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The Truth About Alzheimer’s Disease

My dad doesn’t talk about his disease very often. Well … really … ever. So, when he does, we listen.

“We need to find a cure. Because I’ve got that.”

It was a simple enough statement, said to Mr. B, who works in the activities department with Alzheimer’s and dementia patients at a senior-living facility. And it was quiet — most everything Dad says is quiet, barely a mumbly whisper. But, at the same time, the statement rang loud and clear.

We told Dad that doctors and researchers are working so hard to find a cure.

But none of us said what we know: Dad will die with the disease. Right now, everyone who has the disease dies with the disease.

“Are there any drugs?”

Well, yes, there are. We tell him he’s taking them. But, what we know — and what he can’t understand? They won’t cure him. They will only temporarily slow the symptoms of the disease.

That’s the thing about Alzheimer’s Disease that I don’t think people understand. The ugly, dirty, gritty part of the disease that is about so much more than being forgetful. Nearly daily, I hear stories from my mom about scary — and progressively scarier — things happening with my dad.

Some days, the stories are as simple as Dad not being able to get his britches on anymore. Other days, the stories are about icy falls and angry words and actions.

Recently, Dad took a tumble on the ice. When they got to the urgent care facility, Dad couldn’t pinpoint his pain. In fact, he pointed across the room and told the doctor that it hurt him over there — in an inanimate object. This is just one of the many reasons why Alzheimer’s Disease is so scary.

My dad is a victim of a cruel, cruel beast. But, Mom? She’s a victim, too. Because he was supposed to be her partner and, now, she’s his caretaker. 24/7 — around the clock.

There are 2.5 times more women than men providing intensive “on-duty” care 24 hours a day for someone with Alzheimer’s.

There is no vacation time. There is no hazard pay. And, for the most part, it’s a pretty thankless job. (Though, I hope she knows how thankful all of us kids are for all she does. And I hope she knows I pray for her — and for my dad — every single day.)

Due to the physical and emotional burden of caregiving, Alzheimer’s and dementia caregivers had $9.3 billion in additional health care costs of their own in 2013. 

My mom and dad are my rocks — and the foundation upon which so many of us have been built. And it is painful to see that crumbling as Alzheimer’s takes its toll on our family.

But, we are not alone. More than 5 million Americans are living with Alzheimer’s Disease. That is a huge number of people. If you multiply that to account for spouses, partners, children — that’s millions and millions more people affected by the disease on a daily basis.

There are days I feel hopeless and helpless. Like what I do or say or think about the disease doesn’t matter. Because it is still, I would wager, one of the most misunderstood diseases out there. And my voice? What good does one voice do?

But, here’s the thing — if all of us “one voices” stopped talking, the silence would be deafening. Instead, we have to speak up. We have to tell our story, our families’ stories. We have to do what little we can to move the efforts forward.

And, so, with what little bit of endurance I have left after a very tumultuous year, I will be joining my fellow Alz Stars again for the Fifth Third River Bank Run to raise funds and awareness for the Alzheimer’s Association of West Michigan. Because, every penny I can raise is another step closer to finding a cure. It won’t save my dad. But, it might save someone else’s dad. Or mom. Or brother. Or sister. Or child.

http://act.alz.org/goto/kimijoy

Oh, and one last parting tidbit? According to the Alzheimer’s Association, every 67 seconds someone in the United States develops Alzheimer’s. And, that, my friends scares the crap out of me. 

Alzheimer's Stats

— Facts and figures from the Alzheimer’s Association

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Trying to Process What Happened in Boston

As we all know, I ran a half marathon on Saturday.

Ready to race

Getting ready to race.

A half marathon that I was having a lot of mixed feelings about, truth be told. I sat down a couple of times Sunday to write my recap of the race. But, I was having trouble finding the right words to describe it. “I’ll write it Monday, once my hips stop hurting,” I told myself. (Because, heaven knows, you can’t write when your hips hurt.)

And then …

Monday happened.

And, as a runner, a marathoner, I felt like someone attacked my family. Runners have come to be a huge part of my community, of who I’ve become. Some of my dearest friends and supporters are runners. As a group, they’ve changed my life. And those spectators? Cheering at the finish line? They’re the ones who pull us through. They’re the ones there at every single race, cheering our names, clapping their hands and bringing us home — whether they’re our family and friends or total strangers.

The unthinkable had happened.

I was in shock. I think, maybe, I’m still in shock.

To sit down and write a race recap for my own half marathon seems … I don’t know … silly. If I couldn’t find the right words before, I am now completely speechless. All I can think about when I try to write about my half marathon is when I ran across that finish line.

