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    • #21134
      Thomas Rutschman
      Participant

      Having read about experiments with Mannitol on this site, I decided to give it a try.  After a few weeks some of my Parkinson’s symptoms had disappeared.  Like I was once again swinging my arms automatically as I walked.  My facial expression came back, after 10 years of Parkinson’s poker face.  My writing is once again legible.   My sore body felt significantly better.

      I realize that since this sugar is FDA approved and can be bought over the counter, there is little incentive for companies to test and market Mannitol.  But if you get the same results as I did, you will be sad you hadn’t started earlier.

    • #21137
      Gianni Pellecchia
      Participant

      Young onset parkinson s, i was diagnosed at the age of 33 .

      I tried manitol and even tryed a brand that cane from israel made specifically for parkinson s people i wanted to reduce L I D.

      I used it for roughly a month but stopped it as all i was getting was a bloated stomach

      • #21145
        UMAKANT PANCHOLI
        Participant

        How much and how did you take the mannitol powder

      • #21146
        UMAKANT PANCHOLI
        Participant

        Hi Thomas i am very pleased that you are getting a positive response from using the mannitol.

        Can you plase advice us all how much and how did you take the mannitol powder and where did

        you purchase it from.  Any details will be useful for other people sufferibg from PD

        Kind regards

        Umakant

      • #21301
        UMAKANT PANCHOLI
        Participant

        Hi  Gianni, could you please advice me from where did you purchase the mannitol made in Israel for PD .

        kind regards

    • #21144
      Robert Houtman
      Participant

      I tried Mannitol for several months, originally the Israeli one then an organic one.  It had no effect at all so I guess it’s different for different people like so much with PD!  Very pleased for you though Thomas,  I hope it continues to work for you.

    • #21147
      Christine
      Participant

      I am curious about other people’s experience with mannitol. I used it for 3 plus months, which were coincidentally good ‘on’ months for me, but the stomach upset was too much for me to handle. Seriously, always had to be within running distance of a washroom. So, I’m still not sure if the mannitol was a positive addition to my regime, or not. would love to hear others experiences.

      • #21150
        Robert Li
        Participant

        Hi Christine, just a thought… If needing to run to the washroom was your only downside, it could be that your gut biome is unstable.  If you find a way to stabilize, then taking mannitol may no longer be an issue.   For me, I found that sometimes I could eat fermented foods no problem, and other times it was a big mistake!  But now I can eat fermented foods more frequently.  I hope you find your way to more good months!

    • #21148
      Nadine Eidman
      Participant

      Would love more information on brand, frequency, dosage along with side effects. Thank you.

      • #21154
        Thomas Rutschman
        Participant

        I take a heaping teaspoon in the morning mixed with orange juice.  Though it is a sugar,  it is not excessively sweet.  I live in Europe, so I get it from Spain.  I have no side effects–my other Parkinson medicines keep me constipated, so I don’t have problems with frequent bathroom needs.  I realize it doesn’t work for everyone: Parkinson’s seems to come in many different forms!   All I can vouch for is that it works incredibly well for me!
        <div></div>
        <div>Hope  it works for you.  It seems to clean up the messed up alpha synuclein proteins.</div>
        <div></div>

        • #21225
          Nadine Eidman
          Participant

          Thank you. I wonder if the brand matters. Hoping this will help my husband.

    • #21149
      Barry Block
      Participant

      I tried mannitol and all it gave me was loose stools. I have the LRRK variant of PD, so perhaps it works on other types of PD. I did have good results eating Fava beans, which are a natural source of L-dopa. These days, I add a daily Macuna capsule to my sinemet CR.

    • #21151
      Paul
      Participant

      I was diagnosed more than 8 1/2 years ago. I started using mannitol approximately 10 months ago. I didn’t initially notice any significant changes in the progression of my Parkinson’s symptoms, so I wrote mannitol off as a potential treatment. That being said, I made the decision to continue taking mannitol because it helped me maintain regular BMs. A few months ago, I noticed that many of my Parkinson’s-related communication issues (softer voice, trouble maintaining linear thoughts while deeply engaged in conversations like debates, an ability to address tangential topics and then returning focus appropriately to the central topic) had virtually disappeared. Similarly, my medication seems to produce more reliable results, and I have regained most of my self-confidence. In fact, there are times I feel like I am starting to win.

      In addition to mannitol I also engage in regular intensive physical exercise, and I am learning Mandarin Chinese (and I will do whatever else I think will force my brain to forge new neural pathways). While I can’t say definitively that mannitol is a cause for my improved condition, I can say it doesn’t hurt. I hate Parkinson’s, and I do everything I can to be as impolite a host to this disease as possible. I believe mannitol helps. I will continue to take it.

      • #21177
        Beth T Browne
        Participant

        Paul, could you share the exact kind you have been taking? Many on here say they got theirs in Australia (kind?), some in Israel (ingredients?), and Spain. Don’t know what is different in each of those types. I am a bit confused. I have been taking Mannitol for about 5 months. I order it on line from Amazon and the kind I get is made in France, but packaged in the USA. Ingredients just say Quality Standard USP. Not sure what that means.

        I don’t feel any great change yet, so maybe I have not been taking it long enough. I was taking 2 teaspoons in my morning coffee. I just upped to 3 teaspoons. But since it appears different kinds affect people differently, maybe I should try another kind. Yet, it worked for you, but took a long time. I did loose my sense of taste last November, right before Thanksgiving, but it came back several months later, and I was NOT taking Mannitol then. My doctor was shocked it came back as she said it doesn’t. Well, it does apparently. I have tremors and was hoping it would help with that.

        As people respond to this site, it would be nice to know exactly where their brand is from, what is the ingredient, how long they have taken it before it helped, and how much they took. I don’t know if I should continue what I am taking for a certain period before I give up and try another brand for a long time. If some who are noticing positive changes, could pass along the indegrents and amount taking, it would be helpful. Thanks, sorry this is so long.
        Beth

        • #21182
          Gwendoline Jakins
          Participant

          Beth, the brand I got here in Australia is the Sosa brand out of Spain.  I’ve resorted to buying it on eBay  as well to try a different brand when my supplier ran out.  I don’t think any of these are Australian.  I’m hoping we can get my husband’s sense of taste back, so will keep trying other suppliers.  Will try Bulk Supplements next.

