Coconut Oil And Parkinson Disease
In recent years, many people who suffer from PD said that regular consumption of pure coconut oil significantly improved their symptoms. Studies support their claim: it seems that coconut oil contains glucose and other ingredients the brain uses as fuel after PD caused their deterioration.
How to Use Coconut Oil for PD:
Coconut oil can be found in almost every supermarket. It can be cooked or consumed as-is.
A new Parkinsons treatment , while all the natural remedies to Parkinsons Disease mentioned above have their benefits, Mannitol is a whole different level. Mannitol is a sugar alcohol . This natural low-calorie sweetener can be produced from various kinds of fruits, leaves, and other natural substances. You probably know it as the thin powder that covers some chewing gums is mannitol.
What is the connection between this natural sweetener to treating PD symptoms?
In 2013 Parkinsons experts from Tel Aviv University had an amazing discovery: they found that consumption of mannitol significantly improves the symptoms of PD: tremors ceased, the memory came back, thinking became clear, sleep came easier, and more.
How Does Mannitol Powder Work?
PD experts found that all these amazing results could happen because mannitol can dissolve the aggressive proteins which lead to PD. Additional studies from recent years strongly support this finding, as well as a testimonial of people who suffer from PD and felt tremendous improve in their condition.
When Dan Vesely Was Diagnosed With Parkinsons He Had To Do His Own Research Which Involved Manipulating The System That Leaves Many Without An Option
Upon discovering he had Parkinsons disease, an Israeli hi-tech entrepreneur decided to take matters into his own hands and find a viable treatment. However, as many natural, less invasive treatments are not pursued primarily for financial reasons Dan Vesely had to do his own research, which involved manipulating the system that leaves many without a better option.
Researchers at Bar-Ilan University published an article about what they called undone science areas of scientific research that remain underexplored because of several potential reasons, such as unprofitability or political ones with the focus of the study being the Parkinsons cure mannitol, a commonly-used sweetener that Tel Aviv University lab researchers determined was potentially effective in improving the condition of Parkinsons patients.
As a natural substance, mannitol products cannot be patented. Moreover, the global market for existing Parkinsons drugs is already worth billions, thus potentially useful candidates such as mannitol are ignored in favor of more potentially profitable treatments deeming them what the medical community calls orphan drugs.
In classic Israeli fashion, Vesely, a hi-tech start-up entrepreneur and former senior security-services officer, didnt let this stop him.
When I go to see him, he immediately stands up! Welcome, he says, tell me how you are getting on. There is a sense that we are colleagues, and that I am doing something incredibly important.
Why Mannitol And Why Now
Just when I had sworn off trying out the latest nonmedication cure or successful treatment for Parkinsons, a co-worker asked if I had tried mannitol. I had heard of it, but thought it was another overhyped solution for Parkinsons relief another opportunity to empty my wallet and once again smash my hopes of finding symptom relief.
However, several reasons have convinced me to take a chance on another nutriment:
- Mannitol is readily available and inexpensive. Once registered for CliniCrowd , a recommended dosage is provided.
- A clinical trial in Israel is being funded by the Israeli Ministry of Science and Technology, not a pharmaceutical company. This trial came about due to the success of mannitol in treating fruit flies and mice with Parkinsons-like attributes. Preliminary results are expected by the end of this year.
- In 2016, CliniCrowd, an online registry, was created for people to share personal experiences of researched nutriments. CliniCrowds goal is to explore potential treatments that pharmaceutical companies might have no interest in investigating or promoting, such as mannitol.
CliniCrowd was established when its founders wanted to help a friend diagnosed with Parkinsons. The friend began using mannitol and saw improvements in his symptoms. The founders wanted to share these experiences for the benefit of others.
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Leaving No Stone Unturned: Giving Mannitol A Try
Mannitol, a sweetener, was recently suggested as a potential disease-modifying agent for Parkinsons. In cell-based experiments, mannitol interfered with alpha-synuclein clumping. In a fruit fly model of Parkinsons, mannitol exposure led to the full recovery of impaired motor functions.
