Never ever try anything based on some random internet comments. Always talk to you doctor before trying anything new.
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I am not a doctor or a researcher, but I am a highly educated patient who has spent the last several years reading literally hundreds of research papers AND as such I have developed a couple of theories. Sadly these are really just the musings of a random internet voice as I have no way of researching my ideas.
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First, I am a patient like most of you on this site. I have a genetic diagnosis of SCA1 as does my father, aunt, and sister. I am, at the moment, symptom free. I have been researching "alternative therapies" for several years ( healthunlocked.com/ataxia-u... .) At the heart of SCA1 and many other neurological disorders lies a bad protein. A bit of bad DNA is causing my body to make a protein that the body needs for cellular communication, but in my case and in the case of many other diseases the protein is too big so it "folds". Scientists call this process "mis-folding". It turns out when the protein mis-folds it becomes toxic to the other cells in the brain. Exactly why and how that happens is not clear, but scientists know that in Parkinson's, Huntington's, many SCAs, and even in Alzheimer's it is a mis-folded protein that seems to lie at the heart of the diseases.
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What scientists also have learned is that there are many molecules that can attach to these bad proteins and prevent them from mis-folding and thereby allow the brain to clean them out. The single biggest issue is how do you get such molecules into the brain. If you read my posts you will find many, many research articles on one molecule in particular that got me started on this whole "alternative therapy" research kick, and that molecule is trehalose. Way back in 2004 scientists in Japan gave trehalose infused water to mice that had SCA1 and Huntington's disease and lo' and behold the mice got better. Since that study dozens of other researchers have studied trehalose and other molecules and found them all to be good "chaperones". A chaperone is a molecule that can bind to a bad protein and "chaperone" it right out of the brain.
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Alright get to the point already Joe 
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Over the last few months I have come to the conclusion that mannitol is similar to trehalose, and that both hold promise of being helpful to people with neurological disorders. Now today, I found another molecule that I think is equally interesting, and most importantly and the whole reason for this post is that it comes in a nasal spray form intended as a general over the counter health aide, BUT in my wild reaching mind I wonder if it might not have the potential to get to the brain and clean out bad proteins.
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Here is the study that got me on this train of thought. In this study the researchers made a bigger molecule out of the basic sugar molecule (side note: keep in mind they can't patent and sell xylitol since it's a simple sugar, but if they create a "man-made" version it can be patented and sold), and examined the man made molecules ability to open up the blood brain barrier. Their hope is to find a way to deliver gene therapy into the brain without using invasive surgery, but to me, based on my research, it's enough that the molecule makes it to the brain. I should note that mannitol is mentioned in the beginning of the paper and mannitol is a well known disruptor of the BBB, and there is research on trehalose showing that it too crosses the BBB. (See my posts for research links).:
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researchgate.net/publicatio...
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So that is interesting right, but really that's not the main point. Here is my main point . . . those who follow me know that for almost a year now I have been making a solution of trehalose and water and spraying it in my nose daily on the hope that some tiny amount of trehalose finds its way to my brain through the nasal passage which is a proven conduit to the brain for many other molecules. This is all HIGHLY controversial as I am acting on my own with NO research whatsoever to back up these ideas, but one of my hopes has always been to find a nasal spray that is commercially available as that would have a governmental stamp of safety. Well today I found one and it has xylitol as it's primary ingredient.
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No more making my own nasal spray. Now I can give my nose a squirt at night and use a commercially available product. Will it actually do anything at all to help ataxia? I have no proof, but as part of my overall theory on how best to attack my disease I feel very strongly that it requires many tiny pieces working together to repair the damage caused by the bad proteins. It takes decades for the bad proteins to impact the body and cause symptoms so it is my belief that decades of tiny amounts of molecules getting into the brain MAY be enough to slow or even stop progression. So will a squirt a day cure my illness? Probably not, but what have I got to lose by trying something when I have a disease where doctors have NOTHING else to offer. Anyways, thats my crazy thought of the day
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Joe
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xlear.com/store/xlear-sinus...
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Trehalose and nicotinamide riboside as treatments for ataxia
Blood tests negative - now what?
Cerebellar Ataxia of my 3 Year old son
