Jun 272017
 

On more than one occasion, when I was a young boy, my grandmother roamed the streets of Washington, D.C. at night. One night she was picked up by the police, and ultimately placed in a home with others “like her.” Back then, these types of events were attributed to old age and senility. 

Today, my mother is living with Alzheimer’s disease – just like my aunt and grandmother. And at the age of 66, I am living with mild cognitive impairment (MCI).

Looking back, I realize that I had had symptoms for many years. There was the time I bought multiple cartons of milk in one shopping trip. Often, I’d leave my phone on top of my car and drive away. I started forgetting social dates and critical appointments.

I spent 20 years as an international flight attendant, with a revolving door of co-workers, so the seriousness of these events was often dismissed by people as carelessness, or worse, went unnoticed. I lived alone, and I didn’t have family and friends around often enough to notice any changes in my daily life. And because of my lifestyle, it was so difficult for me to come to grips with the possibility of losing my independence.

Life changed once I reached out to the Alzheimer’s Association for information and support; I never could have imagined how life-changing that one phone call would be! In the Association, I found all I was looking for and more, including the inspiration to share my voice.

Today, I focus on maintaining my independence as much as possible, and I’ve found creative and safe ways to continue enjoying some of my favorite activities. While I am retired from a long career of serving others, I now serve an even greater purpose in life: I have “re-imagined” myself as an Alzheimer’s advocate, serving as a member of the Association’s National Early-Stage Advisory Group for the past year.

When speaking openly about my diagnosis, the first response I typically receive is: “I’m so sorry!” Understandably, people don’t know what to say. But my advice is this: “Don’t say anything – just listen.” Listen to my thoughts, concerns and funny stories. Listen to my hopes and fears. Listen to how this diagnosis has affected me — for worse and for better. Keep listening, and keep sharing stories. They truly are the most powerful weapon we have in the fight against this disease.

Even though I have MCI, I’m still living. I’m just living a new chapter of my life – and my story is not over yet.

About the Author: Brian Van Buren is raising awareness of Alzheimer’s disease as a member of the Alzheimer’s Association National Early-Stage Advisory Group (ESAG).

 
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Jun 212017
 

The Longest Day is finally here and my excitement is at fever pitch! All of the planning and hard work has come together, and I know it will be another fun and successful event. My team is certainly ready to make the most of this special day.

Why do I fight Alzheimer’s on The Longest Day, year after year? It is because my wonderful husband Warren is courageously living with Alzheimer’s.

This is my fourth year as team captain and I’m proud to say that each year has gotten better than the year before. In my “rookie” year, my team raised $12,000, and in my second year of participation, I added an auction and raffle to my event and raised $34,000. Last year was a big year for my team, equaling a whopping $43,000 in donations!

I am proud and truly astonished by all my team has accomplished, and today is the day to celebrate. We all know that in order to find a cure and support families facing this disease, we need more funding, so every dollar we raise is a step closer. Knowing we are a part of that drives us even more!

I feel blessed to be part of the St. Louis Bridge Center, surrounded by hundreds of people that support me and care about this cause. Besides playing bridge all day and evening, we will have a silent auction and multiple raffles. There will also be t-shirts available for sale that will help all of us “go purple!” We have raised more than $25,000 so far and look forward to adding much more throughout the day today.

There are a lot of longest days in the life of a caregiver; there are days when I am exhausted and wonder how I’m going to get through this experience. But then I remember how much Warren needs me. Thankfully our family, friends and our support group are a major part of helping me cope. They help make the longest days seem a little less long – and days like today a lot more fun!

Participating in The Longest Day is my way of saying “I love you, Warren” while helping the millions of others that are living and struggling with this disease. I wish the best of luck to everyone celebrating today, no matter how you are participating. Have fun, and remember: the fight must go on!

 

About the Author: Linda Powers and her family and friends are participating in Alzheimer’s Association The Longest Day®. Linda is captain of the St. Louis Bridge Center team and plays as a member of the American Contract Bridge League (ACBL). Click here to visit Linda’s team page.

Jun 202017
 

Today we have honored the life of my aunt Jeanine Brown.

This incredible woman was responsible for my first-ever public dance moment. It was her wedding reception, there was a Soul Train dance line…and I was paired up with my grandmother.  Needless to say, it was quite the night!

