what I have read, it seems to be helpful for pain and tremors which I do not have.  I smoked pot in high school many years ago; after I laughed a lot (I was caled laughy daffy), I would get  the munchies and then fall asleep LOL

      • #12790
        Ally
        Keymaster

        LOL I can totally relate to your high school experience, Jean! That stuff is dangerous if you’re trying to watch your weight, which as I get older I need to do more.

        I have read that alcohol is more harmful than marijuana to the body/brain/society, which I totally believe, but I agree — a lot needs to be done to raise awareness about the risks of driving while impaired by marijuana. I think, though, that as long as you know your limits and don’t do anything dumb that can put your safety or others at risk, it’s fine for recreational use. (Just like with alcohol.)

        In terms of its medicinal properties, I know cannabis has helped a lot of my friends who have PF, MS and even lupus. I think there is a lot of potential, we just need to do more research to fully understand how it can be used.

    • #17264

      Diagnosed 5 years ago with YOPD and I’m on the slippery slope of PD – nothing so far has really made a huge improvement to my condition, and yet I’m not terribly bad off. I still do largely everything I intend to do, with some accommodations.
      I’m fortunate enough to live in a state where recreational MJ has been legalized and I have medical marijuana card. Last year, I grew my legal amount of 4 plants in my backyard, all natural super-soil, only organic fertilizer and minimal fertilizing at that.
      I was really tentative at trying MJ again as it typically made me MORE nervous, MORE shaky, and generally uncomfortable (I also have Essential Tremors which I would classify as getting worse with MJ use). However, I was open with my MDS and GP about it, and while no votes of confidence for it – they were generally supportive. I have a fair amount of depression & anxiety with my PD and all forms (high THC, high CBD) seem to benefit this. I am much less of a sad, anxious A-hole after a dosing. High CBD strains are best for my muscle stiffness which has become more problematic. It also relieves stress quite well. My tremors seem largely un-affected by any strain. If they are there before, they are there after dosing. Opposite also is true. However, the relieved muscle tightness from constant tremoring dissipate. And finally I say don’t buy into the hype that this “drug” is hugely destructive and a gateway to smack, coke, bath-salts. These associations may bear some merit on people pre-disposed to addiction, or living the rock-star life but I say one absolutely does not beget the other.

    • #17267
      Jean Mellano
      Participant

      Enthusiastic

      thnks for sharing your experiences.  From what I read it sounds like for u, the benefits outweigh the negative results from your use of medical marijuana.  Unfortunately, it seems as though for people with pd, we must sometimes choose if we prefer a treatment side effect or a pd symptom …  eg, choose our poison

    • #17270
      Sharon
      Participant

      Essential Steward,  thank you for sharing your experiences; they are very much appreciated. My husband was diagnosed a year ago.  We live in a state where medical mj is approved and that is the route we will take once we get off our behinds and do the work to get the card.  At this point, my husband’s non-motor symptoms far outweigh the motor.  His insomnia is really bad.  Depression, anxiety, apathy, etc rule his days.  The least amount of stress sends him into a tailspin.  If cannabis could give him relief from any of those for even an hour a day, it has my vote!  And, if it gave him a little “high” to forget about this disease for a little bit, that is a BIG bonus!

    • #17272
      James Harvey
      Participant

      I would mostly be interested in trying CBD to aid insomnia.  Does anyone have experience with this?  Do people develop a tolerance for CBD and hence need to increase the dose?

       

       

       

       

    • #17273
      JoeE
      Participant

      I support cannabis legalization, for everyone.  It is safer and better than many medicines sold at pharmacies in US.

      It is very helpful for my PD symptoms of insomnia, rigidity, anxiety and depression.  Also would make interstate and air travel much less stressful for those who currently have medical cards for their home state.

      Legalization will lead to better understanding, education and research.  Our medical professionals are totally ignorant on this and there is huge potential for medical benefits.