As a distance runner, when I see that finish line, something inside of me lets go. All the pain from the miles before, all the exhaustion of the months of training, all the worry about the race … they all just disappear. And a sense of happiness and pride and relief spreads through my body. I melt. And then, at the finish line, I see Mr. B’s smiling face chanting “Go, Kimi, go!” And my friends and family cheering me on — right under that clock that says “You did it; you’re here.” And it’s a feeling of pure and utter elation that takes over. Oh, yeah, and there’s love — knowing that my friends and family are there to celebrate that moment with me.

Mr. B and me on race day

My support crew — and my biggest cheerleader.

That finish-line memory was still fresh for me, is still so fresh for me. And that makes Monday’s tragedy even harder to comprehend and process.

All I can see in my head is those runners running toward their families and friends at the finish line in Boston — a smile on their faces because they’re there, they did it. For some, a lifelong dream just to be on that course. For others, a chance to do better than the year before. Weeks, months, years of sacrifice — for the runners and their families. And I see their friends and families — smiles on their faces, so proud and full of love for their runner. All that love, pride, joy and excitement.

Stolen.

To have all of that taken away in an instant. It’s heart breaking. And confusing. And … so many other things.

I couldn’t stop thinking about it, crying about it. Thankfully Mr. B was home. We watched some news. I cried. And then, we turned off the TV and left the apartment. I needed space; I needed air.

So, we went to pick up my race charm from Saturday’s race.

Saturday I ran for Pickle. Always for Pickle.

Saturday I ran for Pickle. Always for Pickle.

I expressed to Mr. B that I’m so sad that these types of things happen in the world. Added to a difficult hate-filled experience earlier in my day, it was a lot of hate and sadness for me to take in for one day. And I told him I’m scared about the world we’re bringing a precious, precious child into. As usual, Mr. B’s wisdom was just what I needed to hear:

“This is exactly why we do need to bring a child into this world; this world needs another kind person.”

And, so it is on this that I try to focus. Even amidst the horror and tragedy and hate, there is beauty and kindness. And givers. And sharers. And helpers.

“When I was a boy and I would see scary things in the news, my mother would say to me: ‘Look for the helpers. You will always find people who are helping.'” ~Mr. Rogers

What’s more, there is always running. There will always be running.

There is always running.

There is always running.

Tonight I laced up my still-muddy-from-the-race shoes and ran. Well, as much as Pickle would let me. Not because it was on a training program. Not because I needed to burn some calories. Tonight I ran because I can. I ran because it is a gift. I ran because I had to.

I ran because that’s all I know to do right now.

Sans watch. Sans GPS. Just me and my thoughts. I have no idea how far I went, though I could hazard a guess, nor how long it took me. All I know is I ran.

(And walked a little, too. Pickle likes that better. We’re compromising.)

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True Confessions: Half Marathon Edition

Confession time: I talk a good game. I’m just maybe not so good at playing it.

Training for this half marathon has been a roller coaster of emotions and strengths and weaknesses and everything else that goes up and down over time. When I started training for it in December, I was running a sub-8:30 pace for even my longer runs — faster than that, even, for some of my shorter runs. What’s even more? I was feeling great. And confident as a runner. And as someone who was finally done looking back at who I was and being shocked because, ohmigosh, I’m actually running.

My initial goal for this half? 2:05. It would have been a PR by at least four minutes. And, if my training kept up as it was going, I maybe could have knocked even more off of it.

I was excited and really looking forward to this race.

And, then, the most amazingly wonderful thing happened.

Baby belly

That’s a baby in there! Not a Sunday dinner.

And I got tired. Really, really tired. And sometimes, Pickle’s desperate pleas for a nap won out over an evening run. Because, holy cow!, I’m actually growing a human. (Thankfully, I never did get any morning sickness — for this I am immensely grateful.) And when I did run — and I didn’t miss a single long run (WIN!) — my exhaustion became an evil monster dragging me down, slowing me down. My 8:30s quickly became 9:30s then 10s then 10:30s. Now, I’m doing a run-walk on all of my runs, no matter the distance (10 miles, 6 miles, 3 miles). Run a mile, walk a quarter-mile — lather, rinse, repeat.

And, from many of my runs, I came home even more tired. And, worse yet, defeated — even as I tell myself (and truly believe) what a gift it is to be able to run while pregnant and what a gift it is to be carrying this child. And:

“Don’t worry, Kimi Joy, running will be there after the baby’s born — and so will your PR.” 

