Jun 092017
 

For a while now, I’ve been worried about memory lapses. About big vacant holes where my memories should live.

For example, I completely forgot that one of my best friends growing up also worked for me at the school newspaper at Penn State. I all too often looked at my sister with blank stares when she described her memories of our family life; I just don’t remember the stories.

But I didn’t rush off for testing because I didn’t think anything could be done about my memory. And besides, I’m only in my mid-50s and that is awfully young for Alzheimer’s or dementia, isn’t it?

About a year ago, my sister saw a research study notice for a drug that has shown some success in slowing down the progression of memory loss. I took the online test and “passed” on to a telephone conversation. I “passed” that, too, and soon found myself in a medical research office in suburban New Jersey – giving lots of blood, having an EKG and being poked and prodded by a neurologist.

The key test was the RBANS (Repeatable Battery for Neuropsychological Status), a series of mini-memory and cognitive tasks. I needed to score an 85 or less to get into the trial; the research coordinator told me that, based on our conversation, she really didn’t expect me to “pass.”

She then came back with the news that I scored a 71, much lower than the number needed to qualify for the trial. Soon I was meeting with the director of research and hearing the news that more testing was needed, but that it was very likely that something serious was wrong. A subsequent PET scan confirmed it: I do indeed have younger-onset Alzheimer’s.

Am I terrified? Absolutely. More than a bit numb? Yep. Determined to do what I can for myself and for others? Even more so.

I’m told that my level of memory loss and cognitive impairment is considered mild to moderate. I’m proudly participating in a clinical trial for a drug which has shown promise in slowing the progression of the disease, particularly in folks in the early stages of Alzheimer’s.

In addition to participating in the clinical trial, I’m also joining others in the Alzheimer’s community to chronicle this disease and my fight against it. My first article appeared in today’s edition of The New York Times, and I’m hopeful that the paper will periodically publish more pieces about my experiences and my fight.

Most importantly, I’m reaching out to others with the hope that it will help me overcome the overwhelming wave of fear that sometimes hits me. For example, I was just chosen to serve on the Alzheimer’s Association National Early Stage Advisory Group, a group composed of people in the early stages of Alzheimer’s disease who help raise awareness and advocate for others living with dementia.

I want to learn as much as possible so I can become an effective advocate. Yes, I have a story to tell, but these days – to be as effective as possible – we need to share the facts and find ways to reach as many people as we can.

I’m going to fight, just like I fought for our civil liberties and the environment throughout my career. Just like I’ve fought diabetes and the clinical depression that I’ve lived with for most of my life.

At the end of the day, I hope to be the same guy I’ve been for quite some time. Perhaps I’m a bit more forgetful about some things – remembering names, handling simple math and figuring out directions are increasingly difficult – but I’m already more willing to slow down and appreciate the world around me. And that’s not such a bad thing.

About the Author: After graduating from Penn State University, Phil Gutis started at The New York Times as a copy boy and earned promotion through the clerical ranks until he was selected as a reporter trainee and then full-time reporter. After journalism, Phil transitioned into advocacy and for several decades established and managed multi-million dollar communications programs for large advocacy organizations including the Natural Resources Defense Council and the American Civil Liberties Union. Phil currently manages the Prallsville Mills, an early industrial village along the Delaware River in Stockton, NJ.

 

 

  10 Responses to “Chronicles of My Alzheimer’s: A Former New York Times Reporter Shares His Story”

  1. Thank you for sharing your story, Phil. I read your piece in the Times. It made me smile. I admire your determination to make a difference and to advocate, as well as your desire to appreciate the world around you a bit more. You give me hope.

    • Thank you Kathleen! Until we have a cure, hope is what it is all about. Hope and positive thoughts! Best, Phil

  2. Dear Phil,
    Thank you for sharing your story. My husband was diagnosed with AD at age 55. We continue to look for ways to maintain his good health with diet, exercise and positive interactions with family and friends. We take things a day at a time. He is doing well today. His short term memory is worsening but overall he is in good health. Be well and keep up the good fight.
    God bless you.

    • And best of luck to you, Dawn, and your husband. Keep up the positive interactions. I'm finding that exercise and interaction is definitely help clear my mind. Thanks for the warm thoughts. Phil

  3. Thank you for publishing your blog about Alzheimer's, and congratulations on being included in a very important advisory group. We subscribe to the NY Times so I'll search for the article today. I am an Alzheimer's advocate for more than 2 years now, because my mother passed away from dementia, and I have helped to take care of my mother in law who suffers from the disease. I started working as a volunteer at Assisted Living Facilities for Memory Care last year giving "smell therapy" sessions, and have recently manufactured my Essential Awakenings Smell and Memory Kit for families and facilities. If there is any way that I can help enrich someones life, I want to do that with my expertise as a "nose". I wish you much luck in fighting this disease, and I will look forward to reading your articles in the future. The more that is written about the disease, the more people will realize that we cannot ignore how much it impacts families and loved ones. Best Regards, Ruth Sutcliffe, The Scent Guru

  4. Thank you for your blog. My husband Mike was diagnosed at 62. I have retired and we are filling our bucket lists with doing the things we always wanted to do but were too busy working. I find Mike's biggest personality change is his Apathy. The pre Alzheimer's Mike had lots of projects and plans. I find my roll as his caregiver is to be a camp counselor. I come up with whatever I guess will make him happy. I am learning to fish. Caught my first fish on a fly rod this week. Mike had a blast.
    We live in Maine. I have had lots of help from our state ALZ association. The local group started an exercise class. This was a wonderful way to meet other area families. There is strength in knowing others with familiar stories.
    Mike and I went to D.C. As ALZ advocates last March. In D.C. We heard so many good stories from others with ALZ. We started this journey with the Dr telling Mike he has 5 years to live. In D.C we learned to appreciate every day. Maybe we have changes but ALZ will not dictate the way we live our lives.
    Good luck to you. Mary

    • Thank you Mary. Love the advice and, yes, apathy is never far around the corner. Definitely have to fight that feeling. Maybe I'll meet you in DC next year. In the meantime, best of luck to you and Mike. Keep up the good fight!!

      Phil

  5. Philip, I just read your article in the Times. I am a fellow Penn Stater and one of my very best friends, Rona, another Penn Stater, was diagnosed with Early Onset Alzheimers last year. I have been talking to Rona about finding a support group. She is feeling so lonely in her diagnosis. Are you part of a group? I live in Bucks County, PA and she lives in West Chester, PA. I would so appreciate any information you may have. You are so lucky to have a Tim and so many wonderful animal friends 🙂

  6. Phil, I was diagnosed with Early Onset Alzheimer's last Christmas. To say the holidays were subdued would be an understatement. I cried over the realization that I am slowly losing my sense of self. I can no longer work as a nurse. I have increasing problems with short term memory, and I can no longer drive. Social Security disability does not even begin to cover expenses. I felt lost. Now, I have given myself a sense of purpose. I promised our mother that I would care for my sister who is also disabled. I have made her my payee on Social Security. I have created a Go Fund Me page to try and help pay down the house so she will be secure when I can no longer remain home. But like you, I continue to have moments of intense fear and panic over the future. It is hard to make others understand, but if you have a moment when you need to talk to someone, drop me a line. I check my email frequently and maybe we can support each other. Take care and fight on, Deb

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