How sad and cruel is the disease process known as dementia, that so many people finish out their lives without memories of what they have accomplished, unable to recognize the people they loved and who loved them, and finally unable to remember how to perform the simplest physical maneuver such as standing up and sitting down. How sad and cruel that people have to watch their beloved spouse or parent slowly slip away in this manner, and then worry that they will suffer the same fate.
Presently, there is no cure for Alzheimer's disease. After decades of study and many billions of dollars spent on research, the causes of Alzheimer's disease are still mostly unknown, and pharmaceutical companies have yet to find a treatment that will stop, much less reverse, its downward spiral.
A recent campaign by a national Alzheimer's organization pronounced that this disease "has no survivors," a message intended, no doubt, to promote contributions for research, but also a message that conveys a sense of hopelessness to the very real people and their families who are dealing with Alzheimer's disease now. In March 2009, Steve and I attended a conference presented by this organization in Washington, D.C., where they proudly announced the "good news" that a cure is on the horizon, probably within five years. This was not good news to us and to the many others who are dealing with this disease in the here and now. This was the same message we had heard five years prior when Steve was in the early stages of this disease. At that time, we were so very hopeful that, if he took his special medications to "slow the decline of the disease," he would survive in a meaningful way, long enough to enjoy the benefits of the promised cure.
When you are a relatively young couple such as us, it is quite a shock when it becomes apparent that we will not get to enjoy the golden years of retirement that most people look forward to. Like many others contending with the disease, we often talk about the fact that, if Steve could just stay the way he is now, we could still live with this disease. The cold reality is that neurodegenerative diseases, such as Alzheimer's, are relentless, and hope fades with each passing year until it is finally extinguished. We cannot wait five more years, because we don't have five more years.
This book is about ketones -- tiny molecules of organic fuel that have been around since the beginning of life on this planet and have insured our survival as a species. These are molecules of hope for those suffering from Alzheimer's and other degenerative brain diseases. A drinkable form of ketones can be made now in the National Institutes of Health lab of Richard Veech, M.D., D. Phil., a world-renowned researcher who has been working with ketones for decades. But it will take substantial money and several years of clinical trials after the money comes through to be available to the millions who need this. Sadly, competition is fierce for research dollars, and the money to mass-produce this ketone ester has not come through as of this writing. As it often does, politics has gotten in the way of true progress.
My primary goal in writing this book is to draw attention to the existence of ketone ester, get the mass production of ketone ester funded, and get clinical trials of ketone ester on the fast track toward Food and Drug Administration approval. I hope this book will increase awareness in such a way that the powers-that-be can no longer overlook ketone ester and will be pushed to fund its production. I also hope that an explosion of ketone research will occur. For those dealing with dementia and other neurodegenerative diseases, this cannot happen soon enough.
We need this miracle now, but it is not here yet. While we are waiting, we can take advantage of a metabolic miracle that occurs in our bodies when we eat certain foods that contain medium-chain fatty acids. These fats found primarily in coconut and palm kernel oils are converted in the liver to ketones, which can be used by the brain and most other organs as fuel. The levels of ketones we can expect from consuming these fats are relatively low compared to the lab-made ketone ester; however, many people can expect a reprieve from the downward spiral of this disease. This reprieve may come in the form of improved memory, a return of personality and sense of humor, greater social interaction, resumption of daily activities, and/or relief from certain physical symptoms. These effects are very real and very meaningful, not only to the people suffering from the disease, but also to their caregivers and other loved ones who are suffering with them.
For many people, the difference after beginning this dietary intervention is readily apparent and can even be dramatic, as it was in my husband's case. For others, the reprieve may come in the form of stabilization rather than obvious improvement. For this reason, I encourage caregivers to keep a journal so that several months later they can look back to decide if this dietary intervention is helping to at least stall the disease process. How long we can expect this reprieve to last is uncertain since this discovery is so new. At the time of this writing, it has been nearly three years since we found and instituted this dietary intervention for Steve. He has often told me that the light bulb came back on the day he started consuming medium-chain fatty acids. Some of the changes were fairly obvious during the first few days, and others took many months to become apparent.
Compared to early in 2008, Steve is no longer depressed. He is happy and feels that he has a future. His personality and sense of humor are much more like the sweet husband I had 10 years ago, before all of this happened. He is sociable, laughs, participates in conversations (even in a large group), and contributes with jokes and comments of his own creation. He no longer has any of the physical symptoms that were affecting him before the dietary intervention, such as tremors, a weird gait, inability to run, a visual disturbance that interfered with reading, and sudden episodes of faintness. His ability to stay on task improved to the point that he was able to take on a volunteer job at the hospital where I work. His short-term and recent memory is far from normal, but they are much improved. A magnetic resonance image (MRI) showed considerable shrinkage in Steve's brain before we began this dietary intervention, meaning that much of his brain tissue has died. So we know there are limits to how much improvement we can expect. In April 2010, two years into this intervention, his MRI was reported as stable.
The road to recovery has not been free of some serious bumps. Steve had one major setback in the summer of 2009, lasting several weeks. He became more dazed and confused during an illness, and some new problems popped up that have not completely gone away. However, with patience and persistence, we have seen a return to his previous baseline in most respects.
This dietary intervention may offer even more hope in the form of prevention for those of us who are at risk of developing Alzheimer's and other neurodegenerative diseases. The more I learn about ketone bodies, the more I conclude that short- and medium-chain fatty acids may be essential fatty acids for some, and perhaps all, of us. If we incorporate these essential fats regularly into our diet, we may be able to avoid some of the damage to our brains and other organs related to the aging process.
After Steve improved in response to medium-chain fatty acids, I made considerable effort to get the leaders of a national Alzheimer's organization and the Alzheimer's Study Group to investigate this and make the public aware of it. I was told that extensive clinical trials are needed before they would help get the message out.
Clinical trials can take 15 years from the time the first applications are made for funding until they are completed. Most of those currently suffering from Alzheimer's disease don't have years to wait. They may not be with us in five or even three years. Oils and other foods with medium-chain fatty acids are not dangerous drugs. They are foods that have been consumed on a regular basis for millennia or longer in other parts of the world where people first evolved. These are foods that are available on the shelf in nearly every natural food store and many grocery stores.
We can take advantage right now of the metabolic miracle that happens when we eat foods with medium-chain fatty acids to try to get a reprieve from the nightmare that is Alzheimer's. I don't know how long this reprieve will last, or even if it will happen for you and your loved ones, but what do you have to lose?