Still. That voice? That one in the back of my head who pushes me (admittedly, sometimes too hard) and is hard on me? She’s making me feel bad about how far I feel I’ve “fallen.” As much as I believe that if you run, you’re a runner — regardless of your speed — I miss my 8:30s. Because that’s when I felt BEST as a runner, as myself. That’s when I felt most proud.

Right now? I’m not feeling proud. I’m stressed out and worried about this race — this race I was so excited to be running and so looking forward to. I find myself more nervous than I’ve been for any race. Even more nervous than I was for the marathon.

I think it’s because I don’t know what to expect.

Running while pregnant is new for me. My body feels different, it reacts differently. It’s harder to carry it over distances — even though I’ve not gained too much weight. I can’t get a handle on how to fuel this body. Because my tried-and-true fuel for my long runs? My body is processing them completely differently. And I just feel like I can’t get it right. Nothing feels right. Plus, I get tired so much sooner than I did pre-Pickle. Plus, obviously, I’m slower. And, while I’m not competitive against other people, I am immensely competitive against myself. And when I’m out there, running three minutes per mile slower than my previous races? It bothers me. More than I care to admit.

Oh, and did I mention that I’ll be sporting Mr. B’s running clothes because none of mine fit me anymore? (Picking out a fun race outfit is, like, 75 percent of the fun of racing.)

Please don’t get me wrong — this baby is more important than any race I could ever dream of running. I love this baby, I love our growing family — more than I ever dreamed possible (I mean, I’ve never even met Pickle and already, he/she is the first thing I think about when I wake up and the last thing on my mind before I “sleep” — and the thing that most commonly appears in my dreams at night). And I really do feel honored to get to run this race with Pickle. (YAY for Pickle’s first 13.1!!!!)

I just wish I didn’t feel so weak and tired and nervous. I wish I felt more ready going in to this race.* For me and for Pickle.

*Truth be told, pre-race nerves and jitters are nothing new. In fact, they’re part of my pre-race routine. I think they’re just more prevalent this time around because it isn’t just me out there running. It’s this tiny, darling, precious gift who is just along for the ride.

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A Pre-Race Routine

So, over the past few years of running, I’ve developed a routine in the days leading up to the big race (“big” = half marathon or more). I don’t often detour from this routine, as it’s as important to my “success” on race day as the months of training leading up to it.

My routine:

  • Monday: The day I start obsessively checking the weather for race day
  • Tuesday: The day I start fretting about whether my training has been enough, has been good enough
  • Wednesday: The day I start worrying about fueling my body properly in the days before the race — and on race day
  • Thursday: The day I go back and forth about why I’m doing this — and if I even should
  • Friday: The day all of those worries intensify and become one big ol’ ball of nerves — and excitement — that makes sleeping difficult
  • Saturday: The day I wake up early for oatmeal pancakes and use the bathroom umpteen times before the race begins. And then I “race” — and stop at every bathroom stop. (I can only imagine it’ll be worse with Pickle bopping around down there for 13.1 miles.)
  • Sunday: The day I sleep in and, when I wake up, look back and still can’t believe it was me running that race on Saturday
Basically ...

Basically …

Just a few more days until the half marathon. I’m having very mixed feelings about it. More to come on that later. For now, I must get back to fretting — it is Tuesday, after all.

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Running With Purpose

Ever since I started running, it’s been about something. Whether it was losing weight or training for a race or getting over a breakup or simply clearing my head, there was a reason for why I was out there. And while I maintain there’s nothing better for my mental health than a good, solid run, I’ve been feeling like something’s been missing.

It was hard to explain. I still ran. I still looked forward to it. I still enjoyed it. But there was just … something.

And then I decided to run the River Bank Run 25k. And raise money for the Alzheimer’s Association as part of their ALZ Stars team. And suddenly, I was more than looking forward to training for this run. I was excited about it. Really, really excited about it.

“Every day is a good day when you run.” ~Kevin Nelson

This weekend I attended the first free training run for the River Bank Run — an easy three miles with a group of others running the race in May as well. (This was after staying up late Friday night to register for the first-ever Gazelle Girl Half Marathon — which I’m equally excited about, but for different reasons.) And then I came home and mapped out my training program for the run, using Hal Higdon’s Intermediate Half Marathon Training Program as a guide. And it was fun! Figuring out where all the pieces fit each week — four runs, three strength training days and a cross-training day. I had my calendar page spread out in front of me and a pencil in my hand. I got it sketched all out, starting with Sunday: Stretch & Strength.

