The following is the transcript from my speech that was presented at the final general session on Saturday January, 28 2017 to the Alzheimer’s Association 2017 Leadership Summit.
Good morning and thank you for the opportunity to speak with you today. I was diagnosed with younger-onset Alzheimer’s disease in March of 2016 at the age of 51. I endured almost a year of hospital visits, testing and misdiagnoses. During this time, the majority of the physicians and neurologists mentioned the possibility of Alzheimer’s but disregarded this diagnosis because I was too young. I have a strong family history of the disease; my father is currently living with Alzheimer’s and my grandfather and uncle have both passed away from the disease.
As my symptoms continued to interfere with my daily life, my wife Kim and I grew more frustrated. I was experiencing trouble with speech and memory loss in addition to balance issues and facial twitching.
At one point, after sharing these concerns with yet another specialist, and desperate for answers, I was told to follow-up with an additional round of neuropsychological testing and read a book about meditation. This was not what we wanted to hear.
Needless to say we were at our wits end. My wife, who never quits on anything, contacted Columbia University Medical Center where I was eventually diagnosed with Alzheimer’s disease. I am very grateful to Dr. Karen Bell and her staff for the time and care they provided me and Kim during this difficult time.
Kim actually received information about my diagnosis before I did. She called me from work and arranged to pick me up so we could talk privately away from our kids and my parents who now live with us. We sat on a park bench and she told me, “You have Alzheimer’s”. We embraced each other and wept.
Sharing my diagnosis with my three children was extremely difficult. My youngest daughter, 18 was very vocal and angry. My middle daughter, 20, cried and said, “You’re going to forget me.” That was devastating to hear. My eldest son, 22, tried his best to deny I was ill. He finally accepted it a few days later and then cried in my arms like a babe.
Kim and I had been doing our own research around the cause of my symptoms and already knew what the diagnosis meant. We made an appointment with Dr. Bell to discuss the next steps. I wanted to know what my prognosis was, and “how long do I have to live?” I wanted to know what to do next and how I could be proactive in planning for my future.
My wife and I met ten years ago on eHarmony. We’ve worked hard for years to make our blended family a successful one. After ten years of a wonderful marriage to an amazing woman I can’t help the feelings of sorrow that I may not survive to be with her into our golden years and leave her a widow at a very young age.
I’m overcome with sorrow thinking I may never walk my daughters down the aisle or that I may never play with my grandchildren. I hate thinking of these things but they are very likely my reality. I must acknowledge that my faith has been a supremely important for our family’s ability to sustain us through these feelings, to accept the diagnosis and live to find joy daily.
A few days passed as I digested my situation. I’ve never been one to sit idle. I said to my wife, “I want to do something about this; I don’t want to just sit back and not do anything. I immediately reached out to the Delaware Valley chapter and said, “what can I do?”
With the support of the chapter, I began working on a Friend Raiser event called Walk to Remember. Along with the Delaware Valley and Greater New Jersey chapters, I participated in several Walks in 2016 and raised close to $5,500. So many friends, family and community members came out to rally alongside me. The feelings of love and support were overwhelming.
The Alzheimer’s Association gives me great hope that together we will defeat this disease. Your work to advance research, raise awareness, and support individuals and families affected by this disease is making a difference for others like me. The direct support you provide through education programs, support groups and social engagement is critical to our well-being.
When a person is diagnosed with Alzheimer’s- especially someone like me who is in the prime of my life, your world can come crashing down all around you. And in many cases, it’s difficult not to withdraw and become isolated from the world around you.
Yet, during my time of greatest need, YOU helped me feel less isolated and alone. YOU gave me purpose and helped me realize that I can still live a meaningful and quality life. Because of YOU, I did not give up. When I say “you”, I am not referring to the Association as a whole; I am speaking to each of you who get up every day with a singular vision, a world without Alzheimer’s disease.
It’s been said that great things are done by a series of small things brought together. This has never been more evident than in the role each of you plays to make great things happen at the Alzheimer’s Association.
Zig Ziglar, the renowned leadership author and motivational speaker, said “YOU were designed for accomplishment, engineered for success and endowed with the seeds of greatness!” What YOU do makes a difference, and you have to decide what kind of difference you want to make.
As you leave Orlando and return home, please know that all of us – me, my wife Kim, my ESAG friends Brian, Ken and Barb – are counting on you. My children are counting on you. Everyone living with thes disease is counting on you. And most importantly, those yet to be diagnosed and their families – are counting on you. I am confident one day there will be an Alzheimer’s survivor because of the work YOU do every day. YOU will help us get there.
Thank you and God bless.