Jun 202014
 

Today, my three siblings, several friends and I are packed inside my small apartment in New York
to make Korean lucky pouches, called “jumoni,” from sunrise to sunset as our way of participating in The Longest Day, an event to honor those facing Alzheimer’s. These small, colorful pouches made out of cloth and drawn closed at the top with a braided string were traditionally filled with money or special treats and given to small children by elders. We hope to make 100 of these pouches, each of whregina pouchich will be one-of-a-kind, from fabric and thread donated by my company, as well as from unwanted clothes.

These lucky pouches hold special meaning for me because my grandmother taught me how to make them w
hen she raised me in Korea. My grandmother is everything to me – my parent, my best friend and my biggest inspiration. I was born in New York but was dropped off at the age of 1 to be raised by my grandmother in Korea. Shortly after having me, my mother was diagnosed with stomach cancer and my father was her primary caregiver while also working full-time so they needed my grandmother to take care of me so that they could focus on my mother’s illness. (My mother passed away two years later.) When I met my grandmother for the first time at the Korean airport, I immediately nestled in her arms as if I already knew her and felt an immediate connectio
n with her.lucky pouch personal

It was extremely hard to leave my grandmother alone when I returned to the United States in 2005. Then three years ago, my grandmother was diagnosed with Alzheimer’s, and I was devastated by the news. It shook me to the core, and I had a very difficult time accepting her condition. It was even difficult for me to talk about her with my family and friends. I often cried when I thought of her randomly—walking down the street, in the shower, when I was cleaning. However, I realized that I wanted to do something instead of just letting my emotions get me down.

The Longest Day is not just about people with Alzheimer’s disease. It’s about the courage of the families who are facing this devastating disease together and about the selfless caregivers, like my aunt in Korea who is taking care of my grandmother, who provide the abundant love and support to those afflicted. I felt very bitter and guilty about my grandmother going through this difficult disease and am grateful every day that someone is there to help take care of her.

So today is for my grandmother. I have created an assembly line and am teaching my siblings and friends how to make these beautiful lucky pouches. Since not everyone knows how to use a sewing machine, we are allowing people to do the parts that they’re comfortable with, whether it’s cutting the fabric or braiding the thread to make the cords for the drawstrings.

By the end of today, we hope to make 100 pieces of these beautiful pouches and give them to those who are sponsoring us as a thank-you gift. With the leftover pouches, we hope to sell them to raise additional money for the Alzheimer’s Association. I’m sure my grandmother would love our labor of love, and she will be in our thoughts every minute of today.

About the Author: Regina Chung, 29, is a jewelry designer who lives in New York, N.Y. She is participating in The Longest Day®, a sunrise to sunset event to honor the strength, passion and endurance of those facing Alzheimer’s with a day of activity. 

Jun 202014
 

Playing video games for 16 hours is normal for a teenager on summer vacation, but if a bunch of adults were doing it, they would be said to be wasting their day. Not when those adults are defending castles from dragons or hunting zombies to participate in The Longest Day. For 16 hours today, a group of gamers — my fellow coworkers at Geektriumvirate.com, my girlfriend and I — are playing video games to honor those with Alzheimer’s.vg1

I love playing video games. But more than that, I love my grandmother, who is afflicted with Alzheimer’s.

When I first saw the idea for The Longest Day in one of the Alzheimer’s Association emails, I knew immediately video games would be a great media to get friends and family involved. Video games now are rich with online gameplay and cooperative interaction that, for some of my friends, is the only way we are able to share each other’s time. I wanted to give my friends the sense of achievement you get from actually taking part in a charitable endeavor. But more importantly, I wanted to show my family how much I care about what my grandmother is going through.

vg2Today, we are playing a variety of games — Borderlands 2, World of Warcraft, Assassin’s Creed 4: Black Flag — all while sharing the experience with friends via Google Hangout and live streaming the event on our YouTube channel. The morning hours are starting great as teammates Andrew and Amanda are playing World of Warcraft with their guild. Their online guild consists of 250 members from all over the world. Just knowing this event is involving so many people makes me appreciate why I set out to create this event.

