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    • #11375
      Jean Mellano
      Keymaster

      I have not yet looked into medical cannabis as an option, mainly for 2 reasons.  First, I live in NY which has additional requirements for doctors to prescribe for PD ; patient must have at least one associated condition — extreme malnutrition, severe or chronic pain, severe nausea, seizures, or severe or persistent muscle spasms.  None of these apply to me.  Also, I have heard it is most helpful for tremors which I currently do not have.    Have you tried medical marijuana and has it helped you?  If so, which symptoms?

    • #11553
      William
      Participant

      I have read many articles about medical marijuana and how it can help you in terms of chronic pain, bone injuries, eating disorder/anorexia, anxiety disorders and panic attacks, inflammation, even cancer and a lot more. Like this article about a marijuana strain from http://www.ilovegrowingmarijuana.com/blackberry-kush/ . Cbd and thc are also new to me and I don’t even smoke. If this is true I cant find any solid conclusive evidence that speaks to its efficacy.

    • #11554
      Jean Mellano
      Keymaster

      Thank you William for sharing your thoughts.  My experience with marijuana was in high school, I smoked, I laughed, I got hungry, I fell asleep. LOL

    • #11686
      calumhagget
      Participant

      It’s seems like the funniest experience you have , medical marijuana is not beneficial for the teenagers that’s why doctors prescription is necessary before using it for your own.

      • #11687
        Jean Mellano
        Keymaster

        Calumhagget, makes sense to me….

    • #14186
      samantha
      Participant

      If you take a small dose of medical cannabis at night, you’ll sleep through the high from the THC. But always take a little less than needed to see how it works and add more as you get an understand of how the medicine works with you. It’s an individual thing. Everyone has a different tolerance. More here https://www.ncsm.nl/strain/high-cbd-low-thc-strains-list

      • #14187
        Jean Mellano
        Keymaster

        Thank you for sharing Samantha.  

        These forums do not provide medical advice, diagnosis or treatment. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this forum. The intention  of these forums is to spark discussion about issues pertaining to Parkinson’s disease.

    • #14212
      Boswell
      Participant

      Hello,

      I have tried medical cannabis and it has helped manage the dyskinesia as well as my appetite and my pain levels are lowered because of this wonderful medicine. From what I have gathered from my use of medical cannabis is that THC is a very important component in managing Parkinson’s as it activates CB1 and CB2 receptors which affect the brain, spinal cord, and peripheral nerve. These three symptoms if alleviated from the disease can increase the quality of life for anyone dealing with a central nervous system disease. This is something I love talking about, I love sharing my experience, and the little knowledge that I have come into from talking to Lee at King Harvest.

    • #14213
      Jean Mellano
      Keymaster

      Thank you so much for sharing your experience.  It can give people hope.  Do you experience bradykinesia, poor fine motor skills , balance and/or fatigue?  If so, has it helped those symptoms for you?

      • #14214
        Boswell
        Participant

        So I think that a sativa strain is what will help with movement and mobility. The Uplift tincture that I use is great for fatigue and improve motor skills. Sativa is an energy inhibitor. Using this with CBD has been the best combination.

        • #14217
          Jean Mellano
          Keymaster

          Boswell, that is interesting, I will check with my CBD supplier about this.  Are you talking about CBD oil or medical cannabis?  I believe CBD has THC removed.

        • #14237
          Boswell
          Participant

          Hi Jean and good morning. I hope you had a nice weekend! I was busy with work and needed to catch up on some sleep. So CBD is a cannabinoid that is found in cannabis. Cannabis is hemp or marijuana. You can extract CBD and isolate the compound which a lot of companies are choosing to do so. However, I think that if you only use part of the plant then you are not going to achieve the maximum health benefit. I think hemp is great for manufacturing good, providing dietary supplements, and useful as over the counter medicines can be used. In my opinion I believe that the real medical benefit comes from marijuana. Which brings me to smoking. Smoking I think is a thing of the past and I think that in order to have real positive results oils or tinctures are healthier. The link I wanted to post was about medical cannabis I don’t consider it advertisement and the language is appropriate with no use of profanity.

    • #14216
      Boswell
      Participant

      Am I allowed to post videos from youtube here?