These results prompted many Parkinsons patients to begin consuming oral mannitol, with self-reported outcomes including a better sense of smell, lower doses of Parkinsons medication, and a better quality of life.
Members of the Parkinsons community in Israel also launched a crowd-funded platform called CliniCrowd to share experiences of self-administered mannitol. The supplements use was also supported by the documentary My Disease Our Revolution, produced to bring more attention to mannitol in treating Parkinsons.
Based on reports from CliniCrowd and physicians treating Parkinsons, David Arkadir, MD, PhD, a physician and neurologist at Hadassah Medical Center in Jerusalem, secured funding from the Israeli government to conduct a small placebo-controlled Phase 2a trial into the safety, tolerability, and potential efficacy of increasing doses of mannitol in Parkinsons.
On the fourth visit 12 weeks later, mannitol was increased to 9 g twice daily.
Motor assessments were documented but were not included in outcome measures because patients were not asked to stop their medications before visits. Blood tests were conducted to measure disease-related biomarkers.
Retrospective Power Calculation For Future Trials
PD patients who buy and consume oral mannitol frequently report improvement of their sense of smell. In our small study no such effect was observed . Based on these results, a future study aiming to demonstrate an improvement of at least 1 point on the B-SIT test, with a power of 80% and a significance level of 5% in a one-sided paired t-test, would require a sample size of at least 32 subjects on mannitol.
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What Are The Side Effects Of Using Mannitol
Greater than 20 grams in one day may cause laxative effect.
What is the scientific background?
In the June 2014 issue of The Journal of Biological Chemistry, a study confirmed two things: Mannitol improved Parkinsons Disease symptoms in genetically modified fruit flies and mice, and it reduced harmful levels of Alpha-Synuclein, protecting the neurons that produce dopamine in the brain. Mannitol crosses the blood brain barrier and prevents the protein Alpha-Synuclein from clumping together, which is a cause of Parkinsons Disease.
In the fruit fly test model, the flies normal movements were restored by Mannitol and their levels of Alpha-Synuclein were reduced by 70%. In the mice test model, the protein levels were also reduced and dopamine-producing neurons protected. The results of these lab experiments encouraged medical professionals to investigate Mannitol as a possible natural supplement and treatment for people suffering from Parkinsons Disease.
What is the required dosage of Mannitol?
Mannitol can be taken at any time of the day. As a sweetener use 5 grams up to 4 times per day. Greater than 20 grams in one day may cause laxative effect.
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. There is no reference in the FDA document that indicates a link between Mannitol and heart disease or high blood pressure.
How does Mannitol work?
An Entrepreneurial Approach To Turn An Orphan Drug Into A Potential Treatment For Parkinsons
Mannitol, a natural sweetener, may help treat Parkinsons disease, yet was not being tested in clinical trials. The story of mannitol is one of many examples of undone science: research questions unfunded or ignored for economic, political, or other reasons.
How can public pressure utilizing crowdsourcing, citizen science, and entrepreneurial activism help transform undone into done science? A new article in the journal BioSocieties, published by Drs. Shlomo Guzmen-Carmeli and David A. Rier, of Bar-Ilan Universitys Department of Sociology and Anthropology, chronicles the story of CliniCrowd, an Israeli company established to test the effectiveness of mannitol. A common and fairly inexpensive sweetener used by the food industry, and in hospitals to reduce intracranial pressure, mannitol was demonstrated a few years ago by a group of Tel Aviv University lab researchers as potentially effective in improving the condition of Parkinsons patients.
CliniCrowds efforts involved several stages. Most important was the launch of a crowd-sourced study of Parkinsons patients who agreed to take mannitol regularly for an extended period and report their results. This research produced preliminary data sufficient to generate public pressure and influence with which to attract scientists to conduct further clinical research currently ongoing on mannitol for treating Parkinsons.
