Greg Obrien Reflects On His Mothers Struggle With Alzheimers And The Profound Affect It Had On Him
In the spring on Brookdale Place, in Rye, New York, the Forget-Me-Nots bloomed like a botanical garden, a sea of soothing pastels that kindled the memory. The Greeks called the flower Myosotis, translated mouses ear, an allusion to the shape of its leaf.
Who could ever forget a patch of ensuring forget-me-nots, delicate five-lobed blue, pink, or white flowers with yellow centers? German folklore says the Almighty once overlooked the petite plant in naming all the other flowers. Legend suggests that one of the tiny lobes cried out, Forget-me-not, O Lord. To which the Lord replied, That shall be your name! Today, it is a symbol of the Alzheimers Association.
As one of 10 kids in an Irish Catholic family, I grew up in a modest neighborhood outside Manhattan where memories live forever. Forever is a long time, a place of enduring peace, a steadfast mooring when the swift, high tides of life pull one to treacherous waters where memory implodes the brain: forget me not. No one saw it coming.
I was the last one out one day and observed my mother standing at the kitchen sink staring out the window into Pappy Langelohs cornfield, with Rye Brook in the distance as it meandered out to Long Island Sound. There was a blank expression on her face. She looked up to the heavens as if raptured into deep space, endlessly talking to herself, moving her lips in illusory conversation, without saying a word, as if she was talking to someone standing next to her. But she was alone.
Groups Raising Alzheimer’s Awareness
Us Against Alzheimer’s
The nonprofit organization, which makes brain health a priority, is honoring Mandy Moore at its annual gala, broadcast live on Oct. 21 on its website.
Be Brain Powerful
Learn about womens brain health in this campaign co-sponsored by the Alzheimers Drug Discovery Foundation and the Vradenburg Foundation.
Alzheimer’s Association
‘have You Heard About Greg’ Documentary On O’brien’s Early Onset Alzheimer’s
Have You Heard About Greg?, a documentary chronicling the journey of Cape Cod journalist Greg OBrien and his family as they live with the early onset Alzheimers diagnosis he got at age 59, opens across the nation this week.
Cape Codders can see the film starting Friday and playing through Thursday at Entertainment Cinemas, 2-6 Enterprise Road, South Dennis. For showtimes and tickets, visit:
The film, directed by Steve Ecclesine, also opens Friday in theaters across the country.
After his 2009 diagnosis, OBrien, an award-winning author and investigative journalist, mounted a battle to bring awareness to early onset Alzheimers which he calls this quiet killer and to increase research funding.
Read about the movie in the making: New documentary about Brewster’s Greg O’Brien shines light on Alzheimer’s disease
Have You Heard About Greg? is the latest project in that effort, which included his 2014 book, On Pluto: Inside the Mind of Alzheimers and his 2015-2022 podcast with local NPR station WCAI, The Forgetting: Inside the Mind of Alzheimer’s.
In his own words: Cape Cod Times video conversation with Greg O’Brien
OBrien has partnered with his doctors, Alzheimers Family Support Center in Brewster,Still Alice author Lisa Genova and national experts to tell the story, which he has said from the beginning is about living, not dying, with the disease.
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Being Patient: What Do You Hope People Can Take Away From The Documentary
Steve Ecclesine: Im hoping that people come away with a sense of hope. get people talking, increase the funding . To the individual who takes this message personally, the next time they go in to see their doctor, ask about their brain health.
Greg OBrien: Part of my journey is to expand the understanding of this disease. Alzheimers is the most prevalent , but dementia is the umbrella and people need to be concerned about all forms of dementia.
The interview has been edited for length and clarity.
Contact Nicholas Chan at nicholas@beingpatient.com
Journalist Greg Obrien On Chronicling His Life With Alzheimers Brain & Life
In this episode, Dr. Daniel Correa speaks with journalist and author Greg OBrien about his new documentary Have You Heard About Greg, a film that chronicles his journey with Alzheimers. Greg shares how he feels the condition has affected his life, his familys relationships with one another, and how his career as a journalist has influenced his experience with a chronic condition. Then, Dr. Correa speaks with Dr. James Noble, neurologist and author of Navigating Life with Dementia from Brain & Life® Books. Dr. Noble discusses the differences between memory loss conditions and offers advice to those who may be experiencing symptoms.
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Being Patient: Greg Your Message In Both On Pluto And The Documentary Is About Living With Alzheimers Not Dying With Alzheimers And Your Diagnosis Doesnt Seem Like A Tragedy Tell Us More About This Message
Greg OBrien: I dont want it to be a tragedy or a train wreck because if thats the case, people will feel pity as opposed to listening and learning.
I lost my maternal grandfather, my mother, my father and paternal uncle to Alzheimers and other forms of dementia. I was at the deathbed of both my father and mother. While I was there with my mom her last few minutes, I said, Were going to bring this disease out of the closet. So I started writing down everything. Before my mom died, I was starting to experience the symptoms of short-term memory, not recognizing people, loss of place and loss of self and I was scared shitless. What propelled me was my mother, a hero of my life, who taught me how to live with Alzheimers.