      • #14218
        Jean Mellano
        Keymaster

        It depends, it cannot be an advertisement for a product or practioner and cannot contain profanity.   Typically, I moderate each response so I would make an assessment as to whether or not it should be approved

      • #14219
        Jean Mellano
        Keymaster

        It depends, it cannot be an advertisement for a product or practioner and cannot contain profanity.   Typically, I moderate each response so I would make an assessment as to whether or not it should be approved

      • #14241
        Jean Mellano
        Keymaster

        Boswell

        feel free to post the link.

         

        Since i I live in ny , it has very strict requirements for prescribingmarijuana for Pd.  Plus, I am not so sure it would be a good fit for my symptoms 🙁

      • #14323
        Robert Reny
        Participant

        Thank you so much for sharing your experience Boswell

        There are studies which claim that <span class=”scayt-misspell-word”>cannabinoid</span> compounds may have the ability to stop or prevent the growth of cancer cells. After a detailed screening and analysis, researchers have identified 10 <span class=”scayt-misspell-word”>cannabinoid</span> compounds that stopped the growth of all the types of colon cancer cells, but it is unclear exactly how those compounds worked to stop the tumor growth.

        Researchers say if we block signals that tells cancer cells to divide, we could stop cancer.” 

        Source-  https://www.myhealthyclick.com/medical-marijuana-may-inhibit-growth-of-colon-cancer-cells-finds-research/

    • #15988
      Andrew L.
      Participant

      Have been gathering info on this, my impressions are as follows…  First off, it seems to me that most neurologists (like other docs) know little, which is understandable for those trained in the scientific method (which is all doctors in the US), as data from large controlled studies is lacking. So as far as medical science goes, at best this is in the realm of “guesswork”. In states where cannabis is still illegal I think a presumption can be made that most docs either know NOTHING or are hesitant to say anything (as they should be) because they don’t want to put their licenses in jeopardy. I personally have consulted with 5 different docs in two states who “specialize” in this, 3 appeared to be quacks and 2 appeared to me to be the real deal. This is in addition to multiple neurologists. Have also visited multiple dispensaries and talked to a lot of people.  What I learned so far (all comments are my personal observations only, do not hold up to scientific rigor) :

      1)this is NOT about getting high, which I think is a really bad idea for PD patients due to the cognitive impairment that can result.

      2) Probably best to get products from dispensary (need a card for this), as there are beneficial effects utilizing all the compounds and terpenes in the plants, which I don’t think you can get when trying to buy elsewhere. Also think products bought at dispensary probably have a more accurate profile in what you are actually ingesting.

      3)Personally I think sublingual drops are the way to go; though vaping has a quicker onset, don’t think there is enough data about the safety of inhaling anything, and given that PD patients are at a higher risk for aspiration pneumonia, don’t like the concept of adding another irritant to the airway.

      4) Cannabis products are sativa based, indica based or hybrids. Sativa is more for the head and has more psychoactive properties, indica more for the body.  There are certain terpenes in each that have different effects.  I think what we want is indica based compounds that relax the body.

      5) CBD is not psychoactive (and the trace THC found it sold by dispensaries is likely meaningless), and is probably the safest product to use though like with the rest of cannabis more studies are needed. Most of the CBD sold does not tell you whether it is indica or sativa based. However some dispensaries do. If you can find one that sells indica based CBD, I think that is the way to go to help with anxiety, tremors and insomnia. It definitely relaxes the body (subtly). It generally comes in vials  with a dropper that tell you the mg and cc in each vial. You have to do the math to dose it. I find 5-10 mg sublingual to be helpful (in most concentrations this is about half a dropper, but again need to calculate). Probably best to start very low and titrate up. Best guess is 1-3x per day is probably ok, as needed.

      6) THC products should be treated with extreme caution. I think most neuro docs would be against it because of the potential for cognitive impairment. I see no reason for a PD patient to mess with sativa based THC (really ever), which is what gets people the “highest”.  (Unless going to a Woodstock reunion ;weak attempt at humor).  However, indica based THC can be microdosed using a dropper that comes with the vial. 1-2 drops under the tongue at bedtime (dose is a tiny fraction of a mg) has been highly recommended  for insomnia (doesn’t get you high).   It’s all about risk: benefit imo. When weighing the potential for cognitive impairment from sleep deprivation versus the potential therapeutic effect form micro dosing indica based THC, I think the latter wins out. Personal opinion only, like the rest of what I am writing.

      7) Myrcene (a cannabis based terpine ) can be found in certain teas’ and is probably helpful as well. High concentrations are found in indica based THC.