And then there was today: 3.5 miles, followed by a session with T2.5. The plan? Run immediately after work, come  home for a quick dinner and then head to the gym. T2.5 ended up rescheduling this week’s session (that’s why I use pencil), so I was able to take my time after work before I went out for my run.

Let me set the scene: 60 degrees, rainy-ish, slight breeze

I geared up …

Suit Up

No, but really:

All the safety gear for the dark-time run.

All the safety gear for the dark-time run.

… and headed out for my run, aware the whole time that I was running for something more than myself.

Dad and me

The reason behind the run.

And, let me tell you: This run was different. This run was everything a run should be. I felt healthy. And strong. And happy. And fast. Faster than I have in a long time, at least. I mean, look at these splits:

Running splits

And every step, I thought of wonderful memories and happy thoughts. Memories and happy thoughts — this is what this run is about. So, when I got home, I called Dad. And I told him how happy I was. And how proud I was of this run. And how blessed I felt to be able to do something good through running. And then I cried a little. Running for a purpose has … well … given my running a purpose. And it is such a gift.

Running saved my life. And now, maybe some of the money I raise can be used to help improve — or, one day, save — someone else’s life.

In closing, I’d love to invite anyone out there to join the ALZ Stars by running or walking the River Bank Run (5k, 10k and 25k options available). The more, the merrier! I’ll even make you dinner the night before!

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Running for a Cause: Alzheimer’s Disease

I’ve had a goal to run the Fifth Third River Bank Run 25k since I started running. I’ve done the 5k and 10k during the race, but the 25k waits for me to tackle it. Plus, I’ve done most of the major races in my area that were on my “bucket list.” When I saw that the Alzheimer’s Association of West Michigan was one of the charity partners, I knew this was it. This was my year to run — for me and for my family.

So, I’ve committed to running with the ALZ Stars to raise money and awareness for Alzheimer’s Disease. In fact, I’ve been asked to give the gift of my time to help move this cause forward — a gift I’m happy to give, as often as I can.

Because Alzheimer’s is an important disease people don’t understand. A disease I don’t understand — but through my learning process and personal experiences, I think I can help other people understand. At least a little. I think I can do good and spread awareness to help people realize that Alzheimer’s Disease isn’t just about forgetting where you put your keys. It’s a sickness that robs people of the things that make them who they are; it robs people of the ones they love. And there’s nothing you can do to cure it once you have it.

Alzheimer’s claims victims — young and old. Those who have the disease and those who love the person who has the disease. Alzheimer’s wears many, many faces. And two of those faces belong to two of the most important people in my life: My parents.

Mom and Dad

Two of the biggest lights in my life: Dad and Mom.

My father was diagnosed when he was 59 with Early-Onset Alzheimer’s Disease. Needless to say, his life was turned upside down. But Mom? Her life, too, has changed dramatically. Instead of a partner to walk by her side for the rest of her life, my father will become dependent on her for everything from getting dressed to knowing which dinner plate is his — and everything in between.

So, here’s my spiel:

I’ve been blessed with the opportunity to run for a very important cause and one near and dear to my heart. Alzheimer’s Disease is so much more than people understand — and it touches so many more lives than anyone can imagine.

People don’t talk about Alzheimer’s Disease. Or, at least, they don’t talk enough. It’s almost something they’re ashamed of, like it’s their fault — caregivers and those with the disease. Many suffer in silence. They don’t talk about the hurt, the fear, the anger, the doubt, the hate, the love, the strength. They don’t talk about the changes and the surprises — both good and bad. They don’t talk about moments of clarity and moments of complete hopelessness.

There is no cure for Alzheimer’s Disease. There are drugs that can help slow the progression of symptoms of the disease. But, inevitably, the disease will slowly steal all the pieces of someone’s life until there’s no life left in them. Research, studies, trials — these things are key to figuring out how to stop this disease from stealing any more precious memories and important moments.

It’s important the people understand this disease so they realize that there isn’t shame in it and we can’t hide because of it. We must talk about it so people understand it, so they see the importance of the research and they appreciate the difficulties of not only having Alzheimer’s Disease but of loving someone with Alzheimer’s Disease. Alzheimer’s Disease has a face; it has a name. It’s not just a list of symptoms, it is a person and a story.

My final message? To put it simply, Alzheimer’s Disease changes your life. Nothing is ever the same for the person diagnosed with this disease and for the people who love them. And, once you hear those words, “Alzheimer’s Disease,” there’s no going back — and going forward is hard. But all you can do is wake up every morning, smile and thank God for the moments you have together and get on with your day, taking it all one step at a time — together.