          Gwendoline

        • #21280
          paul
          Participant

          Gwen, I’am also in Australia, Townsville. I’m also very interested in mannitol and will try it as soon as i can get some. I’ve found this mob in victoria,also up here in qld who list the Soca brand and mannitol in 500 g jar (no Price as yet} I will contact them ASAP and let you know.
          PS I’ve also tried the red light crown device, home made one as per the instructions on their tassie web site. I think it worked initially, then no more improvement to my speech, but I stopped using it when we went away for a few weeks. I still have it and was thinking of trying it again.
          http://www.eustralis.com.au/brand/72/Sosa
          Regards Paul

        • #21394
          Beth T Browne
          Participant

          Hi Gwendoline,

          Thanks for sharing about your husband.  I wanted to comment my episode with lost of taste.  First, I was diagnosed a year ago this month, however, we are sure from some symptoms, tremors and sleep issues, I had it the year before.  I lost my sense of taste a week before Thanksgiving last year.  I was pretty devastated.  I could hardly eat, as everything tasted awful.  The some months later, don’t remember exactly how many, maybe four or five, it came back.  I had stopped the LevaDopa stuff as it made me so nauseous.  So, I was not taking anything at the time.  My movement doctor said it would not come back, but it did.  How did that happen?  Who knows.  I have been doing the Mannitol about 4 months maybe.  I noticed my tremors are better, but no difference w/sleep.  I take 2 tsp.  I still drive, but I notice my memory not as sharp, particularly when I am on the computer and can’t spell a simple word or a word I am trying to type doesn’t come up quickly.  This concerns me, but I am 84, so old age may play a part, but I don’t know.  Please keep us posted on your husband’s sense of taste issue.  And, best of everything to him.

        • #21220
          Paul
          Participant

          Hi, Beth.

          Here’s a link to the stuff I buy https://www.amazon.com/gp/product/B01KAM9FOO/ref=ppx_yo_dt_b_asin_title_o08_s00?ie=UTF8&psc=1

          I take approximately 1-tbsp per day. The change was very subtle. In fact, I’m not %100 sure my improvements can be attributed in a significant way entirely to mannitol. I also try what I can to remain “outside my comfort zone” in support of my own research related to the stimulation of healing processes in the brain. At this point, though, I do feel that mannitol DOES have a net positive effect.

        • #21244
          Beth T Browne
          Participant

          Thank you so much for reply Paul. I guess it isn’t hurting me since I have been doing this about 3 months, I think. I will check out the site you sent me.

          Beth

    • #21152
      Susan Swint
      Participant

      I began using mannitol, 15 g/dy (one heaping teaspoon 2x/dy in at least 8 oz. fluid) 3 years ago for restoration of smell. Some sense of smell first returned after 2 months, though I had heard it might take 6 months or longer, and has persisted…I cannot smell everything or at every time, but it is a great improvement. There has been only one adverse event when using as a sweetener for peaches and milk. That caused severe stomach cramps that I consider due to lack of accompanying fluid. I am in a clinical trial, so would hesitate to comment on symptoms or disease progression in the last two of these years, but have been grateful for the partial return of smell. Still in Parkinson’s disease stage 1A, rasagiline only (+ trial drug).

      • #21186
        Susan Swint
        Participant

        Addition to the comment above: I am in the United States and order mannitol from PureBulk.com. Resonably priced; fast delivery; no other ingredients.

    • #21153
      Beth T Browne
      Participant

      I am so glad to see all these comments.  I started using Mannitol about two to three months ago.  I was diagnosed with PD a year ago, we feel sure I had it the year before due to shaking hand and sleep issues.  I am taking some I ordered from Amazon and it said it is made in France, packaged in the US.

      I was hoping my tremors would get better, and my anxiety, and my sleep and fatigue, but so far I can’t say I see a change.  However, I don’t think I am getting worse either.  I put 2 teaspoons in my coffee every morning.  Perhaps I should try three.  I have not had any stomach problems.  I knew it could cause diarrhea, so I wasn’t sure how much I could handle, as I am petite and only way 93 lbs.

      The meds they give everybody pretty much when diagnosed made me very nauseous when I had to up it from 1//2 3x a day to a whole pill.  So after two weeks, I stopped it.  I started taking 1/2 3x a day again about a month ago.  I have some balance problems and those remain the same.

      I will keep taking it, and if I feel there is a change I will let people know. Any anxiety and sleep suggestions are welcome.  The doctor prescribed Xanax, smallest dose, cut in half for the anxiety. I don’t take it every day as I think it makes me sleepy, so I take it at night, and sometimes I get 5 hrs instead of 4.

      Beth

      • #21155
        Thomas Rutschman
        Participant

        I take a heaping teaspoon in the morning mixed with orange juice.  Though it is a sugar,  it is not excessively sweet.  I live in Europe, so I get it from Spain.  I have no side effects–my other Parkinson medicines keep me constipated, so I don’t have problems with frequent bathroom needs.  I realize it doesn’t work for everyone: Parkinson’s seems to come in many different forms!   All I can vouch for is that it works incredibly well for me!
        <div></div>
        <div>Hope  it works for you.  It seems to clean up the messed up alpha synuclein proteins.</div>
        <div></div>
        <div>Scientists in South Korea are working on gut flora and think that lactobacillus plantarum strain PS 128 is the right one for Parkinson’s.  It’s to early for me to determine whether it helps or not…
        <div></div>
        <div>Check it out!</div>
        <div></div>
        <div>Thomas</div>
        </div>

        • #21390
          Mark Caldwell
          Participant

          I read about mannitol about a year ago, and I have been diagnosed with PD about 2-1/2 years ago. My neurologist started me on rasagiline (1mg/day) and that’s all I have been on since. I started taking mannitol (1 tablespoonful daily- about 15gms) in 1/2 cup of coffee in the morning. I didn’t want to ruin a whole cup!  I found my diet affects the after effects of the mannitol. Some foods go through faster than others and flatulence is a side effect. I have seen a plateau in my symptoms so far, but still have good days and bad days. I would tell people to at least try it.

      • #21162
        Gwendoline Jakins
        Participant

        Beth, the research that was done in Israel suggested 1tbs.in coffee for normal weight. Our pharmacist checked the research before my husband started taking mannitol. He reported back that taking more was detrimental. You are not in the normal range weight wise, so I guess it’s a possibility that you are taking too much….just a thought.

        Gwendoline

    • #21156
      John
      Participant

      <p style=”text-align: center;”>Hi All,</p>
      I have had Parkinson’s for about 6 years – tried taking a locally sourced (Australia) Mannitol about a year ago for a few months – unfortunately for me no impact or improvement whatsoever.

