Phil’s Journal: Using AI to Work Around My Alzheimer’s Cognitive Decline

By | December 6th, 2023

Early-onset Alzheimer’s has worn away some of career writer Phil Gutis’s attention span when it comes to online videos, TV shows, academic articles... In AI tools like Google’s Bard, he’s finding a new way to engage with media — and with the world.

I’ve always been a bit of a technology geek. I still have a few memories of sitting at my desk at the ACLU’s Washington office building what we called Constitution Hall on America Online. The details are fuzzy but I know we had a variety of documents, news releases, message boards and a cadre of volunteers who helped keep them somewhat orderly. 

I also remember running from the Supreme Court building, which conveniently was across the street from the ACLU office on Capitol Hill, with the court’s first-ever decision in an internet speech case called Reno vs ACLU. The Court’s Clerk had agreed to provide the decision electronically on a disc, and I was absolutely determined to get it online first! 

These memories popped to the forefront of my brain as I started to play with the latest technological advance: artificial intelligence. Google has introduced a program called Bard, and a few days ago I decided to ask it some questions. I’ve been amazed at the answers.

And then I discovered that Bard could summarize YouTube videos. Gamechanger!

My cognitive challenges include very little patience for watching online videos (or most anything on television.) And if I make it through the video, I find it very difficult to summarize what I’ve seen.

So, I asked Bard to summarize a TEDx talk by my friend and co-Alzheimer’s advocate Rebecca Chopp.  Rebecca has a book coming out in a few weeks called Still Me: Accepting Alzheimer’s Without Losing Yourself. This TEDx talk is the beginning of her publicity tour.

Here’s Bard’s synopsis:

In this TEDx Talk, Rebecca Chopp shares her personal story of living with Alzheimer’s disease. She was diagnosed with Alzheimer’s five years ago, and at first, she was devastated. But she quickly realized that she didn’t have to give up on her life. She decided to take control of her disease and live her life to the fullest.

Chopp shares seven gifts that she has found in living with Alzheimer’s. The first gift is to get a diagnosis and accept it. This can be difficult, but it is important to face reality so that you can start to make plans for the future. The second gift is to fix your attitude. Chopp believes that it is important to stay positive and hopeful, even in the face of adversity. The third gift is to live in the light. This means spending time in nature, connecting with loved ones, and doing things that bring you joy.

The fourth gift is to build your body to prolong your brain. Chopp follows a healthy diet, gets plenty of sleep, and exercises regularly. She believes that these lifestyle changes can help to slow the progression of Alzheimer’s. The fifth gift is to create. Chopp paints, gardens, and writes. She believes that creativity is a powerful tool that can help to keep the brain active. The sixth gift is to abide in awe. Chopp finds awe in nature, art, and music. She believes that awe can help to lift the spirit and make life more meaningful.

The seventh gift is to not let anyone steal your joy. Chopp believes that it is important to find joy in every day, even when things are tough. She encourages others to live their lives to the fullest and never give up on their dreams.

Chopp’s story is an inspiration to others who are living with Alzheimer’s disease. She shows that it is possible to live a full and meaningful life, even with this diagnosis. Her seven gifts are a valuable resource for anyone who is facing Alzheimer’s.

I truly don’t think I could have done a better job. So I decided to go a bit further. I’ve had a few printouts of articles that appeared in various journals on my desk for way too long. My hope was to write about them at some point but I’ve struggled with reading them and fully comprehending their contents and meaning.

So I wondered if Bard could give me a hand in understanding the pieces. The first one I pulled from my pile was an article by Joshue Grill and Jason Karlawish titled “Disclosing Alzheimer’s Disease Biomarker Results to Research Participants.”

Here’s the query I typed into the Bard prompt bar: summarize viewpoint aritcle in JAMA Neurology on June 6, 2022 by Grill and Karlawish. (Typo included.)

Bard thought about it for about 30 seconds and came back with this summary:

The Viewpoint article “Returning Biomarker Results to Research Participants: Ethical and Practical Considerations” by Grill and Karlawish was published in the June 6, 2022 issue of JAMA Neurology. The article discusses the ethical and practical considerations surrounding the release of biomarker measures to research participants.

The authors argue that there is a growing consensus that research participants should have access to their biomarker results, but that there are a number of challenges to doing so. These challenges include the difficulty of interpreting biomarker results, the potential for participants to misinterpret their results, and the need to protect participants from psychological harm.

The authors propose a number of recommendations for researchers who are considering releasing biomarker results to participants. These recommendations include the following:

  • Develop a clear and concise explanation of the biomarker results.
  • Provide participants with the opportunity to discuss their results with a healthcare provider.
  • Develop a plan for addressing participants’ concerns about their results.

The authors also discuss the need for further research on the ethical and practical aspects of returning biomarker results to research participants.

Why am I so intrigued by this new technology? Well, I’m still a bit of a geek and enjoy playing with new tech as much as I can. And most importantly, I very much think it is crucial for slowing my cognitive decline to continue writing and engaging with the world. But as I mentioned, I’m finding it increasingly challenging to read and comprehend some of the material I want to write about.

Is it possible that Bard and other forms of AI will help me continue to stretch my abilities? I’m beginning to think that they just might and that’s another huge reason for hope that those living with cognitive decline can continue to meaningfully engage with the world.

And that would be, as I said before, a true gamechanger.

Watch Rebecca Chopp’s TEDx talk here:

Phil Gutis is a former New York Times reporter and current Being Patient contributor who was diagnosed with early onset Alzheimer’s. This article is part of his Phil’s Journal series, chronicling his experience living with Alzheimer’s and his participation in the aducanumab clinical trial.

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4 thoughts on “Phil’s Journal: Using AI to Work Around My Alzheimer’s Cognitive Decline

  1. I am in awe of the research and strides we are making in reaching a new game plan for the treatment of Alzheimer’s Disease.

    1. It’s truly inspiring to see the advancements being made in Alzheimer’s research. Thank you for being part of our community, Connie!

  2. Thanks Phil Gutis. Good read. I’m similarly interested 5yrs into Parkinson but disease diagnosis, concerned over early cognitive decline. Although I’m very cautious about trusting AI with publc safety and defense issues, I can see how there are useful aspects to promote quality of life with Bart for example. Cheers

    1. Great to see you found Phil’s article insightful and that it resonates with you, Bruce. It’s wise to be cautious about the potential implications of AI, but we’re ready to be open-minded. Thanks for reading!

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