PD & Mannitol Frequently Asked Questions (FAQ)

Do all people living with Parkinson's experience the same symptoms ?

Parkinson’s is a complex condition that affects different people in different ways. Each person living with Parkinson’s has an individual experience of his condition. Symptoms differ from one person to the other. No two people with Parkinson’s have the same symptoms and the same effectiveness of the treatment.

The symptoms most often associated with Parkinson’s affect movement. These are often called motor symptoms. However, there are other symptoms that aren’t related to movement, such as pain and depression. These are known as non-motor symptoms. The common symptoms that people with Parkinson’s may get are listed below.

It’s important to remember that everyone’s experience of Parkinson’s is different. Not everyone will experience all of these symptoms.

The order in which symptoms appear and the way symptoms progress also varies from one to another.

What are the main Parkinson's symptoms ?

Tremor (shaking), slowness of movement, rigidity (stiffness). Tremor (shaking) is one of the common symptoms of Parkinson’s, alongside slowness of movement and rigidity (stiffness). Not everyone will experience all of these symptoms.

For some people, a tremor can be the first sign of Parkinson’s. However, having a tremor doesn’t always mean you have Parkinson’s as it can be caused by other conditions. Not everyone who has Parkinson’s will have a tremor.

What are other physical symptoms of Parkinson's ?

Bladder and bowel problems, eye problems, falls and dizziness, fatigue, freezing, pain, restless legs syndrome, skin and sweating problems, sleep problems, speech and communication problems and swallowing problems. Loss of sense of smell is one of the earliest symptoms for many (not all) people living with Parkinson’s. Sometimes it appears years before the diagnosis.

What are potential mental health impacts caused by Parkinson's ?

Anxiety, dementia, depression, hallucinations and delusions and memory problems.

What are the common drugs ?

While there is currently no cure for Parkinson’s, there are a range of drugs that can be used to manage the symptoms of the condition.

These are the main types of drugs used to treat Parkinson’s: Levodopa, Dopamine agonists, MAO-B inhibitors, COMT inhibitors, Glutamate antagonist and Anticholinergics.

The symptoms of Parkinson’s happen when the level of dopamine, a chemical messenger in your brain, becomes too low. This is because many of the brain cells that produce dopamine have died or are dying.

Without enough dopamine, your movement slows down and it may take longer to do things. You may also lack co-ordination or your hands or other body parts may shake. Each type of drug works in a different way to alleviate this problem.

Most of the drugs work to help the movement symptoms of Parkinson’s either by: increasing the amount of Dopamine in the brain or stimulating the parts of the sense brain where Dopamine works, or blocking the action of other factors (enzymes) that break the down Dopamine.

What is Mannitol?

Mannitol is a low calorie sugar alcohol (average 1.6 calories per gram).

Mannitol is naturally occurring in plants, fungi, bacteria and algae.
In the food and pharmaceutical industries, Mannitol is primarily produced synthetically. The composition and safety guidelines regarding usage are identical to those for the naturally occurring form.

What is Mannitol used for ?

Mannitol is a low calorie sweetener. It is used as a low calorie sweetener in gums, candies, beverages, and various foods.
According to the FDA, it does not cause a sudden increase in blood glucose. 
Medically, it is used in much higher dosage in I.V. treatment to decreased intracranial pressure.

Is Mannitol safe ?

Yes. Mannitol, in the required dose, is considered as safe.
FDA has determined Mannitol to be GRAS (Generally Recognized As Safe) as a food additive – see FDA link  and EFSA link.

What are the side effects of using Mannitol as a nutriment ?

Sometimes – bloating. Above 20gr (0.71 ounces) per day – may have a laxative effect. Other side effects that are listed in the Internet refer to higher dosage used for I.V. treatment.

What is the scientific background ?

 

According to a study, funded in part by the Parkinson’s Disease Foundation, in the June 14 issue of The Journal of Biological Chemistry, the compound Mannitol, not only improved PD-like symptoms in fruit flies, but also reduced harmful levels of Alpha-Synuclein (the hallmark of PD) in the brains of fruit flies and mice, that were genetically-engineered to express the PD human gene.

Researchers took interest in Mannitol since, when Mannitol is given as an injection, it has two unique properties. First, it can cross the blood brain barrier (meaning the drug can reach the brain). Second, it is able to stop some proteins in the body from clumping together, which is interesting in light of the fact that clumps of the protein Alpha-Synuclein are a well-known sign of Parkinson’s disease.

Knowing these properties, Daniel Segal, Ph.D., and Ehud Gazit, Ph.D., at Tel Aviv University, in Israel, wondered whether Mannitol might be helpful for Parkinson’s disease. They examined Mannitol in the lab and in fruit flies and mice. They studied whether Mannitol can improve the motor symptoms of fruit flies with PD-like symptoms, and whether it can change the levels of Alpha-Synuclein in all three experiments.