Aunt Jeanine was far too young to have been taken from us by Alzheimer’s disease this past January. Not long after her passing, my wife Daisey struck up a conversation with one of our long-time dance students at the Arthur Murray Dance Studios; we learned that she was a board member of the Northern California and Northern Nevada Chapter of the Alzheimer’s Association. She told us about how the Association is leading the fight to end Alzheimer’s.

As business owners, making a donation here and there of course seems like the right thing to do.  But to us – with our close connection to Alzheimer’s disease – that simply didn’t feel like it was enough. We needed to do more. That is how we became participants in The Longest Day, which provides us an opportunity to do what we love – DANCE! – and raise funds and awareness to fight this disease at the same time.  It feels like the perfect match.

My wife and I are competitive about the things we’re passionate about, and we’re very passionate about The Longest Day. Being affected by the disease firsthand is why we decided to lead the charge within our dance community, and our community has responded! Today, members of our staff have each donated the proceeds from the dance classes they love to teach, and everyone around us is showing their love. We have honored Jeanine and everyone in the Arthur Murray community touched by this disease – and millions more.

The thought that people around the world are joining together today to make sure that this generation will be the last generation affected by Alzheimer’s is astounding. For our part, we have danced all types of ballroom dance to support Jeanine. While it isn’t quite the same as that Soul Train line I joined so many years ago, we are all dancing with that same kind of joy in our hearts.

This may be our first year participating in The Longest Day – but it is the first of many more to come!

About the Author:  Chris Lynam, his wife Daisey and family and friends of the Arthur Murray Dance Studio are participating in Alzheimer’s Association The Longest Day® on June 21, 2017, to raise awareness and funds for Alzheimer’s care, support and research. Chris and Daisey are captains of Team Arthur Murray in Redwood City, California. To date, the Arthur Murray group has raised over $40,000 for The Longest Day.

Jun 192017
 

Our Longest Day is spent playing golf, my husband Mickey’s favorite sport, which he grew up enjoying with his dad.

In 2013, at age 55, Mickey was diagnosed with early-onset (also known as younger-onset) Alzheimer’s disease. Our family wanted to find a way to fight back, and we wanted to include Mickey in whatever we did. A golf tournament in his honor on The Longest Day was the best – and most obvious – choice! 

Today marks our third annual “Mickey’s Mania” Golf Classic. Our friends will come from far (and not so far) to join us for a great day of fun, laughter, food and libations. Everyone is here because they know that even after Mickey is gone, there will be people who need caregiver support and resources from the Alzheimer’s Association – and we raise funds and awareness in honor of his amazing fight.

We started the day by setting up signs acknowledging our donors and supporters; as the players make their way through the 18 holes, they will see all the people who were crucial to putting this event together – and there are so many.

Players arrived bright and early at 7 a.m. to pick up their goody bags – of course wearing hats monogrammed with our “Mickey’s Mania” logo – and then enjoyed a breakfast assortment of traditional San Antonio breakfast tacos; these delicious essentials are crucial to powering through the long day ahead! As the players lined up, I reminded them that we are here to rejoice in life – making this day, The Longest Day, the best day ever.

Mickey has almost been in tears as he greets old friends he hasn’t seen in some time, along with people we don’t even know who showed up to play golf today and support the fight.  He asks: “Is this all for me?!”  I tell him yes, it is – for him and the millions of others living with Alzheimer’s disease.

As each team finishes their round, they make their way to the silent auction. Then The Kimberly Dunn Band entertains us through lunch, as they’ve done for the past two years.

Shortly, the top three teams will be awarded prizes and the winning team will be awarded the coveted monogrammed “Purple Jacket”, much in the style of the green Master’s tournament jacket given to the pros. As the players eat, our family will stop at each table, thanking everyone for coming. We are already a little sunburned, but it has all been worth it!

My favorite part of The Longest Day is driving in the golf cart and seeing each team as they play. Some people have run up to hug me or introduce themselves, and as always, this day will result in so many wonderful memories and photos. Mickey really enjoys looking at the pictures from the last two years of the event on our wall at home even though he can’t remember the celebrations. I am lucky to have my memories from each of those amazing days.

We won’t have the final numbers for few days, but our hope is always to raise more than the previous year. To date, our efforts have raised more than $50,000 for the Alzheimer’s Association; we hope that the numbers this year will exceed that, making it a record year for Mickey’s Mania.

Alzheimer’s is a cruel disease, and we wonder if Mickey will be here for next year’s tournament, which we are already in the midst of planning. As scary as that thought is, what we don’t have to wonder about is our commitment to this cause. Our family will continue to raise funds until our task is finished, and a cure is found – eradicating Alzheimer’s disease for good.

