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  • thomas-rutschman

    Member
    January 11, 2024 at 12:58 pm in reply to: Probiotic could ease Parkinson’s symptoms

    About PS128. In France it is Neurobiotique from Synergia which markets the lactobacillus plantarum PS128. And it has to be refrigerated as soon as you get it.

    About Mannitol. Like prunes which has a sugar the body cannot digest Mannitol is a sugar that the body can’t break down. Users usually complain that it gives a loose stool when they overdo it. I take 1-2 teaspoons in the morning and that usually is enough to avoid constipation for me. I am a firm proponent of using Mannitol since it has really made a BIG difference for me. When I wrote about Mannitol in the Fox forum, I wrote that Mannitol gave me my life back! I think that it is the most important ingredient in my Parkinson remedies box! If I had to choose only one thing to use against my Parkinsons, it would definitely be Mannitol. I think I have been using it for three years now and have felt that most every symptom has improved. For example: my voice has gotten stronger and clearer; constipation is seldom a problem; my balance is better; I sleep like a baby; I am less stiff; no longer have cramps in my legs; I never did have the Parkinson shaking; I walk almost normally; my poker face has regained most of its expression; my handwriting is now normal size now; no problem with concentration; etc. In a few days I am going to see a new neurologist and I am almost afraid that he will tell me I don’t have Parkinsons (I have had it since 2011). Though Mannitol doesn’t seem to be the solution for everyone, it has worked on many of the people I have shared my experience with it. Hospitals use Mannitol through an IV when the brain is enlarged because of a car accident or something. We are using Mannitol as a powder mixed with water or juice. It is FDA approved (as I understand) as a sweetener for people with diabetes. Even chewing gum uses Mannitol as a sweetener. But there isn’t much scientific proof that it works. So it is anecdotal proof we have. No big pharmaceutical company wants to waste money doing the double blind placebo tests when the powder can be bought on Amazon or through SOSA in Spain for 10 to 20 US dollars for a pound of it!

    Hope this helps!

    Tom

  • thomas-rutschman

    Member
    October 26, 2023 at 4:08 pm in reply to: Levodopa Reduction?

    My diagnosis came 11 years ago and after the first few years I have had pretty well the same amount of levodopa. I began to wonder about side effects, though, when I read that levodopa can give swelling of the legs–something that has bothered me for years!

    However what has helped me most is the sugar Mannitol which has made quite a few of my symptoms to disappear. It seems like few Parkinson patients know about it. My voice has gotten stronger, my writing increased in size, my arms swing again when I walk, etc- etc. I still have stiffness, but I am much better than I was. If I would choose between taking levodopa or Mannitol, I would definitely stick with the Mannitol. I have taken it for 3-4 years now, 1 tsp in the morning.

    The American FDA recognizes it as a supplement for people with diabetes.

  • thomas-rutschman

    Member
    July 20, 2023 at 9:53 am in reply to: Should you disclose PD diagnosis to an employer?

    I chose to tell my principal (I am also a teacher) and colleagues about my Parkinson’s diagnosis.  That gave me the “right” to do unusual things (like take a  cat-nap between classes) or get a schedule adapted to my limitations.  But I live in Sweden where it is hard to fire a person.  If I lived somewhere that it is easy to get fired, I might not have been so open.

    In the years since I retired I actually got a lot better thanks to taking a teaspoon of powdered Mannitol (a sugar alcohol) in my orange juice every day.  So my Parkinson’s isn’t as noticeable and most of my symptoms have become less intense. (Mannitol prevents clumps of the protein α-synuclein from forming in the brain — a process that is characteristic of Parkinson’s disease.)

    Good luck!

     

     

     

  • After 11 years living with Parkinson´s I shouldn’t be surprised at how many symptoms are related to PD.

    I am now convinced that hammer toes belong to the list.  As well as double vision, cramps, trembles on the inside of the body, trouble turning in bed, stiffness, easily feeling stressed so that even though you don’t have trembling normally you do then! Too much saliva, too little saliva, phantom smells, “bad”  posture, constipation.  Clumsiness that makes it hard to navigate in a  crowd without bumping into someone else.  Soft voice. Micrographia–my mother had PD and this is one of the symptoms we noticed.  She wrote so small that she couldn’t read what she wrote.

    For some of these symptoms I have found some remedies.

    Constipation= Microlax (in Europe where I live) it’s a mini enema.

    Cramps = take magnesium

    Turn in bed = put a silk section over your bottom sheet so you slide better

    Soft voice = go to a speech therapist; join a choir!

    Avoid being dragged into stressful situations = admit that stress if bad for us Parkies!

    Apathy, feeling you can no longer contribute to society meaningfully = keep on doing the things you like to do. (For me that is woodworking and doing volunteer social work.)