      Oh well – at least worth a try based on some people’s experience – but obviously doesn’t work for everyone.

      Cheers

      John

      • #21161
        Gwendoline Jakins
        Participant

        Oops, meant to say “my husband started on mannitol at the end of 2019”, not 2012.

    • #21159
      Gwendoline Jakins
      Participant

      Hi John, our story is similar to yours. My husband’s most serious symptom from the very beginning was apathy (on or in his bed almost all day). Because of this he diagnosed with Lewy Body Dementia (2012). It was the Neupro patch that got him off the bed and he was then diagnosed with PD. All was well in that area until 2019, when the extreme apathy returned. After reading about mannitol and the research being done in Israel, he started on mannitol 1tbs. a day in coffee at the end of 2012.

      Within a week, he was off the bed, talking, reading the newspapers, doing crosswords, going out with friends and more. His foggiest and dizziness disappeared. GraduallY his facial mask reduced dramatically, his coughing spasms while eating disappeared and his voice got louder.

      He started PD exercises twice weekly. He also uses a little peddle bike daily, on the floor and on the table for his arms and goes for a short walk.

      We were hoping that his sense of taste might return, but it hasn’t.

      Mannitol is not just a diabetic sweetener. My husband was in hospital, a major hospital here in Australia, where they told me mannitol has been used for brain injuries for many years. When I then told our GP, he said it was used when he did his training (1979) at another major hospital for brain surgery. As you said, there’s no money in researching it, so there it’s sat for all this time.

      Recently though I thought his facial mask was returning. Also he was coughing from time to time and I thought his voice may be getting softer. Rather than wait and see, we have now started on the infrared (Wellred) coronet. These symptoms have disappeared again. We will see where this leads us.

      As far as the bloating is concerned, it is a major problem for some. My husband had been on Omeprazole for digestive problems (I suspect too much red wine). He started taking it again, so no problems with the mannitol and gas. He doesn’t drink wine now, as he doesn’t enjoy it. He knows he’s drinking wine, but can’t differentiate between a good one and a bad one. I’m still hoping he may get his sense of taste back. Some have with mannitol. Maybe the infrared coronet may help.

      We have a wonderful neurologist, who we initially met at the Movement Disorder Clinic at the Royal Melbourne Hospital and now see privately. He’s been amazed at my husband’s improvement. We still go to the Movement Disorder Clinic as well, because our neurologist likes their opinion. In fact we have an appointment in July with Andrew Evans, who runs the clinic and is one of the top PD neurologists in Australia. He rang for a phone consult recently and couldn’t believe what we told him. He honed in on the fact that my husband never sleeps during the day at all. He’s up at 7 am and goes to bed About 10.30-11ish. Consequently he now wants to see him.

      What a journey we are on.

      Gwendoline

    • #21172
      Kathy Bettles
      Participant

      Hi! My husband has been taking Mannitol for almost a year and it definitely helps him with masking and falling. We switched brands and those symptoms returned. We went back to the original we bought on Amazon (the cheapest one and has the words Kitchen Alchemy in the title) and those symptoms subsided. Other symptoms, such as freezing and weak voice, have gotten a bit worse, but we will take any help he can get. He started with a teaspoon and gradually worked up to 2 tablespoons a day – mixed in with juice/10 oz water mix.

      I say give it a try. And please keep posting things that work for you. We live in the US and it seems that all they want to do is prescribe dopamine and exercise – which are important, but not always as miraculous as some make it sound. All the things being studied are taking SO LONG even though so much money is being invested. I am glad to see a new protocol being pursued on the UK to speed things up. And I appreciate Parkinsons News Today for being an invaluable resource for the PD community.

      • #21173
        Gwendoline Jakins
        Participant

        Thank you Kathy, I will try your mannitol. I’ve heard this story before. A PD patient was using mannitol from a supplier in the US and bought it elsewhere when it was no longer available from that supplier. He then lost his sense of taste again.

        The discussion that evolved from this patient’s report mentioned the source of the mannitol,as in seaweed, mushrooms etc.

        I’ll try Amazon, if I can get the same one as you. My initial experience in ordering mannitol from Amazon back in 2019 was a disaster. When I saw that the mannitol was coming out of China I wasn’t happy, as we have no idea as to what their controls are like, if any. Anyway it didn’t arrive and I got a refund. No doubt Amazon has a more reliable source now.

        I’ll report back if anything changes.

      • #21174
        Gwendoline Jakins
        Participant

        Hi again Kathy,
        I’ve remembered the supplier in the US that supplied the mannitol that restored a PD patient’s sense of taste. It was Bulk Supplements. They ran out of supplies, and that’s why he changed suppliers.

        The interesting thing is that this company gets supplies out of China, so it could be from your source. A member reported that when he queried why the company says it’s products are American, they said they can do that for some reason none of us could understand. This was reported on the HealthUnlocked site. I’m sure they won’t mind me mentioning that here, as this site is mentioned regularly on that site, along with links.

        Regards
        Gwendoline

        Ps when I looked at Amazon, the only supplier they show is Bulk Supplements 😆

    • #21175
      Thomas Rutschman
      Participant

      Since I live in Europe, I order my Mannitol from Spain (Sosa Ingredients, 08180 Moià, Catalunya).  It sure works for me!

      • #21176
        Gwendoline Jakins
        Participant

        Hi Thomas,
        Sosa is the mannitol we have used all along, but the wholesaler here in Australia has been out of stock and may not bring it in again.

        So I thought that, although it did wonders for my husband, we might try another brand in the hope that he may get his sense of taste back, as a couple of PD people have. I have bought one lot off eBay. My husband has just started using it. Maybe we’ll try Bulk Supplements in the future. Pity about the price. Sosa was so cheap.

        Regards
        Gwendoline

    • #21179
      Thomas Rutschman
      Participant

      Can you order Mannitol made by Sosa from Spain yourselves?   That hasn’t been too expensive, about 30 US$ for 1/2 kg of the powder.

      Good luck!

       

    • #21180
      Denise
      Participant

      What dose are you taking and how often? How does this equate to synthetic dompanine, such as sinemet? I ordered some off the internet for my husband,
      but was concerned when it arrived as a powder in a lab-like container, with
      no instruction. Your insights?

    • #21184
      Thomas Rutschman
      Participant

      I only take a heaping teaspoon in the morning with my orange juice.  I assume a person’s weight would influence the dose.  (I am 5’8″ and weigh 90 kg. ) And as I understand it, the Mannitol helps clean up the alpha synuclein protein clumps in the brain.  And since it is a FDA approved sugar, it is sold as such, so there would be no Parkinson’s instructions.