About the Author: Together with her family and friends, Jane Wakely is participating in Alzheimer’s Association The Longest Day® on June 21, 2017, to raise awareness and funds for Alzheimer’s care, support and research. You can visit Jane’s team page here.

Jun 132017
 

The fact that my dad even knows who Matt is feels quite incredible. My dad was diagnosed with early-onset Alzheimer’s disease 11 years ago, and my husband Matt came into our lives just three years ago.

What makes my heart soar is how they’ve become best buddies. My dad still lives at home with my mom, his soulmate turned full-time caregiver. While he cannot be left alone, dress himself, buckle his seatbelt, or even open the door, when Matt is around, his former self shines through. The two are downright squirrely together!

When Matt and I got engaged, we decided to have a small ceremony, because we were worried about how my dad would handle a large crowd. While wedding planning, Matt’s only requests included a canoe full of beer and a food truck parked in the driveway.  The only “must” on my list was for my dad to walk me down the aisle, and that I would wear red Converse chucks since my dad also rocked a pair when he married my mom 33 years earlier.

We invited 80 guests to the ceremony. Locked arm-in-arm with my dad – with the biggest smile I’ve ever had in my life – I remember hearing my cue: “A Thousand Years” by The Piano Guys. This was it. The big moment.

The chapel doors opened, and I locked eyes with the most handsome groom I’ve ever seen in my life. But then I felt my dad start to tense up.  Even though there was a sea of familiar faces smiling brightly at us, my dad didn’t recognize a single face.

“Dad,” I said with my biggest, reassuring smile, “do you see Matt down there?” I pointed down the aisle. “Today’s my wedding day; you just need to walk me down this aisle, and give me away to Matt. We’ve got this.”

Ever so slowly he began to shuffle down the aisle on our way to my groom. At this point, everyone was crying and smiling. The song may have repeated, but I can’t be sure.

When we got to the front of the church, I gave my dad a huge hug; we had made it!  With lots of happy tears in her eyes, my mom joined us to help my dad to his seat. Slowly, with a wink, I said: “Do you see mom? You’re going to go sit next to her while I marry this kid.” Choking back tears, my dad said, “I love you. I just love you so much!” The day was about as close to perfect as they come.

Alzheimer’s disease has taught me so much about living life to the fullest and cherishing the time I have with my family. Matt is such a special part of our family now, and I know my dad would have chosen no one else to be by our side as we battle this terrible disease. Recently, my dad asked if I was “still hanging out with that astronaut guy.” I replied, “Dad, do you mean Matt? He’s a pilot, but yes, he’s my husband, so he’s stuck with me!”

My dad comes to hang out with Matt and I every Thursday, even sleeping over, to give my mom a much-needed break. The memories I made on that milestone that was our wedding day continue to fuel my fight to find a cure…but our “Thursdate” adventures are pretty darn special too. Happy Father’s Day, Dad.

About the Author: As a member of the Minnesota-North Dakota chapter’s young professionals group and Blondes vs. Brunettes and as an Alzheimer’s Congressional Team member, Chloe Misner has been a powerful motivator for her peers in the fight to end Alzheimer’s.

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Jun 092017
 

For a while now, I’ve been worried about memory lapses. About big vacant holes where my memories should live.

For example, I completely forgot that one of my best friends growing up also worked for me at the school newspaper at Penn State. I all too often looked at my sister with blank stares when she described her memories of our family life; I just don’t remember the stories.

But I didn’t rush off for testing because I didn’t think anything could be done about my memory. And besides, I’m only in my mid-50s and that is awfully young for Alzheimer’s or dementia, isn’t it?

About a year ago, my sister saw a research study notice for a drug that has shown some success in slowing down the progression of memory loss. I took the online test and “passed” on to a telephone conversation. I “passed” that, too, and soon found myself in a medical research office in suburban New Jersey – giving lots of blood, having an EKG and being poked and prodded by a neurologist.

The key test was the RBANS (Repeatable Battery for Neuropsychological Status), a series of mini-memory and cognitive tasks. I needed to score an 85 or less to get into the trial; the research coordinator told me that, based on our conversation, she really didn’t expect me to “pass.”