    And Mannitol has helped me get rid of quite a few symptoms, despite my new neurologist trying to convince me that it doesn’t help.

    Have a Merry Christmas!

    Tom

     

     

     

     

     

     

     

     

  • thomas-rutschman

    Member
    December 22, 2022 at 10:08 am in reply to: Early signs and symptoms

    My diagnosis came 11 years ago.  A neighbor whose father had PD told me I was walking like he did, shuffling my feet.  When I called my brother who is a GP doctor, he immediately agreed with my neighbor.  Since we zoom once a week he told me he had seen that I had very little facial expression and he should have put 2+2 together.

    Stiffness, poker face, writing terribly small were  the first signs of PD.

    Now when I meet someone who obviously has PD I wonder whether I should check to see if they know they have it.  But I discovered people don’t always want to know!

    Sincerely

    Tom

     

     

     

  • thomas-rutschman

    Member
    December 13, 2022 at 9:36 am in reply to: Are there gadgets that help you to manage PD?

    What I use that makes my life easier is a piece of silk cloth which I put in the middle of my bed, tucked in on the sides.  With my silk Pj´s I then have a much easier time turning at night.  Any cloth which is “slippery” would work.  I have sometimes used a piece of a shiny curtain!

  • Handwriting becomes small.

    Voice becomes softer (though you may not notice that  yourself).

    Poker face..no expression.

    One hand quits swinging when you walk.

    Numbness in  your feet at  night, or feeling ants in your feet.  Probably due to medicines which make you lose magnesium and potassium (medicines which lower  your blood pressure).

    Tired during the day..easy to fall asleep.

    Constipation.

    There are more symptoms.

    Does anyone feel that the medicines or  PD give you seeing problems?

     

    Hope this helps.

    Tom

     

  • thomas-rutschman

    Member
    January 20, 2022 at 12:18 pm in reply to: Parkinon's impact on sleep and dreaming

    I have had Parkinson’s for 11 years.  I used to have vivid dreams of animals attacking and would kick to save my wife from their attacks. We have a double bed, but with single top sheets. So my legs would get wrapped in my sheet, so I never managed to actually kick her.

    But this is one of the symptoms that disappeared when I started taking a teaspoon of Mannitol each day.  I also sleep better and seldom have cramps anymore.  Mannitol is a sugar used in desserts for diabetics.  So it is not dangerous.  Try it.

  • thomas-rutschman

    Member
    December 30, 2021 at 9:32 am in reply to: Best Mattress for PD?

    Dear Bari,

    More important than the mattress is having a “slippery surface” that you sleep on to assist in turning over. I bought som satin/silk pajamas, and found some satin curtains at a second hand store. Then I cut a strip long enough to tuck under both sides of the mattress on top of the bottom sheet and 50 cm wide (1,6 feet). Without it I would have a hard time turning in bed at night.

    Good luck!

  • thomas-rutschman

    Member
    December 21, 2021 at 1:18 pm in reply to: Light therapy

    I live above the Arctic circle, with virtually no direct sunlight for a few months of the year (like now!). Light therapy helps people who feel depressed by the lack of sunlight. When I first moved here I heard that some hospitals gave light therapy. But that was a long time ago. I did pick up a lamp which has the right UV and my wife uses it when she paints in the wintertime to get the right nuances.

    In Russia above the Arctic circle school kids walk through a light tunnel every so often I have been told by people who grew up in Murmansk.
    I have never heard about light therapy being specifically used for Parkinson’s. But if you are feeling “blue” give it a try! My idea was to use it when I was reading–but I never got around to doing that!

    Blessings,

    Tom

  • thomas-rutschman

    Member
    December 14, 2021 at 3:00 pm in reply to: Where do you live?

    I grew up in Montevideo, Uruguay but have lived above the Arctic Circle in Jokkmokk, Sweden,  Tonight it is -17  degrees Celsius, and a few weeks ago it got down to -36!

  • thomas-rutschman

    Member
    October 26, 2021 at 11:42 am in reply to: Flu shots; your thoughts?

    I get a flu shot every year and have had no side effects at all, despite having Parkinson’s.

  • thomas-rutschman

    Member
    October 5, 2021 at 12:53 pm in reply to: Mannitol Updates? Does it even taste sweet?

    To Kate I would say that with one month of Mannitol you have hardly given it a chance to work. Try to find a dosage you can handle and stick it out a bit longer. Good luck!

  • thomas-rutschman

    Member
    September 30, 2021 at 2:43 pm in reply to: Mannitol Updates? Does it even taste sweet?

    I am glad to hear that others have had a good experience with Mannitol, too. I have been taking it for 11 months now and I still feel it has given me back my life. I have had Parkinsons since 2011 and nothing else I have done has had the effect that Mannitol has. It has actually turned back the clock. I wrote earlier about how it gave me back my swinging arms, got more facial expression, can write large letters and its legible. I am less stiff and overall feel better. I recently realized that my taste was back. I can’t guarantee that it will continue to work for ever or for everyone.
    But this is as close to reverting the symptoms back as I have heard. Best wishes to anyone who tries it.

