DNA Is Not My Destiny

By Danielle Legg, I Start Wondering Columnist

Women in mid-life often are surprised to find themselves part of the sandwich generation. We may be involved with our children as they are entering adulthood but still need guidance from us.  At the same time, our own parents (if we are fortunate to still have them around) may be in declining health and increasingly need our attention as they enter their final phase of life. 

But as we watch these transitioning chapters, we may start to think about our own mortality and take a closer look at how our parents are aging. Have they been relatively healthy until now or have they suffered from ongoing chronic conditions? How have they taken care of themselves? How have they taken care of their physical, mental and emotional health over the years?  Are they on medications and what kinds? Are they mobile or do they need assistance? Do they have condition(s) that I could potentially inherit? 

While looking at our parents’ experience is important, there’s one more step that we each need to take. I believe we need to ask ourselves and then truthfully answer, “What can I do to decrease my chances of being diagnosed with a disease or condition that my parents had?”

Coming to Terms

When my mother was diagnosed with Alzheimer's it was such a gut punch. Knowing there was something wrong with my mother, I had accompanied her to months of doctor’s appointments, scans, and labs. I prayed there would be a simple solution. 

We finally ended our journey in the office of a neurologist who gave her a simple memory test. He turned to me and said she has Alzheimer’s. I couldn’t even process it. How could this be? My mother, who does the New York Times crossword puzzle every day and reads voraciously – how could her brain have succumbed to such a horrible disease? I was in disbelief. 

And that was it. The doctor prescribed medication and sent us on our way. We weren’t even handed a pamphlet. We were on our own. 

With divine intervention and immense gratitude, I was able to get my mom an appointment within a few months (as opposed to the normal year-long wait) at an internationally renowned medical facility in Houston, Texas that specialized in memory disorders.  The organization was cutting edge, doing research and clinical trials and treating patients with the most current evidence-based care. 

After two very intense days of testing, they came to the same conclusion as the neurologist. My mother had Alzheimer's. But the center’s staff pointed out that not only did my mother have Alzheimer’s, that her family – my family –had a history of the disease. My mother’s father, aunt, cousin and most recently, brother all had been diagnosed with Alzheimer’s. 

Coming Closer to Home

That realization gave me pause. Was Alzheimer's my destiny? Would I get this horrible disease? What could I do to lower my chances or combat this disease? What about my own children and grandchildren? Will they get it? 

I consulted with the doctors and social workers about my concerns and whether I should get tested to see if I had the gene. They recommended that I not get tested and explained that knowing that I had the gene could potentially have a negative impact on my mental health. 

They also pointed out that in reality, we psychologically have a lot of power. If I believe I will get Alzheimer’s, I will probably get it – and having the gene only slightly increased my chances of getting it. The staff shared that there are lifestyle choices that I can do to prevent Alzheimer’s and that I should focus my energy there. Ultimately, their advice was to have a positive attitude and be mindful of my health. 

But then, 23andme, a DNA test, came out, offering to use a small amount of saliva to identify your family tree and related health issues. I had always found it interesting to think about my ancestry and heritage because I had always been told that my ancestors came over on the Mayflower.  I decided to take the DNA test along with my father and my sister. When I opened the email about my DNA, I was informed that I did have the APOE 4 gene, which serves as a marker for the disease. Having one APOE 4 gene increases your risk while having two of the genes significantly increases your risk. 

Wow! I was shocked because I had held on to the belief that I did not have that gene because my mother and I are so different. We didn’t even look alike; I definitely favor my father. But we get half of our genes from each parent– and unbeknownst to my mom, she gifted both my sister and me one APOE 4 gene each. Thankfully, my father did not. 

That discovery led to some soul searching. How would I handle this information? Would I ignore it and keep living as I did? Would I make changes to combat this disease? 

This is where I realize we are all different. How I chose to handle this information is not how my sister decided to handle it, and that’s OK. We are each on our own individual journeys, our own path. There is no right or wrong. 

Choosing My Path

My desire, which came as a result of providing care for my mom for a decade, was to have the highest quality of life for as long as possible. I didn’t want to put my own children through what I went through. 

And so my journey began. I read, I studied, I attended support groups. I became as educated as I could about the disease and prevention. I would need to rework my diet, be more intentional with exercise, use my brain, lower my stress, and think about my social life. There could be other factors to address, but this is where I would start. 

I was born with an optimistic outlook, always leaning towards what many call “the light” because I can see the good in most situations. Even difficult ones teach us lessons and allow us opportunities to grow. 

Having a positive attitude is critical when you find out news of this type. Mentally, I knew if I dwelled on the fact that I had the APOE 4 gene, I could unwittingly sabotage my efforts. I had to let it go and accept this challenge. Just because I had the gene did not mean I would get Alzheimer's, and I was not going to let this information define me. 

