EDIT: This is a post I made on another site and one that is linked in another post on this site. I am soon going to start a "Go Fund Me" campaign to begin a patient lead research trial. If you have SCA1,3,14,17 or Telangiectasia I beg you to please contact me at PeckJA@aol.com. I am helping my father and aunt to get better and I know I can help others if only people will take this seriously. Thank you all for taking the time to read. Please read it all carefully. There are many question still to be asked and answered and I harbor no hopes that this will work for everyone, but it IS working for my family and a few others with whom I am in contact. The more people that try this the sooner we can prove it works and for whom and why.
Here's the post:
I am sorry it has taken me so long to find this site. I have been very active on the NAF site for a couple years, but didn't even know this site existed. Anyways, a quick bio not to brag, but to show that although I am not a doctor, I am highly intelligent and am not some internet quack. The information I am about to present is not guess work or hearsay, it is backed by clinical science, and I have spent literally hundreds of hours researching and reading scientific paper after scientific paper.
First the brag sheet: My name is Joe Peck. I'm 50 years old. I'm a devoted husband to a wonderful wife, Darcie, and the father of 3 amazing kids Grace, 19, AJ (Angela), 17, and Carson, 16. I was my high school valedictorian and graduated Dartmouth College Thayer School of Engineering with a Masters degree. Currently I'm a Captain for United Airlines. My father and my aunt have SCA1 diagnosed using genetic testing. I carry the mutant allele for SCA1 with 42 repeats. I have no symptoms. My father and my aunt are highly symptomatic, but in their late 70s. Since 2013 when my family learned of the genetic illness, I have been searching the world over for a solution.
So enough about me let's get to the point . . .
In the last month, my father and my aunt have taken steps with a walker after having been in a wheelchair for almost a year.
I believe the improvement my father and my aunt are experiencing is due to the use of two supplements, one of which has long been discussed and tried with mixed results and the second being relatively new. Those supplements are trehalose and nicotinamide riboside, also called Niagen. I believe this combination can work for CERTAIN people. This combination is working for some people today even some people in real clinical trials. Who you ask? Well, I can't say with 100% certainty because I do not have the ability to research these questions nor has the research been done to the extent necessary, but it is likely that this combination of supplements may be helpful for people who are genetically identified with SCA1,3,14,17 or Huntington's Disease, or OPMD, and who either have no symptoms yet or have very early minor symptoms. Tragically, it is most likely NOT a cure for people who are late in the stages of the disease or who have ataxia not related to a genetic polyQ disorder.
Now for the science. Trehalose was first mentioned in 2004 as a possible treatment for SCA1 and Huntington's Disease. Since that time there have been more than 20 scientific papers proving it works to cure ataxia's of various kinds in mice. Until recently there was no human evidence. Many people had tried taking trehalose before with no effect. Recently a company known as BioBlast Pharma in Israel completed several human trials on people with OPMD ( a type of ataxia causing drooping eyelids and trouble swallowing) as well as people with SCA3. BioBlast injected trehalose into the blood stream of patients once a week for a year. ALL the patients who were treated for a full year either stopped getting worse or got a little better. Patents with BOTH types of ataxia. In short BioBlast has proven trehalose works in humans just like it did in mice. The problem is BioBlast doesn't plan on bringing this treatment to market for another 4 years, plans on charging upwards of $300,000 per year, and will only make it available initially to people with OPMD.
So . . . where does that leave the rest of us . . .