      Good luck

      Thomas Rutschman

      • #21185
        Gwendoline Jakins
        Participant

        The initial research ( which I got our pharmacist to check) said 1tbs. in coffee. From what I’ve read on forums, people seem to take less and get results. Others get no benefit. My husband takes 1tbs. It’s all trial and error, I guess.

        Regards,
        Gwendoline

        • #21192
          Beth T Browne
          Participant

          Thank you. I have been taking 2 tsp in my coffee and that is all. I knew it could cause trips to the bathroom if taking to much. Last week I upped it to 3. I only weigh 93lbs, so I am careful with most things. But, I have not noticed any change, so we shall see. Depending on things, I may try 1 Tbs down the road. Nice to hear you spoke to a pharmacist.

          Beth

    • #21169
      Robert Li
      Participant

      Hello all, if you’re willing to try mannitol to reduce alpha-synuclein aggregation, you might also want to make sure your vitamin C and glutathione levels are optimal.  Vitamin C and glutathione can apparently help reduce the production of alpha-synuclein, so you won’t be fighting a losing battle using just mannitol.

      From Oligomerization and Membrane-binding Properties of Covalent Adducts Formed by the Interaction of α-Synuclein with the Toxic Dopamine Metabolite 3,4-Dihydroxyphenylacetaldehyde (DOPAL)* – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4646016/

      Taking into account the importance of DOPAL oxidation in the formation of aS-DOPAL oligomers, the effect of the antioxidants ascorbic acid, selegiline, melatonin, trans-resveratrol, mannitol, and superoxide dismutase (SOD) (60 units) was evaluated. We found that ascorbic acid and glutathione are capable of inhibiting the oxidation of DOPAL and diminish the DOPAL-stimulated formation of alpha-synuclein dimers and trimers.

      Glutathione production by cells in the brain requires the amino acid cysteine, found in meat and sulfur-containing vegetables. It also requires good digestion.  I use NAC supplements and digestive enzymes since my digestion is variable.

      Beth, can you name the brand of mannitol made in France and available on Amazon?  Thank you.

      • #21193
        Beth T Browne
        Participant

        Hi Robert,

        The brand I get on Amazon says on the front, “Mannitol Powder and it has a large MB printed under that, then “Mannitol Balance”. Down the front and to the right, it says “Made in France, Packaged in the USA. There is also more info about the ingredients. The net weight is 35.27oz (1000g)

        I only weigh 93 pounds, and have problems with a lot of meds, so I started out with 2tsp. Last week I upped to 3tsp.

        Beth

        • This reply was modified 3 months, 4 weeks ago by Beth T Browne.
    • #21183
      Gwendoline Jakins
      Participant

      Hi Dennis,

      i don’t think there’s any connection between either of those drugs.  Google “mannitol and Parkinson’s Disease “.  A lot of info there, including scholarly articles.  I imagine the trial, which should have been completed by now, didn’t get started due to Covid.  It’s now saying 2022, although that may not be updated.

      You won’t get instructions, as it’s being sold as a diabetic sweetener.  The initial research, which our pharmacist checked out, suggested 1tbs in coffee once a day.  You may need something for gas.  It seems to be a problem for a lot of people and is mentioned in the research.  My husband takes omeprazole, which he’s been on before PD, probably because he drank too much red wine. 🤭.  Now he doesn’t drink wine, as he can hardly taste it.

      Gwendoline

    • #21195
      Thomas Rutschman
      Participant

      Beth,

      If you have bathroom issues, I would cut back on how much Mannitol you take.  And give it a month or two to give results.   It took a while for it to give results my wife reminds me.  The fantastic thing about Mannitol is that it seems to reverse the symptoms of Parkinson’s. There is nothing else that can claim that as far as I can tell…

      Good luck

      Tom

    • #21218
      UMAKANT PANCHOLI
      Participant

      I have purchased Manitol sweetening powder from Amazon. I have not started using it yet as I wanted to know the dosage.  I will start with 1heaping table spoon in my breakfast or in my tea. I will post if there is any change in my PD. Please note that I have stage 1 ideoPathic  PD I do not have any tremor but my hand writing is getting smaller and I have freezing in my legs. I will keep this forum up dated if I notice any changes.

      Kind regards

      Umakant

    • #21226
      Nadine Eidman
      Participant

      I am thrilled to hear about your experiences. Thank you for this forum and to those who are willing to share. Will give mannitol a try and be patient with it. Seems if it works, it takes a few months.

    • #21230
      Thomas Rutschman
      Participant

      Yes, Mannitol does seem to take a few months for it to work.  But that makes sense if it is cleaning up the alpha synuclein deposits.  I do  take vit C as was suggested on this forum. When Mannitol is used in a hospital, it is given by I.V. for example to shrink the size of a brain that has had a concussion.  We are using it as a powdered sugar and is not dangerous ingesting it.  It is  FDA approved as a sugar–used to sweeten chewing gum or for people with diabetes.

       

    • #21233
      Kevin
      Participant

      I graduated from hospice after 18 months – no better but told there was nothing else they could do for me so – as a previous medical provider I started my research – in doing so I found a book called minding my mitochondria by Terry Wahls – she was a VA practicing provider who went from riding her bike 18 miles to work to a WC in 6 mo – it took her 5 years to get out of the WC and start riding her bike again – in it she recommends a strict diet and many supplements – NAC or N-Acetylcysteine is an antioxidant the helps produce mitochondria as well as increase the production of glutathione – glutathione is the master detoxifier in the brain – antioxidants like vitamin C and many others help reduce ROS or reactive oxygen species – but I believe the major affect is producing mitochondria – there are between 1 & 3K in each cell in your body – alpha synuclean affects pretty much every cell so taking it at the recommended dose of 1GM 3 times a day has been one of the things I do for years now – 6-7 since I got off hospice – I have a Parkinsons Plus disorder called MSA or Multiple systems atrophy – I also found mannitol helpful – I took it as recommended above but the brand I got included caffein in the ingredients as the studies I found included that – I also found a study that reversed disease in 5 of 7 patients using IV Immune Globulin – I’ve been getting that every 4 weeks for years as well – I take a boat load of supplements but do not take sinemet or any kind of levo-dopa – when I was first diagnosed with Parkinsons I tried it for several months on escalating doses and knowing the long term risks of continued use and no benefit decided to stop it – at one point I was on 3 drugs to raise my blood pressure – I am now on only one – I also found a study from Korea indicating that the reportedly dead neurons in the substantia nigra – mid brain – specifically the caudate nucleus and putamen are not dead but in a senescent state and or asleep waiting to be awoken – they reversed disease in mice and I believe I am doing the same – I can – with a cart – play 18 holes of golf – last summer I walked 9 holes and hope by the end of this year to walk 18 on relatively flat courses of course – I believe and this is my personal opinion – that this disease can be reverse and most would say I am living proof of that – I still have issues and diet clearly is a major component – barrier disruption and disbiosis are major players in this and altho my earlier diet was as recommended by Dr. Wahls I have since gone more ketogenic as sugar – not to saw mannitol but most others sugars – lots of different names for that – produce insulin – insulin is toxic to dopaminergic neurons while ketones or beneficial – ketone strips are available at most pharmacies and super stores – I would also suggest PH strips as most will be found highly acidic – there are various ways to alkalinize your ph – everyone should also be tested for their vitamin B12, D3 and magnesium levels and adjust accordingly – I researched vitamin D3 heavily and found that the recommended level is artificially low – everyone should be at or above 100 – those are just some of the things I’ve done for myself and are in no way medical recommendations – I will included my name – website and a few links in another message as I think they might be deleted from with this message and I wouldn’t want that – hope is available to us all if we look for it – peace and be well to all – sincerely – Kevin

