I am sorry to hear about anyone suffering from this disease. We have had several encouraging protocols introduced to us over the past month. The first (and the easiest) is adding 6-8 tablespoons of coconut oil to the diet every day. We get ours from Whole Foods and find it in the supplement section. It is the nature's way brand, organic pure extra virgin coconut oil with 62% MCT's. Here is a link to a video discussing the benefits of adding coconut oil to the diet.
As discussed in the above video the theory is that the brain can no longer use glucose as fuel and the brain tissue dies. The MCT's in the coconut oil are used as an alternate fuel source. Along those same lines, Ketones can also be used as an alternate fuel source for the brain. These are released by eating a ketogenic diet and putting your body into ketosis. The first phase of the Adkin's diet is a program to put you into ketosis. You can test your ketosis with Ketostix found at most drugstores. We have been to see Dr. David Perlmutter in Naples Florida who is a neurosurgeon studying all types of neuro- degenerative disease. He has written several books but also recommended we read Primal Body, Primal Mind.
The most important thing of all is to do consistent aerobic activity 5-6 times a week for 45 minutes to an hour, making sure to stay in the 50-75% heart rate range to make sure you stay in the aerobic zone.
He has found that along with eating a ketogenic diet a person suffering from any inflammatory disease should either test for gluten sensitivity with the extensive Cyrex gluten sensitivity test or just eliminate gluten from their diet entirely. The thought is that there are all ranges of gluten sensitivity that go far beyond Celiac disease. Taking that a step further is to find any other food sensitivities that may cause inflammation in the body. A great way to do this is to find a LEAP therapist in your area by calling 1-888-NOW LEAP (1-888-669-5327). The LEAP protocol tests for just about every food but does test for gluten so doing both the CYREX gluten test and the LEAP food test is recommended. (It was recommended by the nutritionist who works at the Perlmutter Health Center in Naples, Florida).
When you follow a ketogenic diet your body looks for ways to produce glucose and targets the muscles when you are eating low carbs. For this reason it is important to do weight bearing exercise two times a week for about 30 minutes each. It is my belief that using your own body weight in the form of push ups, squats, pull-ups and planks is sufficient. I love the work out recommended by Mark Sisson. I will provide a link in the near future to his books and website. I am a big fan. I am working to allow for the proceeds generated from the sales of books through this site to be put into the staysharp fund so stay tuned!
The greatest thing about all of these theories is that anyone can implement them because they are all diet. That being said it is really tough and a big life change. As a daughter who is worried about taking preventative measures I have also adopted this primal lifestyle and added coconut oil to my daily eating plan.
Dad also had very low B-12 levels and is now taking B-12 injections and had extremely low Vitamin D3 which plays a huge role in everyone's over all health. He is taking a prescription D3 to get his levels up. Get to know your level! It should be close to 70. It is also highly recommended everyone take fish oil that contain high levels of DHA (Nordic Naturals Pro DHA is a great supplement but is very hard to find and may need to be ordered through a physician. You can get the normal pills, not the pro, at whole foods).
Dad started the diet about 3 weeks ago and is mostly frustrated because he feels like one of his last enjoyments was ice cream and chips and now those are being taken away too. The results are slow and he would like to make sure "the juice is worth the squeezin'". We are going to start by trying this for 3 months and go from there. One day at a time right?
I am especially interested in the Oxford research (as shown in the video above) that is manufacturing super strong Ketones and if the diabetes of the brain theory proves solid it would be an incredible leap for this disease.
Lastly, we have been put on the list for dad to take part in a new study at John's Hopkins studying the insulin delivery to the brain because as all the theories above, the consensus is an inability to use glucose which is essentially "diabetes of the brain". That is slated to start in late spring/early summer and I will post on any updates.
This is a lot of info but I hope you find it helpful.
Thanks for your comments and support. We are all in this together and as a nation need to fight to fight for more research and development funding.