Good morning and thank for the privilege and opportunity to use my voice to speak on behalf of all those living with Alzheimer’s disease. I have been using my mind and voice to fight for awareness and a cure since my diagnosis in March of 2016 at the age of 51.
A regret I have, I wish I had been fighting longer knowing and understanding how this disease has impacted the multiple generations of my family. But I was one of those people that was unaware, dare I say ignorant to Alzheimer’s disease.
I was misdiagnosed for almost a year and a half with many visits to various hospitals and numerous visits to specials for a plethora of testing. This is one of the issues of trying to diagnose younger onset Alzheimer’s.
The medical community is reluctant many time to go down an Alzheimer’s path. This needs to change and the medical community needs to be better educated and trained to identify, treat and support an Alzheimer’s or related dementia diagnosis.
When I was finally diagnosed my wife Kim and I were naturally crushed. We knew ahead what the prognosis was. But we also had a sense of relief because we finally knew. We began to learn more and more about Alzheimer’s, Kim from the standpoint of a caregiver and me as a person living with the disease.
Within days of my diagnosis we reached out to the Alzheimer’s Association Delaware Valley chapter and asked how we could get involved to help. I became a member of the Alzheimer’s Association ESAG, began fundraising, creating awareness and advocating on a state and national level and now I’m serving as an Early Stage Ambassador with the Delaware Valley & Greater NJ chapters.
Alzheimer’s has been in my family for generations. I recall as a young boy my granddad’s confusion as he struggled with simple tasks. My mother and father live with my wife and I and we witness daily my father’s struggle with Alzheimer’s. In many cases this is the brutality of the disease and this is why we’re so passionate about doing all we can to help. — We’re fighting to end Alzheimer’s for generations.
There are many reasons we’re all here today. We’re here to honor the memories of loved ones we’ve lost, to honor loved ones living with Alzheimer’s and other dementias. There are those amazing family and professional caregivers, thank you. It’s through your love, compassion and sacrifice that we feel loved and secure as we navigate the waters of uncertainty.
Our common thread is HOPE, an expectation for something to happen. Being here today is “helping hope”, encouraging hope and helping something to happen in research for a cure and in our communities. Helping hope can extend all year. Reaching out to your state and federal representatives is very important. Use your voice to encourage them to support the funding of NIH. You can reach out to your local township and municipal representatives, your rotary clubs and chamber of commerce to create social change for the way we care for and treat those of us living with Alzheimer’s and other dementias.
Helping hope extends to a very important part of research, clinical trials. I am fortunate to be able to participate in the Biogen Aducanumab clinical trial at Advanced Memory Research Institute of NJ in Toms River. If we don’t volunteer for clinical trials we will never find a cure. Did you know that most clinical trials fail because of lack of enrollment.
I understand that participating in a trial is not for everyone and it very well may not be an option due to the candidate’s existing medical condition or age. But we have to try.
I’m participating in my trial for two reasons. I have a chance to be part of the potential cure for Alzheimer’s, to save lives, maybe my kids lives and their kids lives, maybe your kids lives. This resonates so strongly with me. The other reason; I’ve heard said “the first survivor of Alzheimer’s will be one that participates in a clinical drug trial.” I’m 53, I have a vision of myself walking my daughters down the wedding aisle and playing with my grandkids. That would be pretty cool…
I want to thank you sincerely that you are here today, it’s so encouraging. Walking here today with a singular voice helps us in the fight to end Alzheimer’s. I’d ask you to consider the rest of the year. Please friend the Delaware Valley and Greater NJ chapters on facebook and Twitter so you can continue to participate in other events and activities throughout the year until we meet again here next year. Thank you.
- Alzheimer’s Association Delaware Valley Chapter facebook page.
- Alzheimer’s Association Delaware Valley Chapter twitter page.
- Alzheimer’s Association Greater New Jersey Chapter facebook page.
- Alzheimer’s Association Greater New Jersey Chapter twitter page.