      • #21270
        AK Jones
        Participant

        I appreciate you sharing your knowledge, I will try many of your routine supplements, I would love to to be able to walk  to enjoy growing a vegetable garden.  My Parkinson comes from being sprayed with agent orange (USMC combat in Viet Nam), I have been diagnosed as Stage 3 Parkinson.  It is awesome that you are no longer in hospice. God Bless.

        • #21339
          Kevin
          Participant

          I too am a vet – 100% Service connected altho they do not consider those on the DMZ in Korea agent orange victims – surface contamination for 10-15 years while digging will get you Agent O for over 100 years – all those fox holes – spraying around camp blah blah blah – you prolly got 100% automagically – I had to fight with them for 8+ years and now – well – like I said – I can walk short distances – my balance isn’t very good – my blood pressure remains low with the meds but I don’t want to take them all – my feet swell up like balloons – anyway – there is a lot to do for detoxing your entire body – figure out your transit time and if its less than 24 hours start a detox regimen – don’t buy a liquid you drink – it takes lots of things but once started you need to bind the toxins with activated charcoal or you will reabsorb the toxins and get sicker – that is the short story – the long one will be in a book some day!

        • #21340
          Kevin
          Participant

          Oh – be careful with activated charcoal – it can bind medications too so take those when your not taking the charcoal!

    • #21235
      Kevin
      Participant

      while my second post remains in moderator hands – I will add that – there is a bunch to know about the immune system and the gut brain connection – the lymphatic and the Glymphatic systems and how helping them drain properly will help the immune system with detoxification which is also something we all should know about – I could go on for days as its taken me several years of arduous study to amass the information in my head – much of which is posted at the sites linked in my second post awaiting moderation – but again – research and consultation are mandatory to make progress instead of standing still which frequently results in sideways falls – so – keep moving forward – the person that mentioned the genetic form represents less than 10% of cases – the rest are idiopathic and as Dr. Bruce Lipton – a genetic/cellular biologist who studied stem cells in the 60s reports that disease is much more environmental than we have been told which suggests that we need to take a good look at our water source – our air and our food – glyphosate is deadly to our gut bacteria – Monsanto knew it when they applied for approval by the FDA and didn’t say anything about it – much more to say about that but if your eating GMO foods your eating roundup – poison to all beings be they anything with the shikimate pathway – just food for thought!  I guess I have more energy today than usual and with the unprecedented heat up here in Washington I couldn’t play golf so – here I am – any replies I will get to as time/energy permits!

    • #21237
      Charles H Levin
      Participant

      Thanks, Thomas, for posting … I am about 14-15 years in with PD but only diagnosed two years ago …. and, thankfully, still very mild symptoms (long story about that) … Meanwhile, I have been aware of the Mannitol discussion for some time … my doctor pooh-poohed it, but I remain curious and after reading these posts and an article I’m providing a link to below plan on trying …

      My girlfriend found the aforementioned article about the science behind Mannitol on PNT … https://parkinsonsnewstoday.com/2020/07/29/the-science-behind-mannitol-how-a-simple-sweetener-may-help-parkinsons-patients/

      The Israeli scientists in this story have a venture called CiniCrowd, which seeks to address many solutions to a variety of diseases that are being ignored by the pharmaceutical industry … the link to CliniCrowd is … https://clinicrowd.info/

      I plan on registering to find out what I can … Particularly, what brand were they using? What dose? Should you take this on an empty stomach? That last one raises the question of whether it needs an empty stomach to cross the blood brain barrier (like Levadopa) to be truly effective.

      For that matter, to those here who said they didn’t get any results, did you take it on a full stomach or with some food at all? And to those who experienced a reduction in symptoms, did you take it on an empty stomach?

      cl

    • #21239
      Charles H Levin
      Participant

      Correction to my last post … I apparently missed a critical sentence in the PNT article … but Mannitol has no problem crossing the blood-brain barrier …

      I will would like to continue hearing experiences here and whether anyone plans on registering with CliniCrowd …

    • #21240
      Thomas Rutschman
      Participant

      I would have registered for the clinical trials, but exchanging e-mails with the scientist in Israel I realized I was no help.  The only tests given me by the neurologist over ten years ago was: take this medicine, if it makes you feel better you have Parkinson’s…  So there is no “before” I can compare with the “after”.  So those of you who do feel Mannitol is helping should definitely sign up with the CliniCrowd.

      Don’t give up!

       

      • #21241
        Beth T Browne
        Participant

        I was diagnosed a year ago this month. I am pretty sure I had it the year before, as I had serious sleep issues and my right hand shook badly. I thought it was too much thyroid. I went to a movement doctor, had an MRI, and said I had Dopamine lacking in my brain.