Many hours already into The Longest Day, and my thumbs are sore but my spirits are up. Friends and family have been checking in on us via Google Hangout to say hi and watch us. Tonight, we will cap off this important day by visiting the opening party for The Art of Video Games exhibit at the Toledo Museum of Art.

Today has been truly fulfilling as we used the leisurely fun of video games to help an important and serious cause.  I don’t want anyone else to endure what my grandmother endured with this disease. My hope is, there will be an end to Alzheimer’s.

About the Author: When Nathan Dean, 33, isn’t playing video games, he works as a logistics analyst for a marketing agency and is cofounder of the blog GeekTriumvirate.com in Grand Rapids, Mich. This is his first year participating in Alzheimer’s Association’s The Longest Day®

Jun 202014
 
nancy hiking

Today, I began the second half of my thru-hike of the Appalachian Trail as part of The Longest Day, an event to fight Alzheimer’s. A thru-hike is a long-distance journey from trail beginning to end. I am dedicating this hike to my mother, Debbie, who at the age of 52, was diagnosed with younger-onset Alzheimer’s.

My mother is the most caring, loving, kind-hearted, independent woman who has ever graced this earth. From the moment I was born she has encouraged me to always fight for my dreams, regardless of the trials I may encounter. This has been burned on my heart, and I have carried that with me every day.

My dream of thru-hiking the Appalachian Trail began back in 2009. I roped my best friend into joining me. The journey was to begin after our college graduation.  Little didnancy harrington and mother I know, the next year my mother would be diagnosed with younger-onset Alzheimer’s at age 52 — and everything would change.

We began our hike in April 2013, but 850 miles in, I noticed my mother’s Alzheimer’s was making her fade quicker than when I had left. The pain in my father’s voice was more evident. In late June, I pulled off of the trail. I could not justify missing a few more good months with her. Since then, my mother has progressed quite rapidly. The pain this disease has caused my mother and her loved ones is unbearable, and it is a pain felt by more than 5 million Americans who also are living with this disease.

For four years, I have fought alongside my father and brothers to make my mother’s life as comfortable as possible. No longer can I sit back and watch this disease hurt more people. This is why today, I continue to hike and extend my fight further. I want to raise money to change the future of this disease.

Researchers have set the goal of finding a cure for this wretched disease by 2025. It is a lofty goal, but one that can be obtained if we all join together.

So far, I have raised $Nancy harrington 25,969 for the Alzheimer’s Association. This fundraiser has been a huge support group for my family and me. By simply telling people my mother’s story, they have immediately wanted to g ive what they could to the cause, and also spread the word. Some donations have been small, a couple of dollars. Others have been larger, and even entailed sports teams joining together to raise thousands of dollars. To me, this is the most beautiful thing. Knowing how much support is out there has helped me immensely in coping with my mother’s condition.

Today, I am asking everyone to join me in honoring my mother and her legacy as I walk toward Mt. Katahdin. I will be in motion throughout The Longest Day, keeping hope for a future where fewer families feel the pain of this disease.

About the Author: Nancy Harringon just completed an internship at the Sierra Outdoor School. Today, she is participating in The Longest Day®, a sunrise to sunset event to honor the strength, passion and endurance of those facing Alzheimer’s.

Jun 182014
 

My mom has Alzheimer’s.  And it’s not easy.

Patience is not a trait that runs in our family, and Alzheimer’s tries to take away your control. But I have learned that by educating myself about the disease and reaching out to others going through similar situations, my sisters and I can stay strong.

I was born when my mom was 37 and my dad was 41.  They had already “finished” their family – my sisters were 17, 15 and 13 – but welcomed the surprise.  My mom was involved in everything in our little town, from Rotary Club and the school board to attending college while working full time.  As the matriarch of the family, everyone in town knows her.  The entire family, including Dad, look to her in order to be in the know.



Thanks to you and your votes, the Alzheimer’s Association won a $75K donation in the DSW Leave Your Mark contest.View video

So we weren’t expecting it when we noticed she was not quite on her game.  She was forgetting things. As many tend to do, we attributed it to old age at first.  Because I wasn’t seeing her weekly or even monthly and now lived two hours away, I noticed more dramatic changes than my father and sisters did. We realized that mom should see a specialist, and once she did, we learned what we had feared – mom had Alzheimer’s.