  • In the test tube, Mannitol prevented Alpha-Synuclein protein from clumping into the Lewy bodies that form in the brains of people with PD.
  • In the fruit fly model of PD, Mannitol restored the flies’ normal movements, for example their ability to climb up test tubes.
  • In the same flies, Mannitol reduced Alpha-Synuclein clumps by 70%.
  • In the PD mice model, Mannitol injections reduced Alpha-Synuclein clumps in several areas of the brain involved with classic PD and protected dopamine-producing neurons, the brain cells affected in PD.

This study demonstrates the potential ability of Mannitol to prevent Alpha-Synuclein clumping that takes place in PD. The results indicate that Mannitol should be studied for its potential to treat PD

Why haven't I heard about it till now?

Mannitol is a sweetener/low calorie sugar substitute that can be purchased from different manufacturers. It has been available and used in the food industry for several decades. Mannitol is not patentable and there is no commercial incentive for pharma companies to invest in its research or in promoting the Mannitol.

Where can I purchase Mannitol?

CliniCrowd has no connection to Mannitol manufactures. It can be freely purchased.

After you fill in the registry for the first time, you will be directed to a page (which you can print or save) that includes among other information a list of places that were recommended by other participants like you. If you have other suggestions you are welcome to send us as well and we will update others as well.

How can I know which Mannitol to purchase, and from which manufacturer?

Note that CliniCrowd does not manufacture, provide or sell Mannitol and does not have any relationship with Mannitol manufactures.

Here are points that should be considered when you buy Mannitol, you should look at the following points:

  1. The label indicates that the Mannitol is good for human consumption (as a sweetener).
  2. It includes a FDA notice that when taking over 20 grams a day there might be side effects such as a laxative effect.
  3. The supplier/manufacturer has positive reviews.
  4. The supplier/manufacturer works according to his territory regulation and preferable also according to USA and/or EU regulation.
  5. Purity of Mannitol is high (above 99%)
  6. Pay attention that you purchase or examine the above regarding Mannitol and not Maltitol

What is the required dosage of Mannitol ?

The dosage is based on your individual weight. After you fill in the registry for the first time, you will be directed to a page (which you can print or save) that presents the dosage calculation.

How does Mannitol work ?

In the lab Mannitol prevented Alpha Synuclein from clumping in all three experiments; test tube and brains of fruit fly and PD mice models, genetically engineered to express the PD human gene. Scientists suggest that Mannitol appears to function as a chemical chaperone, meaning that the sweetener stabilizes proteins like Alpha Synuclein and prevents them from inappropriately clumping together. In support of this idea, feeding fruit flies with Mannitol improved their PD-like symptoms, allowing the flies to regain their normal movements. See more details in the research.

Can Mannitol be taken with other medications/supplements ?

Currently we don’t have any information about contra-indication of Mannitol with other medications/supplements.
Disclaimer – CliniCrowd does not provide medical advice. For medical advice regarding how to manage your disease, please consult your physician.

Do I have to take Mannitol with food ?

Mannitol can be taken with or without food. Once we have enough information from our survey, regarding regimen and food consumption of Mannitol, we will share it with participants. This is the idea of the platform. Every compliance of survey gets us closer to the number of entries required to generate a report. Select HERE to reach the survey (completing the survey on a monthly basis is most helpful).

Can I take Mannitol if I have heart disease, high blood pressure or diabetes?

According to the FDA, Mannitol does not cause a sudden increase in blood glucose and/or insulin. Regarding heart disease or high blood pressure there is no reference in the FDA document.
Disclaimer – CliniCrowd does not provide medical advice. For medical advice regarding Mannitol and heart disease, high blood pressure or any other disease please consult with your physician.

Will Mannitol cure my Parkinson's or improve my Parkinson's symptoms ?

The research suggests that Mannitol might prevent the deterioration of PD. Some of the participants, that have been taking Mannitol, report that there is some improvement in their symptoms. Taking part in this unique CliniCrowd registry, allows participants to share and validate the efficacy of Mannitol. In turn, CliniCrowd’s platform will provide analytics and shared insights, allowing the individual participant to learn about Mannitol efficacy for Parkinson’s – all based on the wisdom of the crowd.

How quickly does Mannitol work? How long does it take for Mannitol to impact my Parkinson's ?

No two people with Parkinson’s have the same symptoms and same effectiveness of treatments. Same for Mannitol, it affects each person differently. Some participants report the following:

  • After 18- 30 days with Mannitol they feel a change.
  • 30-60 some observed a slight decrease in symptom improvements and even some regression.
  • After 90 days they report continuous improvement

Please note that this is preliminary data. There are participants that experience changes after a few months, and some that may not experience any change in symptoms, however, their change will be expressed by no deterioration of their disease. We need more patients to report at least on a monthly-basis, in order to reflect more solid data.

Disclaimer

CliniCrowd does not provide medical advice.  For medical advice regarding how to manage your disease, please consult your physician.

We intend to raise Awareness, gain Acceptance and increase Adoption of Mannitol as an option.

The only way to do this is By the Crowd for the Crowd.

Join the Registry Today and Help Us Help you !

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