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    • #19087
      Ally
      Keymaster

      Has anyone heard of the over-the-counter sweetener, mannitol? Dany Vesely is a 63-year-old person with Parkinson’s and he says that mannitol has helped him combat the disease.

      You can learn more about the new documentary that covers Dany’s story and mannitol by clicking here.

      What do you think of Dany’s story? Do you think mannitol holds promise for people with PD?

       

       

      o

    • #19122
      Jo S.
      Participant

      I’m excited about it and am going to try mannitol. If there aren’t any side effects, it shouldn’t be a problem adding it to my C/L regimen. And if it helps relieve some of my symptoms … all the better!

    • #19131
      Ally
      Keymaster

      Hi Jo, did you know about mannitol prior to hearing about/watching the documentary? Please keep us updated on your experience and let us know if your doctor has any thoughts about mannitol, too!

    • #19134
      Jo S.
      Participant

      Hi, Ally. I heard about it recently, just a few days before I watched the documentary. I haven’t talked with my doctor about it yet. I’m going to continue with my meds and just add the mannitol. If I continue with it, I’ll definitely discuss it with my MDS at my next appointment or message them before then if I have any concerns. I’ll let you know how it goes (I have it on order but I’m not expecting it for another couple of days).

    • #19143
      Skip Shaputnic
      Participant

      Hi Ally,

      Thanks for posting this. I also read with interest another related Parkinson’s News Today article “The Science Behind Mannitol: How a Simple Sweetener May Help Parkinson’s Patients” https://parkinsonsnewstoday.com/2020/07/29/the-science-behind-mannitol-how-a-simple-sweetener-may-help-parkinsons-patients/ Only had time to mention this update with my MDC neurologist last week and she advised holding off b/c I’m already “self-enrolled” in my own non-clinical trial of Bacillus subtilis probiotics since January (which I’ve been meaning to share with forum members) and she didn’t want me experimenting with too many different things at the same time. The probiotics research is very promising–here’s some skinny:

      Parkinson’sUK January report on their research about Bacillus subtilis probiotic in protecting against Alpha-Synuclein protein aggregations in the brain. Their short article “Gut Bacteria Could Guard Against Parkinson’s” http://www.parkinsons.org.uk/news/gut-bacteria-could-guard-against-parkinsons ScienceDirect.com also features a much more comprehensive report http://www.sciencedirect.com/science/article/pii/S2211124719317437 “Probiotic Bacillus subtilis Protects Against Alpha-Synuclein Aggregation in C. elegans.” This finding was also reported by Parkinson’s News Today Daily Digest dated 1-17-20.

      The application of Bacillus subtilis, as described in these reports, in stopping or even reversing the build-up of the toxic alpha-synuclein protein clumps, a hallmark of PD, sounds promising, to say the least.

      My MDC nurse practitioner told me in March that Bacillus subtilis doesn’t cross the blood-brain barrier  and implied that it therefore may not be of much benefit. I contacted Parkinson’sUK shortly after seeing her to relay this concern and received this reply, which makes sense to me:

      “The theory of probiotics, is to boost ‘good’ bacteria in the gut and there is increasing   evidence that the gut may play a role in Parkinson’s. For instance, some researchers think that toxic alpha-synuclein may originate in the gut and travel to the brain. So, the theory is by boosting gut health researchers may be able to improve symptoms of Parkinson’s or even slow the progression of the condition. To do this, the probiotic needs to reach the gut and not the brain.”

      Again, to me the application of Bacillus subtilis as described in these reports, in stopping or even reversing the build-up of these protein clumps in PD does sound very promising. So much so, I began my own “personal trial” with it on 1-24-20 starting with one 500 mg tab/day using the same OTC brand that that was used in their UK study. That was well tolerated and, after a week I increased to two 500 mg tab/day morning and evening, and have stayed with this dosage since then. Maybe it won’t prove to be of much benefit as I have noticed little change with symptoms so far, but I feel like I’m doing something proactive to possibly help. But, at the least, I may get a healthier gut!