For a while, Mom didn’t want anyone to know.  She was a well-respected community leader still serving on the school board.  As a family, however, we needed support as much as mom did. My sisters and I began researching and reading whatever we could to learn more about the disease; what we should expect, how we should begin planning.Mom n me laughing

I came across the Alzheimer’s Association’s website and started looking for local meetings that I could attend in order to educate myself and my family. I registered for the Walk to End Alzheimer’s and got my family involved.  Mom finally became open to sharing her diagnosis and began “letting go” of some of the things she had always done and accepting help.  This was not easy for her to do, but my mom is strong.

I get my strength from her. We aren’t victims of this disease. We are fighters.

Each of us girls has our strong suit when it comes to taking care of our parents.  From daily home maintenance like mowing the lawn and keeping track of medications to legal planning, paperwork and research, we all have our role.  My dad continues to be my mom’s primary care giver, but as he is not in good health, this wears on him.  But he would never complain, because that’s not what he does.

For me, connecting with the Central Ohio Chapter of the Alzheimer’s Association has provided the support and education I need to face this disease. When I attended my first monthly “happy hour” meeting, I met others like me – moms with young children who care for a parent with Alzheimer’s.  Two of those women continue to be part of my personal support system.  We are all in very different stages now, but when I have a bad day, I can message or text them, and they understand what I am going through like no one else in my life.

Me and Mom St JOne of these women invited me to go to some classes with her that would help me understand what my mom was going through using role play.  At first it seemed kind of silly, but boy did I learn a lot about how I was making things worse when I interacted with my mom! Now I try not to correct her, and I try to understand the frustration she must feel when she recognizes that she is forgetting things.

Knowing about what resources are available has helped me in other ways, such as researching financial advice in order to hold onto the childhood property that has been in my family since our grandparents came to America from Czechoslovakia.  For me, planning and understanding how to have these difficult conversations with our family as a whole has been vital.

And as for mom? She benefits from talking to others with the disease at awareness meetings. Seeing friends in her community decline due to Alzheimer’s is difficult, but it helps her prepare for the future.  Meeting with people who are so driven and determined to defeat this disease gives us hope. Advocates with no personal connection to the disease who speak in local meeting provide assistance and news. Everyone plays an important role.

I’m a doer. And as a woman, the daughter of someone with Alzheimer’s and a mother, I know something needs to be done. I don’t back down. I am not embarrassed to ask for help. I’ve developed control so that I don’t allow this disease to make me a victim. I am never a victim… I get that from mom.

About the author: Patti Gilligan, a director of change management at DSW Designer Shoe Warehouse, nominated the Alzheimer’s Association as one of seven charities competing to win a $75,000 donation in DSW’s Leave Your Mark program. 

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Jun 172014
 
longest day1

In the Fall of 2010, my family and I received the worst news we had ever had—my 57-year-old mom had dementia.  It’s been four years since we received that initial diagnosis, and the reality and complexity of the disease is only getting more and more difficult to comprehend.

I’ve spent the last year watching my mom’s motor skills and memory decline and it truly breaks my heart.  I can’t imagine my life without her, and I don’t want another daughter to go through this with their own mom.  That hope—that there will be a day when no one watches their mother go through this—is why I am participating in The Longest Day, a sunrise-to-sunset event to fight Alzheimer’s, for the second time.

Last year, when I first heard about this event, I struggled with my decision to participate because very few people in my life knew about my mom’s diagnosis.  I was worried about letting the whole world in on our not-so-secret secret.  Thankfully, I got over those fears and together with my team, the Cape Cod Alzstars, went on to raise more than $45,000 for the Alzheimer’s Association.  This year it wasn’t even a question of whether or not I would participate.  So far this year we’ve raised more than $35,000 and we’re on track to beat last year’s total!mollywme and mom1

My Dad, My Hero

The Longest Day isn’t just about raising money to end this disease, it’s about spreading awareness, spending time with our loved ones who are living with Alzheimer’s, and supporting our caregivers—the true unsung heroes.