Now we know trehalose works. For those of you who are not familiar with trehalose let me give you a quick lesson. Trehalose is a sugar found in nature mostly in mushrooms, but it is made by the food industry using yeast. It has been around for decades. It is not like regular sugar because it is very difficult to digest so you can eat a ton and it doesn't spike your blood glucose or make you fat. My dad is pre-diabetic and is eating 4 Tbs a day with no trouble or weight gain. How does trehalose help? Well, in many SCA's the symptoms are caused because the bad gene is producing a protein that is too big for the brains normal processes to clean it out. In mice trehalose molecules were shown they could cross the blood brain barrier and attach to the proteins in such a way that the brain was able to clean them out like regular proteins. Getting rid of the bad protein buildups allowed the brain to recover a little bit and stop getting worse so mice were cured of ataxia when fed trehalose from a very young age. Now because of the work done by BioBlast we know trehalose can do the same for humans. Trehalose can NOT repair damage already done to the brain so it can NOT make someone with severe symptoms suddenly better, BUT for someone with very early symptoms or no symptoms at all trehalose can at least delay and maybe even stop the progression of symptoms. We have no data on the longterm use of trehalose so we don't know if it will stop working after some time. What I can tell you is that I have found 5 people around the world who have either SCA1,3, or Huntington's disease that have been taking trehalose for close to a decade and all of whom are well past the age at which they would have expected symptoms to appear. One gentleman is 70 years old with 40 repeats and is still symptom free. All of these people have been eating 4 Tbs a day, EVERYDAY, for years and years. Remember trehalose is a harmless sugar sorta like Sweet 'n Low. My dad and my aunt have been taking 4 Tbs a day in 4 cups of tea spread out evenly throughout the day so one cup in the morning, one cup in the midday, one cup in the afternoon, and one cup after dinner. One big problem is that different people absorb trehalose in very different amounts so where 4 Tbs appears to be helpful for my dad and aunt there is no research to support a belief that that amount would work for other people.
So to summarize: trehalose has been proven to slow or halt progression of some ataxic symptoms in humans. The human trials used direct injection into the blood of 13.5gs. There are no clinical trials of humans eating trehalose and getting the same benefit, but there is anecdotal evidence to suggest it is possible for some people to eat 70 to 100g per day and get the same benefit.
Next Niagen:
Niagen is the commercial name for a vitamin B3 discovered in 2004 called nicotinamide riboside. It is similar to niacin but it has some interesting effects that niacin does not. First off the research on Niagen is much less than that of trehalose, but importantly there are two recent scientific papers that are relevant for people with SCA or Ataxia Telangiectasia. The first paper was a human clinical trial that studied Niagen dosage in humans. What they found was that Niagen was safe to consume with minimal side effects up to a dosage of 1000 mg per day and more importantly at a dosage above 300 mg Niagen stimulated the production of NAD+ which is a chemical used by your brain to trigger repair of damaged cells. NAD+ and it's importance in the brain has been extensively researched. The second paper was a test wherein the scientists fed Niagen to mice who had Ataxia Telangiectasia and the mice were cured. Here again as in the trehalose experiment the mice were fed treatment early in their lives so there is no evidence relating to late stage treatment. The important factors here are 1) Niagen is proven safe in humans, 2) Niagen is proven to have the same impact on NAD+ production in humans that it did in mice, and 3) increased NAD+ in mice allowed mice to grow new Purkinje cells. For those who don't know damage to Purkinje cells in the brain has been shown to be a major factor in the cause for ataxic symptoms in genetic ataxias. My father and aunt are taking 500 mg, (2 pills) twice daily, of Niagen as am I.
So that's it for now. Please email me at peckja@aol.com if you would like to ask questions or would like me to send you any of the scientific papers upon which this is all based. Also, remember I am NOT a doctor, and the best course of action is to arm yourself with knowledge and consult with your own physician to see what is best for your situation. Lastly and I will save this for another post later, but I believe there is more to be done including a "wholistic" approach using exercise, diet, prayer or meditation, and a medication "cocktail". I believe that attacking illness with everything you've got is important to achieving peace and success.
God Bless!
Joe in NY
P.S. One question folks may ask is why isn't this being studied or why hasn't it been studied? Good question! Believe it or not I have been in contact with dozens of scientists world wide including many from the National Institute of Health in the U.S. The short answer is scientists think anything that is a "supplement" is not worth investigating. So because trehalose is a sugar you can buy on Amazon for $9 lb, and Niagen is a vitamin B supplement that costs $40 a month and can be bought online, no research facility is willing to take the time to do an in depth study. That is tragic and is the reason I am here.
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Dear Joe, What a well written and understandable letter on difficult subject. Unfortunately as yet I do not know what type I have, but this information gives hope and is better than dosing ones self with drugs that may (not) work, and, with none of the distressing symptoms.
My questions are: "Why doesn't the food supplements work on the other ataxias? What is it about the ones it does help, that the other Ataxias don't have that is effected by the supplements?"
Thank you Joe - if other reports, trials etc., were written like you have written, there is a better chance people would be better informed and understand! God bless you.