        I am seeing a new doctor in July. I won’t go into all the reasons why, but one is, I get no help from her. I could not handle the usual prescription everyone gets. Made me so nauseous I had to stop. I am petite, weighted 98 but lost down to 93 after that. So, there is nothing that can be done? I have been trying the Mannitol thing for about six months. I am not worse, but the tremors are still there and the sleep has not changed. I did take a tsp more starting about a month ago. So maybe. I always read what people share that they have tried. I get more info from them then I did from her. I also am wondering about the items you can stick on your body Can’t bring up the name right now. I see it helped MS patients, but have not seen anyone with PD rave about them. Also, I read where the antidepressant for PD is Agilent. I asked my new Primary yesterday if he could prescribe that since he thinks I might need an antidepressant. I don’t think I have that problem, but I am willing to give anything a try for sleep. He said I needed to discuss with my Movement doctor. Has anyone tried that? Thanks for sharing your experience Thomas. I very much appreciate people taking time to do that.
        Beth

    • #21242
      Denise
      Participant

      Dear Beth,
      My husband did not take the usual and customary meds to start with. We wanted to postpone the inevitable inefficacy of the meds, not to mention the undesirable side effects of dyskinesias. So here is what we did: he took 1 mg of rasagaline (brand name Azilect, 1mg/daily) and did one half hour of aerobic exercise daily, keeping a sustained or elevated heart rate up for 20-30 consecutive minutes each morning. At first, the exercise brought about undesirable extreme tremors while exercising, but that soon passed over a period of 2-3 months, when he got more fit and recognized how much exercise performed like medicine; for stress management and for reducing symptoms. That lasted 3 years before he went on to sinemet. Fast forward 15 years, and he receives leg & foot botox shots to turn down the dyskinesia movements and toe curling. This is not working, as we know its a side effect of the sinemet over time. We are presently investigating DBS surgery, which would allow him to reduce the amount of his meds and thus the dyskinesias. Wishing you the best. PS- We’ve been reluctant mannitol takers, the bottle I purchased from Amazon says R & D use only, on the label. So, I’m watching these posts to also check that out.

    • #21243
      Barry Block
      Participant

      I have to agree with Denise. Exercise is the very best thing that helps the symptoms of PD. I exercise 5 days a week with virtual classes (both aerobically and with 5 lb. weights). I have not increased my sinemet CR in 2 years and have no dyskensias or freezing. My balance is better than most 72 year olds and my cognitive abilities are only slightly diminished.

      I’ve tried all sorts of natural meds (fava, macuna, Lion’s Mane, pre- and pro-biotics, and mannitol) but nothing helps as much as plain old exercise of the mind and body!

       

    • #21245
      Beth T Browne
      Participant

      Thanks Barry. I guess I need to exercise more. At 84, not as motivated as I was back in the day. A year after I had breast cancer, and surgery, I went to the gym faithfully, for 20 yrs, and did the weights and treadmill. The last trip to the gym was when I was 73. I then made sure I was walking a lot. Since I moved three yrs ago, I have walked but not every day. I am on my feet daily, cooking, doing my laundry, grocery shopping, etc., but I need to start walking more faithfully. I am two yrs in with PD. I have tremors, terrible sleep problems, and when I tried Rytary, the little anxiety I had got worse. My doctor said it did not cause anxiety. I told her a pharmacist said it could, and the side effects said it could. Even my new primary doctor said it could, and she got upset with me when I understand it can, and she got rather not so nice saying I was calling her to be untruthful. I know people respond differently to a lot of meds, etc. She didn’t believe me, so I see a new doctor next week. She has done nothing for me in a year except hear me talk about how I feel. I don’t have dyskinesias. I have a little balance issues. If I could get more sleep, I think I would not have so much fatigue. But maybe. I hear others talk exercise, so I will start that today, being more faithful.
      Beth

    • #21246
      Charles H Levin
      Participant

      Beth,

      Exercise can not be discounted at all. My doctors now believe that regular cardio workouts three or four days a week (for more than 30 years) may have played a role in delaying a variety of symptoms … therefore delaying a complete diagnosis until I was about 12-13 years in.

      My doctor (quoting a widely revered study) challenged me to take my cardio workouts up a notch … Doesn’t matter which machine, but I use an elliptical … the key is going at 80-85 percent of your max heart rate for 30 minutes continuously … To do this, I’m on the elliptical for about 40 minutes … it takes about seven to eight minutes to warm up, then I turn on my Apple Watch to monitor my heart rate … I’m almost always in my target zone by the time I turn it on … after 30 minutes, I cool down for about two minutes … I do this four days a week … (your max heart rate is 220 minus “your age”) …

      Three days of the week, I use TRX straps and free weights … I also do yoga every morning (which is on a brief hiatus now as I’m recovering from knee surgery) … I did the boxing for some time and left after I thought I’d injured myself … it was arthritis so I plan to return shortly …

      Although there is no definitive study on diet, my docs all recommend at least a Mediterranean Diet or Plant Based … I’m mostly doing the latter but not really vegan … I still eat hard boiled eggs and yogurt and seafood occasionally … even meat but very rarely …

      All this together … and I’ve lost a lot of weight … my symptoms are not really threatening my quality of life … I did have to give up playing music which I did professionally for about 30 years … that was a drag but life opened many other doors for me … I have a tremor in my left hand and am a bit slow at times … but the Sinemet has helped with both … I’ve been on the same dose for about a year with no side effects …

      That all said, I’m still interested in trying Mannitol … I tried registering on CliniCrowd, but never got the email to complete the registration …. I can see on the web site that once you are registered, you can get information about dosing (which appears to vary, I think, based on size and weight) …. I’m particularly curious because I learned that it’s in sugar-free gum, which I’ve chewed for years and am now wondering if it also played a role in delaying my symptoms …

       

      • #21247
        Beth T Browne
        Participant

        Hi Charles,

        Thanks a bunch for your newsy note. Good to know those 20 yrs were worth it. I have osteoarthritis and osteoporosis and that is why I stopped the gym. I tried going not doing the weights, which the doctor said to stop, but I had a routine for 20 yrs, and not being able to continue, I guess I got disappointed, and thought I would just walk. But I did not do that regularly like I am almost doing now, since I moved. I do climb 3 flights of stairs at least once a day, 32 steps. Sometimes I get in climbing twice. I think I will definitely go for that, as I have a leaky heart valve, and the doctor would like to see me do that. I guess I have not realized I am as old as I am. I am concerned about my memory, short term, so I will discuss with the new doctor. Most people can’t believe I am as old as I am when they see me, and I guess that is good. Being petite probably helps. I think you are to be admired, greatly, for all you do. I am not sure I could do that now, but glad you are feeling so much better. Keep up the good work on your weight also. Thanks again for taking time to write.

        Beth

    • #21269
      AK Jones
      Participant

      My cons on Mannitol is the taste is awful, I took it for only two weeks(tablespoon)  in my morning coffee and heavy whipping cream. It took three packets of artificial sweeter to be able to tolerate the taste. It overshoots my diet of less than 30 carbs a day.

