Alzheimer's Throwback and a Light at the End of the Tunnel

A.I. Image from Adobe Stock

One of the hardest things you'll ever have to do is grieve the loss of someone who's still alive.
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by Skip Cohen

​It's Throwback Thursday, my favorite day of the week. But today's post is more than just a look back; it is a look at a new level of hope for the future.

The picture on the right is my "throwback" for today. It's a four-generation shot of me as a baby with my mother, grandmother, and great-grandmother. It's also where my journey started with Alzheimer's - all three women, plus a great-uncle, all died of the disease!

We moved to Sarasota in 2011 to help my dad with my mother's Alzheimer's. The Senior Friendship Centers had an outstanding Caregiver Support Group, which Dad and I attended together every Thursday. Those meetings led me to get more involved with the Friendship Centers and eventually serve for many years on their Board.

The fight to end Alzheimer's, including better support for caregivers, is near and dear to my heart. That quest took me on a new journey starting last fall, working with the Memory Care Alliance, a group of incredible companies focused on supporting patients and families dealing with the horrible disease.

Last Saturday, March 29, I was involved in one of the most heart-warming events of my adult life. It was a vision of Dr. Mauricio Concha at the IMG Memory Clinic who asked me, "What if we got all the patients on the new infusions together to talk about their experiences to date?" He's one of the leading neurologists in medicine, and he is totally committed to helping find a cure for Alzheimer's. When we first spoke, he was approaching fifty patients on the new treatments.

We went to work on creating the first get-together of the Memory Care Pioneers, patients diagnosed early with Alzheimer's who are undergoing new treatments for the disease with success. The drug, which is an infusion, doesn't cure Alzheimer's, but it does create a giant "speed bump" and slow the progression of the disease down dramatically. If Alzheimer's is caught early enough, it essentially turns the clock back six months.

(Please remember, I'm not a doctor, and my explanation is a summary of what I've seen, read, and heard so far. If you're dealing with Alzheimer's in your family, talk to your doctor - there are new drugs being developed every day.)

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A Celebration of Hope

Click to enlarge and view in the SCU Lightbox

Life isn’t about waiting for the storm to pass…It’s about learning to dance in the rain.
Vivian Greene

I had no idea the impact working with the team on this event would have on me.

First, Alzheimer's isn't exclusive, and today, there are an estimated seven million people in the US fighting the disease, with that number doubling by 2060! Second, everybody attending the get-together has been touched by the disease. Our favorite meteorologist from Channel 7, Bob Harrigan, joined us to talk about losing his mother to Alzheimer's last year; Dr. Concha lost his father, and his mother-in-law is fighting Alzheimer's now; even my good friend and our photographer for the event, Kristen Jensen, lost her mother last year - again to the disease.

As several patients or their caregivers spoke about their progress in the fight, it became more and more obvious that there's a little light at the end of the tunnel...and it's creating HOPE. One patient wrote the following in her speech for the event:

This treatment isn't just medicine, it's time. Time to make more memories, to cherish moments with loved ones, and to continue living a life filled with purpose and joy.

I know the journey isn't over. There will still be challenges, and I'll take each day as it comes. But I now face every day with hope in my heart, hoping that my story, and the stories of countless others will continue for much longer than we once believed possible.

To those who may be walking a similar path, I want you to know this; you are not alone. There is hope, and there is a community ready to support you every step of the way. I am deeply grateful, grateful to science, to medicine, and to the unwavering love of those around me. And today, I celebrate not just for myself, but for everyone whose lives this breakthrough will change.

"Hope" is a word that's never been in the Alzheimer's vocabulary before. The positive energy in the room last Saturday was remarkable—not just because of the hope coming out of the new treatments but also because of the reminder that none of us are alone. The expression, "It takes a village," couldn't be more appropriate.

So, from a throwback of my family's fight with Alzheimer's to 120 people getting together to talk about their battle and the progress, this was truly a day to celebrate!

Photographs by Kristen Jensen