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10 Ways Living with Alzheimer’s Disease Is Like Training for a Marathon

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I have been running for most of my adult life.  For all the physical benefits that come with pounding the pavement several hours a week, I find that the ability to push beyond my perceived limits is the most valuable element inherent in distance running.  In order to go the distance, my mental determination and focus need to be at least as durable as my physical strength.  In some cases, more so.

When I talk to my friends living with Alzheimer’s disease, I find myself repeating idioms and axioms prolific in the running world.  I repeat words of encouragement, about digging deep, about never giving up.  I remind myself of a coach, hoping to instill enough motivation to see the person through another challenge, up a big hill, or over another hurdle.  I remind them that this disease will require sustained effort to manage, and will deplete their reserves unless they are routinely replenished.  

Some of my favorite running quotes that I sometimes share with my Alzheimer’s friends:

 “Ask yourself:  ‘Can I give more?’.  The answer is usually: ‘Yes’.”  – Paul Tergat, a professional marathoner from Kenya

“I had as many doubts as anyone else.  Standing on the starting line, we’re all cowards.”    -Alberto Salazar, three-time winner of the NYC marathon

“Mental will is a muscle that needs exercise, just like the muscles of the body.” 
-Lynn Jennings

One caveat worth mentioning: For the 10 similarities listed below, there are thousands of ways that distance running and the Alzheimer’s journey differ- the most glaringly obvious being that marathon training is a choice.  

No one ever chooses Alzheimer’s.

Here are 10 ways that the Alzheimer’s battle resembles marathon training:

1. It Is An Overwhelming Idea

To most regular folk, the idea of running a full 26.2 mile marathon seems impossible. The same is true for living with Alzheimer’s disease, either as the person with the disease or as the caregiver. Looking at the Alzheimer’s journey as an endurance event helps prepare the mind for the long haul. Once you’ve committed to the idea, you will find that most of your future decisions will be influenced by enormous dedication to an unknown reality. Mentally, both challenges are nothing short of daunting.

2. You Need A Plan

Even the best laid marathon training plans are vulnerable to sabotaging factors beyond your control. Both marathon training and living with Alzheimer’s require time commitments that are easily disrupted by regular life. Successful management requires breaking down the big picture into smaller, more manageable steps. It also requires realistic goal setting, the input from experts, a support system, and a daily schedule. Once you have a basic plan to follow, accepting that most days “LIFE” will interfere with your plan, you can manage parts of the journey in some objective way.

3. Routines Are Vital

Alzheimer’s disease, like the Boston Marathon, is an endurance event. Training for long runs and building endurance requires consistent practice. The only way to really establish a fitness baseline and build a reliable training schedule is to establish a routine that morphs into habit.

The same is true for living with Alzheimer’s. Successful Alzheimer’s management requires that things stay familiar and predictable. The self care routine, the meal routine, the exercise routine, the bedtime routine… are the staples of independence. Routine and structure are absolutely essential in successful management of the daily trials and tribulations of cognitive impairment. Just like rolling out of bed and into your running shoes before your consciousness can talk you out of it, Alzheimer’s life should be as automatic as possible. The slightest variable can really throw a wrench into your plans.

4. You Need To Build A Base

Nobody starts training for a marathon by going for an 18 mile run.  Training only begins once you’ve established a base, usually at 25% of the target distance. So if your goal is to someday be able to run 26 miles, an ability to comfortably run 6-7 miles without too much effort is an ideal “base”.   A base allows you to always have a reserve of energy above “couch potato” status.

The challenges with Alzheimer’s living are different than endurance running, but they still require a level of energy significantly higher than living without the disease.  Much of this intensity requires physical strength, but a significant portion of it requires mental fortitude.