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Can It Be Used As A Treatment
There is no strong evidence to support that mannitol improves Parkinson’s symptoms, but many swear by it. Mannitol can be bought online as a food supplement, called a nutriment. It is widely available and already being individually tested by many with PD.
People with Parkinson’s can sign up for registries to get mannitol products and have the opportunity to report their findings in various forums supported by manufacturers and suppliers. The self-reports are that people feel better, clearer and improve motor symptoms.
Human clinical studies on the efficacy of mannitol in PD could take many more years to get approved. At this point, there isn’t enough interaction research to anticipate the effect mannitol may have on the absorption of L-dopa and other Parkinson’s disease medications. As always, remember to talk to your doctor before making any changes to your medications or taking any kind of supplement.
Iron And Dopamine: A Toxic Couple:
“…involves the oxidation of dopamine by iron and oxygen, forming dopamine quinone… Quinones impart toxicity by both alkylating protein thiol and amine groups, and promoting protein oxidation in the presence of reactive oxygen species and glutathione disulphide. These biochemical changes to proteins result in malfunction, disruption of cell membrane integrity, and, eventually, cell death.”
These indicate that Mannitol could also have a neuroprotective effect against the damage caused by iron build up in the brains of people with Parkinson’s Disease.
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A New Era For Parkinsons Disease Treatment
March 2, 2022 | By
A non-invasive ultrasound treatment for Parkinsons disease that was tested in a pivotal trial led by University of Maryland School of Medicine researchers is now broadly available at the University of Maryland Medical Center .
Howard Eisenberg, MD, Dheeraj Gandhi, MD, MBBS, Paul Fishman, MD, PhD, Bert W. OMalley, MD.
The device, called Exablate Neuro, was approved in November by the U.S. Food and Drug Administration to treat advanced Parkinsons disease on one side of the brain. The approval was based on findings from the UMSOM clinical trial and effectively expands access to focused ultrasound beyond clinical trial participation.
Rapid Reversal of Symptoms
Focused ultrasound is an incisionless procedure, performed without the need for anesthesia or an in-patient stay in the hospital. Patients, who are fully alert, lie in a magnetic resonance imaging scanner, wearing a transducer helmet. Ultrasonic energy is targeted through the skull to the globus pallidus, a structure deep in the brain that helps control regular voluntary movement. MRI images provide doctors with a real-time temperature map of the area being treated. During the procedure, the patient is awake and providing feedback, which allows doctors to monitor the immediate effects of the tissue ablation and make adjustments as needed.
Patient: Focused Ultrasound Changed My Life
A New Era for Parkinsons Disease Treatment
Secondary Clinical Outcome Measures
The study was not designed to demonstrate statistically significant differences in efficacy measures. None of the clinical measures were significantly different between the mannitol and placebo groups . Sub-analysis, comparing the placebo group with participants who completed the trial on the maximal target dose of mannitol , also did not reveal significant differences. Only a single participant , not on levodopa at screening, started levodopa therapy during the trial.
Table 3. Change of clinical outcome measures of efficacy between baseline and 36 weeks of continuous therapy.
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Sample Size And Statistical Analysis
We targeted a sample size of 25 per group, with assumed 7% dropouts unrelated to agent tolerability. This sample size provided 80% power to detect a difference of 30% in the proportion of subjects tolerating mannitol relative to placebo , assuming the placebo group will have more than 90% tolerability.
Efficacy measures, calculated only for those patients who completed the treatment originally allocated, were not powered to detect statistically significant differences, but rather to be used for designing future efficacy studies with the maximal tolerable dose of mannitol that will be defined in this study. The targeted sample size , however, would have enabled us to detect inter-group differences of 20% in the mean of continuous variables with 80% power in 2-sided t-test with alpha < 0.05 in case the intra-group standard deviation would be 24%. Differences between groups were assessed using two-sided Wilcoxon rank sum test.