       

       

    • #17274
      Jeffery Hill
      Participant

      I have dabbled a bit with Cannabis in oil, vape and dried flower form over the last year.  Some of my sources are explicitly labeled as containing mixed THC/CBD (ratio unknown) and some are not labeled.

      I have experienced cessation of tremor, but strictly temporary while it’s circulating within me.  I also get some of my best sleeps.  I tried some during a time when I was experiencing back spasms, but honestly experienced no pain relief.

      My neurologist, Dr Susan Fox of Toronto Western Hospital, happens to be leading some studies on the efficacy of Cannabis in the treatment of Parkinson’s.  In a recent webinar she stressed that there is a dearth of data on the subject, but from her line of site early indications are as follows:

      – No statistically significant effect on tremor or rigidity

      – Possible improvements in sleep, pain and anxiety

      There is also a long-established concensus that it us useful for situations like cancer treatment symptom relief.  Hence the medical marijuana legalization years ago.

      Lots of research needs to be done on efficacy, dosing, and THC/CBD ratios

    • #17275
      Sharon
      Participant

      I am all for dedicated research on cannabis for PD if the research is not performed by a pharmaceutical company.  If it is done by a pharmaceutical company, the results will be along the lines of:  “It doesn’t help symptoms; may increase the progression of the disease and could make symptoms worse.  But, we do have this new medication that is showing remarkable potential and will only cost around $4,800 a month!”

    • #17276
      Jean Mellano
      Participant

      sharon, i am with you.  ‘big pharma’ has way too much power.

    • #17277
      Carol Rothfeld
      Participant

      I have been using Medical Marijuana for sometime. I was using the sublingual drops at night to help me sleep. I didn’t find it effective. Smokeable  Medical Marijuana has recently been approved in Florida. It is much more affective. I haven’t smoked anything in more than 30 years. However I smoke about two puffs of the pre rolled  and it is enough to relax me before bed and I sleep very well now. I am waiting for the State approval for edibles.

    • #17278
      Sharon Fisher
      Participant

      I use CBD OIL. It definitelt helps with my pain.

    • #17297
      Ruth MacKenzie
      Participant

      Hi, I’m from British Columbia where I have been able to obtain whatever cannabis I wanted for about five years. The only thing I have found useful is either CBD oil or CBD edibles with a 10% THC component. These are very effective for helping me get to sleep and staying asleep for more than three hours at a time, and I don’t get the horrible next day grogginess that I get from sleeping pills. I’ve been using the CBD edibles off and on for about four years, and I still get the same, good result with the same amount as I took to begin with, I have not had to increase it

      i have tried THC in liquid, edibles, vape, and just lately actual smoke, but have never felt it did anything for tremors or stiffness, it does not relax me.

      i use THC cream, 300mg of THC in a 50 ml jar, for pain in my feet (PD);  and in my hands, (arthritis) and it relieves the pain almost immediately and lasts for hours.

    • #17379
      Sharon Hockly
      Participant

      As I have just recently been given the ‘ go ahead’  to use medicinal cannabis for my PD. and as I live in Victoria Australia where it is ALL very new and secretive,  I just don’t have enough information or guts to ‘ take the plunge’ and am presently sitting on the line weighing it all up.

      I found your article on Cannabis/Parkinson’s very encouraging and informative, however I am still trying to get the courage together to stop my PD KINSON medication and trial the CBD MJ oil which I think? will benefit my strain of PD.  Thankfully I have no pain with my PD, however I have a fair amount of depression and anxiety, insomnia, my short term memory is chronic, the muscle stiffness in my legs is my worst, bowel & urinary problems and apathy – just to name some of them.