      At any rate I will stop now. These are my personal observations and in no way am I recommending any of this for anyone.  Appreciate all feedback from anyone else pursuing this…and if anything I am saying is wrong (scientifically or otherwise) please correct me, am still learning.

      • This reply was modified 1 month, 1 week ago by Andrew L..
      • #15994
        Jean Mellano
        Keymaster

        andrew, this is excellent info.  my neuro is open to cannabis treatment, and where i live (NY), it is legal for PD treatment.   the challenge is, finding someone who knows what the dosage should be.  i am so weary of trial and error with vitamins, supplements, mucuna and meds,  i keep getting false hopes that the next ‘thing’ will  work for me.. only to be disappointed once more and also more than a few dollars poorer:-(

    • #16000
      Andrew L.
      Participant

      Hi Jean:

      I am no wild eyed proponent of any supplement or treatment (including cannabis) not proven to help. Unfortunately , I think the vast majority of treatments /supplements for PD are completely bogus. I am hesitant to say “all” because I still hope. But I think the reality is that (almost?)  all of these supplements / pseudo treatments  are mainly supported by charlatans/ greedy people making money off desperate people  with a (so far) incurable, progressive disease. My neuro has term for it, he calls it “medical tourism”. I believe him, I don’t think there is anyone with more knowledgeable and up to date…  So when I go down a list of treatments, he says medical tourism/ medical tourism ad nauseum.  Sadly.

      However, we do know there are endocanabinoid receptors all over the body and particularly in the nervous system, and unlike  most (all?) supplements, it looks like cannabis may actually do something.

      https://parkinsonsnewstoday.com/2019/10/25/therapeutic-potential-of-cannabinoid-compounds-in-parkinsons-and-lid-analyzed-in-review-study/?utm_source=PAR+E-mail+List&utm_campaign=1913ab1c24-RSS_WEEKLY_EMAIL_CAMPAIGN_DAILY_US&utm_medium=email&utm_term=0_62dd4fb5e3-1913ab1c24-73265445

      Is it a cure? Highly doubtful.  Is it protective? Who knows, probably won’t find out for years. Perhaps in conjunction with other  meds? As per the article:

      “Notably, preclinical studies suggest that a combination of CBD with compounds modulating specific non-cannabinoid receptors — associated with neuroprotective and anti-inflammatory effects and activated by endocannabinoids — may be an effective therapeutic approach to ease Parkinson’s motor symptoms and LID”.

      As noted, I find 10 mg sublinguinal indica dominant CBD tincture (that has a full range of terpines, as per dispensary ingredients) to be of some clinical use (for myself only, not a recommendation).  I uses it 1-3x per day, as needed.)

       

      • #16009
        Jean Mellano
        Keymaster

        andrew, i have come to the conclusion there will not be a cure in my lifetime (I am 65).  all i can do is donate my brain to pd research and hope that those with pd that are still here can benefit from what may be learned.  as moderator for this forum, i block so many spammers who have THE cure for pd.  it sickens me that these people/companies prey on our hopes and desperation.

         

        you may want to create a new post on alternative treatments forum for this cannabis topic.

         

        as for cannabis access in NY, I can get my neuro to prescribe it and we do have places to get a cannabis rx filled but i have not pursued since no one can tell me dosage for neuro to prescribe.

    • #16001
      Andrew L.
      Participant

      Am wondering if I should post my experience in the supplement thread, wish there were more people I could network with who have thoughts on this…

    • #16002
      Andrew L.
      Participant

      I am sorry that you are in NY and do not have access to this  :(, tho would think/hope it is coming…

    • #16109
      Jo S.
      Participant

      I agree with everything that’s been said so far. I really didn’t want to take pharmaceuticals, but there’s really not much else available. I talked with my first doctor about it, as I knew nothing at all about medical cannabis and he really didn’t either. He said the same thing you’ll hear and read everywhere: There have been no solid clinical, peer-reviewed studies and everyone’s brain is different and responds differently to medical marijuana (MM). That’s why it would be virtually impossible for your neurologist to prescribe anything. Doctors know very little about how MM works, and there are literally thousands of MM options, and they vary from state to state. There aren’t any standardized forms as there are with pharmaceuticals.