The COVID-19 pandemic in 2020 dramatically slowed recruitment rate in the 3rd year of the clinical trial and led to the decision of earlier trial termination.
Supplemental Methodologies And Analyses
Fieldwork also included observations made at medical conferences, and during patients special exercise sessions. Content analyses examined: the company’s website the forum dedicated to patients taking part in the project and print and electronic media coverage. This fieldwork, conducted simultaneously in several areas, helped us understand several significant aspects of CliniCrowd and its work.
We analysed the materials collected via the case study approach . During initial data analysis, we focused on several questions: how has CliniCrowds narrative changed over time? How were various actors exposed to information about mannitol, the patients initiative, meetings with other patients, and online publications? How did physicians view information about the use of mannitol and CliniCrowd’s activity? And finally, have physicians attitudes towards mannitol changed?
Answering these questions helped generate a timeline through which to spot and understand changes occurring in the field. Tracking our subjects changing use of terminology and rhetoric in the field revealed certain key shifts, described below, in how CliniCrowd framed their work. Added to these tactics were the content analysis methods that characterize qualitative research.
Through the above-described research process, in which we worked the data from the ground up , we distilled a model , from our case analysis, for further entrepreneurial activism to address undone science.
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Phases And Tactics : Re
However, as the fieldwork progressed, we noticed a shift in the attitude of CliniCrowd employees, in the companys discourse, and in media attitudes. At this point, we began to track the penetration of the term dietary supplement into societal discourse. It appeared in interviews, fieldwork, content analysis, and in media appearances. Interviews made clear that the choice of the terms dietary supplements and functional foods reflected CliniCrowds tactical decision to cease resisting pharmaceutical companies, in favour of creating a channel of influence and complementary action, by re-framing mannitol as a new substance in the food supplement market.
This is how CEO Sadeh described the change, in a follow-up interview:
It is interesting to examine the change in approach as reflected in interviews with Sadeh over time. This trend supports Hesss discussion of challengers shifting focus from that of replacing to complementing industrial actors. In this, it also echoes AIDS research, where activists initially profoundly hostile to the scientific and pharmaceutical establishments eventually chose to cooperate with them . Still, Sadehs final sentence demonstrates that re-positioning themselves as complements rather than replacements did not necessarily mean that CliniCrowd fully renounced their critique of commercial influence.
As Alona explained:
Parkinsons Surveys And Clinical Trials
If youd like to be part of early research efforts that are looking into the efficacy of service dogs for those living with Parkinsons, you can take this survey here.
Park Test University of Rochester
Project Euphonia LSVT Global and Project Euphonia
BouNDless Phase 3 trial to investigate the efficacy, safety, and tolerability of ND0612, a continuous subcutaneous levodopa/carbidopa delivery system in comparison to oral levodopa/carbidopa in people with Parkinsons experiencing motor fluctuations
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Phases And Tactics: 1 Frustration Over Undone Science
Mannitol is a powdery, natural substance used in the food industry as a sweetener. Hospitals employ intravenous mannitol to reduce intracranial pressure. Our study examined mannitols oral use.
The researchers stated that these studies did not progress to the clinical trial stage. A natural substance found in many plants and algae, mannitol and its products cannot be patented. Moreover, given the ageing population, with concomitant rising rates of Parkinsons, the global market value of Parkinsons drugs , is enormous. Already worth billions annually, it is projected to experience a compound annual growth rate of about 11.3% from 2020 to 2027 . All this has rendered mannitol unattractive to pharmaceutical companies , who have declined to test its value for treating Parkinsons.
This is how one researcher involved in the study, Moshe , described his frustration:
It’s not easy, knowing there is clear potential, yet the research has been shelved. The frustration is very great. It raises a lot of questions about the implications of scientific research. Whom does research serve: science, patients, or other ?
Following several years pursuing funding to test mannitol on Parkinson’s patients, the team published an article in a respected chemistry journal , and moved on to the next research project.
Abigail is a veteran researcher who has led clinical trials at several international drug companies:
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