Guest opinion: I am more than Alzheimer's
I have Alzheimer’s. It doesn’t define who I am but it does affect how I engage with the world. For me, my diagnosis wasn’t a dramatic moment like you see on TV, but a slow progression. I didn’t really notice anything, but my wife Karen would tell me that I kept repeating myself or I would do things differently.
As I’ve continued to live life and share my diagnosis with family and friends, what I have noticed is that their reactions to me have changed. Many people struggle with what to say and do when a family member, friend, co-worker or neighbor is diagnosed with Alzheimer’s disease or another dementia. The shock of someone revealing a diagnosis can leave many at a loss on how to engage. All of that creates a stigma that, for me and my family, can be damaging.
June is Alzheimer’s & Brain Awareness month, a time that has become especially meaningful for me to raise awareness about this disease and advocate for the 580,000 Floridians living with Alzheimer’s and their 800,000 caregivers. There are things everyone can do to make Florida a better place for those of us living with Alzheimer’s and caregivers. If you know someone living with Alzheimer's, and odds are you will in your lifetime, here is my advice.
I am not delusional or crazy. Yes, I might forget things and get confused sometimes, but I am still a human and deserve to be treated with kindness and respect. Don’t assume things you might have seen or heard. This disease affects each of us differently, so just because you know someone who experienced certain things does not mean I will. A diagnosis doesn’t mean I will have to stop my daily routine or give up activities I enjoy immediately.
It’s ok to let me know if I’m repeating myself. The important thing is to talk to me and address me instead of asking the person next to me. If you want to know how I’m doing, just ask me. I can answer for myself, it just might be different than before. Know that I am doing my best.
Support caregivers. My wife Karen is my biggest supporter and helps me continue to live the best life I can. Please support the caregivers in your life and ask them how they’re doing. Take time to understand what they’re going through and offer support.
My diagnosis isn’t a joke. Please don’t debate my diagnosis or make fun of it. This disease will cause me to say and do things that aren’t me. Know that it is Alzheimer’s doing that, not me.
When I was diagnosed, I became involved with the local Alzheimer’s Association chapter and I encourage you to do the same. For local programs and support groups, visit the Alzheimer’s Association Florida Gulf Coast Chapter website at alz.org/Flgulfcoast or call their 24/7 Helpline at 1.800.272.3900.
Gary Longordo is a resident of Estero, FL where he lives with his wife Karen.