Robert Li

Hello Robert C,

Since you were diagnosed with Parkinsonism and not Parkinson’s Disease, have you had your vitamin D and erythrocyte manganese levels checked?  These can be involved in both Parkinsonism and true PD, but most neurologists and hospitals are not checking manganese (not to be confused with magnesium) levels.  I got mine checked by a…[Read more]

Gwendoline, ever since you mentioned that mannitol is used as a diabetic sweetener in baking, I have been thinking about how people with PD could use this as an advantage.

Cocoa appears to help protect dopamine-producing neurons… https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3575938/  However, sugars in chocolate will feed gut bacteria and…[Read more]

Mark, melatonin can make you need to pee more… https://www.webmd.com/sleep-disorders/melatonin-dos-donts   That’s not going to make me stop the melatonin!  You could try a different brand, since they’re not exactly the same.  I am currently using NOW brand, which I think is not made from a sheep’s pineal gland (it is vegetarian).

These are…[Read more]

That is good to hear about the paraquat!  There are many substances that are banned or restricted in the EU and other countries, but barely regulated in the U.S.  So we have to watch out for ourselves.  Exposure to metals dust like living next to an active train track can contribute to PD risk.  Don’t dig in the nearby soils!

Hi All, Thank you for the responses.  I did some more research and talked with a metals toxicity researcher about it also.

Mannitol is not a replacement for C/L.  However, it is believed to break down clumps of misfolded proteins called Lewy Bodies that are believed to be the cause of PD.  In that sense, if it is effective, then the need for C/…[Read more]

Sadly, occupational use risk of paraquat, a herbicide, can increase Parkinson’s risk by a factor of 11 times, for people with certain (not too uncommon) genetics.  For everyone else, the risk factor increase is closer to 1.5 times.  Knowing that, there is some related research into slowing progression using antioxidants.

Wow, it is great to hear that some people are having positive responses to mannitol!!  What can I say but congratulations on finding something that worked!

It would make sense that the effects of mannitol would be different for different people, because alpha-synuclein (misfolded proteins, the basis of Parkinson’s Disease), can start in…[Read more]

I take 20 mg melatonin.  It doesn’t seem to be that much different from 3 mg in effect, but I have read research that melatonin is neuroprotective: https://site-akiajqrf22xmaqzsiz6q.s3.amazonaws.com/DDI+Website/News/html/Melatonin+-+The+Swiss+Army+Knife+Among+Antioxidants.html

At the beginning I was quite groggy in the morning but no more.

For…[Read more]

Thanks for a great thread.  I think there is a huge weaknesses in many microbiome studies in terms of learning of how they might help us.  The weakness is that they often only change one variable at a time.  So for many people, the microbiome ends up resembling how it started.

For instance, when autistic children are given an antibiotic to ki…[Read more]

Hi Robert, I appreciate the sentiment.  Although I would trade it for a magic anti-gray hair pill…

Hi John, having survived two debilitating systemic diseases in my lifetime, Chronic Fatigue Syndrome and Cervical Dystonia / Parkinsonism, I have developed a philosophy that I hope might help you in some way:

I will never be able to prove a…[Read more]

Magnesium helped me too.  Here are a few other things that you might could try, according to below: calcium, drinking more water during the day, vitamin C and E, CoQ10.  NAC can help boost glutathione production in some people. (People with Multiple Sclerosis often take NAC to slow progression of disease.)

Source: Muscle and oxidative s…[Read more]

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 M…[Read more]

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 fer…[Read more]

Wow, Yakim, that’s a great find.  Some people take berberine to help with blood sugar reduction and diabetes.

Berberine, a biochemical in some plant foods, seems a pretty promising way to increase the production of L-dopa by bacteria in the gut. It won’t fix the core reason for PD but can help reduce L-dopa requirements.  Here’s another l…[Read more]

Cathy, recent research is showing gut microbiota disturbances due to antibiotics are a common cause of many systemic diseases.  Probiotics can help, but not all probiotics can make it through stomach acids.  I think there is a lot of research forthcoming this year and next.

Mary Beth,

Wildfires contain a small amount of manganese, and industrial / battery fires can contain A LOT.  Airborne manganese increases risk of PD.  Research of people living near old ferromanganese plants shows increased PD incidence.  Most people don’t get PD though because they can detox inhaled manganese quickly enough, but some ca…[Read more]

Friends,

I will credit much of my recovery from dystonia to increasing my vitamin D levels from a historically low <20 ng/L to around 70 ng/L.  Vitamin D helps protect the dopamine channels from oxidative stress damage, among other things.

There is a significant amount of University research indicating that adequate vitamin D levels can…[Read more]

Hi Ally,

I don’t have PD, I have Parkinsonism and cervical dystonia.  After being diagnosed, I realized my father’s disability when he got older was a form of dystonia.  I also realized that my grandfather, who hiccuped for a year, had myoclonus dystonia.  And we all had postural issues when young.

I’ve had general health genetic testing, bu…[Read more]