Story by Richard Apple.
My family history with Alzheimer’s seems to extend back centuries. I once read a diary written by John Borland, my ancestor who came to this country from Scotland in 1843 with his wife and ten children. Just before departing to this country, he went to visit his mother. John had written a description after his visit, emphasizing that she did not know him. Those words say it all. Alzheimer’s wasn’t known as a distinct disease until the 1900s, but it may well have caused her inexplicable confusion.
I have witnessed Alzheimer’s produce devastating effects firsthand. Both of my grandmothers, two uncles, and my mother faced the disease. The history is very long, which comes with a mix of emotions. The long history of Alzheimer’s in my family is a legacy of joy and love mingled with pain and grief. Happy and painful feelings. My family history puts me at risk for Alzheimer’s, but it has also given me resolve to help break the chain of suffering caused by the disease. The history gives me the drive to help cure this disease.
I enrolled in my first trial at Great Lakes Clinical Trials in Chicago immediately after I retired four years ago. This is my attempt to make a difference in the search for a cure. The experience was extremely positive, and I have enrolled in three more studies since I went for the first time. I have also encouraged many people to become citizen scientists like me, and it would be an incredible thing to see people join me. Even if a study you participate in does not immediately yield a cure or effective treatment, every clinical finding adds a piece to this puzzle that needs to be solved.
My family experience with Alzheimer’s has been intense but unfortunately not unique. Supporting my Uncle Ralph opened my eyes to the realization of how ill-equipped our healthcare system is to care for people with dementia and the lack of resources to support their caregivers. Alzheimer’s isn’t just a family tragedy because I see it as a growing public health and economic catastrophe. According to the Alzheimer’s Association, over six million Americans have the disease currently. As the population ages, this number will more than double by 2050, potentially overwhelming the health and social service systems. There needs to be a solution to make a change.
If you have a family history of dementia or concerns about your memory, you should consider volunteering for clinical research. It can give you a sense of purpose, and you may learn about your health. There is information located online to help you connect with a local research center.
When I think about my mother, I obviously remember the struggle of caring for her in her final years, but I also cherish memories of the vibrant life she led. Into her late 70s, she walked five miles every single day, brimming with confidence and strength. Even with her disease, she was able to experience joy, and it was my mission to help bring her those opportunities. I learned a lot from that time. I am now trying to identify the things that bring me joy and communicate them to my family. Providing them with a plan to guide my care and support will ease their journey and maximize my opportunities for joy if I develop Alzheimer’s. A friend of mine who lost his wife to Alzheimer’s suggested that I pay careful attention to the potential early signs of the disease. Tracking these potential signs gives me a sense of control, but it also can spark my fear as I see subtle changes in my driving, attention span, and daily living. For example, I will frequently start to put things into the pantry that belong in the fridge. At this point, I can catch myself, but I worry that a day may come where I start leaving them in the pantry. Here is a list of what brings me joy: faith, community, friendships, intense trail running, biking, trying to eat well, caring for my health through regular check-ups, taking my cholesterol and blood pressure medications, enjoying time with my young grandchildren, and having dates with my wife. Exercising my brain and body with activities that give me joy will help maximize my health so that I can be as resilient as possible to delay and possibly prevent the onset of symptoms.
We need to break the chain of suffering caused by Alzheimer’s. I can’t bring back my mother, but I can do my part to find a cure by joining a clinical trial and creating a plan to help guide my family in maximizing my ability to experience joy.
Learn more about Alzheimer’s and dementia trials looking for volunteers at alz.org/TrialMatch.