      In addition, I added a daily oral CBD emulsion 2 years ago, which has vastly improved with swallowing and coughing issues (to the point of no longer needing to do the tongue strengthening exercises my speech pathologist gave me, and results were realized within days).

      But, I digress. Please keep me posted with Mannitol developments as I’m very interested. Btw, if anybody wants to chime in with their experiences with probiotics or cannabis, or whatever they’ve come across,  please jump in.

      Oh yes, one more tidbit of super encouraging news:

      <u>UCSD School of Medicine</u>  (University of California San Diego) released an exciting report on astrocyte-to-neuron conversion in PD on 6-24-20 titled One-Time Treatment Generates New Neurons, Eliminates Parkinson’s Disease in Mice https://health.ucsd.edu/news/releases/Pages/2020-06-24-One-Time-Treatment-Generates-New-Neurons-Eliminates-Parkinsons-Disease-in-Mice.aspx

      In treated mice, non-neuronal brain cells, astrocytes, were converted to neurons by inhibiting just a single gene, the gene that encodes PTB, the polypyrimidine tract-binding protein. I am very interested in following developments of this research because it is potentially ground-breaking and is being conducted locally. This development is right up there with Summit for Stem Cell https://www.summitforstemcell.org/ another local research project.

      All the news that fits for now

      Best wishes to all to enjoy long and happy lives and to live as well as possible with PD today.

      Skip Shaputnic

      San Diego, CA

    • #19157
      Daniel Best
      Participant

      It’s inexpensive and easy to take dissolved in warm water, so why not.  I signed up on the Israeli organization’s website, according to it I think based mostly on my 165lb weight it recommends 10g/day, which is not very much.

    • #19158
      Jo S.
      Participant

      It’s interesting that you posted about gut health, Skip, as that was one of my first symptoms (many, many years ago — long before I was diagnosed with PD). My experience with mannitol wasn’t very good, as it increased my bloating and had other undesirable gut-related side effects. Mannitol is a FODMAP, so if anyone is following a low-FODMAP diet, this wouldn’t be a good choice. I also rented and watched the full documentary and wasn’t overly impressed in terms of the “results.” So, for me, it’s back to the drawing board in terms of waiting for the next big thing to come along for me to try.

    • #19160
      Jean Mellano
      Participant

      i skip, i am intrigued by your comment on daily oral CBD emulsion.   My swallowing is deteriorating and i would love to know more about this emulsion, ie; where do you get it, how much , how often do you take?   since beginning of may  i am taking the b.subtilis by Biokult, nothing has changed in my symptoms :-(.   i am also doing the mannitol.  one of these days, i will find my holy grail…

    • #19166
      Skip Shaputnic
      Participant

      Jean,

      I’m happy to respond, but to answer your question about where I obtain my CBD I’d need to supply product information, which might violate posting terms b/c it could be interpreted as an advertisement. Would it be better to send you a private message with product particulars or do you think it’s OK to post it publicly on the forum?

      In general, though, the CBD emulsion that I use consists of water, organic vegetable glycerin, a proprietary blend of fragrant essential oils, botanical hemp oil, vitamin E, plant-derived cellulose, and non-GMO sunflower lecithin. A one ounce bottle contains 300 mg of naturally occurring CBD from hemp and is not psychoactive as it contains less than three-tenths of one percent (0.3%) THC. Each bottle comes with a dropper and I use one full dropper about 3 times a day, and sometimes at night if I can’t sleep as it has a calming, relaxing effect.  Best I can tell is one dropper-full is about 10 to 15 mg per dose.