My dad is the strongest person I know. I am so proud of him every day.  As my mother’s caregiver, there is no vacation from Alzheimer’s, from the first shower in the morning to “sundowning” in the evening. Caregivers spend every ounce of their attention and energy on keeping those with Alzheimer’s safe, content and engaged. Our family is also very grateful for the caring and compassionate people who spend time with my mom throughout the week; they are extensions of our family now.

How I Became an Advocate

It’s interesting—while it took me a long time to accept my mom’s illness, and overcome my reluctance to shine a light on our personal struggles—after I participated in The Longest Day last year, I was inspired to become more involved with the Alzheimer’s Association and do whatever I can to help. The experience made me look at my life differently, and now my focus is on giving back and making a difference in everyday life. If anyone reading this is looking for a way to get involved, the alz.org website is a really helpful tool, providing so much information about the disease and many suggestions on how anyone can make a difference.

longest day1On The Longest Day, my team will be putting on a fishing tournament. We live by the marina, and fishing has always been a favorite family activity. We will be rising early to catch striped bass and tuna. After spending the day near the water, family and friends will gather to enjoy a BBQ (from Nauset Farms!), and a silent auction and raffle with some really great items.  We have experienced so much support from family, friends and local businesses.  Feeling such a sense of community as we have dealt with this disease has been amazing.  It was so great to see everyone come together last year, and I’m sure our day this year will be even better!

I encourage every one of you to join in on The Longest Day and help us put an end to Alzheimer’s!

About the Author: Molly Waugh, 27, is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 21, 2014, to raise funds and awareness for Alzheimer’s care, support and research.

 

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Jun 142014
 

father's day blog 2Father’s Day – or any day, for that matter – is not a typical day for Jason.

Jason is a teenage caregiver.

While many young adults of 18 are thinking about final exams and high school graduation parties, Jason Hatke’s mind is looking much further into the future. At age 46, Jason’s father Mike was diagnosed with younger-onset Alzheimer’s disease. Jason was only 13.

There were signs in the years before Jason’s father was diagnosed. In the 6th grade, Jason was in his school classroom viewing a video about Alzheimer’s with his fellow students. Jason immediately recognized the signs of Alzheimer’s shown in the video as behaviors his father had been displaying at home. He breached the topic with his mother Rita. Then, other issues began to surface. Mike’s boss noticed he had been experiencing trouble with his memory, especially in the afternoon hours after lunch. Soon Mike was seeing doctors to figure out what was going on.

Two years and many tests later, the truth was revealed.

Mike received a diagnosis of Alzheimer’s, and it changed the course of Jason’s life.

At 15, Jason became his father’s primary caregiver. Jason chose to step up to the plate, taking on the task of determining his father’s daily needs. With his mother working full-time more than 30 miles from their home, it became Jason’s responsibility to watch over his father. “It’s an everyday struggle,” Jason says. “There are days when my dad doesn’t know if he’s hungry or thirsty. It makes every day very real.”

As with all Alzheimer’s patients, scary situations arise and the reality of the situation is often raw and emotional. Jason manages to keep afloat while growing up a lot faster than his peers. “I feel like I am closer to 35 than 18,” he says. “Support from the Alzheimer’s Association and aid from other caregiver children coping with the disease has offered me a lot of comfort.” Jason has attended a ranch camp twice since his father was diagnosed. This is where he made new connections, supportive friends and where he met his girlfriend, whose father recently passed away with frontotemporal dementia.

Inspired by his father’s strength, Jason become an Alzheimer’s advocate. He has traveled to D.C. alongside his father to ask representatives to make Alzheimer’s a national priority and encourages other young adults to become involved in the fight. He’s learned to “make every single day count.”

Advocating is a passion that requires compassion, much like Jason’s caregiver role. “It is a blessing and a curse,” he says. “I’ve had to figure out who I am quickly, more quickly than my peers. I see the future more clearly, and I’ve learned the advantages of the family unit and how to not take it for granted. Where other people my age are rebelling and turning against their parents, I have learned how to appreciate mine.”

Although Jason feels a strong moral obligation to remain in Indiana to support his dad, he recently enlisted to join the Navy. That isn’t to say that he doesn’t worry about his decision. He does. He worries about the “what ifs.” What might happen when he returns? What if his father doesn’t recognize him?

