Jun 212013
 

the longest day, ACBLMy daughter and I experienced the longest goodbye during my husband’s decade-long struggle with Alzheimer’s dementia. Henry died in March of this year.

Henry taught me to play bridge more than 30 years ago when we were courting. My daughter, as a little girl, learned how to play the game while sitting on his knee.  Playing bridge became a tradition with my family as we played weekly with friends, and whenever we went to California to visit Henry’s mother (also a very fine bridge player).

All day today, people across the country are doing the things they love as part of The Longest Day, an Alzheimer’s Association event to raise funds and awareness.  Some will participate by hiking, cycling, swimming, sailing, bowling, dancing, painting, running, skateboarding or rock climbing. We are playing bridge.  The Longest Day gives my daughter Kristen and me a chance to honor his memory in a very tangible way.  I am very grateful that Donna Compton, the owner of our bridge club in Dallas, chose to participate in this very special day.

Henry was a brilliant scientist, unfailingly kind and interested in making a difference in the world and in people’s lives.  He was diagnosed with posterior cortical atrophy, a variant of Alzheimer’s, in 2006; but continued working until May of 2009, when he retired after 31 years with the United States Environmental Protection Agency—determined to continue living according to his goals instead of giving in to depression or desperation.  He and my daughter stayed active in the community, especially with the YMCA for which they both raised thousands of dollars each year during the Y’s scholarship fund drive. Before he passed away, Henry made the decision to donate his body to the University of Texas Southwestern Medical Center Memory Research Unit.   Until the very end, he was committed to doing what he could to make a difference.

Participating in The Longest Day allows me to be part of a movement and most importantly, carry on my husband’s legacy for the study and eventual eradication of this dreadful disease.  My involvement in this event has given me a new perspective on everything we’ve gone through over the last few years. As I play bridge, I will reflect upon the truly blessed life we had and the nobility with which my dear husband faced his inevitable decline.

I feel as if I owe my service to Henry, to my community and to all of those suffering with Alzheimer’s disease as well as their loved ones.  Seeing our community and others come together shows me that this disease affects everyone in some way.  Sharing our stories, journeys and supporting one another has been an incredible experience. I can only hope that what we do today, in this unified effort, will truly have a lasting impact for the Alzheimer’s Association and the fight to find a cure for this devastating disease.

About the Blog Author: Laura Onsgard lives in Dallas, Texas.  She is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event to raise funds and awareness for Alzheimer’s care, support and research.


Jun 202013
 

Mollly and Mom fav photoI come from a loving and supportive family. I have always been close to my mom, Liz.  She has a degree in early childhood education, and she gave her full attention to raising my sister Kate and me.  Our home was filled with activity. She taught us songs, played games with us, and took us to swim team and play dates.  My mom has a special relationship with our friends as well. (She gave my friends nicknames that have stuck with them to this day!) While I was away at college we should speak almost daily, and I could expect to receive a care package or card every week. “Just because!” she would write.

By the time I graduated in the spring of 2009, those calls had become less frequent.  It was clear that something wasn’t quite right. My mom was starting to forget important dates and repeat herself.  In the fall of 2010, just before her 57th birthday, she was diagnosed with dementia.  No matter how much you are expecting a diagnosis like that, absolutely nothing can ever prepare you for it.

Up until two months ago, not that many people in my life knew that my mom has dementia. Because of that, I struggled with my decision to participate in The Longest Day, an Alzheimer’s Association event to raise awareness and funds for programs, support and research.   I was scared that I would get asked questions that I wasn’t prepared to deal with, and more than anything I was scared about how “real” this would make everything.

With the support of my family and my boyfriend, I signed up with the objective of raising the $1,600 team goal by myself.  I had no idea how many people would rally around me. As of today, the day before The Longest Day, my team, the Cape Cod Alzstars, has raised more than $33,000 for the fight to end Alzheimer’s.  I am so thankful to know such generous and thoughtful people!

Tomorrow, on the longest day of the year, we will be waking up bright and early to tackle the Cape Cod Bike Trail.  We are also putting on The Longest Day Fishing Tournament, which will be followed by an amazing BBQ and a night surrounded by friends, family and even people we will be meeting for the first time—all of us bonded by a connection to Alzheimer’s.Molly W and Mom at pool

More than anything, I want my mom’s dementia to go away.  I can only hope that the money raised by everyone who participates in The Longest Day will help us get closer to a cure and will prevent other families from having to go through this.

It’s been three years since I first heard the diagnosis, and I am still trying to wrap my head around the challenges that face my mom, and my dad as her primary caregiver. While making the decision to participate in this event was not easy for me, I am so incredibly glad that I did.  Knowing that we are not alone—that others are standing with us—helps as we try to adapt to a new life and an uncertain future.