A healthy “base” in living with Alzheimer’s may include a new tolerance for self-centered behavior, or increased patience to respond to repetitive questions.  It may require some sleep schedule adjustments and a commitment to consistent approaches during self care tasks.  It requires some sacrifice of old leisure habits and forgoing free time to spend on other pursuits.  Determining a “new normal” and accommodating to the increased demands of Alzheimer’s living will result in a baseline from which you will be better able to rise to more challenging tasks when needed.  Somedays you will undoubtedly find yourself wondering, “Wow, I never thought I could do this.”

5. Motor Memory Is More Meaningful Than Declarative Memory

The ability of the human body to accomplish amazing feats requires practice, specifically procedural practice. A person does not become proficient at serving a tennis ball by reading a how-to book on tennis. It requires thousands and thousands of practiced serves, each time refining the toss and the backswing and the smallest minutia of movement into the ideal motor pattern. Similarly, a human body cannot learn how to effectively metabolize oxygen and nutrients during a long run unless it has practiced performance at that distance. There is no way to know how the body will respond to the demands of distance running without actually doing it… without letting each muscle fiber experience that stress at least once. No amount of traditional instruction, absorbing information through declarative memory,  will solidify the movement pattern better than actually performing the movement pattern. The body has to learn how to go long distances based on repetitive experience. This is motor learning.

In Alzheimer’s disease, functional independence is maintained through repetition in the absence of reliable memory.  A task like toothbrushing is a skill most people have practiced since childhood.  It is a deeply ingrained motor pattern of movement.  Someone with dementia does not need to fully depend on semantic memory to engage in that task.  The motor cortex knows exactly what to do without conscious effort.

Learning something new in the presence of Alzheimer’s disease requires the targeting of the motor cortex- the DOING versus the EXPLAINING.  Repetition is the key to storing movement patterns in the motor cortex, and the brain does not require higher cognitive functions to achieve motor memory.

6. Education Is Key

One of the biggest anxiety-producing concerns to the nascent long distance runner is the legendary “bonk”.  Bonking, otherwise known as “hitting the wall”, generally occurs sometime after about 15 miles during a marathon run, when glycogen stores in the liver and muscles become depleted.  It is characterized by a sudden onset of extreme fatigue, weakness, nausea, and vomiting.  If you’ve ever watched a marathon and saw people sitting or lying on the side of the road,  or staggering stooped over on wobbly legs, chances are you’ve witnessed a bonk.

Once you know about the phenomena of bonking, and all the other possible unpleasantries of distance running, you will do whatever you can to avoid them.  This requires education. Knowing what issues, possibilities, risks, and obstacles may come up can be discouraging and frightening, yet it is absolutely necessary information in order to go the distance.

Alzheimer’s disease is still a mystery to our medical community.  However, based on years of observation, there are some characteristics and problems that are likely to occur. Memory issues are followed by personality changes, which are in turn followed by impairments in communication, judgment, and reasoning.  Visual changes, behavior changes, movement pattern changes, the re-emergence of primitive reflexes… these issues are not forgone conclusions, but they are possibilities worth preparing for.

You will never regret knowing the ugly possibilities.

You will regret that you never saw them coming.

7. Proper Nutrition And Hydration Are Vital

A natural segue from the concept of “bonking”, proper nutrition and hydration are vital for sustaining the most basic human function.  When the human system is taxed or stressed, having a well-stocked supply of fluids, carbohydrates, protein, vitamins, and minerals is one way to prevent hitting the wall.  Replenishing these stores is key, however, to sustaining stressful conditions over time.

The key to maintaining proper nutrition and hydration is misunderstood by many.  Many people do not feel thirsty, so they do not drink.  They feel satiated after a piece of toast, and don’t bother to eat any protein.  The key is to eat a well-balanced diet REGULARLY and drink non-caffeinated liquids even when you are not thirsty.

Achieving ideal nutrition is not always realistic in the presence of cognitive decline- you can lead a horse to water and such.  Try to think outside of conventional meals- push the nutritious foods during the hungriest time of day.  Try smaller meals and more frequent snacks.  Sneak some vegetables into a smoothie.  Freeze an ensure or add protein powder to a milk shake.