Like Jason, many caregivers and family members of people diagnosed with Alzheimer’s experiefathers day blog 1nce feelings of guilt. But Jason’s family is encouraging him in his decision and is committed to him pursuing his passions. His father insists that he won’t “weigh Jason down” by insisting that he stay in Indiana. Until Jason leaves for the Navy, he continues to live every day as it comes, taking to heart the many life lessons he is learning from his father — particularly his attitude toward Alzheimer’s. “He decided to step up and fight this disease. He advocates for progress and change and shares his voice on Capitol Hill. I respect my dad so much because of that,” Jason said.

Jason’s work as an advocate is a calling that he plans to continue to pursue beyond his years as a teenage caregiver, because he knows the difference he can make. “Imagine if my situation was your situation. Imagine how helpless you might feel, and how it would make you feel to lose your memory. My family and I advocate for change on the federal level and in our community to change the future for other families. I fight because my dad fights. I fight for those who can’t. Go big or go home.”

About Jason: Jason is sharing his story during Alzheimer’s & Brain Awareness Month in hopes that he can inspire others to get involved with the cause. He currently serves as an Ambassador for the Alzheimer’s Association, recently attending the Alzheimer’s Association Advocacy Forum for the third time. He is also working on launching a dementia website of his own.

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Mar 112014
 

A few weeks ago, I developed a cough. I went to the doctor, they checked everything out and sent me home. But I wasn’t getting better. I started to worry when the cough got really bad and I was having a hard time breathing.

I called my son, who told me that if it didn’t get better, I should go to the emergency room. By three in the afternoon, I was still Cynthia_alz_bloghaving trouble breathing, so I took a cab from my home in a retirement community to the emergency room.

As with most emergency rooms, the waiting room was pretty full. I checked in, waited my turn and was finally called in.

My first stop was a little room where I talked to someone who got all of my billing and insurance information squared away. She asked me if there was anything she should know about my health history.

“Yes,” I said. “I have Alzheimer’s disease, so you might have to explain things more than once and go slow. And if something is really wrong, you will need to call my son to explain everything.”

She responded with, “You sure don’t look like you have Alzheimer’s!”

My next stop was intake, where I encountered the same question – is there anything the nurse should know?

I went through my spiel again, letting the woman know that I have Alzheimer’s disease and may need to hear things more than once and to call my son if there was a very serious or complicated issue. “I can’t believe it. You just don’t look like you have Alzheimer’s!”

Then, the doctor came in. He, too, asked if there was anything he should know about my health history. I told him about my Alzheimer’s and explained that even though I had been a nurse for many years, sometimes I just don’t understand. He said, “You’ve gotta be kidding me! You don’t look like you have Alzheimer’s!”

This conversation was repeated three more times that day – with the respiratory therapist, another nurse and an x-ray technician. Needless to say, having six different health care professionals tell me that I don’t look like I have Alzheimer’s disease was surprising and a bit troubling.

What exactly does someone with Alzheimer’s “look like?” What should I look like? Should I be unresponsive to my surroundings and bed-bound in a nursing home? Should I be incoherent and confused about where I am?

Understand that I was treated with the utmost respect and kindness by everyone in the emergency room, both before and after I told them I had Alzheimer’s disease. They even took an extra step to show me to my taxi back home so that I didn’t get lost along the way. My experience was a positive one – but it is a telling example of how deep stigma runs with this disease.

The fact that even health professionals – who should know more about this disease process than the average person – were surprised by seeing someone with Alzheimer’s who is vibrant, energetic and articulate speaks volumes.

I hope medical professionals at all levels make an effort to better understand what Alzheimer’s disease “looks like.” I hope that people in the early stages of Alzheimer’s share their diagnosis with more people. This disease may be fatal, but it doesn’t start with bed bound patients and utter confusion. It starts with people like me, who have a face, name, opinion and fulfilling life.

During my visit to the emergency room, I had a meaningful conversation with the x-ray technician, who was one of the people who told me I didn’t look like I had Alzheimer’s. Whenever I speak in public or speak as an advocate for Alzheimer’s awareness and the Alzheimer’s Association, I ask people to remember me. But before I could even ask, she said, “I will always remember you. When I am feeling down, I will think of you and of today and I know it will help me.”