Tomorrow is about you, Mom.  I’m in it until Alzheimer’s is finished.

About the blog author: Molly Waugh is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 21, 2013, to raise awareness and funds for Alzheimer’s care, support and research. Click here to follow Molly and her team, “Cape Cod Alzstars,” during this 16-hour event.

Apr 172013
 
The Longest Day: Fighting Alzheimer's

“This Is Our Life” is the final line of a production entitled “Resurrection” that my husband Steve and I have been a part of with our church singing group for the past 17 years. During the last song, everyone in the congregation holds a candle that is lit from a single candle that stands alone on the altar. As each candle is lit, we watch the church go from dark to light.

The first year we performed, a small group of us got together and pitched in—sewing costumes, rehearsing and doing whatever was necessary to make it happen.  Almost two decades later, there are more than 100 people in the  cast. The experience has taught us that when people come together, the illumination is very bright.

This summer, on June 21, my husband, our family, our friends, and community will stay in motion from sunrise to sunset as a way of showing our commitment to a day when Alzheimer’s is no more.  It’s part of The Longest Day, an all-day event to raise awareness and funds for Alzheimer’s care, support and research. We’ve named our team “This Is Our Life” because we believe—similar to watching the church go from dark to light during the performance —if we all work together, we can illuminate the darkness of Alzheimer’s.  The more people willing to tend to the light, to spread awareness about Alzheimer’s and to get involved, the closer we come to a time when Alzheimer’s doesn’t exist.

Alzheimer’s is no stranger to our family.  Last year, right before his 59th birthday, my husband Steve was diagnosed with early-stage, younger-onset Alzheimer’s.  Five years earlier, his mother was diagnosed with Alzheimer’s.

In a way, Steve’s diagnosis is a gift.  Because we have this knowledge, we don’t waste a minute.  We know this time is sacred.  Steve’s quality of life is good—and we are living every day.

Time to Make a Difference

After  receiving a diagnosis of Alzheimer’s, there is so much you feel like you can’t do. There currently aren’t treatments to stop this horrible disease. There is no cure. But Alzheimer's Charity Event: The Longest Daybeing part of The Longest Day is something we can do.  It is empowering to have this tangible event where we can take action.  And it’s action that really matters.The nearly $12,000 we raised last year helps support Alzheimer’s programs and care, and furthers the Alzheimer’s research going on throughout the world to try to find better treatment and a cure.

For us, the event is also about community. At the end of The Longest Day last year, we felt better about the future than we did at the beginning of that day. Every donation came with a note of support and love.  At sunset, 30 people gathered at our house for a celebration of all we accomplished. This year, we hope to have 50—or even 100.  When you bring people together, for important causes, unbelievable mountains can be moved—and our amazing community has shown us that they are here with us on this journey, that IS Our Life, until a day when Alzheimer’s is finished….or is just a memory!

Judy Johanson is care partner for her husband, Steve, who was diagnosed with younger-onset Alzheimer’s at age 59. Together with her family and friends, Judy is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 21, 2013, to raise awareness and funds for Alzheimer’s care, support and research. 

Jun 222011
 

As our first effort at The Longest Day is coming to an end, I’m excited about the potential of this event.  When I was on the Chicago Lakefront on my bike during my four hours of riding to honor my mother, who had Alzheimer’s, for all that she did for my brother and me, I was also thinking about all the people who have the disease today (an estimated 5.4 million) and, regrettably, all the people who will have it going forward (as many as 16 million just 39 years from now unless we change the course of the disease through sufficient research).  And I was thinking about their caregivers (15 million already today).

At the Alzheimer’s Association we work every day to improve the lives of individuals who are facing the disease, both those with a diagnosis and those who care for them, as we also invest directly in research to change the course of the disease and as we pursue public policy changes to have both our federal and state leaders recognize and address the dramatic impact of Alzheimer’s at both the human level and an economic level.   Another thing we’ve been working on in the last few years, which I hope you’ve noticed, is raising public attention to the disease and engaging people across the country in activities that will ultimately make better care, improved diagnosis, effective treatments and prevention a reality.

The Longest Day is the kind of event that can engage people around the country in helping us make those investments in support, public policy and research while it also focuses public attention on the realities of the disease: far from “a little memory loss” as too many Americans still believe, today it is progressive, degenerative and fatal.  It doesn’t have to go on that way. The Longest Day is also the kind of activity that will help us change those realities.  We can do it.  With the public mobilized we can put an end to Alzheimer’s.  The research community believes that we can conquer it and I do too.

