 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. Unknown  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.) 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
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 by Skip Cohen My mother, grandmother, and great-grandmother all died of Alzheimer's. Two days ago, my good friend, Kristen Jensen, who also lost her mother to the disease, shared a post about Alzheimer's on Facebook. I'm unsure where the post started, but it was one of those please-share-chain-letter-type posts. While I normally hate stuff like this, it was so spot-on and accurate to what we experienced with my mother. I started this post with the plan to share it yesterday, Throwback Thursday. I decided to combine a few of my favorite throwback images of my Mom with my own version of a public service message, which is below. Well, I posted the piece on my FB page and was surprised at the response from so many people. So, I decided to hold off and wrap up the week with an additional focus on the Alzheimer's aspect, and a mini-tribute to Mom, including a hand-colored portrait from around 1940.   Robin Williams took his own life because he was diagnosed with Lewy Body Dementia. Bruce Willis learned that his illness is Frontotemporal dementia and Lew Body Dementia (FTD). One of the hardest things to process is the slow change in the one you love. Becoming a completely different person. Everything changes. Just so you know...it's called the long goodbye. Rapidly shrinking brain is how doctors described it. As the patient's brain slowly dies, they change physically and eventually forget who their loved ones are and become less themselves. Patients can eventually become bedridden, unable to move and unable to eat or drink or talk to their loved ones.
There will be people who will scroll by this message because Dementia, Alzheimer's or Parkinson's has not touched them. They may not know what it's like to have a loved one who has fought or is fighting a battle. In an effort to raise awareness of this cruel disease, I would like to see at least 5 of my friends put this on their timeline. I'll settle for at least one. If you're one of those people who believe Alzheimer's and Dementia only happen to the "other guys:" According to the Alzheimer's Association, as of 2023, an estimated 6.7 million Americans are living with Alzheimer's disease. This number is expected to increase to 13.8 million by 2060. (source: Google) But if the disease is already touching your life, here are some ideas that helped us through the "storms" a lot.
There's no getting around the pain of dealing with losing a loved one to Alzheimer's, but there is so much help available. Don't forget to talk to your doctor about the newest drugs available. There's some incredible progress made with certain types of Dementia, especially Alzheimer's. Most important of all...remember you're NOT alone!  A.I. Image from Adobe Stock by Skip Cohen With my involvement in the Memory Care Alliance here in Sarasota, I want to start sharing more information about this horrible disease. My mother, grandmother, and great-grandmother all died of Alzheimer's. Being tested for the disease myself a few months ago (which showed no signs) led to me working on a project with one of medicine's leading neurologists. While Alzheimer's has nothing to do with the business and marketing of photography, over the years, it's remarkable how anybody I talk to seems to have been touched by the disease. Unlike the Kevin Bacon three degrees of separation game, most often, it's just one degree of separation to Alzheimer's with most people. Wearing the hat of "Director" for the Memory Care Alliance, I want to share more information on this horrible disease to help increase awareness. I've seen numbers that estimate by 2050, the number of people with Alzheimer's will rise to thirteen million. The main goal of the Alliance is to become a network of companies working to provide the best quality of support for Alzheimer's patients, their families, and caregivers. With my mother, as Alzheimer's took a greater hold, one of the most fun things we could do with her was to pull out old photographs. She wouldn't remember what she had for breakfast, but she could name every sorority sister from Ohio State! With each face she recognized, the backstories would start to flow. It was as if the events happened the day before, not sixty years earlier. Here's my point today - take more pictures! Don't just leave them on a card or your phone forever. Photography is about capturing memories, lots of them. They don't have to be milestone events and show-stoppers - but the more, the better. Put on the hat of the family historian. If you have kids, when you are with family and friends, give them assignments as if they were photojournalists. And with senior members of your family, set up your phone or camera on video and capture the stories of their lives while they're still here. With the weekend approaching, don't wait to start building or organizing your personal imaging archives. Capture memories now—they'll become priceless in the years ahead. To put the seriousness of the disease in even more perspective, check out the one-minute video from the Alzheimer's Association below.  A.I. Image from Adobe Stock  by Skip Cohen
Sometimes, inspiration shows up in the most unlikely places—like the back of a T-shirt! But it was the perfect sentiment at the Walk to End Alzheimer's last month. "There is always light if only we're brave enough to see it ...if only we're brave enough to be it." I wrote about Alzheimer's in a post a few weeks back. Losing my Mother, grandmother, great-grandmother, and a great-uncle to the horrible disease is a cause near and dear to my heart. It's the foundation for my newest "adventure," working with the Memory Care Alliance to help caregivers dealing with Alzheimer's. But today's post isn't just about Alzheimer's; it's about finding a non-profit cause you believe in. Between Mother Nature's wrath and politics, the world has become a very scary, at times terrifying place. I know we're not the only ones who watch the news and want to go to bed and pull the covers over our heads! The one way to beat dealing with those challenges we have no control over is to get involved in something that, by giving back, lifts your spirits and makes a difference. I loved this guy's t-shirt because it says so much in the simplicity of the message - brave enough to see the light and strong enough to help be the light! It's December and holiday time - every non-profit needs help. Plus, you're looking for your community to be good to you - so you need to be good to your community. You're not just another retailer; one way to stand out even more is to be involved. Think about it for just a second - if everybody we know just gave back a little to their favorite non-profit, how much could we all help change the world? |
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