It made my day to know I could positively influence someone’s life – and it keeps me motivated to advocate and share my story so we can end the stigma associated with this terrible disease.

 

About the blog authorCynthia Guzman is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG) and is actively involved with the Northern California and Northern Nevada Chapter of the Alzheimer’s Association. As an Advisor, Cynthia wants to do her part by spreading awareness about Alzheimer’s and reducing the stigma attached to the disease. Cynthia believes in early diagnosis and the importance of educating physicians on the best ways to support an individual throughout the diagnostic process. Cynthia lives in Napa, California. She has three children and three grandchildren.

This post originally appeared on www.alzheimersblog.org.

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Dec 232013
 

treeI miss Jim so much during Christmas time. I miss our discussions about what to get the kids and our families. I miss sitting next to our tree, looking at the lights and sharing quiet time together. I miss feeling excited, wondering what thoughtful present he placed under the tree. I miss singing songs, watching movies and so much more. Jim still throws out a hum (actually, lots of hums) during Christmas songs, but it isn’t the same. He is here, but he isn’t here.

Ever since I moved out into this great big world on my own, I have sent out cards every December. Except for last year. And the year before. And the two years before that. I haven’t had the energy. I haven’t felt jolly. And what would I put in there? Oh, life is great. We are watching Jim progress with Alzheimer’s and have no idea what our life will be like next year at this time. Merry Christmas.

The holidays are hard for Alzheimer’s families. I know this, yet I try to think that our holiday will be different. Last year, I was talking to a good friend and lamenting that I didn’t know if it would be our last “good” Christmas with Jim and that I needed to make it special. She very sternly replied, “You don’t know what is going to happen. This may be the best Christmas ever and next year may be even better. You need to just enjoy this Christmas.” It turns out, she was right! Last year we had an awesome Christmas. We probably had the best one ever.

I approached this year with similar hopes. But when I left for work on a recent Monday, I asked Jim to put the greenery and lights up on the porch, as he has done for as long as we have been together. While I was in a lunch meeting, Jim called. I heard him crying. “I just can’t do it. I can’t put them up.”  Why? Why did I ask him to do this? Why do we have to decorate our house for Christmas? Why can’t I find the time to do everything? Why? Why? Why?

I told him I was sorry, that I should have never asked him to do it. There really is this very fine line to walk. I have to give Jim tasks to do, yet I must make sure they are tasks he is able to do. Sometimes the “simplest” thing he did just a week ago seems foreign to him. Sometimes I forget he can’t do it. On top of that, Jim is still aware of what he isn’t able to do and it is a very hard pill for him to swallow.

Despite these moments – and the moments I feel the sadness and isolation this disease brings, I am still thankful for many things. I start with being thankful for my children. They are what motivates me, inspires me and keeps me smiling. I am thankful that I have Jim as my husband. He has been the most wonderful man, father and friend. Each day he continues to lead our family by example. He shows us all how to put our big pants on, live each day as it comes and do the best you can. He has no expectations, so he is never disappointed. That is all any of us can ask or hope for, no matter what our situation.

I am also thankful to all of those who donate time, money and energy to finding a cure to this horrible disease that has taken over my life and so many others’ lives. Thank you for being so generous and for believing that one day, we will all feel a sense of accomplishment. We will feel we were part of the solution.

Until that day, we will carry on our traditions for as long as we can. We may start new ones. We may lose a few along the way. But we will do it with each other. I love my family. I am grateful we have so much, when so many are in need. I am grateful it has been such a great year. I am grateful for all I have—and yet I still feel sad.

I miss Jim.

missingjim

About the blog author: Karen Garner is a mother of a 9-year-old son and a 12-year-old daughter.  She works full time and is care partner for her husband, Jim, who is living with younger-onset Alzheimer’s. She shares her journey through her blog, Missing Jim.

 

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Dec 102013
 
warrior

I love participating in the annual Walks to End Alzheimer’s, but let’s face it – walking can be boring. For my first Walk to End Alzheimer’s in 2012, I raised more than $1,500. One year later, my donations netted nearly $9,000 for my local Alzheimer’s Association through a fun and creative tribute to my brother, Kevin.