I want to thank everyone who supports our work every day:  our donors, our volunteers, our staff and everyone who helps in even the smallest way.  Today I particularly want to thank the individuals who participated in today’s event. They are pioneers in our journey toward real changes in Alzheimer’s.  I look forward to working with even more of you next year on The Longest Day as we aim toward the vision of the Alzheimer’s Association, a world without Alzheimer’s.  Join us.

Harry Johns is president and chief executive officer of the Alzheimer’s Association.

Jun 222011
 

I have seen what Alzheimer’s does to an individual first hand. My mother died from Alzheimer’s,  my aunt died with Alzheimer’s, and I have an uncle living with the disease.

Late this afternoon, as I walk for two-and-a-half hours through downtown Chicago, I will be thinking about all three of them. They are why I work for the Alzheimer’s Association, and why I am participating in the Alzheimer’s Association Longest Day™.  I am committed to fundraising for people with Alzheimer’s because I want to make sure families and individuals affected by this disease receive needed support and resources.  I am proud to be part of an organization that is there for people when they seek help.

I have a hope that one day, we will find a cure for Alzheimer’s and can celebrate that no one else has to live through this disease. It will take endurance to get to the finish line, but we can see an end to The Longest Day.

Margy Batora works in Donor Services at the national office of the Alzheimer’s Association.  She enjoys a good walk in the city, especially when she is raising funds for Alzheimer’s.

Jun 212011
 

Today, I am running and walking the streets of D.C. Why? Because  I am participating in the Alzheimer’s Association Longest Day™ in honor of the millions of people around the world living with Alzheimer’s.

I’m proud to join with my co-workers in this effort to raise awareness and to honor both those living with Alzheimer’s and the millions of caregivers providing love, attention, and care to their family members or friends. After meeting our wonderful advocates at the Alzheimer’s Association Advocacy Forum, I am in awe of the resilience of people and families who are affected by this devastating disease.

I have worked for the Alzheimer’s Association for six months, and I dedicate my work to my great uncle who is living with Alzheimer’s and to the people across the country I have met living with neurological diseases like Alzheimer’s and Parkinson’s.

Today, during the longest day of the year, I am running and walking because I dream of a world without Alzheimer’s. I hope that my contributions, both now and in the future, will get us one step closer to that goal.

Jennifer Sheridan is a lobbyist at the national office of the Alzheimer’s Association.  She spends her free time exploring D.C. and is constantly in pursuit of the best cup of coffee in town. Today she is participating in the Alzheimer’s Association Longest DayTM, a sunrise-to-sunset relay supporting those affected by Alzheimer’s disease.

Jun 212011
 
kburns_photo_with_shirt_resize

Today I am walking as part of the Alzheimer’s Association Longest Day™ in honor of my mother’s brother, Armand Paluzzi, and my father’s brother, Patrick Burns. My Uncle Pat was diagnosed with Alzheimer’s a few years ago. He had to leave his wife and his home to move into a full-time care facility, where the disease quickly and sadly progressed. My wonderful Uncle Pat passed away from this horrible disease shortly thereafter.

My Uncle Armand was diagnosed a few years ago but thankfully is still living at home. He recently went on a golf vacation with his wife, my Aunt Jan — which was such good news to hear. Both of my uncles were and are loving, generous, brilliant and hard working entrepreneurs whose example I treasure.

I have been a caregiver for someone with a serious illness in the past, and I know that taking care of someone with a serious illness takes essentially ALL the endurance, love and patience that you possess, along with incredible reserves of willpower and energy that you don’t even realize you have. I know how challenging it is to find hope and to “keep going” when it seems utterly impossible on some days.

I decided to participate in this endurance event because it’s a truly great way to raise awareness for those living with and caring for those with Alzheimer’s – people who go the distance and endure with love, courage and heart on a daily basis, even with no finish line in sight. I will be grateful if my participation in any way helps to shed light on this disease. Today is a great reminder to me of why we do the work that we do at the Association.

Kelly Burns has been with the IT department at the national office of the Alzheimer’s Association for more than five years. She assists in building and maintaining our website, www.alz.org. Today she is participating in the Alzheimer’s Association Longest DayTM, a sunrise-to-sunset relay supporting those affected by Alzheimer’s disease.

Jun 212011
 

I’ll never forget the first time I saw my grandmother and realized that she didn’t recognize me. It’s like a punch in the gut that you can’t recover from. During the course of the next two years we witnessed her fade away. Alzheimer’s disease is a thief. It stole her memories, her independence, her quality of life and ultimately contributed to her death.

It’s the only cause of death among the top 10 in America without a way to prevent, cure or even slow its progression. It is for all of these reasons that 18 months ago I began working for the Alzheimer’s Association. I want to put an end to this dreadful disease.