Hi PGee! Some ataxias cause damage to the cells in the brain because the mutant protein that is created by the mutant gene builds up in the nucleus of brain cells and the brain is unable to clear the mutant protein away. The process of clearing is called autophagy. The build up is believed to be one part of the cause of the ataxic symptoms. It is believed that trehalose molecules attach to the mutant protein and prevent it from"mis-folding". The mutant proteins are often bigger than normal proteins and they get "folded" and the body can't recognize them. Researchers think that by preventing the proteins from folding it allows the body to recognize the protein and then set about "cleaning it out". The problem is not all ataxias are the result of a build up of proteins in brain cells. The truth is many ataxias are poorly understood and researches simply don't know what exactly is causing the ataxic symptoms. They do know some ataxias like SCA 2 do not show a build up of toxic proteins in the brain. That is why trehalose doesn't work for everyone. Also a big question is what if your toxic protein is bigger than most. Does trehalose have the same effect? We just have zero research to answer questions like that.
On the other hand, I believe Niagen holds hope for many, many ataxias, but there are so many unanswered questions with this supplement because it is new and has so little research surrounding it. Trehalose has real science showing efficacy in ataxic patients Niagen not so much, BUT my father and aunt have shown small improvement quickly. That is simply not possible with SCA1 at age 79 and is highly unlikely to be the result of trehalose which if it works should keep the ataxic patient from getting worse and really one would only be able to say it was working if after a year or two they had stayed mostly the same. Hence, I am very eager to have more people try a daily regiman of Niagen to see if anyone else notices any changes. The two papers that have been written on Niagen are extremely exciting because they demonstrate the potential to REPAIR damage not just stop it, but we need people to try and to try not just for a few days but a few months. Repairing cells is not going to happen overnight. If it works it will take some time.
I should have mentioned this in the opening post, but Niagen can easily be confused with other "Niacin" products. Niagen is NOT NIACIN. They are very different. Niagen is Nicotinamide Riboside and made by only one company but distributed by several:
Thank you for this interesting information. I am a practicing nurse with SCA 1 living in England whose symptoms are starting to cause problems. I exercise rigorously daily and am part of the research at The National Neurological Hospital in London.
I am so interested in your writing and will try you suggested medication. I myself have been using hemp oil for a year and have experienced some benefits.
I am so excited to meet people like you! I want to emphasize that if this is going to work it may be a long time before one can be sure. With that in mind, I hope people will give this a try for at least a year before trying to draw any conclusion. I wouldn't expect to see anything at all in the initial weeks or months, but as a tiny counter point I want to say that my family has seen some minor benefit in the first month so I pray this is not an anomaly and someone else reports a similar experience here sometime next month.
Importantly I want everyone to remember I am not a doctor and the best course of action is to print out all the evidence I am listing below and take it to their doctor and then discuss if this course of treatment might be worth investigating for themselves.
I purchased rights to all these papers so if anyone would like me to send them via email just let me know!!
Another issue. Whenever one discusses supplements, the queston of purity is of concern. Niagen is only authorized by one manufacturer, Chromadex, but there are a couple distributors. In the US there is this:
I'm so excited to be meeting more and more people with similar issues to me!
First let me say that for someone who is not medical, I believe in my heart of hearts that trehalose alone will delay significantly or possibly even prevent the onset of symptoms.
I am in contact with 5 people world wide for whom that is happening two of which have Huntingtons, 2 with SCA1, and one with SCA3. These people have been eating trehalose for almost a decade at the rate of 2 to 4 Tbs a day (40g to 90g). I think the sooner you start the better and most importantly as I mentioned above it has to be forever and everyday and a lot. BioBlast's research proves trehalose causes autophagy of mis-folded proteins; it's just a matter of getting some of it into your bloodstream. It seems to me impossible to believe that if you eat 4 TBs a day your body won't end up absorbing a small amount.
As to Niagen, there are 4 primary reasons I added that to trehalose. First, my father and aunt have SCA1 and went from not having taken any steps with a walker in over a year to both taking a few steps. SCA1 never, ever, ever reverses and neither relative is on any other medication intended for SCA. They are taking medication for their blood sugar, but they have been taking that medicine for some time. Along the same lines I say that I do not have symptoms, but that is not 100% true. As I said I am 50 and genetically positive for SCA1 with 42 repeats. I am also a man of great routine. Every morning I get up at 5:30 AM, make breakfast and lunch for my children, read the paper, walk the dog, exercise, research online, run errands, make dinner, read, sleep, repeat. In that routine the first thing I do when I wake is put on sweatpants and walk downstairs. In recent years I had taken to leaning on my dresser when putting on my sweatpants and holding onto the railing as I walked downstairs. Since taking Niagen I stand on one leg and do not hold the railing. I bound down the stairs. I have been running 3 times a week since I was 14 years old. In recent years my pace had slowed to 10 minutes per mile and when I was running I would sometimes catch myself off balance ever so slightly. My pace is now back to a 9 minute mile and I lift my legs in a steady strong balanced stride. There is no scientific reason to support trehalose as the cause of these changes and 3 of us have seen a tiny but rapid change. That is reason 1.