The mission of the Alzheimer’s Association is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support to all of those affected; and to reduce the risk of dementia through the promotion of brain health. I’m running as an ALZ Star to work toward “A World Without Alzheimer’s.” And I’d love your help to get there.

This year, I run for my dad. I run for my mom. I run for myself and my siblings and my family. I run for every single person who feels helpless against this terrible disease.

I understand that money’s tight. And I understand that it may not be possible for you to donate. That’s OK. But, if you would, please keep me and my family in your thoughts as I work to raise money for this important cause. And, please forgive me if you see a couple more posts about this over the next six months.

And, do me one more favor? Spend a little extra time making memories, giving hugs and sharing laughs with the people you love. Because life is too short to miss out on one second of love, one second of joy.

Me with my parents

Dad and Mom give me one last group hug before I walk down the aisle toward Mr. B in September.

And for those of you who know me and my family personally, I do ask for your patience — and discretion — as we all work our way through what this diagnosis means to us as individuals and to us as a whole. Some of us aren’t ready to talk about it yet. Some of us aren’t ready to even accept it yet. So, please, keep us in your thoughts — but allow us some privacy. When we’re ready to talk, we will. (And by “we,” I don’t mean me. Because — as evidenced by my whole blog — the way I deal with anything is to write and talk and share. It’s too hard for me to remain silent.)

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A Girl Without a (Training) Plan

This is the first time in well over a year that I’m not training for some kind of race.

All my race bibs

In 2011, I ran 24 races. In 2012, several more.

It feels extremely weird. Really, really weird. It was my personal choice — for my body’s sake, my mind’s sake, my relationship’s sake and my bank account’s sake. But that doesn’t make it less hard.

And it’s leaving too much time for thinking. And doubting.

  • Can I still do it?
  • What if I lose all the gains I’ve made in training?
  • How am I going to fill my time?
  • What can I train for next?
  • Does my body (and bank account) really need this break?
  • What’s wrong with me? Why can’t I just run like I used to?
  • Does this make me less of a runner?
  • Is running for fun really going to work for me?
  • Who am I without a training plan?
  • What can my next goal be, if it’s not to conquer a new distance?
  • Why is it so hard for me to return to my running roots — the ones of love and joy and hope?

I do know that most of this is nonsense. A runner without a training plan is, of course, still a runner. I am firm in my belief:

If you run, you are a runner.

Besides, racing isn’t the only way to run. And racing doesn’t define you as a runner. Just ask Kara Goucher.

“That’s the thing about running: Your greatest runs are rarely measured by racing success. They are moments in time when running allows you to see how wonderful your life is.” ~Kara Goucher, via Runner’s World

After the Kalamazoo Half Marathon, I was completely exhausted from running and took a full week off. I came back to running feeling much better about it and knowing that I needed to take some time off from strict training programs — for a while, anyway. My mind needed it as much as my body did. And that first run back? I was beginning to see glimpses of that very new love I felt when I took my first steps as a runner. I want to get back there again.

First run back

All smiles during my first run back from my week-long running break.

In the beginning, I fell in love with running for running — not racing. Running saved my life — not racing. Running taught me to love myself and believe in myself — not racing. Racing was simply a way to say: “See, I really can do it. Look how far I’ve come.”

I just need to get back to that original love. That running for running’s sake. That rush and love and joy of running. But I know myself very well, and I am an extremely goal-driven person. If I don’t have a new challenge to work toward, it’s hard for me.

I’ll get back there. Every day I lace up my running shoes and head out the door is a good day — even when the run’s kinda stinky. And I know know that this is the right step for me this year — amidst wedding planning, family “stuff” and blending two lives. But, again, that doesn’t make it any less difficult.

But there’s a component that’s missing lately. I can’t put my finger on it. A written schedule may help — it reads like a training plan without the pressure — and gives me a daily goal to meet. Perhaps shedding the GPS now and again would help, too.

Maybe you all have some suggestions as well?

Mr. B and Me

One of my favorite races to date wasn’t about the race at all. It was about being next to Mr. B — laughing, chatting and, of course, crying. That’s the feeling I love. That’s why I run.

Whispery part: I must admit, some days it’s quite hard to read about everyone’s training and races, knowing that I don’t have a race in my very near future. Some days I get jealous of the looks of accomplishment across people’s faces when they finish a race. And it’s hard to stand firm in my belief in myself as a runner, knowing that even though I don’t race, I’m still a runner.  

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