      As you so rightly said: One needs to choose one’s poison – would I prefer a treatment side effect from the Marijuana Oil  or a PD symptom from the KINSTON medication???????? Any suggestions as to what is the way to go?  Thanking You  Sharon Hockly

       

    • #17382
      Jean Mellano
      Participant

      sharon,  we are all so different in our symptoms and what works to ease those symptoms.  Dr. Laurie Mischley (naturopathic PD doctor) compares pd to a boat with many holes and we need many plugs to prevent ship from sinking.  i wish i had some words of wisdom for you as to what to suggest, but i still struggle myself trying to find the right cocktail of remedies. i do know for sure, for myself,  exercise and movement is the best thing

    • #17582
      samantha
      Participant

      just try to know

      • This reply was modified 8 months, 1 week ago by samantha.
      • This reply was modified 8 months, 1 week ago by samantha.
    • #17581
      samantha
      Participant

      You can know exactly only once you try it. It’s an individual thing. My mother in law was diagnosed with Parkinson’s back in 2000. She now lives with us as she’s deteriorating quite quickly over the last year. She is using the CBD tincture and it definitely makes her relaxed. We are pleased with results,better sleep more relaxed tremor on Left side of body better. But keep in mind that everyone has a different tolerance.

    • #17588
      Mary Beth Skylis
      Moderator

      Samantha,

      it’s interesting you say this. I’m an athlete who’s based out of Colorado. And I recently decided to explore a CBD tincture option for muscle recovery. And, I swear, the effects have been almost immediate. As a climber, I occasionally get tendinitis in my forearm. And regular CBD tincture doses help me relax, but they’re definitely doing something for my tendons too.

      While I was learning about this tincture, the sales rep was telling me that it has done wonders for Parkinsons. My Dad (diagnosed in 2013) tried a salve and some kind of CBD oil, and he reported minimal results. But I don’t think he should quit exploring just yet. I think there’s something to these plant-based remedies that’s worth exploring.

    • #17604
      Gail Dons
      Participant

      Your safest bet is a medication (pharmacological or naturopathic) that not only works, but has been produced so that you get the exact same bioactive component in each dose, and has been tested to see what the safe dose range is, and also evaluated for both long and short term side effects, as well as interactions with other medications.
      Unfortunately, even medical grade marijuana isn’t there yet. The potency of each dose can be widely variable, so how can it be tested for safe dose range, much less for side effects and interaction with other medications? Depends on what kind of risk taker you are – would you be willing to pay for a medication that gives you no idea how much to take (and every dose could be a different, unknown strength), and you don’t know what it is or isn’t going to do or what kind of side effects you’ll experience each time you take that unknown dose, much less whether or not it will react with any of your other meds?
      As for money, it does take money to run all of the studies that make a medicine safe and effective (although NOT $5000/month, I’ll bet!) Here in Chicago, they have just legalized marijuana, and the price is going up exponentially. They say it is because the permits are so expensive, but it is beginning to smack of “big pharma”…capitalism!
      Marijuana may turn out to be the best thing since sliced bread, but Jeffrey is right: a lot of research needs to be done on efficacy, potency, side effects, and consistency in production (yes, it will take research money to do those studies – and clinical study volunteers!) until then, “caveat emptor”!

    • #17618
      Mary Beth Skylis
      Moderator

      Gail –

      Do you think part of this struggle could be due to the legalization of it all? Until it’s federally legal, it’ll be impossible to provide standards that exist across the board (in terms of strength/dosage/consistency etc)? You make excellent points.

    • #17622
      Gail Dons
      Participant

      I can’t speak to economics, but you know there will be price gouging when someone is selling something that gives other people a “high”. It is exactly the same thing “big pharma” does. In reality, both only demonstrate one of the unfortunate qualities of human nature that we all share. Pharma isn’t the only bad guy – it’s in all of us.

      For those who want a little more detail about the pharmacology of marijuana, this is a link to an excellent article. It tells what we know, and. what we don’t know. It discusses promising areas that marijuana might benefit, as well as potential adverse reactions.