Second, Niagen is different than other B3 vitamins. The one paper that has not yet been peer reviewed that I listed above shows that unlike other B3 supplements true Niagen, Nicotinamide Riboside, does not appear to have the same side effects. The paper shows human dosage up to 1000 mg a day with no ill effects especially no evidence of flushing, the major bad side effect of other B3 vitamins. Here though is why it's critical that people take this information to their doctor and work with them to make sure it's safe for them.
Third, in the one relevant study in mice, the results were simply astonishing, and most critical of all, the way Niagen worked is well understood and even more critically the "way of working" is exactly what the paper above proved happens in humans just as it did in mice. Humans that eat Niagen get the same boost in NAD+ that mice did. The mice in the paper I listed above had Ataxia Telangiectasia. They were fed Nicotinamide Riboside. Their NAD+ levels went up improving SIRT1 function and . . . here's the miracle . . . they grew more PURKINJE cells!! Purkinje cells are the cells in the brain that get damaged or interfered with in most ataxias; so if Niagen can truly trigger enhanced repair of Purkinje cells in humans as it did in mice, it could prove to be a huge benefit.
Lastly, and quite simply, there is extensive research on increased NAD+ production and it's benefits in humans so at a minimum Niagen may be just good for you in general.
Now there are a host of questions remaining to be answered, like what are the long term effects of taking Niagen? What is the optimum dosage? Should it be taken less than daily? Will we see more negative side effects if more people start trying it? The unbelievable tragedy though is that because this is a "supplement" serious researchers won't touch it with a 10 foot pole. I have tried to contact dozens of scientists worldwide and offered to start a funding campaign if someone would just research these two cheap supplements for all polyQ disorders including SCA, Huntingtons, Parkinsons, and others, but every single scientist said, categorically, they don't research supplements.
So there it is a very long winded answer Let me summarize. I recommended Niagen as well as trehalose because:
1) My family has seen a tiny positive benefit that I believe came from Niagen not trehalose.
2) The one human trial so far demonstrated Niagen is safe up to 1000 mg a day.
3) Research in mice shows a possible "miracle" benefit and there is good scientific basis to hope that that benefit might extend to humans.
4) There's a lot of research supporting increasing NAD+ in our bodies can help repair damage to cells in general so It sure can't hurt to try
In the end though you are right in your underlying premise. Trehalose is really the "proven" treatment for ataxia based on real world clinical research. Niagen has clinical trials that show it is safe for humans and it is a more effective NAD+ booster than other B vitamins, but nothing yet related directly to ataxia.
HOPEFULLY it will work but even if it does not then you have given me hope which I was starting to lose. I realise that I cannot prevent my present deterioration but to be able to stop it would be so brilliant. I can easily live with this disability (I am using a walker in the house and wheelchair when we go out). My sister is 4 years older than me and is in a home in Australia and I will tell her carers to try your mix.
I, my Dad and my sister all have 43 repeats so if passed on they hope it will be the same number. Knowing if my daughter has inherited my faulty gene and she might be able to prevent it starting is so exciting and wonderful.
Our number is so similar to you and by 50 I was definitely showing signs as were other members of the family so I am so pleased for you.
After what you have said I will certainly try the B3. It will be interesting for you to know if I have any improvement. I do quite a bit of fitness and am really lucky because I have a really good personal trainer, neuro-physio and speech therapist.
By the way years ago I used to help a lot with research and this included a trial they did at the ‘Royal Free Hospital’ in London using Coenzyme Q10 (a supplement) helping ataxia. I think you are in the USA but perhaps they would be interested in your ideas?