She then came back with the news that I scored a 71, much lower than the number needed to qualify for the trial. Soon I was meeting with the director of research and hearing the news that more testing was needed, but that it was very likely that something serious was wrong. A subsequent PET scan confirmed it: I do indeed have younger-onset Alzheimer’s.

Am I terrified? Absolutely. More than a bit numb? Yep. Determined to do what I can for myself and for others? Even more so.

I’m told that my level of memory loss and cognitive impairment is considered mild to moderate. I’m proudly participating in a clinical trial for a drug which has shown promise in slowing the progression of the disease, particularly in folks in the early stages of Alzheimer’s.

In addition to participating in the clinical trial, I’m also joining others in the Alzheimer’s community to chronicle this disease and my fight against it. My first article appeared in today’s edition of The New York Times, and I’m hopeful that the paper will periodically publish more pieces about my experiences and my fight.

Most importantly, I’m reaching out to others with the hope that it will help me overcome the overwhelming wave of fear that sometimes hits me. For example, I was just chosen to serve on the Alzheimer’s Association National Early Stage Advisory Group, a group composed of people in the early stages of Alzheimer’s disease who help raise awareness and advocate for others living with dementia.

I want to learn as much as possible so I can become an effective advocate. Yes, I have a story to tell, but these days – to be as effective as possible – we need to share the facts and find ways to reach as many people as we can.

I’m going to fight, just like I fought for our civil liberties and the environment throughout my career. Just like I’ve fought diabetes and the clinical depression that I’ve lived with for most of my life.

At the end of the day, I hope to be the same guy I’ve been for quite some time. Perhaps I’m a bit more forgetful about some things – remembering names, handling simple math and figuring out directions are increasingly difficult – but I’m already more willing to slow down and appreciate the world around me. And that’s not such a bad thing.

About the Author: After graduating from Penn State University, Phil Gutis started at The New York Times as a copy boy and earned promotion through the clerical ranks until he was selected as a reporter trainee and then full-time reporter. After journalism, Phil transitioned into advocacy and for several decades established and managed multi-million dollar communications programs for large advocacy organizations including the Natural Resources Defense Council and the American Civil Liberties Union. Phil currently manages the Prallsville Mills, an early industrial village along the Delaware River in Stockton, NJ.

 

 

Jun 022017
 

My husband, country music star Glen Campbell, was diagnosed with Alzheimer’s in 2011. In 2014, the documentary film “Glen Campbell: I’ll Be Me” shared Glen’s 151-concert “Goodbye Tour” with millions of people. It was empowering to share our family’s story with the world, but it was just the beginning of our continuing journey with this devastating disease.

Throughout his life, Glen demonstrated how the power of love, laughter, friendship, faith and music helped him overcome many obstacles. I am determined to continue sharing his message with the world through my website, www.CareLiving.org, where others can find hope, humor and direction from my own experiences as well as through guest articles and posts from doctors, specialists, friends and fellow caregivers.

Don’t Become The Second Victim

Beyond the inherent depression of caregiving, it can also be financially and emotionally devastating for many families. Husbands, wives and children often become the second victim of the disease. Although the experience can strain a family in many ways, it can also be a blessing when you change your perspective and search for hope and inspiration amid the sorrow.

Alzheimer’s has opened up a whole world of new friendships and peers for me. I’ve built up a support group of caregivers who have become some of my best friends and who help me get through these tough times with positivity and determination. I’ve also been introduced to doctors and experts whose tireless work and research provide the much-needed optimism that a cure is on the horizon.

The Alzheimer’s Association’s website was the first place I went to for information when Glen was diagnosed. I was at home with nowhere to turn when I opened up my computer and went to Google to search for help and learn more about the disease. Finding www.alz.org was a godsend; I think it’s one of the best web resources out there, and I am so happy to have found it.

Music City Cares

Our participation within the Nashville music community, as well as with the Alzheimer’s community, has created a perfect pairing leading up to the Disco Party. Thanks to Brad Paisley and Kimberly Williams-Paisley, this event will be a wonderful opportunity to raise awareness of both Alzheimer’s and the plight of caregivers. Brad appeared in “I’ll Be Me,” and I was deeply inspired by Kimberly Williams-Paisley’s book about her mother who died of Alzheimer’s. They both care so much about this cause, and we all want to support the efforts of the Alzheimer’s Association.

If you’ve been affected by Alzheimer’s, help us “turn the beat around” at Nashville’s Wildhorse Saloon on Sunday, June 4 to help raise funds for the Alzheimer’s Association and to see what happens when disco meets country!

