Where do we go from here, moving beyond the Mindset Clinical Trial
Update to Please Share Someone, you may know, with Younger-Onset Alzheimer’s
Well unfortunately, we had our last visit for the Mindset clinical trial, the other day. I tried my best to have Catherine continue in the program but was unsuccessful. What we have noticed during this drug trail that it did, in fact improve her cognitive skills. It was not meant to improve memory but to give those suffering from this disease confidence to do things that they had given up on.
To get into the program we had to cut her dosage of Donepezil In half so first things first I will up the dosage back to 20 Mg a day. 10 Mg in the morning and 10 Mg in the evening since prior to us entering into the program I had to split the dosage since 20 Mg at once caused problems with her sleep.
Moving forward I will continue with the protocol that I have developed on my own. To review here is the protocol.
Vitamins and Medications
I developed the following Vitamins from a http://www.awakeningfromalzheimers.coms series.
Vitamin D3. 5000iU
Omega 3 Fish oil
As we travel all over the world I make sure she gets Catherine’s morning and evening Medications adjusted for time zones.
As we all know our brain and body goes through a very important repair process while we sleep, so once again, I try my best to make sure she gets anywhere from 8-10 hours sleep a night.
Often people with ALZ have a tendency to withdraw but as we travel and do tours we have plenty opportunities to interact with others.
We all know that exercise is crucial to ones good health and as we run all over the world we get plenty opportunities to exercise. On top of our race schedule we also make sure we get at least 10,000 steps per day. I can tell you that achieving this goal also gives Catherine a much-needed great sense of accomplishment.
Travel/seeing new and exciting things
ALZ first works it’s destruction on the short-term memory part of the brain. Our adventures enter in her long portion of her brain so she remembers those experiences and gives her much-needed satisfaction. This is counter intuitive since many believe those with the disease do better with routine. We however believe that routine in some cases are good but for us at the same times leads to boredom.
We have read a lot about diet and at one time had tried a gluten free diet but now we are more or less on a Mediterranean diet.
As we all know alcohol can wreak havoc on brain cells but at the same no one wants to go through life without enjoying it and a social glass or two of wine with dinner is totally acceptable.
Since we had started this current protocol around the same time as she started taking RVT 101 we can not be absolutely confident that the drug gave us the positive response that I mentioned earlier. With that said our hope is that there is not a drastic back slide from where we are now.
There are a couple of options as we move forward. One would be to enter into another clinical trial but none of them sound that promising. One is an infusion of a drug every two weeks and they are at the double-blind level. With that, there is once again a chance she would get the placebo during this phase of the trial as she did with the first part of the Mindset trial.
There is another one being done by a physician in the Atlanta area but they would require for the current mindset clinical trial drug RVT 101 to be entirely out of her system and that would will take several months. One more that is currently taking place in Australia and it will be over a year before it comes to the USA.
We have decided, in the mean time, to try a recode protocol developed by Dale E. Bredesen, MD in his book called The End of Alzheimer’s. I am presently listening to it through Audible and will see what modifications I need to make to our current protocol.
He has trained hundreds of doctors across the country on his recode protocol and will see if I can find someone in the Atlanta area that practices that protocol. The premise is that the Amyloid Beta plaques and Tau tangles that develops in the brain are a perfectly normal response to the attack on the brain so his protocol involves finding the underlying cause of those attacks.
Once the harmful identities are determined, a diet will be developed along with taking appropriate vitamins and minerals. So far it sounds like we might have to go back on a gluten-free diet coupled with stress reduction, adequate sleep and exercise. We already have the last three covered.
I must admit, that this book has gotten mixed reviews, from folks on several Face Book groups that, I belong to, regarding ALZ. I am rapidly coming to the conclusion that this disease will not be defeated with a single pill. It would be more appropriate to believe that it will require a change to lifestyle and we are willing to make those changes.
It does help my mental state to share my thoughts here and also within those Face Book groups. I have also learned how to handle the day-to-day challenges this disease presents to both of us and how to respond appropriately. If anyone reading this has any comments, concerns or suggestions, please send them to me at firstname.lastname@example.org or comment here. Also if you would like to read about our journey from the very beginning you can read it at, http://www.playhard-havefun.com/please-share/.