Childhood Friends And Filmmakers Steve Ecclesine And Greg Obrien Discuss Their New Documentary Feature Have You Heard About Greg And Its Inspiration: Obriens Own Life Following His 2009 Alzheimers Diagnosis
A career journalist, newspaper and magazine editor, Greg OBrien learned from his mother what it means to truly live with Alzheimers, and it was her inspiration that prompted him to write and speak openly about his own diagnosis of early-onset Alzheimers at 59. In 2014, OBrien, now 71, published a memoir, On Pluto: Inside the Mind of Alzheimers, and this week, a new documentary feature film about his life celebrates its world premiere at the second annual Filmocracy Fest in Los Angeles and a nationwide release in early 2022.
Written and coproduced by OBrien, Have You Heard About Greg? A Journey Through Alzheimers With Faith, Hope and Humor, is a personal, authentic account of Gregs Alzheimers journey and his drive to break the silence surrounding dementia. Powerfully told, its production is supported in part by drugmakers Eisai, Lilly and Biogen, who, according to the films marketing team, have in some cases expressed interest in sharing the film to help with recruitment for Alzheimers clinical trials.
In advance of the premiere, Being Patient spoke with OBrien, a subject of the documentary, and Steve Ecclesine, a childhood friend of OBrien and the films director and producer, about the inspiration behind the documentary and OBriens diagnosis.
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If I could just tell a story for people to understand the dynamic here, and its in my book: A couple of days later, we were supposed to go to Coronado in San Diego for a family reunion. I got there early with my son Brendan. I named him power of attorney. I said, We got to talk, and were on the balcony of this beautiful hotel in Coronado. I got the 85 pages of notes that basically said I was losing my mind. Brendan said, I dont want to hear about it. Its bullshit, dropped some F bombs, and I read some more.
Finally he grabbed my 85 pages of medical notes, ripped them into shreds, threw them off the balcony and said, This is bullshit Dad because I know its true. He buried his head on my shoulder and we cried. Thats what its like as a family. This journey is not easy. I dont want anyones pity. But I pick and choose my moments when to talk and when not to talk because I dont want people to see me when Im down. But thats how the family came together.
Alzheimers Documentary About Brewsters Greg Obrien Candidly Chronicles Death In Slow
Topics:Health
Greg OBrien in 2015. COURTESY PHOTO
BREWSTER Lifelong journalist Greg OBrien, 72, has dedicated his golden years to writing about living with Alzheimers.
Husband, father of three, and the former editor and publisher of The Cape Codder, OBrien was diagnosed with early-onset Alzheimers 12 years ago, at age 59.He calls the disease a quiet killer that attacks the mind from the inside-out until darkness rules. He witnessed the toll it took on his mother and maternal grandfather.
Alzheimers is now coming for me. It is a death in slow-motion, like having a sliver of your brain shaved off every day, he said in a recent NPR interview.OBrien chronicles his journey and its effects on his family in a 2021 documentary film directed by Steven Ecclesine showing Saturday, Aug. 27 at the Chatham Orpheum Theater.
In 2014, OBrien wrote On Pluto: Inside the Mind of Alzheimers, a book about living and coping with the disease. He described how about 60 percent of his short-term memory was prone to disappearing in 30 seconds.
There are times I dont recognize people Ive known all my life, I get lost in familiar places, and see things that arent there, he said in a 2014 speech to the Cure Alzheimers Fund.
The experience is akin to a voyage into deep space.
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O’brien’s ‘on Pluto’ Inspires A Documentary
How did a comment by a former classmate at a 50th high school reunion turn into a documentary film about Alzheimers disease? Hollywood film producer Steve Ecclesine explained how that question, Have You Heard About Greg OBrien? developed into a documentary film of the same name.
Ecclesine learned in 2018 that his childhood friend and classmate at a Catholic grammar school in Rye, N.Y., had Alzheimers disease, he said in a recent phone interview.
I hadnt thought about Greg, he admitted and said they hadnt been in touch since high school, having gone their separate ways geographically and in careers.
OBrien, a longtime resident of Brewster, is a former editor and publisher of The Cape Codder and The Register, a founding managing director of Community Newspaper Co. and author and contributor to regional and national media.
Ecclesine also hadnt heard of OBriens well documented 10-year journey with Alzheimers as described in his award-winning book, On Pluto, Inside the Mind of Alzheimers, and through many speaking engagements across the United States and in Switzerland and in national television and radio interviews. OBrien was diagnosed with Alzheimers at age 60. He is now 70.
But the reunion question got Ecclesine thinking about the fact his own mother had died of Alzheimers and when he called OBrien, he found out his boyhood friends mother and other close relatives had, too.
Inheritance isnt all its cracked up to be, he quipped.
Being Patient: What Was It Like Telling Your Family About Your Diagnosis
Greg OBrien: Thehardest thing was to tell my kids. They were out of the house at the time because they were older. I summoned them all to our house in Cape Cod under the guise of dinner at a favorite restaurant by the sea. They were all waiting and I was in the and felt like Luka Brodsky in the Godfather preparing my speech. I was just so nervous.