I’m not a doctor, but I know from research that diet is a major culprit for many physical and mental health issues. I had already been working on improving my diet for several years after my doctor wanted to put me on statins because my cholesterol was high. Over that period of time, I decided to change how I ate to see if that would decrease my cholesterol to acceptable numbers. It did, and I have been able to keep statins at bay. This was proof to me that changing things can change outcomes. 

Now, every person is different and responds in their own way. I had so many people say to me, “Take the statins and eat what you want.” That approach is okay, but I wanted to do what felt right for me physically. I knew if I took good care of my body, it would take care of me. 

Having been successful with my statin battle, I turned my focus to Alzheimer’s. I read many books and over the coming years, focused on embracing the research-based MIND diet, which  can decrease chances of getting Alzheimer’s. Embracing this diet can feel overwhelming, but I always tell people who want to dive in and eat like I do that it took me 10 years to get here. Do it gradually, take your time, change one thing in your diet at a time and you are more likely to be successful. 

Exercise also has been found to have so many physical and mental benefits, including decreasing your chances of getting Alzheimer’s.  However, exercise and I have a love-hate relationship. I have known that exercise is important and have dabbled in it over the years, but it is definitely something that I HAVE to do (even though I do not WANT to do it). I’ve found that I’m more likely to exercise when I have a goal, which tends to motivate me. For example, if I have a ski trip or a long hike planned, I work that into my exercise routine to keep me motivated. Afterall, I want to be able to participate fully and enjoy myself! But there is no secret sauce. Instead, it helps to think of exercise as something you have to do (or as one exercise guru said, “Think of it like brushing your teeth. You just do it.”)

Stress is another factor that, in my opinion as well as that of many researchers, has a direct link to many health issues. Additionally, quality and duration of sleep as well as social interactions are also important for combating Alzheimer’s. And of course, using your brain to learn new things is another key area. With all of my knowledge and efforts, I was sure to beat this disease (or at least, keep it at bay for as long as possible). 

Being Proactive

The things I have mentioned so far are not new. Women know what needs to happen to be healthier and increase our chances of enjoying a good quality of life. However, there are people who take charge of their health and there are others who don’t. 

This really interests me because I know no one wants to be in a wheelchair or carrying around an oxygen tank and spending countless hours in hospitals and doctor’s offices. Why do some of us work to combat health issues and others just accept them as a fact of life? 

This is a complicated question. Only about 30% of people take their DNA information and make changes. The reasons we don’t are mostly psychological and include: 

1. Genetic Fatalism Mindset-The view that the health risk from your DNA is inevitable and there is nothing that can be done about it so why bother.

2. Lack of Actionable Guidance-You know about your risk, but you have not been provided any guidance. Creating your own plan can be overwhelming. 

3. Social Determinants of Health-Where you live, economic status, access to resources, or working in a high stress job can create barriers to a healthier lifestyle.

We also can sabotage our efforts through our feelings of self-worth, self-efficacy, and control issues. Any story or message that was created in our minds from childhood can be an obstacle. And, of course, as women we often give so much that we don’t feel there is time or we don’t have the energy to take care of ourselves. These are all psychological barriers that are real to the person facing them. It is not easy to change our way of thinking. It is a delicate dance. 

Taking the First Step

The reality is our DNA is a framework. For the majority of us, our DNA does not have to be our destiny. How we respond to our health information is more of a determining factor of getting a disease than our DNA itself, as described in this study. 

So I ask you, what health issues run in your family? What are some steps you could take to lower your risk? What keeps you from putting a plan into action?  What is the dialogue in your head that keeps you from moving forward?  How could you reframe that dialogue to allow you to move forward in executing your plan? What needs to happen so that you can make your health a priority? 

Personally, I plan to focus my efforts on what I have control over and change things that will improve the length and quality of my life. I also realize that there are things that I cannot control. If I do get Alzheimer’s or another disease, it won’t be because I didn’t try. 

My mother was only in her late 60s when she started displaying symptoms of her disease. I want to do everything I can do to combat or delay developing Alzheimer’s. I heard a doctor say that if we are unhealthy and not worried about living a long life, we should be aware that most people don’t just die peacefully in their sleep. Instead, it tends to be many years of doctor’s visits, hospitals, procedures, medications, mobility issues, etc. that steadily lower your quality of life and also impact those supporting you.

That hit me hard because I know it’s true. My mom experienced at least 10 years of daily struggles before she passed away. I don’t want to live through that and certainly don’t want to put that responsibility on my children. 

I think about my mom often: the way she lived her life, the gifts she gave me, and the lessons I learned from her. I do believe that her Alzheimer’s was a gift to me. It softened me. Caring for another person is grounding and character-building. Looking after her became a privilege, not a burden. 

And perhaps she offered an even greater gift to me. If she had not had Alzheimer’s and I hadn’t watched her battle close-up, I do not know that I would have stepped back and really focused on my own health and well-being. Her situation forced me to reconcile with my own mortality. Sometimes it takes a monumental event to get our attention. We can allow those events to pass us by, or we can look for the learning. 

I chose to learn and take action. What about you? What do you choose? I hope you choose YOU.