I Don’t Want it to Be Me.

In Impacting Patients, Print Issues by Anne Rice

When my uncle passed away from Parkinson’s disease, I didn’t think too much about it. I thought about him but not the disease. When another uncle passed of early-onset Alzheimer’s disease, I felt bad for my cousins; but I still didn’t think about the disease itself.

Close to home

When my mother became forgetful, I chalked it up to her being older. I mentioned it to my father, and he quickly dismissed the notion that there was anything wrong. Eventually, a time came that there was no denying it, at least not for me. She didn’t have simple memory loss; she had a disease. At the time I had become a bit of a science nerd, and I thought that I would read up and help her solve it.

I finally came to the realization that there wasn’t a fix; no medications or brain games would be sufficient to halt the disease. That subsequently led to frustration and despair. What my own future would look like was always in the back of my mind. Would a brain disease be my destiny? This deep fear was gnawing at me.

Then, things changed.

In 2007, my son was 6 years old and loved reading. On weekends we would go to the bookstore and spend hours there, almost using it as a library. Periodically we would buy something, but most often we were window shoppers. His section of the store was in the back, and I passed material of my interest along our jog to his department. I would sometimes grab a few books that looked interesting as he was tearing through the Magic Treehouse series.

One day I passed by a book called “Still Alice” by Lisa Genova. The fictional story was about a Harvard Law professor who is stricken with early-onset Alzheimer’s disease. I would like to say I picked it up for the subject matter, but that would be a lie. It had scenes from Cape Cod, and for me, that was similar to the famous line “You had me at hello” from the 1996 movie, “Jerry McGuire.” I found out later that the author was herself a Harvard neuroscientist whose own grandmother was stricken with what at the time was called senile Alzheimer’s disease. When Lisa Genova originally tried to get her book published, no one wanted the manuscript. “Too depressing,” they said, and, “Who wants to read about Alzheimer’s disease?”

So, what does a neuroscientist do when she can’t get published?

She self-publishes and sells it out of the trunk of her car. The book was surprisingly popular, and in time there was a bidding war. A major New York publishing house managed to grab hold of it. The major motion picture arrived seven years later, and the rest is history. Her story stands as proof that when a woman has a mission or passion, nothing can stand in her way. The book fascinated me. I look back now and firmly believe there was some sort of divine intervention that led to me finding it that particular day. We never really know how our lives will unfold, do we?

Ten years later, I was coming close to my 30-year clinical dental hygiene anniversary, and I was becoming enamored with oral-systemic health. Falling in love with science and research was so different than I had ever lived my life before. I had taken a course on cardiovascular prevention for healthcare providers, and it was the most intense continuing education I had experienced up to that point. I was hooked… hooked deep. It was the fuel I needed to start a business, albeit small, educating anyone who would listen about relationships between the mouth and the body. As I was learning and training, I was stupefied at some research I came across about dementia.

Plenty of research no definitive answers

I knew at the time that my mother was not going to get better, and I was still extremely worried that I could become a victim down the road as well. I knew there was no treatment or cure for Alzheimer’s disease, along with most other forms of dementia, despite hundreds of millions of dollars in research. No one could land on one definitive cause, however, cognitive decline is similar to most systemic diseases in that prevention is key. That resonated with me, maybe because my entire career I had been a prevention specialist of sorts, and it was compelling that this was the only thing researchers were actually in agreement on.

Books were being released by the droves with tips and tricks for prevention, but it seemed hardly anyone knew this information. Rudy Tanzi, Ph.D. was one leading researcher whom I had followed extensively. He spoke about something called modifiable risk factors.

Modifiable risk factors are elements in our power to change, unlike age, gender, and genetics. After much study, I intend to argue that we may actually be able to modify the genetic component with changes in lifestyle. During my research, I found estimates that 35% of current Alzheimer’s cases could have been prevented with modifications to lifestyle and habits. Additionally, interventions could perhaps delay the onset in others. If we could delay the onset by five years, for example, we could cut the numbers in half.

The current trajectory of Alzheimer’s disease is staggering.

It is now the fifth leading cause of death, beating breast cancer, and prostate cancer combined. By 2050 here in the United States, we are looking at 14 million Americans being affected.  Two-thirds of these cases being women. We need to support each other as a collective group in the pursuit of better brain health. This single form of dementia has a future estimated cost of over a trillion dollars, not including all of the free care contributed by friends and family. If we as women do not get the disease, we very well may care for someone who does in the future.

As I researched the risk factors, I saw that many were elements that I assessed in my dental chair. Sleep, blood pressure, diet, smoking, and insulin resistance were a few of the factors I found in common. Vitamin deficient anemia increases a person’s risk over 2.5 times and is something that I could easily see in the oral cavity.

Oral manifestations

I discovered that when a person has lower than normal levels of B vitamins, it contributes to an increase in homocysteine, which significantly increases the risk of not only Alzheimer’s but also another dementia form called vascular dementia. We see oral manifestations such as angular cheilitis, glossitis, and red burning tongue very plainly. Alzheimer’s dementia is defined as an age-related neurodegenerative disease characterized by several neuropathological markers including something called amyloid-beta plaques, tau tangles, inflammation, synaptic impairment, and neuronal loss that leads to cognitive impairment.

Once again, you had me at inflammation. The plaque and tangle hypothesis that researchers have spent so much time and money researching has now morphed into a neuroinflammation hypothesis. The human body’s innate immune system is trying to stop the inflammation in order to save the brain. Some of the biggest culprits of this brain inflammation are bacteria, yeast, and the herpes virus.  All things I deal with in my office.

Personal changes

You may wonder what do I do personally that may decrease my risk, considering all I know about cognitive decline and risk factors. First and foremost, I prioritize my sleep. I track it through my smartwatch and a new device I bought called an Oura ring. I pay close attention to all the things that can lead to a decrease in sleep quality. And, I limit caffeine to very early in the morning so that it does not interfere with my sleep at night. My bedroom is exceptionally dark and purposely cold. I do not allow any electronics in the bedroom with the exception of one clock. I take a very serious look at whether the wine is really worth the lack of quality sleep.

Circadian rhythm is the internal process that regulates the sleep-wake cycle, and you can improve that cycle by regulating light. I work to get an abundance of sunshine in the morning, and our home is quite dim in the evening. I try to get eight hours of sleep per night. Exercise every day, which helps with sleep. I also include a bit of mindfulness mediation to keep me more relaxed as I try to fall asleep. Eating healthy is a work in progress, but I limit my sugar consumption because poor blood sugar control can keep you awake.

I have come to accept that I cannot predict my future.  And I have released the need for control that I once thought I needed to have over my life. Of course, I don’t want it to be me. But right now my focus is on my mom’s journey in this final season of her life. I am grateful for all the years we have had together and am grateful for the time we have left.