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  • Medical cannabis, have you tried it?

    Posted by Deleted User on July 10, 2018 at 9:00 am

    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?

    Kathi replied 4 months ago 24 Members · 69 Replies
  • 69 Replies
  • William

    Member
    July 27, 2018 at 8:25 am

    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.

  • Deleted User

    Deleted User
    July 27, 2018 at 11:42 am

    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

  • calumhagget

    Member
    August 8, 2018 at 9:20 am

    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.

    • Deleted User

      Deleted User
      August 8, 2018 at 12:27 pm

      Calumhagget, makes sense to me….

  • samantha

    Member
    April 3, 2019 at 11:24 am

    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

    • Deleted User

      Deleted User
      April 3, 2019 at 10:23 am

      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.

    • William Palmer

      Member
      February 1, 2024 at 7:51 pm

      For a year now I have used a gummy to help me sleep. Not any gummy will do. This one is well-known as a sleep aid: Elderberry Gummies 4 : 1 THC : CBN. It is indica enhanced. It is made by Wyld. Ten gummies come in a container (it sells for $18-20; you can get specials too). I get the high dose version and cut each gummy into four parts. One part is all I need. I go to bed, eat the gummy (which tastes great with no cannabis flavor), read for 10-15 minutes until I start yawning. That’s it. A few nights it hasn’t worked; that’s okay. But this is worth trying.

  • Boswell

    Member
    April 4, 2019 at 5:38 pm

    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.

  • Deleted User

    Deleted User
    April 4, 2019 at 9:13 pm

    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?

    • Boswell

      Member
      April 5, 2019 at 1:53 pm

      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.

      • Deleted User

        Deleted User
        April 5, 2019 at 7:03 pm

        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.

      • Boswell

        Member
        April 8, 2019 at 11:34 am

        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.

  • Boswell

    Member
    April 5, 2019 at 4:45 pm

    Am I allowed to post videos from youtube here?

    • Deleted User

      Deleted User
      April 5, 2019 at 7:05 pm

      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

    • Deleted User

      Deleted User
      April 5, 2019 at 7:05 pm

      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

    • Deleted User

      Deleted User
      April 8, 2019 at 8:26 pm

      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 🙁

    • Robert Reny

      Member
      November 1, 2019 at 5:42 pm

      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/

  • Andrew L.

    Member
    October 27, 2019 at 12:56 pm

    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.

    • Deleted User

      Deleted User
      October 27, 2019 at 1:26 pm

      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:-(

  • Andrew L.

    Member
    October 27, 2019 at 2:09 pm

    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.)

     

    • Deleted User

      Deleted User
      October 28, 2019 at 7:52 am

      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.

  • Andrew L.

    Member
    October 27, 2019 at 2:11 pm

    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…

  • Andrew L.

    Member
    October 27, 2019 at 2:14 pm

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

  • Jo S.

    Member
    November 1, 2019 at 8:20 am

    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.

    • Deleted User

      Deleted User
      November 1, 2019 at 3:08 pm

      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 🙂

      • Jo S.

        Member
        November 1, 2019 at 4:07 pm

        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).

      • Deleted User

        Deleted User
        November 1, 2019 at 5:44 pm

        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.

      • Jo S.

        Member
        November 2, 2019 at 4:46 pm

        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). 🙁

      • Deleted User

        Deleted User
        November 2, 2019 at 5:14 pm

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

      • Jo S.

        Member
        November 2, 2019 at 5:34 pm

        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.

      • Deleted User

        Deleted User
        November 2, 2019 at 5:48 pm

        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…

      • Jo S.

        Member
        November 3, 2019 at 6:55 am

        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.

      • Deleted User

        Deleted User
        November 3, 2019 at 9:08 am

        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

      • Jo S.

        Member
        November 3, 2019 at 10:43 am

        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.

      • Deleted User

        Deleted User
        November 3, 2019 at 12:23 pm

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

  • Daniel Williams

    Member
    November 8, 2019 at 3:20 pm

    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!

    • Deleted User

      Deleted User
      November 8, 2019 at 3:24 pm

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

  • Carol Rothfeld

    Member
    November 10, 2019 at 2:42 pm

    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.

