The daily struggle when your brain turns against you
Journalist Greg O’Brien was diagnosed with early-onset Alzheimer’s disease in 2009 at the age of 59. Unfortunately, he knew exactly what the diagnosis meant. He had already watched the disease take over the brains of his grandfather and his mother.
But rather than lie down and succumb to it, O’Brien has used his skill as a researcher and a journalist to learn and record everything he knows about living with Alzheimer’s.
His book, On Pluto: Inside the Mind of Alzheimer’s, chronicles his battle and reveals how faith and a sense of humor help him through. It also takes an honest and unflinching look at a relentless disease.
“If I was on this journey without my faith, I would have given up a long time ago,” O’Brien, who is now 66, said in an interview at his home office in Brewster. “I find that if I’m not pushing forward, I’m sliding backwards. It’s a twenty-four/seven fight all the time so I’m exhausted.”
O’Brien’s quest to find a treatment for Alzheimer’s is featured on the PBS “NOVA” program which airs at 9 p.m. tonight on WGBH. The show, “Can Alzheimer’s Be Stopped,” shows how the disease is one of the biggest medical challenges of our time.
To slow the progression of the disease, O’Brien takes several different medications. He has good days and bad days and even parts of the same day that are good and bad. At this point about 60 percent of his short-term memory is gone after 30 seconds, so he writes everything down on his laptop or iPhone.
He gets lost in familiar places and doesn’t recognize people he has known all his life. He has moments of intense rage, which is a symptom of Alzheimer’s, and there are times he sees things that aren’t there.
Then there are the physical symptoms like a loss of feeling in parts of his hands and feet, loss of his sense of smell and taste, and losing his balance and tripping frequently. He was also diagnosed with acute spinal stenosis, scoliosis and acute degeneration of his spine, but he can’t have an operation to repair the spinal stenosis because the anesthesia is very problematic for those with Alzheimer’s. It can cause them to lose ground quickly, which is a risk O’Brien isn’t willing to take after fighting so hard to keep the disease at bay.
One of the things that O’Brien has done to slow the progression of the disease is to exercise. He used to run every evening, but now his spine problems prevent that, so he goes to the gym instead.
Three different studies presented at the Alzheimer’s Association International Conference [pdf] last summer indicated that physical exercise not only reduces the risk of Alzheimer’s, but also can be an effective form of treatment.
A new study published in the Journal of Alzheimer’s Disease last month indicated that any kind of exercise can improve brain volume and cut the risk of the disease by 50 percent. That won’t help people like O’Brien, whose Alzheimer’s has a strong genetic component, but it is good news for a lot of people willing to change their lifestyle to preserve their brain function.
Intelligence and education are important factors that keep dementia at bay, according to Hyannis neurologist James McCarthy, MD.
“If you formed a lot of connections when you were young, with a high level of education, then you have a lot more leverage,” he said. “It’s like having an eight-cylinder car versus a four-cylinder car. Four cylinder cars are fine, until you reach a big hill.”
O’Brien’s doctors have explained this phenomenon to him using a car analogy as well. There is a reason he is able to still write and work and it has to do with having a better functioning brain to begin with.
“The doctors say that I’m working off a cognitive reserve, which is a fuel tank of intellect that is a result of my parents, my family tree and the grace of God,” O’Brien said. “They tell me to slow down and preserve the tank, because when the tank runs dry I’m on my way out.”
O’Brien highly recommends that anyone who suspects problems with their memory get a clinical diagnosis from someone who specializes in Alzheimer’s. Early diagnosis is essential and denial prevents you from getting the medical and physical intervention that can slow the progression of the disease.
A battery of neuropsychological tests is used to diagnose Alzheimer’s, said Dr. McCarthy, but he has a simple test he performs that is a very good indicator. It involves two simple questions. The first question: How old are you?
“If they answer I was born in 1935, that’s a hint that they probably have Alzheimer’s because their birthdate never changes, but their age changes.
Second question: What’s the date today? The nearly universal answer for Alzheimer’s patients is “I haven’t seen today’s paper,” said to Dr. McCarthy.
The number of people with Alzheimer’s disease is expected to rise dramatically in the future. According to the Alzheimer’s Association, an estimated 5.4 million Americans are living with Alzheimer’s in 2016. By 2050, the number of people in the U.S. living with Alzheimer’s or other dementias is expected to be 13.8 million.
In addition to the tragic emotional costs to families, there are financial costs as well, according to the latest report by Alzheimer’s Association. They estimate the current annual cost of dementia in the U.S. is $236 million and it’s expected to hit a $1 trillion by 2050, if a cure isn’t found.
Neither O’Brien nor Dr. McCarthy expect to see a cure for Alzheimer’s any time soon. O’Brien said that while great progress has been made in slowing the progression of the disease, he questions whether a cure will ever be possible.
“The challenge with Alzheimer’s is that the progression is in the brain,” he said. “Unlike cancer, in Alzheimer’s you can’t remove a brain. In the early stages, there are ways you are able to slow the progression. But, to me, that’s like a death of a thousand cuts for people with early-onset. It is a death in slow motion. So you’ve slowed down the death but what does that do? Does it prolong the pain? I’m not sure I want to sign up for that.”