Tell Me More
Running all over the world, our race against early onset Alzheimer’s is a memoir, our life as nomads.
It is a travel log, as we visited over 80 countries in all 7 continents.
It is an off beat love story, as the two of us were joined at the hip, 24 by 7 for over 5 years.
It is a health and fitness diary, with Catherine’s Early onset Alzheimer’s and her pursuit to run a marathon in all 50 states, 83 total. My open heart surgery. and me getting over 65 marathons done by age 65.
It’s a world wide history lesson along with an educational masterpiece sprinkled with fun facts.
Last but not least it is an inspirational book, filled with quotes I have run across, (pun intended) during our travels.
Our paths have crossed so many people during our travels and I could not help but write about our unbelievable adventures along the way. Some are mentioned by name and some will recognize themselves but all are our new best friends.
A portion of the proceeds on the sale of this book will be donated to organizations providing support to Alzheimer’s patients and their caregivers.
The publishing process with Newman Springs is going well and I can’t wait to continue to inspire till I expire. Please sign up if you have not already done so to get updates.
Here is a sneak peak of chapter 3.
Chapter Three: Why We Run
“Travel is more than the seeing of sights; it is a change that goes on, deep and permanent, in the ideas of living.” —Marty Ritter Beard
Our favorite commercial is a straightforward ad for ALZ.org where they talk about their belief that the first person who will be cured of this dreaded disease is alive today. We both feel Catherine is that person. For that to be the case, though, we have to preserve what she can do as long as possible. I’m pretty sure that the initial cure will be for a specific subset of sufferers, and we want to make sure she is part of that subset.
It was in 2013 that I began to notice that something was wrong with Catherine. Back then, I would talk for hours about work, running, or our travel plans, and I started to notice that, from time to time, Catherine would ask me a question that seemed a bit odd. I just chalked it up to my big mouth. There I was running off at the mouth, and all she was hearing was “blah, blah, blah.” But that was the first clue.
I had taken a job that required me to travel more than usual, so when we were together, I felt compelled to bring her up to date on everything that had happened while we were apart. She would listen, but more and more, she would ask questions to which I was sure she knew the answers.
Just before my heart valve surgery, Catherine got a new boss who was a very shake-things-up type of guy. Her routine was her cornerstone, so stress at work went way up. Over time, we became increasingly convinced that she might lose her job—her boss had put her on probation and entered her into an employee improvement program. That is when we started going to doctors to try to figure out what was going on.
While I was in the hospital for my surgery, I noticed something serious: Catherine was staying at a nearby hotel, and sometimes she would forget to call me when she arrived at the hotel or would take several hours to get back to the hospital. She could recall things in the distant past way better than I could, but what happened earlier that day was unavailable for instant recall.
After my surgery, it slowly became a reality that Catherine was going to lose her job one way or another. Luckily, we had quite a bit of documentation concerning her condition. Since she was 53 at the time, the diagnosis was “Younger-Onset Alzheimer’s or like condition.” Doctors use that term since the diagnosis can only be confirmed by an autopsy.
There might be folks around you who have this condition but you might never know it, especially in the early stages. We hope that our story will find its way to someone who would find this information useful, since we firmly believe that the sooner, the better is the best policy. As in Catherine’s case, documentation can protect one from losing their job. Like many other disabilities, there are benefits available, but first you have to prove that such a disability exists.
There are treatments and drugs that can reduce the symptoms of dementia, but there is presently no cure. That being said, through our experience we’ve found a number of habits that have made a difference for Catherine.
Social Engagement: As time goes on, people with Alzheimer’s tend to withdraw socially, but we have found that social interaction helps to make stronger connections, and, in turn, stronger memories. Catherine loves telling others about our adventures, and I fill in the details when asked questions to which she may not know the answer. Large groups can be problematic, though since multiple conversations can come in as merely white noise.
Dedicated Support: As a partner, you have to be all in and realize that you probably will be together 24/7. Leaving the affected person home alone only accelerates the progression of the disease, and in such cases, you won’t be there to see the signs until it is too late.
Additionally, the affected person may need assistance financially, with work, and with medication: I have seen that there is a difference when Catherine misses a dose or two of her medication, and this is when I’ve needed to take an active role. Furthermore, it is good to have someone to encourage social involvement when the affected person wants to withdraw.
I have gone online several times looking for support groups and I know they can be helpful, but frankly, we’ve been too busy enjoying life to take advantage of them!
