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Robert Li replied to the topic How long have you known you have Parkinson's? in the forum Living With Parkinson's Disease 8 months, 1 week ago
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]
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Robert Li replied to the topic Mannitol Updates? Does it even taste sweet? in the forum Parkinson's Disease Medications 8 months, 2 weeks ago
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]
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Robert Li replied to the topic Have your urinary patterns changed? in the forum Parkinson's Disease Symptoms 8 months, 2 weeks ago
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]
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Robert Li replied to the topic How long have you known you have Parkinson's? in the forum Living With Parkinson's Disease 8 months, 3 weeks ago
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!
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Robert Li replied to the topic Mannitol Updates? Does it even taste sweet? in the forum Parkinson's Disease Medications 8 months, 3 weeks ago
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]
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Robert Li replied to the topic How long have you known you have Parkinson's? in the forum Living With Parkinson's Disease 8 months, 4 weeks ago
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.
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Robert Li replied to the topic Mannitol Updates? Does it even taste sweet? in the forum Parkinson's Disease Medications 8 months, 4 weeks ago
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]
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Robert Li replied to the topic Do you take melatonin for sleep disturbances? in the forum Parkinson's Disease Medications 8 months, 4 weeks ago
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]
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Robert Li started the topic Mannitol Updates? Does it even taste sweet? in the forum Parkinson's Disease Medications 8 months, 4 weeks ago
Hi All,
I just started taking mannitol around two weeks ago (Mannitol Balance, made in France, from Amazon). I am just taking the amount recommended on the package for sweetening (1.5 tsp per serving, up to 4 times a day), but I am just taking once per day. Curiously, it doesn’t taste very sweet at all to me and I would not certainly not c…[Read more]
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Robert Li replied to the topic Fecal microbiota transplantation therapy for Parkinson's disease in the forum Parkinson's Disease alternative treatments 8 months, 4 weeks ago
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]
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Robert Li replied to the topic Anyone else experiencing leg cramps at night? in the forum Parkinson's Disease Symptoms 12 months ago
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]
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Robert Li replied to the topic Anyone else experiencing leg cramps at night? in the forum Parkinson's Disease Symptoms 12 months ago
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.)
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Robert Li replied to the topic Mannitol, a sugar, has given me back my life! in the forum Parkinson's Disease Medications 12 months ago
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]
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Robert Li replied to the topic Mannitol, a sugar, has given me back my life! in the forum Parkinson's Disease Medications 1 year ago
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]
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Robert Li started the topic Foods that make you feel better? in the forum Parkinson's Disease alternative treatments 1 year ago
I was wondering if there are foods or dietary guidelines that have helped you with reduced motor or non-motor symptoms? I have chopped out 90% of the fried foods I used to eat, and I eat a lot more freshly prepared organic vegetables and unprocessed grains (rice instead of pasta or bread, for instance). I avoid what I have known allergy or g…[Read more]
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Robert Li replied to the topic Berberine improves memory and balance in mice in the forum Parkinson's Disease alternative treatments 1 year ago
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]
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Robert Li replied to the topic Do you have theories about why you have Parkinsons? in the forum Diagnosis Information and General Questions 1 year ago
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.
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Robert Li replied to the topic Do you have theories about why you have Parkinsons? in the forum Diagnosis Information and General Questions 1 year ago
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]
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Robert Li replied to the topic Do you struggle with anxiety and depression? in the forum Parkinson's Disease Symptoms 1 year ago
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]
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Robert Li replied to the topic Does Parkinson's run in your family? in the forum Diagnosis Information and General Questions 1 year ago
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]
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