BY MARTY REISWIG
Do you want to know if you’ll develop Alzheimer’s in the next 10 years? This is the question i’m faced with daily. My name is Marty Reiswig, and my family has been studied for decades because we carry an extremely rare genetic mutation that causes early onset Alzheimer’s disease.
My grandfather became symptomatic in his 40s and died the year I was born. My uncle’s age of onset was 54, and he passed at 61. And my father was diagnosed at 54, too, and is in the final stages of the disease at 65. Because my grandfather was one of 14 children, our family tree is far-reaching, which is why we’re a valuable asset to the Alzheimer’s research community.
We jokingly call ourselves the X-Men because we are mutants who want to help save the world from Alzheimer’s. Many of us are participants in the Dominantly Inherited Alzheimer’s Network (DIAN) and affiliated drug trials. The DIAN project has 36 research locations around the globe — with one at Washington University — and its researchers study fewer than a thousand people like me who are at risk of inheriting the dodgy gene mutation. Some families suffer from an even earlier age of onset, in their 30s. You can probably imagine the fear and loneliness we grapple with as a result of our genetic makeup. To cope, hundreds of us have found one another and hold a deeply moving and meaningful annual conference, where we listen to what researchers and pharmaceutical companies have learned and — perhaps most importantly — connect with one another.
In my estimation, about half the men and women at risk to carry one of these genes have chosen to receive genetic testing and learn their status. I have chosen not to — for now. I don’t want to know yet because of the impact that knowledge would have on the people in my life. If testing reveals I possess the genetic mutation, my wife and my mother will begin suffering from sorrow well before I develop symptoms, and my children will know that they have a 50 percent chance of sharing my fate. For now, my wife and I choose to appreciate the moment, because I might have about 10 years left of mental clarity. However, I’m nearly 40 now and, as I begin to plan and prepare for the future, the burden of not knowing grows and could become greater than the burden of knowing. My wife and I want to be honest, knowledgeable and as prepared for the future as we can be while still enjoying the present. It’s a delicate and difficult balance.
My fellow X-Men around the world are committed to the taxing research studies we participate in because we’re passionate about eradicating this horrible disease from our families and the rest of the world. How rich in heritage would our world be if Alzheimer’s wasn’t a threat? Imagine the stories passed down, the memories held and shared. We want our grandchildren to read about Alzheimer’s in history books like you and I read about polio.
Marty Reiswig is a participant in Alzheimer’s research at Washington University School of Medicine.