Having New Experiences: We feel that exciting new experiences go into the long-term memory unaffected by the condition, at first. When an individual sees the same thing every day, these experiences go into the short-term memory part of the brain and disappear. Their partner comes home and asks, “What did you do today?” and the answer is, “I can’t remember.” The frustration begins for both.
Don’t get me wrong. I’m not suggesting that everyone should aim to run marathons on all seven continents. It can merely be a 5K in a nearby city or a visit to a monument or museum. The premise is that exercise, coupled with a memorable experience, is the key.
Exercise and Sleep: We try our best to get some form of exercise every day, as it stimulates the brain, and the sense of accomplishment goes a long way when other things in life might not be going as planned.
Sleep is also important. With Younger-Onset Alzheimer’s, deposits of beta-amyloid protein fragments (plaques) and tau protein strands (tangles) form in the brain, causing nerve cell damage. While Catherine sleeps, however, some of these plaques and tangles are removed, so I try my best to make sure she can get 8-9 hours of sleep a night.
Given Catherine’s condition, why are we running all over the world? We’ve decided to see as much of the world for as long as we can, and to stay fit at the same time. We both found running as a refuge from our pain that also gave us concrete goals we could aspire to.
Catherine began long-distance running right after she lost her husband to cancer at a very young age. She was only 30 and her big brother, Tommy, saw her spiraling down the drain of despair, so he suggested that she train to run a marathon. Catherine ran track in high school, so this was a great idea for her to keep her mind off her recent loss.
They started with 5K’s and 10K’s, building their way to half marathons and eventually the Chicago Marathon in 1997 and 1998. If you’re only going to run one marathon in your life, the Chicago Marathon is the one. It’s flat as a pancake and millions come out to cheer you along. If you try to quit, they will literally push you back on the course.
So far Catherine has completed 80 marathons, one ultramarathon, one Iron Man, and numerous triathlons and shorter races of various distances. When we set out to run all over the world, we set the goal for her to complete marathons in all 50 states plus DC, and she’s on track to achieve that goal this year if all goes well.
As for me, I was on the cross-country team in high school. I was always in the last heat and remember hating the sport and the pain in my legs after practice. I started running as an adult when I was going through a separation. I needed something to grasp hold of to keep my mind on track so I wouldn’t obsess over the current situation. It forced me to keep a disciplined lifestyle.
I started back with a nine-mile race, the Gil Clark Memorial in Louisville in the spring of 2000. I don’t think I had ever run a mile as an adult with out stopping. I didn’t train at all, but I finished the race in 1:36:30, an average pace of 10:37 a mile. Another thing I like about running is that you can set goals for every day and for your lifetime.
As a mid-pack runner, I compete against myself and I always win. Each day that I head out the door, either for training run or a race, I set a goal and have always been able to achieve that goal. When I turned 50 I set out to run a 50-mile race. Even though I was one of the last finishers, mentally I won, since I was able to achieve that goal.
Together, Catherine and I have done at least a half marathon in 31 different countries and so far have visited 81 countries, some multiple times. Training with all of our traveling can be a challenge, but I’m at my best when I’m solving problems one day at a time. We train when we can, and rest when it’s a travel day.
As I tell Catherine all the time, if she shows up at the start, she will finish. I just need to get her to the starting line confident that she has put in the work necessary to finish in the 6-8 hours allotted.
I see running all over the world as a way for Catherine to have some part of her independence back. Running is something she can do without my help. It gives her the sense of satisfaction she needs. Endorphins will be in overdrive. Last but not least, it gives her a way to get the intensive level of exercise that research says can positively affect her brain. (More on that later.)
As I prepared to run my first post-surgery marathon, I remembered the first mile of that first nine-miler. I was amazed that I ran the whole thing without walking, but quickly realized that if I was going to finish, I would have to walk some. I had two goals that day: to finish and not to die after crossing the finish line.
I didn’t die, but the soreness in my legs I remembered from high school was there in full bloom. So why go through that pain again 25 years later? Simply put, because I can. I set the goal to achieve, and I achieved that goal. Nobody can take that away from me.
Catherine and I run because it has taken us places we have never been before, both mentally and physically. A few years back I ran the Missoula Montana Marathon. I needed the state in my quest to complete races in all 50 states, but the experience of the city will stay with me for a lifetime.