     

  • Deleted User

    Deleted User
    November 11, 2019 at 8:20 am

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

  • jude

    Member
    November 14, 2019 at 3:15 pm

    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.

    • Deleted User

      Deleted User
      November 15, 2019 at 6:23 am

      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

      • Jo S.

        Member
        November 15, 2019 at 7:45 am

        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.

      • Deleted User

        Deleted User
        November 15, 2019 at 2:03 pm

        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.

      • Jo S.

        Member
        November 15, 2019 at 2:14 pm

        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.

  • Davisonneil

    Member
    December 12, 2019 at 2:21 pm

    A lot of discussion about very different compounds. I think it would be helpful to group these and participants experience with them by category. I also think the community would benefit by discussions about the specific symptoms they are seeking to  address.

    I am challenged by a severe stoop. I am in constant pain and to lessen it I find my posture worsening as I stand or walk any distance (say > 20m). It feels like some force has grabbed me by the scruff of the neck and is pulling me down, down, down. I also have the associated wooden gait (eg arms relatively immobile) and poor balance. My situation is complicated by severe scoliosis (curvature of the spine) and 2 disks which have been fused by surgery. Unlike tremors, the scientific literature, for the most part says – bad luck we have nothing for you. I am on the standard PD meds (levodopa and anti-seizure meds as I started throwing seizures). The meds have worked in that my seizures have abated and some PD symptoms have cleared up (I can smell again which is great  because I love to cook)

    I take a very strong narcotic (percocet) and CBD oil. My response has been very positive with a significant lessening of pain and a remarkable improvement in my posture and ability to walk. The CBD oil, unlike most of the compounds discussed here, has no THC and is very expensive to process. I live in NZ and there

    There is only 1 supplier in Canada that meets NZ  rigorous standards. A 1 week supply costs me $300. This will lessen but not much because of the large amount of plant material to yield a small amount of oil. I hope this is helpful and I would be grateful to hear of others experience with posture and mobility.

  • Deleted User

    Deleted User
    December 12, 2019 at 7:17 pm

    davis, i have heard both cbd and med. marijuana are helpful for anxiety, tremor and pain. i am still waiting for my NY state paperwork to be approved before i can purchase med. marijuana.   i have no idea how much it costs here. feel free to start new topics/threads related to how you would like to see them appear.  the alternative treatment forum would be good for this.  https://parkinsonsnewstoday.com/forums/forums/forum/parkinsons-disease-alternative-treatments/

  • Andrew L.

    Member
    February 12, 2020 at 1:49 pm

    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.

  • Mary Beth Skylis

    Moderator
    February 12, 2020 at 7:17 pm

    Andrew,

    My Dad has been toying with CBD too. For him, I think it’s more about muscle tension and soreness. But he doesn’t sleep very well either. Do you feel like you’ve found a way to manage sleep?

  • Andrew L.

    Member
    February 13, 2020 at 10:09 am

    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….

  • Rick M

    Member
    February 13, 2020 at 2:27 pm

    My major challenges are chronic fatigue and restless sleep; sometimes waking up in the middle of the night and waking up early in the morning and not being able to go back to sleep.

    My experience with recreational use of marijuana when I was younger was fatigue and foggy head the next day so I would be reticent to start using for sleep as I fear it would aggravate my chronic fatigue.

    For my restless sleep, I do take .25mg of Clonazepam ( a benzodiazepine) nightly for sleep which seems to help.  My doctor prescribed .5mg. but I only take half of that.  I am surprised I only saw one other reference to  benzodiazepine in this thread.

    There has been some articles about the risks of benzodiazepine but my neurologist who specializes in PD highly recommended for restless sleep.

     

  • Olivia

    Member
    March 9, 2020 at 12:12 pm

    I usually buy a CBD flower. I have anxiety and its very helpful for me. I can sleep and tell with friends normally. In my opinion https://berkshirecbd.com/shop/cbd-flower/ best shop with premium quality CBD buds.

  • Andrew L.

    Member
    March 10, 2020 at 3:33 pm

    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….

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