And above all, try to think of food as gas in the tank.  In order to operate, the engine needs fuel.

8. Setbacks Happen

So you’re cruising along with your marathon training, logging some really good, long runs and feeling pretty much in control of your life, when suddenly a sharp pain in your hip makes you start to hobble sideways like a crab.  You ice it, stretch it, and rest it- losing three days of precious training time- and it feels better.  You go for a run again, and suddenly the pain is back.  Then it’s gone again.  Then the other hip starts hurting.  Then it heals.  Then you get the flu and are sidelined for a solid week.

Events beyond your control are to be expected.  Expect them.  Alzheimer’s living is not a linear path, and it is not a bell curve.  It is a ribbon of winding road, with a series of rolling hills, peppered with potholes and mud puddles.  You can’t always see around the corner and you don’t know how long that approaching thunderstorm off in the distance will last.

Maybe the setback was caused by something fixable and temporary- a medication change, excess fatigue, a hospitalization.  Or maybe you’re facing a new change in the disease process.  Sometimes it is very hard to tell the difference.

It is easier to conserve your energy if you expect some setbacks versus trying to avoid them all together.  This requires giving up some perceived control and relinquishing your imaginary powers to the universe.  Laughter is one way to do this.  Humility is another. None of us are bigger than Alzheimer’s disease yet.  But most days, just to cope, we need to pretend to be.

9. You Need A Training Buddy

There is a saying in the running community, “If you want to go fast, go alone.  If you want to go farther, go together.”

I am ridiculously dependent on my running friends to go any distance over six miles.  When I run alone, the first few miles are great for clearing the mind and solving the problems of the world.  But once boredom sets in, my brain just wants me to stop.  It begs me to stop.  It tries to talk me out of enduring the fatigue.  It pleads with me to take it easy, relax, give in.

But in a group setting, we are far more likely to be distracted by others.  There is comfort in shared misery, and energy in contagious enthusiasm.

One of the great assets of the dementia community is the Alzheimer’s Association.  Support groups are also great places to commiserate and share ideas.  Feeling validated and recognized for what you are going through is a great way to push through a difficult moment.

You need to build a village around you.  You need friends, and allies, and runner-girls who will hold your hair if you bonk.  The Alzheimer’s marathon is too long a distance to run alone.

10. Reward Yourself For The Daily Achievements, Not For Crossing The Finish Line

The irony of running a marathon is that there is NEVER an expectation that you will win it. Except for the occasional finisher’s medal, there is no cash prize or trophy at the end of the marathon.  There is no announcement in the newspaper.  To the non-running world, the reward is simply not worth the effort.

The satisfaction, however, is in the learned discipline, and for enduring a challenge that many people will never know.  The reward is in the plate of spaghetti after a rainy 16-miler, and in the smaller jean size, and in the runner’s high.

The finish line in Alzheimer’s disease is nebulous and confusing.  There is no measurable distance, and there is certainly no finisher’s medal.  There is something to be said, however, for the making it through the daily grind with a smile on your face…  for a drama-less shower, a full night’s sleep, a pleasant reminiscing moment.

We need to work on rewarding the participants of the Alzheimer’s Endurance Race.  Like marathon running, there is no expectation of winning the race, but there should be a reward for enduring a challenge that more and more people will unwilling take on.

This is a global disease, and the world at large should consider Living with Alzheimer’s an Olympic event.  Everyday we should celebrate the heroes of the Alzheimer’s Endurance Race with a simple attaboy, a few hours of personal time, a nutritious meal, and at the very least, hope for better days.

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3 comments

  1. Thanks for offering these helpful tips. We offer a service that helps with legacy planning. Members can leave messages for their loved ones after passing. http://www.Genternity.co

  2. I hope article will help the caregivers but also remind all of us to remember to help and encourage them as they endure their marathon.

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