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article imageAlzheimer’s from the patient’s perspective

By Tim Sandle     Jul 20, 2016 in Health
There’s a lot written about Alzheimer’s disease and the attempts to find treatments. Little is written, however, from the patient’s perspective. One man, with Alzheimer’s, is seeking to change this and offer a unique insight into the condition.
The man is Greg O’Brien and he has been traveling across the U.S., over the past 18 months, giving talks and interviews about Alzheimer’s and his personal battle with the disease. Sometimes this is solo and other times with Dr. Rudy Tanzi, an expert on the condition.
Alzheimer’s disease is a chronic neurodegenerative disease. It begins slowly and gets worse over time. The disease is a type of dementia that causes problems with memory, thinking and behaviour. Alzheimer's is the sixth leading cause of death in the U.S.; most often it occurs with people aged over 65, although there are also many cases of early onset Alzheimer’s disease, which can begin in the 40s or 50s. Greg O’Brien has the early onset form of the disease.
One reason why Greg O’Brien has embarked on his ‘never-ending’ tour is raise a number of key issues about the disease (as well as providing a perspective on the condition.) With the medications being developed by pharmaceutical companies, for example, O’Brien points out that it is no longer sufficient for a new drug simply to be shown as efficacious and safe; the impact upon the patient in terms of their health-related quality of life must also be understood (as an side there is an interesting journal article on this subject, from the cancer patient’s perspective titled “Patient-Reported Outcomes Are Changing the Landscape.”)
With the patient perspective, Greg O’Brien is attempting to get the patient perspective into drug development. He not only offers the perspective from his own battle with the condition, but also his experiences of losing his mother to the disease. Getting the message across has been aided by Greg’s skills as a journalist and his career as an investigative reporter.
His journalist training has equipped him with some important life-skills. As he told Maria Shriver on television: “Journalism always taught me to persevere, to just keep persevering and asking the questions. And in addition to my faith, that perseverance sustains me now.”
Some of Greg’s insights into the condition came across recently in a PBS/NOVA special, broadcast in April 2016. In a message to Digital Journal, O’Brien said: “I want to help teach the world how to live and speak through the heart as the brain diminishes.” This is the central message of a new documentary movie that Greg has made, which is titled “Living with Alzheimer’s: A Place Called Pluto.” This is similar to the title of his book, which is called “On Pluto: Inside the mind of Alzheimer’s.” The book took O’Brien two years to write, with the help of his wife.
On Twitter, Mike Marino (@silvertoungeSD) messaged: "If you have ever experienced #Alzheimer in your life or that of a loved one, this book by Greg O'Brien is a MUST!"
The book shows how important fragments and notes are to someone with Alzheimer’s. Interviewed by WYNC, O’Brien describes the importance of notes from his children: “You know it's so cool, when you think you've lost your memory and you know you have, but you have all these notes in front of you, and you have your kids. I couldn't think of a better Father's Day present.”
In the book Greg frankly explains what it is like to slowly lose your mind, and to see slices of your very identity slipping away piece by piece. He is also battling another disease, as he told NBC News: “I have prostate cancer too,” he says. “I’m not treating it because I’m not going to go to a nursing home. That’s my exit strategy.”
As well as via conventional media, O'Brien utilizes social media (@OnPlutoOB) and he has a large following. Here O'Brien is regularly quoted, such as from Julie Hall (@Juliehall67) who tweeted: "A death in slow motion, Alzheimer’s is like having a sliver of your brain shaved away every day" (a quote of O'Brien's.) O'Brien has also inspired others, for instance Silver Sherpa (@SilverSherpa) tweeted: "Greg O'Brien is a hero. I'm documenting my own Alzheimer's disease while I still can."
Greg O’Brien’s decision to take his case on the road provides a unique, patient-centric view of a disease afflicting thousands of people and it sends a wake-up call to health services and drugs companies about putting the patient first.
More about Alzheimer's, Alzheimer's disease, greg o'brien, Illness
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