      We’ve had a previous discussion about CBD where I mentioned that after doing some research a few years ago I was motivated to see if it may provide some symptomatic relief–see the Molecular Neurodegeneration report published in April 2015 about the role of cannabinoids with PD “Promising Cannabinoid-based Therapies for Parkinson’s Disease: Motor Symptoms to Neuroprotection” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4404240/

      In the Abstract it’s stated that cannabinoids, of which cannabidiol (CBD) is a cannabis component, possesses efficacy against bradykinesia and levodopa-induced dyskinesia. It found that chronic use of levodopa “is coupled with the development of motor complications such as levodopa-induced dyskinesia, which affects 30 to 35% of patients after just 24 months of levodopa exposure.” I’m going on 3 years since Sinemet initiation, and now Rytary, so this is a concern although when switching to Rytary in January I tried going with the lowest dose to hopefully prolong levodopa’s efficacy and to provide some “wiggle room” in case I need to increase levodopa dosing in the future if levodopa-induced dyskinesia does develop. So far, so good.

      This cannabis research goes on to say that “cannabinoids are one such interesting class of agents that not only have demonstrated neuroprotective ability, but also have…potential to alleviate motor symptoms observed in Parkinson’s.”

      So, with this info I decided to give it a try in June of 2018. Within days I felt better, healthier. Although my goal of incorporating it was mostly to see if it was effective in controlling certain motor symptoms, especially tremor, without pharmaceuticals I experienced marked improvement elsewhere, particularly having to do with swallowing issues. This I did not anticipate, but it was very welcomed. I still “cough & clear” but not nearly as much and swallowing difficulties considerably improved. Eating nuts and tortilla chips, two of my faves, wasn’t nearly as much of a swallowing challenge as it was pre-CBD. There was also considerable reduction in the quantity of phlegm produced. Pre-CBD I had to carry a spittoon around the house with me, but with CBD it was no longer needed. I’m happy to say that this experiment has increased my confidence knowing that I am better able to live successfully with PD.

      These improvements are no small deal–according to the Parkinson’s Foundation dysphagia (difficulty swallowing) can lead to malnutrition, dehydration and aspiration (when food or liquid “goes down the wrong pipe”). Aspiration, which can be silent, as a person does not cough or choke, can lead to aspiration pneumonia and is <u>the leading cause of death in Parkinson’s.</u>

      Based on my experiences and ample anecdotal accounts elsewhere, I firmly believe that CBD is a bonafide emerging medicine and am happy to see it being employed across a wide spectrum of health issues, and especially for the well-being of those of us dealing with Parkinson’s. But, I make no claims or guarantees that CBD will work for everyone—this has just been my personal experience so far and for which I remain extremely grateful. I also find great satisfaction in sharing my experience with others.

      So, LMK how to best get product particulars to you. Also, as an avid bicyclist, I read of your unfortunate accident biking several weeks ago when you broke your elbow in a crash. I hope that your injury has healed, or that you’re still on the mend and recover fully. Maybe you’ll feel more confident in getting in the saddle again sometime. Since I recall the crash was caused by your foot freezing and being unable to unclip from the pedal in time before losing balance, the only thing I can’t think of is to go back to the old-fashioned non-clip, non-cage type pedals if you decide to ride again.

      It just occurred to me that CBD is off-topic in this thread. To tie this into mannitol content I read Wikipedia’s discussion about it and thought that you and others might be interested in taking a look https://en.wikipedia.org/wiki/Mannitol All in all we’re living in an exciting time of extensive PD research (which are bound to eventually bear fruit!) which provides me with a strong sense of optimism for what the future may hold. I hope that effective treatments will soon be coming down the pipeline. This also helps me to live as well as possible with PD today.