      I will give it another try after I loose 50 lbs.

    • #21281
      Thomas Rutschman
      Participant

      My brother a general practitioner doctor reminds me that one should start off gradually as well as taper down if one is quitting. He had also researched the gut-brain connection and suggested intake of acidophilus.

    • #21284
      Beth T Browne
      Participant

      Thanks Thomas for this info.

    • #21285
      Beata
      Participant

      Hello All, you are so inspiring and brave.
      I was diagnosed five years ago and feel good. I take Sinemet and Azilect and my symptoms seem to be currently controlled. I exercise daily, am learning Spanish, try to do new things to keep my brain off balance, have begun painting, and take handfuls of supplements. I have two questions. Firstly, I do plan on starting mannose, but I am amazed that you all are able to tolerate coffee. I loved my coffee fix, but I had to give it up because it gave me major shakes. How do you do it? SO envious.

      Second, given the fact that the biome is off kilter in Parkinson’s, what do you take in order to adjust the gut biome? I’ve heard acidophilus and probiotics and probiotics. Does anyone have insights?

      thankyou thankyou thankyou

       

       

      • #21295
        Thomas Rutschman
        Participant

        I have tried this probiotic  for a few months, which a  South Korean group is working with called Lactobacillus plantarum PS128 as effective for Parkinson’s.  I have been able to get it via France, but I think you can get it in the US as well.  My brother, a doctor, researched work people had done on acidophilus and thought that it sounded good as well.
        <div>If you know how to make yoghurt once you buy the living bacteria of the first probiotic I mentioned, you can continue making your own if you want to save money.  It is naturally in foods such as sauerkraut, Korean kimchi, pickled cucumber…</div>
        <div></div>
        <div>I will continue with this probiotic and acidophilus, though I can’t really say I feel any different.  But it can’t hurt, I figure.</div>
        <div></div>
        <div>Good luck!</div>
        <div></div>
        <div></div>

      • #21310
        Thomas Rutschman
        Participant

        Learning a new language like Spanish is a good way to push brain problems into the future.  The new language you learn is put in a different “brain compartment” so you keep your brain more active.  Your name, Beata, is Spanish as you probably know, meaning “Blessed”.

        Have a good day!

         

      • #21334
        Kevin
        Participant

        there are many things to use to fix the gut lining and the gut bugs – there are good bugs and bad bugs – the good ones make most of your dopamine and all of your serotonin among everything else your body needs to work correctly – when it doesn’t get what it needs it starts to malfunction – feeding the good bugs with pre Biotics which is simply lots of cruciferous veggies – different colors – lots of variety – must be organic and even then some will have glyphosate or preservatives if you buy it in the bag – they use lots of tricks to get sugars and other harmful stuff into you – artificial sweeteners are Neuro toxins like inhaled or aerosolized chlorine and fluoride – water filters and shower filters if you don’t have a whole home filter R/O only – adding minerals to filtered water is essential – selenium chlorella and spirulina help with ROS (reactive oxygen species) which affect every cell in your body as does Alpha synuclean – Manitol helps as an over the counter cell wall permeability assistant – in Parkinsons the A-Syn clumps in the cells and destroys the mitochondria while make the cell wall impermeable – there are so many things you can do to help yourself besides exercise which is mandatory but – if you don’t know your B-12 level – your D-3 Level – your Magnesium level – all of these are low in Parkinsons patients – the vitamins like C you cannot take too much – all the antioxidants are needed but especially NAC – it helps increase mitochondrial production and glutathione production which is the major brain detoxifier – helping the Glymphatic lymph system in the brain to drain as well as lymph brushing in general with good hydration is necessary – man – I could go on forever – I just wanted to comment on the gut persons question – yes lactobacillus is one of the gut bugs but there are thousands – there are currently about 5 of the good gut bugs absent in Parkinsons patients ramnosis comes to mind as one (sp) this is pretty common knowledge in research circles – if you use scholar.google.com you should be able to find everything you need to know about fixing the gut – replenishing the good bugs and beating back the bad ones – balance is key with all of them – they’re DNA out numbers ours 99-1 so be kind to our gut bugs and they will be kind to you – getting tired since I’ve been writing most of the day while trying to get thru email and digitizing albums so gonna say good day to you all – think that it took you a lot of years to get here – I expect to live another 30 years or so – I started reversing disease and leaky gut and dys-biosis and neuronal senescence of the dopaminergic neurons 6-7 years ago – after getting off hospice – I started playing golf again last year – I turned 64 last month – everyone calls me a walking miracle and I say it was a miracle I survived life to live long enough to get sick and then live long enough to get better – still working on the last part!

        • #21338
          Kevin
          Participant

          come on – google scholar link gets the whole post censored?

    • #21316
      Ceci Bennett
      Participant

      Sounds good but my husband with PD has a pacemaker. I need to make sure mannitol is ok’ed by his cardiologist, besides his neurology… Ceci

    • #21335
      Kevin
      Participant

      Gesus – my post with a link to google scholar is awaiting moderation – if it doesn’t get posted it will be two out of 4 posts censored in the last week?????

       

      Guess its time to leave this place!

       

    • #21337
      George Sharp
      Participant

      Hi my name is George I am interested in your experience with Mannitol it is good to hear that it makes a bit of a difference I was wondering where you bought yours from I live on the gold coast in Australia  and it is very expensive to buy

    • #21342
      Thomas Rutschman
      Participant

      I order  my Mannitol from Spain.  500 gr costs 24 euros.  Google it, it’s called Sosa, out of Moià in Catalunya.  Good luck!

    • #21234
      Kevin
      Participant

      Follow up to the above reply re mannitol with some links and info for those who wish to peruse! Sincerely,Kevin S. Lewis, Medically Retired Veteran

      Whats included in this post is not medical advice and should not be construed as such – these posts are for informational purposes only – all changes to a treatment plan should be under supervision and consultation with your chosen medical provider!

      PS  Item’s posted/sent may or may not be mine and I may or may not agree with them.  I am passing along things that make me think – I hope they do the same for you.

      View – https://groups.io/g/DietAgainstDisease

      Join – [email protected]

      Post/Reply – [email protected]

      Go to < http://www.lewboski.net/ &gt; for more information about Lewboski and what he did before getting cancer!