Prior to the summer of 2013, my summer hobby became the campaign “Bobbleheads United to End Alzheimer’s.” I collected my own and also asked people to send me their stadium bobbleheads; for each bobblehead I received, I would in turn make a donation to my Walk effort. I was in the midst of my 2012 tour when I received the news that my brother had passed away.

Distance had unfortunately separated us for much of our adult lives, and I never had the experience of riding the rails with my brother as an adult. Kevin would travel the world seeking thrills on all kinds of roller coasters, from the modern steel hyper-coasters of today to classic “woodies” from the mid to late 20th century. At Kevin’s memorial service, the topic of coasters was discussed at length. It was at that time that I decided that in my bobblehead chasing travels, I would ride as many roller coasters as I could find along the way as a tribute to Kevin.  As fall and winter set in, a proverbial light bulb was lit. What if, in preparation for the 2013 Walk, I set out to ride as many roller coasters as I could, and see if friends and family would pledge a per-ride donation? I began planning my new summer tour and fundraising effort: “Roller Coaster Crawls to End Alzheimer’s.”

Laying Tracks

I set a goal of 100 roller coaster rides in 100 days from Memorial Day to Labor Day. I hit every theme park within a six-hour drive from Rochester NY, from the big corporate parks to the smaller, family-run parks. I purchased season passes to several theme parks, but I quickly came to the realization that this might be a costly endeavor. My friend Marian had experience in professional fundraising, and she helped me contact the smaller parks to spread my mission. She even established a great relationship with Six Flags Great Escape. Meanwhile, the pledges started rolling in. My friends stepped up to the plate, with pledges ranging from 25¢ to $2.00 per ride! I had to get over any fears I may have had, suck it up, and ride.

On each ride, my brother rode with me in spirit. In fact, Kevin’s Facebook account was still active for some time after his passing, so I was actually able to “tag” him as being with me on virtually every ride. Although this was mostly a symbolic action, there were several instances throughout my travels that I know he was with me… if not physically, spiritually.

Media Attention

As the tour began to pick up speed, Marian and I had reached out to media in the cities I would be visiting. A local news outlet expressed interest in my mission, and reporter Seth Voorhees and I spent much of the day filming my rides and talking about my brother, his plight and the scourge that is Alzheimer’s. The 2 ½ minute piece they aired was a hit! Calls began coming in with new pledges and well wishes. The story caught the eye of Sal Fantauzzo, founder of Salvatore’s Old Fashioned Pizzeria, a large chain of pizzerias in the greater Rochester region. Sal was so touched by the story that he offered to match all of my pledges at the end of the tour. The news story and matching donations from Salvatore’s provided a catalyst for even more growth, and I was back on the road again.

Fearless Fun

I plotted out the rest of the tour, conveniently scheduling ride #100 for August 21st on Coney Island’s “Cyclone”. This ride would be especially significant as not only would it be the ride that fulfilled my goal of 100 rides, but it was also the last coaster Kevin rode before his passing. In the end, I actually rode 122 roller coasters in as many days, including:

  • Seabreeze Amusement Park on the shores of Lake Ontario in Rochester
  • Six Flags New England on Memorial Day weekend
  • Waldameer Park in Erie, PA. When people ask “What was your favorite roller coaster of the tour?” I immediately respond: “Ravine Flyer II at Waldameer Park.”
  • Rye Playland, Knoebel’s Amusement Park, DelGrosso’s, Six Flags Great Adventure
  • Lakemont Park, a small amusement park with the prestige of having the “Oldest Operating Roller Coaster in the World”, Leap the Dips, a landmark dating back to 1902
  • Lake Compounce and Quassy Amusement Park
  • Morey’s Piers in the Wildwoods, NJ, boasting three ocean side piers of entertainment
  • Sylvan Beach, where I enjoyed the “Galaxi”  for ride #95

Hershey Park is where I had the strongest feeling that Kevin was accompanying me on the tour. He was passionate about the Grateful Dead, so it seemed like more than coincidence that the music in the park that day was Jerry Garcia material seemingly direct from his collection.

