This Sweetener Was Helping his Parkinson’s. So he Decided to Find Out More

As reported in Parkinson’s News Today; Daniel Vesely had a hunch. He had been using mannitol, an easy to access over-the-counter sweetener and supplement often used by people with diabetes, and he suspected it was alleviating his Parkinson’s symptoms. He knew it was too cheap and available for a formal trial (because no company would want to spend the money to test it), but still, he wanted to check in with other Parkinson’s patients and find out if any of them experienced the same relief.
In collaboration with a few others, Daniel put together a platform called Clinicrowd in which patients could report their own experiences. The documentary “My Disease Our Revolution” came out on July 29th, showing how Vesely’s idea made it to trials when the internet responded.
 

Parkinson’s Disease

Parkinson’s disease is a rare and progressive neurological disease that affects movement. The disease damages the central nervous system which is critical for communication between the body and brain. This causes symptoms to advance from slight tremors and stiffness to difficulty with speech, walking, rigidity, imbalance, loss of motor skills, and finally, at times, cognitive decline and hallucinations. The disease affects adults, with the onset usually occurring after age 50.

How Does Mannitol Work?

Mannitol is an artificial sweetener and supplement. It is often used in by people with diabetes because unlike normal sugars, it does not get absorbed easily by the intestines. This means it doesn’t have the same effect on blood sugar. 
 
How exactly the substances’ mechanisms works is still being pieced together. Prior study has found that mannitol can prevent the build-up of the toxic protein alpha-synuclein, which is considered a factor in Parkinson’s disease. However, the sweetener is already used medically because it functions as an osmotic diuretic to help the kidneys maintain a health blood flow; it can also treat brain swelling. It’s been considered for the treatment of asthma, cystic fibrosis, and bronchiectasis too.

The Crowd Sourced Answers

Vesely’s crowdsourcing got feedback. At their interim report in 2018, they had over 1,500 patients responses from patients with Parkinson’s. However, while they now have gathered further information, they only had 78 consistent reports from patients who had used the treatment consistently for over six months. This was back in 2018. Of them, over 56% reported alleviation of the disease, with notably 90% noting improvements in their smell, a symptom of the disorder.
However, these were notably unreliable results. While it’s useful to find early notions about the treatment option and anecdotal evidence, why so few participants continued is of note. The data would be more sound if more patients had followed up, but asking them to be consistent would cost money, and they’re currently self-funding. However, the investigation also technically isn’t a formal trial. It is patients informing others about easy, over-the-counter options that could potentially work for them.
Now, they report gathering follow up data from 1,076 patients online, with 645 of them taking it consistently for 3-6 months. Of them, 64% reported lighter symptoms.

From the Internet to the Lab

Their findings didn’t go unnoticed. Though not reliable enough on its own, the sample was enough to spark a clinical trial. The clinical trial is surveying 30 participants over 36 weeks to find the safety and tolerability of the drug. They received funding by a 2016 Israel grant program that was specifically aimed to study generic, widely available medications that could be repurposed for new uses.
As of now, the team didn’t get as many patients as they’d hoped. This is the result of the current pandemic and that often patients won’t bother with the hassle of participating in a trial and the possibility of receiving a placebo when the drug is already available over the counter. While the trial is small (making the results less useful), their current positive results could propel the sweetener to a longer, more intensive Phase 3 Trial. They expect results from the current trial to come in around mid-October.

What are your thoughts on this fascinating research? Share your stories, thoughts, and hopes with the Patient Worthy community!

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