 

About the Author: Kim Campbell has been married to country/pop star Glen Campbell for 35 years. As a devoted mother, wife and caregiver, Kim has made it her mission to improve the quality of life for people with dementia and their families. In 2016, she launched www.CareLiving.org, a website to provide information, inspiration and hope to caregivers.

 

 

May 312017
 

Known for her role as Annie Banks in the 1991 Steve Martin film “Father of the Bride” (with enviable, perfect hair), the television series “Nashville” and wife of country music superstar Brad Paisley, Kimberly Williams-Paisley is the author of “Where the Light Gets In: Losing My Mother Only to Find Her Again,” which chronicles her mother Linda’s battle with Alzheimer’s. Linda passed away in November of last year.

Now available in paperback, Kimberly’s book shines a light on the stigma of dementia and the unbreakable bond shared between mothers and daughters. We spoke to Kimberly about the book and her next project – a disco fundraiser benefiting the Alzheimer’s Association.

Congratulations on your book going into paperback, Kimberly. Why did you decide to share your story? What made you want to be open and honest about dementia with the public?

In 2006, my family learned that my mom, then 62, had primary progressive aphasia, a rare form of dementia (which we later found out was Alzheimer’s disease). This book follows the journey we took – the mistakes, the good times, and the bad – and lays it out for people to see.

One of the biggest mistakes we made when Mom was diagnosed is that we listened to her request for secrecy. As Mom became less aware and her dementia progressed, I felt a strong need to tell my story. I also wanted to encourage others in similar situations to tell theirs.

The book was born out of a magazine piece I wrote for Redbook magazine, and the response to our story was astonishing. It was also very therapeutic for me to share it. I knew I wanted to dive deeper into the journey. Writing helped me understand what happened.

Can you also speak to the significance of the book’s title?

The title came from a lyric from the Leonard Cohen song “Anthem,” and it became my anthem while I was writing the book:

“Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything

That’s how the light gets in”

I wrote it down and pasted it on my mirror. One morning I woke up and saw it there, and I realized how rich my journey with my mother had been – so many blessings, so many challenges. Above all, I wanted the title of the book to focus on the silver lining, the hope.  “Where the Light Gets In” popped into my head, and I thought, “Perfect.”

Do you consider the book a form of advocacy?

Definitely. I wanted to tell our personal story because it helps people understand what the disease truly is – complex, sad, heartbreaking – but also I wanted to highlight what lessons can be learned when you go on a journey you haven’t chosen to take.

I hope people will fall in love with my mom the way I loved her. My mother was not her disease. She was an exuberant, passionate, empathetic, funny woman who just happened to have this thing happen to her that we couldn’t fix. I wanted to share her light, her heart and her passion for her family with the world. I hope the book helps people understand that it’s okay to be vulnerable, open and honest about what happens when someone you love has dementia.

I am so glad the Alzheimer’s Association exists. This disease has many facets to it, and families are faced with an array of complicated challenges. We didn’t get much help in the beginning because my mom didn’t want us to, but I wish we had. Alz.org has a wealth of information about Alzheimer’s and other dementias. The Association’s free 24-hour caregiver helpline connects people to local resources wherever they are. Once we started reaching out, I felt like I’d gained a whole new extended family.

What do you think of the stigma surrounding a dementia diagnosis?

My mother didn’t want people to think she wasn’t smart, or to pity her because of her diagnosis. (Linda had worked as a foreign correspondent and became a major gifts fundraiser for the Michael J. Fox Foundation for Parkinson’s Research.) To be honest, she was embarrassed. I think that is common for people who are starting to lose some brain function, realizing they aren’t as “sharp” as they once were. I imagine it’s terrifying, and I know it’s common for people to want to try to hide the truth.

What have you learned from your husband and children in coping with dementia?

My kids taught me about accepting my mom as a new person, because they were able to do that so
effortlessly. I think kids can often live moment to moment similarly to the way someone with dementia can.

I have a great deal of gratitude for my husband, because not only did he welcome my challenging family with open arms, he also helped out financially. Dementia is an expensive disease, often requiring 24/7 attention. Mom wouldn’t have gotten the care she got if it weren’t for Brad’s assistance.

On June 4th, you will be co-hosting a Disco Party with radio host Blair Garner in Nashville benefiting the Alzheimer’s Association. Your husband Brad Paisley and other top musical artists will perform disco hits from the 1970s and 1980s. What can you tell us about the event?

