2018 Bradley Beach Walk to End Alzheimer’s Promise Garden Ceremony
Thank you to the Greater NJ Chapter for inviting me to speak today. It’s truly is an honor.
A little about me. I’m a husband, father, retired software architect, son, brother, servant leader, friend, neighbor, recreational vegetable gardener, amateur photographer and many more things who happen to be living with younger-onset Alzheimer’s disease. I am more than my diagnosis.
I was diagnosed in 2016 at the age of 51. Within days of my diagnosis, I reached out to the Alzheimer’s Association and began to create awareness and advocate for those of us living with Alzheimer’s and our caregivers.
The association has provided me and my family with the skills and tools to navigate our journey and has given me many opportunities to use my voice for advocacy and awareness. I am very grateful to the Alzheimer’s Association for helping me continue to live a purposeful life of servant leadership. The association would not have been able to do this me without your support.
It’s been a rough few years. It took almost a year and a half to get an accurate diagnosis prior to 2016. They tested me for a variety of neurological diseases. This, unfortunately, is all too common and MUST change! My cognitive ability has declined, multitasking is a challenge, memory recall issues are persistent along with other symptoms that are known to neurodegenerative diseases.
A month before I was diagnosed my mom and dad moved in with us so we could care for my dad who is also living with Alzheimer’s. I help my mom care for my dad daily. It’s surreal as you might image, a son living with Alzheimer’s caring for his father living Alzheimer’s.
As a person living with this disease, I want to say to the families and caregivers that I acknowledge your loss, your grief, and the struggles you’ve endured. Your endurance is pure sacrificial love.
To my friends living with Alzheimer’s and other forms of dementia, I’m here today for you. It’s my honor to add my voice to yours for awareness and advocacy.
Over the last few years, we have been witness to what I can only describe as a purple wave of awareness and advocacy that is changing the tide of legislation and funding for Alzheimer’s research. If you follow the news and social media you will see the direct impact you are having.
However, we must NEVER rest on what we accomplished or what we’ll do today in the fight to ENDALZ. The Alzheimer’s tsunami is real. Everyone with a brain is at risk. We must continue to work relentlessly every day with great passion to eradicate this relentless disease.
One extremely important way we’ll get to the end of Alzheimer’s is through clinical trials. I am a participant in the Biogen Aducanumab clinical trial right here in Toms River, NJ at Advanced Memory Research Institute. Aducanumab is in its 3rd phase. We are very hopeful.
We will never find a cure for Alzheimer’s without clinical trials. Those of us that are here today living with Alzheimer’s and are willing and able, you could help. I would be very happy to speak with you about the trial process. I’ll be at my trial center this Monday for my 29th infusion.
I’ve heard it said that anyone of the persons participating in a clinical trial today could very well be the first survivors of Alzheimer’s. Folks, coconut oil is not a cure for Alzheimer’s. With that said, however, a healthy heart diet and exercise lifestyle is a healthy brain lifestyle and that is extremely important.
I’ve been participating in the Walk to end Alzheimer’s for three years, and many more of you I’m sure for many, many, years. We look forward to the walk season, building our teams, spending time with family and friends for a cause we all believe in. Standing with our loved ones living with the disease and in memory of loved ones we’ve lost. Many of you have traded, orange and yellow for purple flowers.
We do this with the hopeful anticipation by our combined efforts that someday we will have someone who was previously diagnosed with Alzheimer’s be the first survivor and raise that white flower.
Until then, let us continue to labor with love to raise awareness, advocate and fight the good fight to #ENDALZ.
Thank you.
Center Watch