Today, I’m riding my bike as part of the Alzheimer’s Association Longest Day™ to the former home of George Washington – Mt. Vernon.  Our first President once said that, ““Ninety-nine percent of failures come from people who have the habit of making excuses.”

I think all too often in this country we make excuses for why we can’t solve the Alzheimer’s crisis. For me, that ends today.

Brendan Burns works in online advocacy for the Alzheimer’s Association Public Policy office in D.C.  He spends his time chasing after two young children and riding his bike. He prides himself on being one of the 100 people in the world who watch C-SPAN for fun. Today he is participating in the Alzheimer’s Association Longest DayTM, a sunrise-to-sunset relay supporting those affected by Alzheimer’s disease.

Jun 212011
 

Lynn (on the right) with Harry Johns and Cathy Kestler

When I was a kid, the longest day of the year was always one of the most exciting.  School was out and we could play outside until dark — and even stay up a little longer to catch fireflies.  It was a time of no worries.

But today, on the longest day of the year, I am walking more than 10 miles in honor of those who are enduring a life with Alzheimer’s. I am especially walking for Marilyn Beiser, who was diagnosed with early-onset Alzheimer’s disease at the age of 58.

For more than 20 years, Marilyn worked in business administration and accounting, and enjoyed a successful career filled with promotions and awards. Then Alzheimer’s arrived and robbed her of her confidence. Marilyn was fired from three jobs and experienced long periods of unemployment. But Alzheimer’s didn’t stop there: It also robbed Marilyn of her freedom.

It wasn’t the diagnosis that became the longest day for Marilyn.  Her longest day was the day she handed her car keys back to the dealership and stopped driving.

“I cried harder at the dealership than the day I was diagnosed,” Marilyn told me. “I knew I would have to ask friends and family for rides. I felt as though I was turning in my pride and my independence at the same time.”

Despite these challenges, Marilyn shows tremendous strength and endurance in her fight against Alzheimer’s on a daily basis. She is an active volunteer with the Alzheimer’s Association Greater Delaware Valley Chapter and serves as Early-Stage Advisor for the national office of the Association. She is a dedicated grandmother, mother and friend.

She wants to be part of the solution.  So, she asked her neurologist about clinical trials and has now been a participant for more than one year.

Marilyn inspires me to go the distance.  A few hours and miles doesn’t feel like enough compared to the endurance, strength and courage Marilyn and millions of others show every day. Having the opportunity to participate in this new event to raise funds and awareness for with the disease has brought to light in a new way how my longest days (as a mother of two young children and a full-time worker) are nothing comparable to those living with Alzheimer’s disease, their caregivers and their loved ones. And it is a lesson to me to remember those long days as a carefree kid and appreciate those moments while I can.

I will do everything I can to continue the journey and inspire others to be ‘in it’ until Alzheimer’s ends, so we can achieve our vision of a world without Alzheimer’s and the longest days can go back to being about fireflies and great memories.

Lynn works on national event programs at the Alzheimer’s Association, including Walk to End Alzheimer’s™.  Her passions are family, fundraising, great books, snacks and mindless reality television. Today she is participating in the Alzheimer’s Association Longest DayTM, a sunrise-to-sunset relay supporting those affected by Alzheimer’s disease.

Jun 212011
 

Today, I have the honor of participating in the Alzheimer’s Association Longest Day™.  I’m excited to stretch my legs as I explore the nation’s capital and reinvigorate my passion for fighting Alzheimer’s disease, the 6th leading cause of death in the U.S.  I work at the Alzheimer’s Association because this disease took my grandmother when I was in high school, and I’ll be thinking of her today.

It’s fitting to be taking in some of our nation’s most awe-inspiring monuments as we consider the enormous magnitude of this public health crisis our country is facing.  Alzheimer’s disease is the only cause of death among the top 10 in America without a way to prevent, cure or even slow its progression. Despite this shocking lack of treatment more than 100 years after the disease was discovered, for every $25,000 the federal government spends on care for people living with Alzheimer’s disease, it only spends $100 on Alzheimer’s research.

Staggering statistics aside, my heart breaks for families like mine who have, are or will be touched — slapped really — by this devastating disease. I know my grandmother would want better for my son, and I’m proud to be honoring both of them as an Alzheimer’s Champion.

Wherever you are today on the longest day of the year, I hope you’ll think of the Alzheimer’s Association and the challenge ahead of us as you climb a set of stairs, lug groceries from the car, or walk the dog.  We’re all in this together.

View photos from The Longest Day.

Erin Heintz works in public relations at the national office of the Alzheimer’s Association.  She recently relocated to D.C. from Chicago with her husband, 6-month-old son and golden retriever.  She is participating in the Alzheimer’s Association Longest Day™, a sunrise-to-sunset relay supporting those affected by Alzheimer’s disease.



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