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3736954/#!po=6.75676

      A few morsels:

      “Cannabis is a complex plant with over 400 chemical entities of which more than 60 of them are cannabinoid compounds, some of them with opposing effects” Great! Which of these does what? And different varieties of marijuana have different amounts of each…and each plant within a variety has its own unique profile. Using plant sources is not going to work for consistency. When we identify the helpful cannabinoids, they will have to be synthesized or extracted not just grown and harvested. You are right, Mary Beth, unless marijuana is legal for MEDICAL use, there will be no quality control. Because of this, as well as the extensive research needed to bring a safe, effective product to market, medical marijuana will be more expensive…and some people wi. Go to the less expensive plant sources – which as you can see from my comments below, is not a safe choice. Legalizing marijuana for recreational use will make this dangerous choice more attractive.

      “CB1Rs (one type of cannabis receptor) are found at the terminals of central and peripheral neurons, where they mostly mediate inhibitory action on ongoing release of a number of excitatory and inhibitory dopaminergic, gamma-aminobutyric acid (GABA), glutamatergic, serotoninergic, noradrenalin and acetylcholine neurotransmitter systems. Because of the involvement of these systems they affect functions such as cognition, memory, motor movements and pain perception. Interesting – I wouldn’t mind if it inhibited my inhibitory dopamine transporter system, but leave my excitatory dopamine system alone! Will this interact positively or negatively with my PD meds? We don’t know…

      “The involvement of the particular neural regions and the neurotransmitter systems here is significant due to the fact that the very same brain areas and neurotransmitter systems are also implicated in psychoses, particularly in schizophrenia . Furthermore those who are at ultra high risk for psychosis have been reported to be more sensitive to the psychotogenic effects of cannabis compared with users in the general population. A psychotic outcome is not the only diagnostic category which has been associated with cannabis use. Symptoms of depression and anxiety commonly coexist with cannabis use and lead to diagnostic dilemmas “ Y’all do know we PwPs are a whole lot likelier to get psychosis, depression, etc, right? Although some of the chemicals in marijuana have been shown to ease depression an anxiety, you have to isolate those out of the 400 first, or you could make yourself worse!

      “Natural compounds of the cannabis plant are also referred to as phytocannabinoids of which d-9-THC is the main psychoactive ingredient and has been widely researched both in animals and humans. It characteristically produces, in a dose-dependent manner, hypoactivity, hypothermia, spatial and verbal short-term memory impairment. However, the second major compound, CBD, does not affect locomotor activity, body temperature or memory on its own. However, higher doses of CBD can potentiate the lower doses of d-9-THC by enhancing the level of CB1R expression in the hippocampus and hypothalamus.” Oh great – the 2 dominant cannabinoids not only oppose each other, but the good one makes the bad one work better!. The scary thing, if you use marijuana, is, “d-9-THC was found to be …significantly higher than recorded 10 years previously. However, the CBD content was found to be extremely low in more recent times. These findings suggest that current trends for preferring higher THC content variants carry significant health risks, particularly to those who are susceptible to its harmful effects” so, the marijuana of today has more of the bad hyoactivity, poor memory one, and less of the one that might be helpful…except that more of it might make the effects of the bad one worse! At what dose? And remember all of those little plants are different, so you might get one dose that’s really stronger than your last dose.

      There are a lot of moving parts here! Incorrectly balanced, they can cause serious harm. Long term mental effects might actually be worse than short term “it helps me right now” benefits. Are you willing to risk that? We need to know more! There may be some really good stuff there, but more research needs to be done (and you risk-takers can volunteer for the studies! )

    • #17646
      Mary Beth Skylis
      Moderator

      Thanks for your thoughts, Gail.

      Yeah, my Dad (diagnosed in 2013) has his medical marijuana card. And he has tried smoking it before. But he doesn’t really enjoy the experience of being high, which is why I wondered if CBD oil could provide an alternative. It seems like there could be a lot of ways to use the plant – or even hemp oil.

    • #17648
      JoeE
      Participant

      Mary Beth Skylis–there are so many options available to medical cannabis patients.  Has he tried any of the so-called ratio oils or vapes?  I get relief from PD symptoms when I vape a 1:1 strain (equal amounts of CBD and THC), and it does not make me feel high–more like relaxed and a bit euphoric.

       

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