       

       

       

       

       

       

       

       

       

    • #19177
      Jean Mellano
      Participant

      hi skip, i checked with the powers that be; it is okay for u to respond with CBD brand u r using in this forum.

      swallowing and bradykinesia are getting worse for me and i would love to give the CBD u r using a shot.   after many tries at ‘synptom relievers’ i so k now that not every remedy works for everyone.    i figure one of these days i will find what  helps me.

      i wont be cycling any time soon.   it will be at least a year for me to heal .   i totally shattered my elbow and now have a titanium plate.   radial is dislocated and to fix it is another surgery with no guarantees it will resolve the issue.  so, i am doing PT to see what happens.  my late husband was an ironam triathlete  and an excellent cyclist.  his company prouced triathlons and as a race director he would always stress until the last biker was finished with the bike course.  he said cycling is a dangerous sport… it most certainly is!  my PD symptoms have taken a huge dive since i cannot exercise like i used to.  i believe exercise is  the best thing for slowing disease progression and helping symptoms.    if i do go back to biking, i will NOT use clip ins!

       

    • #19179
      Skip Shaputnic
      Participant

      Here’s the skinny on the CBD oral emulsion that I’ve been using–it’s called Randy’s Remedy and is available at Randy’s Club https://randysclub.com/pages/randysremedy Scroll down to Randy’s Remedy Daily. Products can be purchased one-time or ongoing by subscription (with a discount). It’s basically a family business run by long-time friends who also live in San Diego county. They ship directly to your door in all 50 states. For the record, I have no financial interest in Randy’s Club or G. Randall and Sons.

      As with most things, there’s a bit of a story with how Randy’s Remedy came about. Randy was a friend of mine who died of gliobastoma multiforme brain cancer 10 years ago. He was well-liked, athletic and fun to hang with. Lots of good times, good memories. We were the same age and the news of his passing hit me hard. His surviving wife and two sons wished the CBD products that they now feature were available then. After Randy’s death they pursued developing products that they knew would be beneficial in treating cancer and this lead to forming Randy’s Club. Btw, I am also a prostate cancer survivor and have used their CBD/THC 50/50 emulsion blend several years ago with some success, but eventually needed conventional treatment, which was successful. If you do decide to try CBD my advice would be to start with low dosing. If that goes well, then gradually increase it until you find the optimal amount that addresses your symptoms. I’ll tell them that you might be in touch. I hope it works for you.

      To finish my comments about levodopa-induced dyskinesia (LID), Parkinson’s News Today shed more light on it in a 4-21-20 feature “Clinical Model Predicts Risk of Levodopa-induced Dyskinesia in Parkinson’s” https://parkinsonsnewstoday.com/2020/04/21/clinical-model-predicts-risk-of-levodopa-induced-dyskinesia-in-parkinsons/ It reported that more than half of patients develop LID within the first five years of levodopa initiation. It went on to say that those without dyskinesia were older at disease onset, older at evaluation, had shorter disease duration, had been taking levodopa at <u>lower</u> doses and had experienced tremor as their first PD symptom. Patients with tremor as their initial motor symptom were about 70% less likely to develop dyskinesia compared to those with other motor symptoms at disease onset. Personally, I feel blessed that I meet these criteria and have tremor-dominant PD, although little did I ever imagine I would be writing someday about being grateful for “just” having PD tremors.

      Oops. Got my “wiggle room” facts wrong in my previous post. If levodopa-induced dyskinesia (LID) develops it is usually treated with <u>lower</u> dosages of levodopa, not by increasing it as I mistakenly stated–sorry for any confusion. But, higher cumulative levodopa dosing is a recognized risk factor in developing LID. One of the benefits of this Forum is it provides opportunities to learn more about what we’re dealing with through the experiences of others and to offer insights from our experiences in order to help others. If you see something I post that is inaccurate please call me out on it so we’ll all have better, more factual, understandings.

      I also have volunteered for Parkinson’s panel testing that evaluated the seven most common genes associated with PD: LRRK2, GBA, SNCA, VPS35, PRKN, PINK1 and PARK7(DJ1). Testing looked for changes in genetic make-up. Whether it’s due to good genes or just good luck, I don’t know, but my results were negative, or normal. This means that testing did not detect disease-causing variants that contribute to developing PD, so I have zero variants of the tested genes associated with increased risk. Genetic testing is not perfect and does not test for all possible variants. Still, the question remains—what actually did cause me to contract PD, then?

       

       

       

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