The Cause

My pledges were all based on the “honor system”; I cannot tell you how impressed I am with my donors for their willingness to fulfill their pledges. Some apologized for not contributing “enough” due to their particular situations. I assured these folks that any amount would be appreciated by those facing Alzheimer’s.

This cause is passionately burned into my personality now. I don’t think that I shall ever stop raising funds and awareness for this cause. The things I’ve learned, the people I’ve met and the places I’ve seen are easily the best things I’ve ever done in my 52 years on this earth. But I still miss my brother. A lot…

What Next?

How about a 16-hour roller coaster marathon for Alzheimer’s Association The Longest Day on  June 21, 2014? Sure… why not? Two of my planned stops are Cedar Point in Ohio and Six Flags Great America in Illinois for the new coaster “Goliath”!

Did you Walk to End Alzheimer’s in 2013? Leave a comment about your experience and why you Walk – or ride, like Michael!

About the blog author: Michael joined more than 400,000 others by Walking to End Alzheimer’s in 2013. He walked in memory of his brother Kevin J. Moran who succumbed to early on-set Alzheimer’s at age 54 after a three-year battle with the disease. A card-carrying ACE (American Coaster Enthusiasts) member, fun-loving Kevin traveled the world riding new and vintage rollercoasters, and Michael followed suit. Share your stories from the 2013 Walk season on Facebook and Twitter and on ALZConnected.

 

Sep 242013
 
single flower walk

The first change I noticed in my dad was his inability to write out checks.  I stopped by his office one day, and he was sitting at his desk with the checkbook open.  Several balled-up checks were scattered on his desk. He was slow to speak, but finally admitted that he could not write out the check correctly. On one check, he had transposed the numbers for the amount to be paid.  On another check, he had attempted to write his name on the “payee” line, but the scrawl did not look like his signature.  He was so frustrated, confused and scared. This was so unlike him—a man who had always been so confident, organized and in control. This was just the beginning of many changes in his personality and behavior.

My dad had Alzheimer’s, a progressive disease that robs the mind. It also breaks the hearts of family members who helplessly watch as their loved one slips away.

Fred Is Not ForgottenAs time went on, my dad, who had always been an impeccable dresser, no longer seemed to care about his appearance. He would mix prints with plaids, and chose to wear the same red sweater every day, even though he had a closet full of clothes. Eventually, he had to go into a 24-hour nursing facility, as he would wander at all times of night and became combative.

It was devastating for family and friends when we realized that he had slipped into his own little, confused world and did not recognize any of us. At times he mistook me for his sister or his wife.  Later, he ignored everyone but my brother, and their discussions were limited to talking about the family business. Eventually, all of his visitors were greeted by a blank stare.  As his journey came to an end, his muscles became rigid.  He could no longer sit up or walk.  He died in a fetal position, three years after the initial diagnosis.

His bout with the disease was relatively short in comparison to that of many victims, but his condition, decline and death have had a lasting effect on me. Twenty-five years later, every time I forget a word needed to complete a sentence or forget where I put something, I fear I may have the same fate.  Since his death, more attention has been given to Alzheimer’s; however, more attention is needed. It is now the sixth leading cause of death and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed.

On October 13, 2013, I will Walk to End Alzheimer’s at Tower City Center in Cleveland, Ohio.

I will walk in memory of my dad, Fred Grair, Sr., and other family members who have been affected by Alzheimer’s.

walk to end crowd

I will walk to allay my fear of contracting the disease.

I will walk on behalf of the more than 5 million Americans who are living with Alzheimer’s.

I will walk to raise money for Alzheimer’s awareness, support, care and research.

I will walk for you.

Today, more than half of all Americans know someone with Alzheimer’s.  If you have not been impacted in some one by this terrible disease, consider yourself fortunate.  Soon, no one will be untouched.  Please walk with me to end Alzheimer’s.

About the blog author:  Stephanie Grair Ashford is steering committee member and team captain for the 2013 Walk to End Alzheimer’s in Downtown Cleveland, Ohio.  You can donate to her team, Fred’s Not Forgotten.

This column originally appeared in the Sun News.

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