Wow again. Like I said, I am so happy to be meeting others in the same situation even if it is online. I hope you will take down my email and keep in touch. I truly am interested in all that you learn and experience! My email is p e c k j a at a o l dot c o m
I would also add that I think you should have more than hope because the work BioBlast is doing is really one answer for certain. They can't be too effusive because they need to stay within the guidelines of the FDA, but the truth is they had a 100% success rate with the patients they treated for a full year. Not everyone got better, but nobody got appreciably worse, and this is in both the OPMD trial and the SCA3 trial. That result, in combination with the decade of research in mouse models, shows that even if eating trehalose doesn't work, injecting it into the blood stream does. So the worst case scenario is we all end up stopping or slowing progression with injections rather than just eating trehalose.
Are you familiar with this paper on therapy:
Motor Training in Degenerative Spinocerebellar
Disease: Ataxia-Specific Improvements by Intensive
it is definitely worth showing to your neuro just in case they aren't familiar with it!
My dad continues to improve daily. My sister reports she feels his speech is becoming less slurred. I am so eager for others to try trehalose plus Niagen for a month or so. It would be such an incredible miracle if what I am seeing in my dad can be duplicated in others.
I gather that true Niagen, NR, or nicotinamide riboside, is difficult and expensive to come by in the UK and the number of products claiming to be Niagen are many which complicates the matter further. Sadly that is one of the big pit falls of "supplements", finding products that are real and pure.
Yes, CoQ10 underwent a multi-year clinical trial in the US and sadly showed no efficacy. I'm trying to contact the people that ran that trial in hopes they may be interested in studying trehalose.
I'm off to work for the next 3 days and may not get to a computer so Best wishes to all 'til then!
Actually, that brings me to another point I have not yet emphasized. It is my suspicion that the people for whom trehalose will have the most benefit are those who are genetically positive for a polyQ disorder such as SCA1, but who have no symptoms yet. For those people early intervention in the form of clearing toxic protein buildup in the brain may prevent the prolonged damage that causes late onset. Clearly the 5 people who are all symptom free and who have been eating trehalose for almost a decade are living proof it may work. I, for one, will be eating 4 Tbs a day of trehalose until science or my body prove otherwise.
Sudden flash of thought. Scientists and doctors have long scoffed at trehalose because it was known that very little is absorbed so the thought was how could it possibly make it all the way to the human brain. Well, here's a fact. Trehalose can cross the blood brain barrier in mice. Now add to that fact that we have proof from BioBlast it does the same in humans.
Riddle me this:; If trehalose can cross the blood brain barrier in mice and humans why the heck wouldn't some small amount pass through to your blood as it goes through 5 ft of human intestine? All of a sudden the stupidity of not trying to get people with polyQ disorders to eat trehalose years ago is seeming to me a tragedy of epic proportions. Remember, less than 3% of the trehalose you eat actually gets digested and turned into glucose. That's why the calorie count is so low and why the chart I linked above shows no spike in glucose levels after people drank a 5% trehalose solution. Most of the stuff simply winds its way through your body.
I just had another flash of thought: If trehalose can be detected in your urine after eating then that means it crossed into your blood stream.
Holy Crap! I think I might be able to get proof this works if it's possible to detect trehalose in urine!!!!!!!!!
If in 10 years, science proves I am right and trehalose ingested at a rate of about 75gs a day can protect people with polyQ disorders by delaying or possibly even preventing symptoms, I think I will break out and cry.
Just found another manufacturer of Niagen. They have a product called BASIS. The difference is it includes a second chemical called Pterostilbene which is a SIRT1 activator. SIRT1 activation is an area of growing research, but the latest consensus is that improving SIRT1 MAY help stop neurodegeneration.
Read your very interesting post and Dressy's repeat of it,,, My question is whether any of it pertains to Cerebellar Ataxia with autoimmunity as a trigger or idiopathic ataxia? My neurologists seem to think its the former but aren't sure. I have been takin IVIg for several years and encouraged to keep at it. N
Hi Netta, You probably already know this but when doctors use the term "idiopathic" it just means they have no idea what's causing it. For sure there is no formal medication available if your doctors can't identify the underlying pathology. With that in mind you might talk to your doctor about trying trehalose + Niagen on the basis that 1) all ataxias have a root in damage to cells in the brain and 2) we're talking about a sugar substitute and a vitamin B supplement so what's the harm. I'm not saying I have any scientific reason to think either will help, but like the old adage says: "It can't hurt " Anyways, I wish I could offer more in depth information. I'll try to read up on Ataxia and autoimmunity. If it really is related to an autoimmune response, I would add that there is much greater research in that field than in the field of ataxia alone so I would be very hopeful of future or perhaps even current medications of which I simply am unaware.