      That said, I got my card and went to my dispensary. I’ve gotten quite an education since then. I tried vaping MM, which is supposed to provide more of an instant relief. I kind of enjoyed the experience of vaping, and it seemed to provide a bit of a calming effect for me, but I have since developed a very dry mouth and throat (not from the vaping, but probably from my meds or PD in general), so vaping isn’t a good solution for me. I also tried the sublingual oils, and those didn’t have much of an effect at all, but that might have been due to their strength, the low dosage I was taking, and a bit of general fear I had of them. I had a high CBD/low THC oil for the daytime and a high THC one for nighttime. The daytime one kind of “took the edge off” between my pills (which is what I was hoping it would do), but the nighttime one just made my mind race (and I need something to help with insomnia, fragmented sleep, and restless legs, so that didn’t help at all).

      I tried the daytime one until I ran out of it, and I recently returned to the dispensary. I’m now trying two other options (an oil for day — 1:19 THC to CBD and another oil for night (1:1 THC to CBD). They are VERY pricey (actually all the MM products are expensive!), but I think these will work much better for me. I’m mainly using them as an adjunct to my regular PD meds, as I need something to help during “off” periods. However, if they helped so well that I could give up the pharmaceuticals, I’d do so in a heartbeat. Occasionally there’s a story about someone along those lines, but I think the people who get that kind of benefit from MM are few and far between.

      What they’ve mostly helped with is calming me down and relaxing me so I’m not quite as restless and my tremor isn’t quite as active. Their effects are very subtle — nothing drastic (at least not for me). I’m going to continue with them to see if the more I use them the more effective they will be. Note that dosage is highly individual (another reason a neurologist can’t prescribe a product or dosage). I suggest going to your dispensary and talking with the pharmacist there. They will be able to educate you about the various products available, how to use them, what might be best for you based on your symptoms, and what dosage to start with and how to tritrate up.

      More research is being done in this area, but much more is needed. Until there is a cure (and I’m optimistic there may be one in a few years — I’m the same age as you are, Jean!), the MM may be the best option for helping us get through this without adding more and more and more drugs to our regimens.

      • #16123
        Jean Mellano
        Keymaster

        jo

        like you, i would love to give up prescription drugs. i wonder if the pharmacist in the dispensary near me is knowledgeable.  i plan to speak with my neuro next week about this.  the thought of vaping scares the heck out of me.  when i smoked marijuana in high school, i used to laugh a lot, eat, then fall asleep.

         

        i hope u have enough optimism for me in terms of a cure in our lifetimes 🙂

        • #16134
          Jo S.
          Participant

          Hi, Jean,

          The pharmacist at my dispensary spent a lot of time with me. They know they need to educate their “customers,” especially those for whom it’s their first time visiting a dispensary. I think they’re as knowledgeable as possible, given the number of ailments they cover and the number of products they sell. They want to sell something that will work for the customer/patient, because they want repeat business. 🙂

          Just be aware that it will take some trial and error to find the right product and the right dose in the right delivery system. And it’s expensive, so be prepared for that as well.

          Lower THC is better for PWP, so you shouldn’t get high at all. I didn’t get high with vaping, even with the high THC product. Vaping is supposed to work quickly but doesn’t last that long, whereas the sublingual oils work in about 15-30 minutes (if you can keep the oil under your tongue for 1 full minute); if you swallow the oil, it won’t have any effect for an hour or two because it will be going to your stomach rather than into your bloodstream, and whatever is in the stomach (especially if you’ve eaten fatty foods) will slow down its absorption. The oil lasts much longer, though (about 6-8 hours).

          This isn’t your high school marijuana, so don’t worry about getting giddy or having the munchies (although some people have reported that it does improve their appetite, especially if they had a diminished appetite previously).

        • #16145
          Jean Mellano
          Keymaster

          jo, i am used to ‘trial and error’ trying to get my pd meds right…since i dont have tremors, i wonder if cannabis is right for me.

        • #16156
          Jo S.
          Participant

          I guess it would depend on what symptoms you hope the medical cannabis will help and how well the PD meds are helping you manage them. I really wish there was a natural solution (better yet, a cure!) and we didn’t have to take pharmaceuticals. I think that’s really all that MDS and neurologists can do for us (prescribe more drugs, that is). 🙁

        • #16162
          Jean Mellano
          Keymaster

          jo, i believe drugs may have their place, however, for me, only to allow me to exercise which i think is the best solution.

        • #16165
          Jo S.
          Participant

          I exercise, but the meds also help with with symptoms that exercise doesn’t reach (such as tremors). Sadly, neither help with my cramps and muscle spasms.