      “We are not human beings having a spiritual experience.  We are spiritual beings having a human experience.  We are each of us angels with only one wing, and can only fly embracing each other.”  Pierre Teilhard de Chardin, (1881-1955)

      “There are two ways to be fooled.  One is to believe what isn’t True;  the other is to refuse to believe what is true.”  Soren Kierkegaard, Philosopher (1813-1855)

      “Every day you may make progress.  Every step may be fruitful.  Yet there will stretch out before you an ever-lengthening, ever-ascending, ever-improving path.  You know you will never get to the end of the journey.  But this, far from discouraging, only adds to the joy and glory of the climb.” – Sir Winston Churchill, “from the essay ‘Painting as a Pastime’, published at the end of Thoughts and Adventures.”

    • #21359
      Lee Ritsick
      Participant

      I bought Mannitol from Amazon.  Around $16.  So far, I have only used it 2 days but I already notice a change.  I intend to keep it up.

      • #21362
        Thomas Rutschman
        Participant

        Sounds great!  It took me longer than that to feel any changes, but I’ve heard others who say they felt a difference after a few days as well.  Keep it up!  (What brand of Mannitol do you use?)

        Tom

         

      • #21363
        Barry Block
        Participant

        Please keep us posted.

        • #21383
          Lee Ritsick
          Participant

          The label says super mannitol, dietary supplement (sunshine valley foods)Canoga Park, Calif.

          My symptom of relaxing tremor seems less occasional.  My leg tremor seems less frequent.

          I am encouraged.

    • #21360
      Denise
      Participant

      Thomas R- Can you please tell us where you purchased your mannitol? Can you send a link and also tell us your dose? This would be much appreciated. My husband is currently entertaining thoughts on DBS surgery, so if we could hedge that; it would be great! Thanks.

      • #21361
        Thomas Rutschman
        Participant

        I get my mannitol from a firm in Spain called Sosa.  I take a heaping teaspoon with orange juice every morning.  But I would start with half that for the first few days, to see you tolerate it.  Mannitol is a sugar used especially for diabetics, and can be bought through Amazon I understand.

        Good luck!

         

    • #21364
      Beth T Browne
      Participant

      I have been taking 2 teaspoons of the Mannitol I purchase from Amazon for about 6 months. I noticed the 10th of this month, today is the 13th, my tremors were better. I was getting food to my mouth with out it falling off the utensil. I only weigh 93 pounds, so I didn’t not want to take too much. I had to stop the Leva/Dopa last year as it caused too much nausea, and I went from 98lb to 92lb. I need to gain, not loose. Not sure if it is the Mannitol or what. Time will tell. I put it in my coffee in the morning. I only drink one cup.

    • #21370
      Thomas Rutschman
      Participant

      Sounds good Beth.  I hope you will see other things improve as well.  But do  remember when you start or  stop taking a particular medicine you should do it gradually.

      Blessings.

       

    • #21371
      Charles H Levin
      Participant

      I just started taking it last week. I started with a quarter teaspoon for the first three days, then moved up to 3/4 teaspoon … a few days later, I tried half a teaspoon … at this dose, my stomach made all kinds of interesting sounds (some like a synthesizer keyboard) … no upset stomach problems, but I decided to tack back to 3/4 teaspoon for a few more days …

      No noticeable changes in my symptoms (but I didn’t expect any this soon) but my bms are a lot smoother, which was welcome …

      Has anyone else here gotten on to CliniCrowd? I managed to get on there, but found that it can take five minutes for the log in and that much time to shift pages once inside …

      I did find some info about a variety of questions (product recommendation, dosing, effectiveness), but many answers were intentionally vague … “everyone  is different” …

      After reading different product reviews on Amazon and considering remarks in this thread, I decided to go with Bulk Supplements … honestly, the decision was arbitrary as I couldn’t see any specific product getting more better reviews than another … On Amazon, most reviews indicate that the purchases are for people with PD … Most reviews are positive …

      Curious (and eager) to know others’ experiences …

      cl

       

      • #21373
        UMAKANT PANCHOLI
        Participant

        Hi Charles

        How did you take the mannitol. Was it with water, juice, it in your tea or coffee or with your bowl of cereal.
        I have started with  3/4 heap full tea spoon in a bowl of cereal with  oat milk and semi skimmed milk mix.  Touch wood I do not have any problems with the stomach. I have been trying it for a week and noticed no change. I will try one heap full tea spoon from next week.  I will keep every one updated.  I purchased the mannitol from Amazon in UK.  It is a product of Spain.
        All the best with your trial.

    • #21374
      Charles H Levin
      Participant

      Hi Umakant …

      I take it with water in the morning, right after taking my Levadopa … From reading comments here and Amazon reviews, it may not affect symptoms immediately … some folks report waiting a month or longer … patience and persistence appear to be the key here …

      Which raises a question I forgot to put out there (and that I could not find any info for on CliniCrowd) … For those who have taken Mannitol for some time, does anyone know if there’s any problem taking it at the same time as your medicine? Or with food?

      cl

    • #21375
      Thomas Rutschman
      Participant

      Dear Charles:

      Interesting that you mentioned stomach noises.  Mine does make noise too, but it did so before I started taking Mannitol (I think!).  I take my Mannitol with my medicines–a few minutes after the Levodopa and others and half an hour before breakfast.  I don’t know if it would make any difference for me.  I haven’t felt the on/off periods others suffer from, and  I’ve been known to forget my evening pills until it is time to eat and it doesn’t seem to matter a lot…

      Stay in touch!

       

       

       

    • #21376
      Charles H Levin
      Participant

      For now, I’m taking both meds and Mannitol about 1-2 hours before breakfast … partially because you need to keep food away from Levadopa for at leat 30 minutes and also because my breakfast is a smoothie and I can’t operate the blender until my girlfriend is awake … lol …

      How long ago were you diagnosed? And how long after that did you start taking meds?

      cl

    • #21377
      Thomas Rutschman
      Participant

      About ten years ago I was diagnosed with parkinsonism-but I had it years before without realizing what it was.  I remember thinking “if this is how it feels to get old, it sure came suddenly”.

      I live in the sparsely populated north of  Sweden, and the neurologist watched me walk and said I had Parkinsons if Levodopa made me feel better!  So I started on medicines right away.   I wanted a more thorough check up so I asked to be sent to the University hospital, but they messed it up and sent me to the district hospital.  That doctor agreed with the diagnosis, so I quit trying for something more exact.

      At least in Sweden there is a yearly maximum for fees for doctor visits and medicine, so I consider myself lucky!

      Blessings.

       

       

       

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