Mannitol

[jimmydook]

Recently diagnosed a few syptoms;doing lots of exercise; Good diet ;except the wine;not on any meds yet;wondered if mannitol might help ;wot dose etc ?

[Farooqji]

Keep doing intense exercise 150 minutes a week. Keep the heartbeat at 140 during exercise

[jimmydook in reply to Farooqji]

Thanks has it workedfor you?

[alexask in reply to jimmydook]

The jury is still out. Mannitol has worked for me, up till now, and is the second best thing for me after exercise.

But everyone is different. Also it depends on what you eat. If you continue to eat too much sugar and do no exercise you will see little, if any benefit.

Basically I regard Parkinson's as like quicksand - you are slowly sinking into it. There is generally a rope for most people - which allows you to slow your descent or even stop or even pull yourself out of it (though it is unlikely you will ever escape completely - if you do then you have probably also found the cure for aging itself). This rope consists of many different strands. I imagine it as stretchy, so if you don't have enough, you will continue to sink.

The rope is different for different people. For some the rope will not be strong enough to stop their descent.

One strand of the rope may be Mannitol. Another may be some form of Levedopa. Another strand or perhaps several strands is exercise. Another strand may be social interaction. Another strand might be a low carb, high fat diet (where one source of the fat may be coconut oil).

It is up to each of us to find out what makes our rope. But I can tell you almost all of the strands are most likely listed or linked from here on this website.

Also wine doesn't improve my symptoms much - you might find a hoppy beer helps you more.

[laglag in reply to alexask]

Alexask,

Love your analogy of PD to quicksand!

[Kia17 in reply to alexask]

Beautiful analogy.

[Farooqji in reply to jimmydook]

This will not stop the progression. However it's slowed down and additional benifit is that one is safe against other diseases mainly diabetes and high blood pressure

[Farooqji]

Mannitol will not help unfortunately

[jimmydook in reply to Farooqji]

Have you tried it ?

[Farooqji]

Yes , I have triedone it for 3 months but no benefit

[alaynedellow in reply to Farooqji]

I have been told may take 3-4 months to work. Start my trial today so catch up in a few months. Good luck

[hanifab23 in reply to alaynedellow]

please tell me any good benefits of Mannitol

[alaynedellow in reply to hanifab23]

My mood is better- Iam glass half full again, dreadful apathy has left. I have loads more energy and alot less episodes of exhaustion( prob only couple in the months i have taken it). My right hand and arm are more reponsive, my writing though small is readable and arm not feel so tight. I feel that iam back where i was health wise some time ago. Brilliant stuff. (I have no tremor)

[alaynedellow]

Hi Jimmy,

I like alesask image of a rope its a good way of presenting PD. Personally I am just about to start takin Mannitol today I have been told may take 3-4 months to improve symptoms. Watch this space. Exercise is a massive part of our self aids- man was created to be active not to take car and lifts everywhere we are designed to move. Personally if i get my heart to 140 beats i will have expired my resting heart rate is 56 beats a minute so many a treadmill will not register me but i get it to raise for me. I say this to re-inforce alexs rope that we are all different.

If you search for mannitol here you will find many informative posts about it.

Good luck.

[jimmydook]

Thanks to all

[Hidden]

Mannitol is a keeper for us. My Mom was in the next to the last final stage of her Parkinson’s and it has done amazing things for her. I was losing her and now I feel like slowly I’m starting to get her back. We have a long way to go but we are staying with it.

[hanifab23 in reply to Hidden]

please tell me more so far what improvements

[Hidden in reply to hanifab23]

I have been meaning to recap and update everyone. I have just been so busy. But Mom just finished her 5th month of taking Mannitol. Since my last update she has gotten her singing voice back and her tremors have gone way down and she is walking a little farther then she was. Her mobility is still a struggle but we are not going to stop. I’m hoping to see more improvements as we continue on.

[CapSage in reply to Hidden]

Thank you for your post on Mannitol.

Do you agree with posted dosage suggestions on this site? And are there better times to take Mannitol, like after eating, before eating, etc?

[jeanette2372]

I see Mannitol as being cheap, safe, and easy to use. I think it's worth taking, it may stop or slow the progression of PD. According to Clinicrowd, the suggested dose would depend on your bodyweight. For example, a 70kg person would take a daily total dose of one tablespoon (20ml volume). We bought 2kg Mannitol - we estimate that would last six months. We bought it from:

blackburndistributions.com/...

I think it's helpful to others to register and provide feedback on Clinicrowd.

Clinicrowd information page:

clinicrowd.info/parkinsons/

[alexask]

Just had another thought on why some people react well to it, whereas others seem to see no impact. I believe this is to do with gut permeability. If the cause of PD in an individual is a leaky gut then Mannitol may benefit. If the cause is something else, such as a blow to the head or Pesticide exposure then Mannitol may not benefit.

I think if you respond well to a ketogenic diet then it may be your brain is unable to handle (fast) carbs and Mannitol may benefit you.

[sunvox]

Mannitol is a chemical chaperone that works in theory by helping remove waste products from the brain including and especially alpha-syn misfolded proteins. The exact cause of Parkinson's is variable so it is likely that the accumulation and/or production of this protein is different for different patients. The bottom line is that mannitol has been shown to help clean out this bad protein so even if you don't see a benefit yourself it is very likely that it is slowing the progression of PD in ALL patients. Sadly the proof of this will take many many years and no one is interested in funding such research. Mannitol is cheap and safe and only has 1.6 calories per gram so if you are eating 10-15 grams a day you're talking about 16 to 24 calories and a few pennies for a molecule that may be adding years to your life and/or slowing down PD's progression. Seems too simple not to eat it for the rest of your life or until it's proven ineffective in particular cases.

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[alexask in reply to sunvox]

Yes, it won't work for everyone, but it will help a significant percentage of people who try it. For me it stopped the progression for a while - and eliminated tremor.

Still not as good as exercise, but still pretty good.

[sunvox]

"Yes, it won't work for everyone"

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No I disagree and that was my point.

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Even if you don't feel improvement it is proven to clean out alpha-syn so it is almost certainly going to act to slow progression for everyone, but you can't feel a slowing down of your own progression so there is no way for a person in that situation to tell that it is working. To me the science behind this molecule is so convincing that I simply can not comprehend why anyone with PD would choose not to eat 20 calories a day of a sugar substitute just in case it actually IS slowing their PD progression.