        • #16168
          Jean Mellano
          Keymaster

          for cramps and spasms have you had  your potassium levels checked?  kiwis, bananas are good sources for potassium as well as salt substitute.  also, hydration is key…

        • #16178
          Jo S.
          Participant

          Hi, Jean. My potassium levels are fine (I’ve been vegan for over 40 years, so I gets tons of potassium in my diet). I also drink water constantly. These are PD symptoms — not symptoms from mineral or hydration deficiencies. Cramping and spasms go along with rigidity and dystonia and RLS. Not fun.

        • #16181
          Jean Mellano
          Keymaster

          i too am plant based.  nice to chat with a fellow vegan…  have you heard about lithium deficiency and dystonia? Naturopath Dr. Mischley wrote a thesis on it :  https://digital.lib.washington.edu/researchworks/bitstream/handle/1773/23725/Mischley_washington_0250O_11918.pdf?sequence=1

        • #16183
          Jo S.
          Participant

          I’m not comfortable taking lithium. There’s a lot of literature on it (that contradicts Mischely’s thesis) but no peer-reviewed clinical studies that would support it’s use in the treatment of PD. Until there are, along with recommend dosages for PD, I think I’ll steer clear of it.

        • #16184
          Jean Mellano
          Keymaster

          jo, i hear you.. so much information, what to do with it all?

    • #16274
      Daniel Williams
      Participant

      Hello! I haven’t tried medical cannabis, but it amazes me knowing that CBD has countless health benefits to offer. I’ve read several articles about cannabidiol products and how they work well in treating the symptoms of Parkinson’s Disease. While it is true that the symptoms of this disease are quite difficult to manage, it is believe that CBD is perfect for those who are suffering from Parkinson’s Disease, and this is actually pretty amazing!

      • #16289
        Jean Mellano
        Keymaster

        hi daniel, thanks for this info…my challenge with cbd is finding the right dosage

    • #16312
      Carol Rothfeld
      Participant

      Ever since Medical cannabis became available in Florida I tried the sublingual drops. I didn’t get any relief from the low THC for off times during the day. I used the higher THC drops at night but I still need medication to sleep. Recently pre-rolled smokeable became available. I tried the lower THC for the day off time. It helped for a short time. The higher THC that I used before bed really gave a strong hit. If you try it make sure that you do all of your night time preparations like brushing your teeth before you smoke it as the buzz is really strong. I don’t use it every night. Only when I am in a lot of pain.

       

    • #16315
      Jean Mellano
      Keymaster

      thanks for sharing your cannabis experience.   finding the right dosage and form to take it in must be challenging.

    • #16425
      jude
      Participant

      My dad, who is 85 and was diagnosed with Parkinson’s 10 years ago, is at the stage of falling a lot, hallucinations and psychosis. After a bad episode of psychosis/dyskinesias 3 weeks ago, he agreed to try CBD gels. We started him on a 30mg dose, 2x/daily from Garden of Life, full spectrum CBD (no THC).  My family has said he has been more calm and less restless. I just visited him in Buffalo from Colorado for 2 days and he did not have any hallucinations (he even said “I haven’t seen anyone lately!”), no spells of dyskinesia and no psychosis. It seems like its working and what a relief for my family.

      • #16445
        Jean Mellano
        Keymaster

        hi jude, thanks for sharing your dad’s experience.i am in process of trying to get an Rx for medical marijuana. I am at my wits end trying to find something that alleviates my fatigue which will allow me to exercise

        • #16456
          Jo S.
          Participant

          Hi, Jean. I haven’t found that MM or OTC CBD oil help with PD fatigue. Nothing has helped me with that, unfortunately. I usually can only exercise in the early morning, when I have more energy and zip (even though I’m stiffer then). Later in the day I’m just too exhausted/fatigued to do much.

        • #16473
          Jean Mellano
          Keymaster

          thanks Jo. I have heard so many positive anecdotal stories about MM, i will probably try it.  Even if it reduces my bradykinesia and anxiety (something I never had in my life) and even if it is a placebo effect, i will take it.

        • #16474
          Jo S.
          Participant

          It’s definitely worth trying. I’m still trying it (and trying to find the right product and dose). It’s a pricey experiment though, so be forewarned. Everyone responds to it differently, so you won’t know whether it works for you unless you give it a go.

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