We wanted it to be a lot of fun, reviving an annual disco party Blair used to throw years ago. My mom and I often connected through music, and I know that a lot of people with dementia have a similar experience, so it is fitting that we are having this type of event. I hope we bring fresh awareness to the cause in a city that has made music its centerpiece.

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May 162017
 

The Longest Day is all about love! On the summer solstice, people select any activity they love — or an activity loved by those affected by Alzheimer’s disease — to help raise funds and awareness to help end Alzheimer’s.

Two sisters from Decorah, Iowa are fighting to end Alzheimer’s  on behalf of their father Dale, who was diagnosed with early-onset Alzheimer’s at age 57. Most of Brecka and Shanna’s The Longest Day teammates are honoring or remembering someone special to them, as all of them have been affected by Alzheimer’s disease in one way or another. Although the sisters know that there won’t be a cure in their dad’s lifetime, they are fighting to make sure that there is a cure in theirs!

Joining the fight

“Dad is an avid cyclist and I have always enjoyed riding with him and his friends. The Longest Day allows us to do something he loves while honoring him and raising funds to take down Alzheimer’s – what could be better?!” says Shanna.

“We don’t do anything less than 100%, so we loved the freedom to go as big as our dreams by picking a meaningful activity and a time that works with our schedules,” Brecka says on The Longest Day event’s flexibility.


Preparing for the day-of

The sisters had an easy time choosing the activity of cycling. “Dad once completed a triple century (300 miles!) in a single day. He also was one of the leaders in a fundraising project aiming to extend a local bike trail,” says Brecka beams. “It only seems fitting to start the event on the piece of the trail he helped to make possible. We’re also encouraging out-of-towners to ride in their own cities; people who don’t bike can get involved by walking or jogging!”

Shanna knows that planning is key to their event’s success. “We have been reaching out to everyone we know to join in the fight.  We have gotten a lot of community and business support and hope to do other mini-fundraisers to help us reach our fundraising goal.

“The day-of is going to be EPIC.  We are planning an hour for both kids and teens and businesses are taking an hour to honor and remember those impacted by Alzheimer’s. We also have a pretty fantastic after party planned. It will cap off 24 hours of kicking Alzheimer’s in the butt!”


Their longest days

Despite all of their excitement about the day itself, it has been a rough road for both sisters and their family. Brecka experienced her longest moments in the space between when she found out her dad had Alzheimer’s and in supporting him as he told her other sisters of his diagnosis. “Not being able to “fix it” was a terrible feeling,” she says.

For Shanna, there have been so many heart-wrenching moments. “The hardest part is seeing my dad decline, because he knows that he is declining.  My little sister is still in high school and could lose Dad before she graduates – that is one of the worst parts. And finally, knowing that my kids, ages 3 yearsand 3months, have very limited time with their grandpa…it just breaks my heart.”

Both sisters agree – being able to take control of their activity and plans for The Longest Day is empowering and helps them feel like part of the fight to end Alzheimer’s. It is a way for them to leave their mark and honor their father and his legacy. “Finding a cure has to become everyone’s business, or it’s going to become everyone’s big problem really soon,” says Brecka.

In it together

The sisters aren’t slowing down, because they know that no one can fight this disease alone. “As the population ages, and advances in medicine help people live longer, a greater percentage of people will have Alzheimer’s or other dementias. Our country doesn’t have the infrastructure or resources to care for the number of people who will have dementia – but otherwise be reasonably healthy – in the years to come. We won’t be able to cover the costs: physically, financially or emotionally. We have to find a cure,” says Brecka.

Shanna admits that she learned about Alzheimer’s the hard way: by seeing her dad’s fight. “I am embarrassed to admit I had a lot of misconceptions about Alzheimer’s before Dad was diagnosed.  I didn’t realize how young it can hit, and how great of an impact it has on the person diagnosed, not to mention friends and family.  It is a heartbreaking disease, and sadly it is one that will impact us all.”

Making sour moments sweeter

Shanna and Brecka’s team has raised $4,517 to date, but their goal is $24,000 – $1,000 for each hour in the day. “We started by creating a presence on social media and have been regularly sharing a lot of video content,” says Brecka.

“We’re in the early phases of getting support from local businesses and schools and have several businesses lined up to hold their own fundraisers for the event. We’re well on our way!” adds Shanna.

