Has anyone here ever tried Neurostin? My DH has PCA. At present he is on Aricept...does not tolerate Namenda. I've read quite a lot on the alz. forum and tried him on MCT Fuel. He has definitely improved. My hopes were to get him on Axona, but his neurologist has stopped that idea. She says since he has plaque built up in his arteries, he should not have the MCT. So, she wants him to try Neurostin for a month. I mentioned he had made improvements with the MCT, but she was not convinced it was worth the risk. He (and I was quite proud of him) said to her that his mental state was as important as his physical state! Side note here....a couple of weeks ago he would not have been able to gather all those thoughts together. Hoping someone will know more about this......BTW, I posted at ALZ. as "whitney."
brianna, I will be very interested in Sunshyne's research on this. Another thing to try, maybe. I didn't know MCT Fuel should not be taken if they have plaque build up. I wonder if it has the same saturated fat as coconut oil.
I am far from intelligent about this but I just googled Neurostin and it sounds like it has some of the same ingredients as the product Dr. Shay is promoting. I am still interested in his product when it gets on the market.
My laugh of the day. I googled it and got Presbeterian Church of America and American Poodle Club. On a serious note I have no idea. Be glad to hear from someone.
I looked up the ingredients in Neurostin. The ingredients have all been part of the supplements my husband has taken for a few years. Whether or not they have slowed his decline, I have no idea--they did not stop it. Just like taking Aricept or Namemna, I have no idea if either of those are helping either. So far the only thing that I know has made a difference is MCT oil.
Posterior cortical atrophy (PCA) is a progressive degenerative condition involving the loss and dysfunction of brain cells, particularly at the back (posterior) of the brain.
In the vast majority of cases, this loss of brain cells is associated with the same pathological brain changes seen in typical Alzheimer's disease, so PCA is usually considered to be an atypical variant of Alzheimer's.
PCA and Alzheimer's disease affect people in very different ways. Alzheimer's disease is most commonly associated with deterioration in memory, language and perception. By contrast, people with PCA tend to have relatively well preserved memory and language but instead experience a considerable decline in visual abilities, for example identifying and locating objects and in skills such as spelling, writing and arithmetic.
That sounds a lot like my dh. His spelling, writing and arithmetic is virtually nil and his memory regarding people he has known for years is still there. ........But originally a cat scan showed damage in the Executive area of the brain. I guess like someone else said it is all fatal and has overlapping symptoms.
LOL!! I've had some laughs at my own expense seeing what you came up with in the search. I should have spelled it out instead of using PCA. Not many people as far as I know, have this. It does cause significant problems with eyesight or eye to brain contact.
At any rate, I did post a question for Sunshyne since I knew she would be able to find things I never could in my lifetime.
I hope you all got a laugh, as did I, over the Poodles and Presbyterians!! We all need a laugh!
Someone mentioned Dr. Shay. Where would I find info on him? (I'm afraid to google......I might come up with some strange dog or religion!) LOL! Thanks for helping me out. All of us here are dealing with problems that only someone with the same or similar problem can relate to.....
Info for Brianna & Dazed... Re: arterial plaque and MCT's (aka Medium-chain fatty acids)
There's a long held belief that all saturated fats (and consuming foods containing cholesterol) causes clogged arteries, high cholesterol, plaque, etc. This mis-information has been drilled into us since Ancel Keys stated saturated fat is bad when in truth his experiments proved transfats were very harmful. Mary Enig, PhD of Weston A Price Foundation pens an excellent article titled, "The Skinny on Fats". It's the best article I've read to date that explains in great detail the composition of all fats. As pertains to Medium-chain fatty acids, which are found primarily in butterfat and tropical oils, they have antimicrobial and antitumor properties and help support the immune system.
On a personal note re: saturated fats and cholesterol levels. My husband has historically had very low good HDL cholesterol (somewhere in the 20's). Once I added organic butter and VCO (virgin coconut oil) to his diet, his HDL is now in the 'healthy' 60's. VCO is 92% saturated fat with over 2/3's of the saturated fat in the form of MCT's (medium-chain fatty acids). A low carbohydrate diet, rich in protein and good saturated fats has also lowered his triglycerides from 150 to 61. Re: (bad) LDL cholesterol, one needs to look at the particle size. Small dense particles can penetrate the arterial wall easier than large buoyant particles. The VAP test measures all sub-fractions of cholesterol composition.
My husband was mis-diagnosed with AD following 8 years of statin (cholesterol lowering) drugs. He also experienced a long list of other side effects that resolved after stopping Lipitor. Six years later he's still experiencing cognitive deficiencies which our naturopathic physician is trying to improve or reverse. I saw an ad today for "Neurostin" and that's how I arrived at this forum. It contains many of the supplements my husband is currently taking. Neurostin's website lists the ingredients, but does not state the dosage (of each ingredient) contained in each capsule. I'm always leery when a products mfgr states it's a "proprietary formula". One ingredient "Alpha GPC" peaks my interest. Hubby is already taking: Phosphatidylserine, Vinpocetine, Folic Acid, B6 and B12, Alpha Lipoic Acid and Pantothenic Acid (vitamin B5). We get all of our B's in a sublingual B Complex and we drink lots of green tea.
Frankie - I found the ad for Neurostin when I was researching Prevagen. Since my hb's vitamins and supplements contain most of the quantities already in Neurostin I opted not to explore it any further.