  • thomas-rutschman

    Member
    September 14, 2021 at 3:20 am in reply to: Probiotic could ease Parkinson’s symptoms

    Thank you Charles for sharing about how Mannitol helps you. I just came back from a trip to see a daughter and her family, and I forgot to take my Mannitol along. I was gone five days without the positive effects of Mannitol disappearing. Which tells me there has been some major repair-work in my brain, cleaning out the Lewy body clumps and reversing some of the damage done. I don’t know for sure, but it has clearly been helpful for me.

    Thomas Rutschman

  • thomas-rutschman

    Member
    September 7, 2021 at 10:03 am in reply to: Probiotic could ease Parkinson’s symptoms

    I was diagnosed with Parkinsonism in 2010 and have tried a bunch of things besides the standard medicines. Nicotine patches like they do in France. Coenzyme Q10 like they do in the US.

    I have been using Lactobacillus plantarum PS128. Since it is a living culture, you can make your own. So I make “yoghurt” and eat it for breakfast. I eat about 1 cup in the morning, but even though I have been doing it for several months I have to admit I miss some days. I can’t tell if it helps or not–so I will keep making my own, which means I don’t know the potency of what I am getting. I really do believe that the gut and the brain effect each other, so I am not giving up.

    One reason I haven’t felt the need to take the PS128 regularly is that for me Mannitol has given me my life back. Just the other day I suddenly realized that my smelling had improved a lot… I had already noticed things like my hands swinging again when walking (I haven’t done that for ten years!); my wife commenting that my Poker-face was significantly better; my handwriting has gotten normal size again and I can actually read what I write! I feel a lot less stiff–so I have dared to go out into the forest to pick bilberries (living in Sweden where we have the right of public access, one can pick wild berried in any forest). I thought that activity was off the books for me since a year ago I tumbled while I picked berries, so I thought I would have to give it up.

    I have been taking 1 teaspoon a day of Mannitol for 10 months now. It took awhile for it to work, but even though the experts say there is no cure for Parkinson’s, this sure reduces the symptoms.

    Good luck with the PS128!

  • thomas-rutschman

    Member
    August 5, 2021 at 1:56 pm in reply to: Do you have odd dreams?

    Good luck with the Mannitol. And with the dreams!

  • thomas-rutschman

    Member
    August 5, 2021 at 10:49 am in reply to: Do you have odd dreams?

    I understand it is quite common for those of us who take Parkinson’s medicine to “act out our dreams”. Earlier on I would wake up kicking at some dangerous animal attacking my wife. But I haven’t had those kind of dreams since I started taking Mannitol. I doubt whether melatonin helps–though it might get you better sleep. I was of the impression that it is our PD medicine.

    Good luck.

  • Good luck for those trying Mannitol. I use Sosa brand from Spain. I really don’t know if one is better than the other.

    Anybody else have problems rolling from one side to the other in bed? I really am helped by using silk pajamas and a strip of silk-like cloth under my waist area–really helps.

    Take care!

  • One thing that I found especially helpful was to put a silk strip of cloth in bed at the level of my waist. It makes it much easier to change sides when you need to change your position in bed. (Actually I went to a second hand store and bought som satin curtains which I then cut a strip wide enough for my waist and long enough to tuck in both sides of the bed on top of the regular sheet.) Try it–it sure makes it easier to move at night, and the investment is not big!

    Tom

  • thomas-rutschman

    Member
    May 10, 2022 at 2:05 pm in reply to: Gut bacteria identified in UF study

    What if you would try a smaller dose of Mannitol?

  • thomas-rutschman

    Member
    December 21, 2021 at 1:25 pm in reply to: Is there anything you wish you’d known as a new PD patient?

    Yo tomo los mismos medicamentos que usted. Levodopa y Repinerol. Pero lo que a mi me ha dado más resultado es Mannitol, un azucar. Uso una cucharada al día. Parece que tiene efecto sobre las placas enrolladas que tenemos en el cerebro a causa del Parkinsons.
    Buena suerte!

  • thomas-rutschman

    Member
    November 18, 2021 at 12:20 pm in reply to: Music and fine motor skills

    I sing in a choir and that has helped by voice to be stronger. The isolation during the Covid pandemia was not good for my voice, though. I started doing magic tricks to keep my fine motor skills, as well as doing some carpentry projects. (I make wooden puzzles for kids.) My guitar playing has take a toll, though–it is not as fun as it once was. My mother, who had Multiple Systems atrophy quit playing the piano a few years before she passed away. And she was a piano teacher most of her life.

  • Mannitol from Sosa in Spain.

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