Not sure why it isn't available through a retailer like Amazon? Perhaps people are importing and then reselling on an individual basis or something. In any case Lit found an online source for Niagen in the U.K. that is NSF certified and priced appropriately:
Also, I just want to emphasize again for the 3rd or 4th time that if trehalose + Niagen is going to work, it will most likely work for people in the early stages of ataxia and it will likely just hold symptoms where they are or slow the onset down rather than offer dramatic rollback so results would not be apparent for at least a year. I hope and pray that for some there is "rollback", but I want to keep expectations reasonable and practical.
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Artificial Sweetener a Potential Treatment for Parkinson's Disease
Sagol School of Neuroscience researchers say mannitol could prevent aggregation of toxic proteins in the brain, in a project funded by the Parkinson's Disease Foundation and the Lord Alliance Family Trust.
18 June 2013
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Mannitol, a sugar alcohol produced by fungi, bacteria, and algae, is a common component of sugar-free gum and candy. The sweetener is also used in the medical field — it's approved by the FDA as a diuretic to flush out excess fluids and used during surgery as a substance that opens the blood/brain barrier to ease the passage of other drugs.
Now Profs. Ehud Gazit and Daniel Segal of Tel Aviv University's Department of Molecular Microbiology and Biotechnology and the Sagol School of Neuroscience, along with their colleague Dr. Ronit Shaltiel-Karyo and PhD candidate Moran Frenkel-Pinter, have found that mannitol also prevents clumps of the protein α-synuclein from forming in the brain — a process that is characteristic of Parkinson's disease.
These results, published in the Journal of Biological Chemistry and presented at the Drosophila Conference in Washington, DC in April, suggest that this artificial sweetener could be a novel therapy for the treatment of Parkinson's and other neurodegenerative diseases. The research was funded by a grant from the Parkinson's Disease Foundation and supported in part by the Lord Alliance Family Trust.
Seeing a significant difference
After identifying the structural characteristics that facilitate the development of clumps of α-synuclein, the researchers began to hunt for a compound that could inhibit the proteins' ability to bind together. In the lab, they found that mannitol was among the most effective agents in preventing aggregation of the protein in test tubes. The benefit of this substance is that it is already approved for use in a variety of clinical interventions, Prof. Segal says.
Next, to test the capabilities of mannitol in the living brain, the researchers turned to transgenic fruit flies engineered to carry the human gene for α-synuclein. To study fly movement, they used a test called the "climbing assay," in which the ability of flies to climb the walls of a test tube indicates their locomotive capability. In the initial experimental period, 72 percent of normal flies were able to climb up the test tube, compared to only 38 percent of the genetically-altered flies.
The researchers then added mannitol to the food of the genetically-altered flies for a period of 27 days and repeated the experiment. This time, 70 percent of the mutated flies could climb up the test tube. In addition, the researchers observed a 70 percent reduction in aggregates of α-synuclein in mutated flies that had been fed mannitol, compared to those that had not.
These findings were confirmed by a second study which measured the impact of mannitol on mice engineered to produce human α-synuclein, developed by Dr. Eliezer Masliah of the University of San Diego. After four months, the researchers found that the mice injected with mannitol also showed a dramatic reduction of α-synuclein in the brain.
Delivering therapeutic compounds to the brain
The researchers now plan to re-examine the structure of the mannitol compound and introduce modifications to optimize its effectiveness. Further experiments on animal models, including behavioral testing, whose disease development mimics more closely the development of Parkinson's in humans is needed, Prof. Segal says.
For the time being, mannitol may be used in combination with other medications that have been developed to treat Parkinson's but which have proven ineffective in breaking through the blood/brain barrier, says Prof. Segal. These medications may be able to "piggy-back" on mannitol's ability to open this barrier into the brain.
Although the results look promising, it is still not advisable for Parkinson's patients to begin ingesting mannitol in large quantities, Prof. Segal cautions. More testing must be done to determine dosages that would be both effective and safe.
This post is quite old. If you are a patient with a genetically caused SCA, I suggest you click on my new screen name or avatar and look over my posts especially this post that I update regularly.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Let me summarize. I recommended Niagen as well as trehalose because:
Recently diagnosed, need some help !
Ataxia, stomach problems and lycopene