“There is a quote from one of my favorite television shows, “This is Us,” that has inspired me along our fundraising journey,” says Shanna. “A character said: ‘There’s no lemon so sour that you can’t make something resembling lemonade.’

“Our dad’s diagnosis was one of life’s most sour lemons. Finding a cure…now that’s our lemonade.”

About Shanna and Brecka: The sisters joined The Longest Day as team Trails for Dale to celebrate and honor their dad, Dale Putnam, who was diagnosed with early-onset Alzheimer’s disease. Although there is no cure for him, or anyone fighting Alzheimer’s today, he’s an active participant in Alzheimer’s clinical trials in hopes that one day there will be a cure for someone else. Shanna and Brecka want to help make his dream a reality.  Visit their team page here.

 

 

May 112017
 

Winning a gold medal last August in the 2016 Olympics is a moment I will never forget. I wanted to go home that night. All I could think was: “I need to get back to Arkansas. I need to fly home to see my mom.” Of course there were two more weeks to spend in Rio after my event – and the closing ceremonies to attend – but all I could think about was being at home with Mom. Everything I’ve done has been for her.

My mom was diagnosed with Alzheimer’s 11 years ago, when I was 17 years old. I’m the youngest of six kids, and she always did everything for the entire family, as so many mothers do. She cooked and cleaned and was always ironing and folding my shirts for me. She showed her love through all of those everyday things she did for all of us. My father – who is now her caregiver – was working long hours, so she was the one raising me every day.

I remember the signs.

I remember her cooking meals and then forgetting to finish preparing them. Sometimes she would leave dinner behind to burn or be recooked later. I remember her staying out late and getting lost. There were so many little things that started to become bigger issues.

It was hard watching this happen, because Mom was always there for me. She took me to my football practices and supported me at all my track and field meets. She would scream so loud at my meets that I could hear her over everyone; there was never a time I didn’t hear her. She would do anything for anyone – that was just the type of person she was.

I remember one day in high school when I came home and I saw how badly Mom’s hands were shaking. It was just weeks after she was diagnosed with Alzheimer’s, and I could already see how sick she was getting. For the first couple of years after her diagnosis, it was rough for me, not really having anyone to talk to about the situation. It was hard just to focus at school.

Luckily, my brother was there. I don’t know what I would’ve done without him.  He told me that Mom had told him everything she wanted us to do. He said: “Jeff, she told me to tell you that you have to finish school.” I remember crying for almost an hour. My eyes were bloodshot, all red. Didn’t they know how hard it was for me to comprehend all of this? I didn’t know where to turn, or who to talk to.

I rarely tell anyone what’s going on in my life; I am naturally quiet and tend to keep things to myself. But I do know that awareness needs to be brought to Alzheimer’s disease, so I will continue to raise awareness of this disease by sharing my family’s story. I want people to tell me their own stories. I want to keep the lines of communication open. When we talk about how we are facing this disease, it helps us feel less alone.

My mindset during the Olympics in Rio was that no one was going to beat me. In my head, it was all for my mom. “I will not lose. I will win gold for her. I can control this moment, and make it mine.” I focused and worked hard, worrying about no one but myself in the moment of competition. It took a whole lot to get to that point, but I did. And I won.

I feel like I am winning every day. I take after my mother, I hope. I am a nice person who cares about everyone. I will talk to someone living on the streets, offer money or help, and give my blessings – that’s how I cope with my situation. I continue to help others as my mom would.

I’m the first man from the U.S. to win gold in the long jump since 2004 and I’m looking forward to pushing myself even further, focusing on sprinting before the next summer Olympics in Tokyo in 2020. I know I can do it. To the naysayers, I say: “Just watch me. I will do it.”

My mom continues to inspire me. Every day, she still fights through the disease, with my dad by her side. I am so happy she is alive, and that I could bring the gold back to her and place it in her hands. That is all that matters. Mom taught me to keep on fighting, and that is what I encourage other people dealing with this disease to do, whether you’re the child, spouse or friend of a person with dementia or Alzheimer’s. Talk to each other, support each other and stay grounded. You aren’t alone.

About the Author:  Raised in McAlmont, Arkansas, Jeff Henderson is an American track and field athlete. Jeff took first place with an 8.38 meter leap in the long jump at the 2016 Summer Olympics, bringing home a gold medal to his mother. Jeff encourages anyone in the midst of an Alzheimer’s diagnosis to find someone to talk to. Follow him on social media via Facebook and Twitter.

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