I went out finally and my wife Mary Catherine said, Your dad needs to tell you something. I said, What took your grandmother, I have now and Ive been diagnosed with early-onset Alzheimers.
Brendan, my oldest boy whos a writer, producer in Boston, said, Well Dad, that explains a lot. The whole family was talking about it behind the scenes, wondering whats wrong with Dad, Hes not the outgoing guy that used to be. He cant remember anything. He cant remember people. He drifts out. What is going on with him? My son Conor got to the point and said, So youre losing your mind, Dad. I said, Yeah. Its time for dinner. Lets go.
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Being Patient: How Did An Early Diagnosis Benefit You
Greg OBrien: It gave me a roadmap. As a journalist, I was fortunate enough to be able to connect with some of the top Alzheimers experts in the world, and they helped me. I was talking to them to write the book, but they helped me on my journey by giving me strategies and I wanted to share the strategies with others.
What Propelled Me Was My Mother A Hero Of My Life Who Taught Me How To Live With Alzheimers
Despite the stereotypes of Alzheimers, its a 20- to 25-year course. I was diagnosed early. One of my best friends was my personal physician. He got me in touch with experts who did brain scans and the diagnosis was early-onset Alzheimers. None of it was a surprise. I remember sitting at with my wife when gave a diagnosis. I felt tears coming down my cheeks. I grabbed my wifes hand and I said, What about the kids? Alzheimers is really about the next generation. My train has left. Theres no magic wand for me. I also have prostate cancer thats advancing.
Its about my children, my three grandchildren, and everyone elses children and grandchildren to realize that this is a disease that, over a period of time, you can live with. But get an early diagnosis. People live in the shadows and fear. They dont want to get a diagnosis until theyre 10 years into it.
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Being Patient: Steve Tell Us About How You Reconnected With Greg
Steve Ecclesine: It was an unusual set of circumstances. While I was 50th high school reunion, one of Gregs and my childhood pals came up to me and said, Have you heard about Greg? Those five words changed my life.
I found out that Greg had written a book called On Pluto: Inside the Mind of Alzheimers. I got in contact with him and he said, Im going to be coming out to Scottsdale, Arizona, right after the first of the year to give a speech to 400 caretakers from the aging life care advocates group. And I said, Great, Ill bring cameras. It a blind date after 50 years. I came out with the cameras and met Greg again. We looked at each other strangely. Then, we sat down, started talking and like with anybody who youve had a friendship with, you just pick up where you left off and start talking.
I loved how he handled the crowd of 400 people and I said, Theres something here thats just magical. I thought, Maybe its a short film. Steve James had done a short film with Greg before and Id seen that. Then turning over his Rolodex, handing me some of these top people in the fight against Alzheimers. Theres Lisa Genova, George Vradenburg, Rudy Tanzi, these amazing people who sat down and told me the truth.
So I started shooting, but I didnt know what I had until I really sat down and started looking at the people that he had introduced me to. I said, This is magic. This is information that people need to get their hands on.
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Moore: I have the utmost faith our writers will do the job. Rebecca is a woman whowell, this disease can be living within us for 20 years before detection.
OBrien: Id also tell the writers you dont want it to be a total train wreck. You want to break it up with some Larry Davidtype humor. If the person with dementia can laugh, it gives the green light for people to laugh with her.
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Moore: Thats a great idea. I feel like my research also really underscored the importance of early detection and diagnosis. Its so important to have an increased understanding of our own brain health, the way we think of heart health or any other body part we want to make sure is intact for the long haul.
OBrien: Theres no magic pill. The cure may be brain health. So you stave off the onsetinstead of getting Alzheimers in your 40s and 50s, you get it in your 70s or 80s. Im glad were talking about itThis Is Us has a tremendous opportunity. Its the elephant in the room. And this elephant forgets.
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In ‘the Forgetting’ Podcast Journalist Greg O’brien Describes Living With Alzheimer’s Disease
Greg OBrien calls them drive bys.
Its when friends and acquaintances stop by to shake his hand and tell him how great he looks, despite battling early-onset Alzheimers disease for the past nine years.
Although it tires him out, OBrien wants to keep his brain active. Hed rather friends sit with him in a quiet place to talk about world affairs, rather than comment on his physical appearance.
Your looks are something you are born with. This is a disease that eats you from the inside out, says OBrien, an award-winning journalist on Cape and in Boston for many years.
The Brewster resident, a guest on this weeks Life With Gwenn talk show, says early-onset Alzheimers has not yet stolen his memories, but makes it harder and harder to access them. When he wakes up in the morning, he feels as though someone has dumped the filing cabinet in his brain, the what, where, when, how and why, into a messy pile that OBrien slowly, painfully, sorts out each day.
My brain used to be my best friend, but now theres no chance of reconciliation, he says.
But OBrien is not giving up.
He has a story to tell about how Alzheimers is not just a disease of elderly people. Diagnosed at age 59, with scans done after the second of two traumatic head injuries , OBrien is one of about 200,000 people in the United States who have early-onset Alzheimers disease. That represents about 4.4 percent of the 5.5 million people nationally who live with all types of Alzheimers.