Jun 212013
 
Matt Steele 2

My wife of 32 years, Margie, started showing symptoms of Alzheimer’s at age 50. Three years later, we met with her primary care physician who ran down the list of warning signs. He was sure it wasn’t Alzheimer’s because “she was way too young for that.” He was wrong. Now at age 57, Margie is in the late stages of younger-onset Alzheimer’s.

Margie’s mother died of Alzheimer’s in 2010 and her sister, now in her early 50s, was just diagnosed.  One of the things I want to do with my life is raise awareness.  My hope is that the action it inspires will lead to a day when Alzheimer’s doesn’t devastate anyone else.

Today is about action. Along with friends and family, including our three children, I am participating in Alzheimer’s Association The Matt Steele 1Longest Day, a 16-hour event to raise awareness and funds for Alzheimer’s support, care and research. Our team name, “Minds Over Matter,” is an inspiring-if-complex reflection of our family and friends’ collective effort to combat the devastating impact of Alzheimer’s with hope and strength. The team consists of a core group of 12 people doing a range of activities from running and walking to skateboarding and cycling. I think for all of us, it’s kind of empowering—a small way to do something about what feels like a hopeless situation.

It’s also a tribute to Margie, who was driven to help others. Twenty years ago, she founded the food pantry in the Boston suburb where we live, and she managed it until she became too ill to continue. In 2006, the town named her Citizen of the Year for her lifetime of community service.

Margie is now in need of 24-hour care, which is given with love in our home by an amazing team of caregivers we call “Team Margie.”

Accepting that Margie’s has younger-onset Alzheimer’s and managing the day-to-day challenges often feels overwhelming. Participating in The Longest Day with my family and friends is my small way of fighting back. I want to raise awareness of the devastating impacts of this disease on families and provide funding for Alzheimer’s research. It is my hope that together we can end Alzheimer’s so other families will be spared the pain and hopelessness we have experienced.

About the blog author: Matt Steele cares for his wife, Margie, who has younger-onset Alzheimer’s. He is helping to raise awareness and funds with team Minds Over Matter in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event to honor those living with Alzheimer’s disease and their caregivers. Matt is also a member of the Alzheimer’s Association Alois Society.


Jun 212013
 

My name is Ryne and I am 12 years old.  I live in a suburb of Chicago.  I heard my Aunt Joan asking my father if he wanted to join the team she was part of for Alzheimer’s Ryne and GrandmaAssociation The Longest Day.  I learned what it was about and asked my mother if there was a minimum age or if she thought I could join the team.  First I thought it would be a fun thing to do, and then I thought about how much it could help people like my Grandma.

I don’t understand Alzheimer’s disease very much.  I just know how it has affected my Grandma.  In the last couple of years I started to notice that my Grandma couldn’t remember how to do a lot of the things she used to do.  She couldn’t remember how to make French toast for me on one of our visits.  I always play card games and board games with my grandparents.  We started to play Sequence once and my mother had to help my Grandma play because she couldn’t remember what to do.  A lot of times now, she won’t even play with us, and I can tell it is because she doesn’t know how anymore.

Today, I have had to change my plans a little for The Longest Day.  Originally I planned to go on a two hour bike ride, play two hours of basketball, and in the evening, I had a baseball game.  I had surgery on my elbow yesterday, so I cannot do any physical activity.  I decided to honor my “Grammy” and spend the entire day playing all the card games and board games that she probably would love to be able to play.

So far I have raised $355.  Three of my grandmother’s brothers and sisters have died from complications brought on by Alzheimer’s.  I wanted to get involved and raise money so scientists can work on better treatments and hopefully a cure.  I worry that my Dad and I will get Alzheimer’s.  I don’t worry about my sister though because she doesn’t forget anything!

I am glad to have a chance to do something to help my Grandma and people that suffer like she does.  I hope that I can participate in The Longest Day every year until there is no longer a need for it.  I am going to try to get all my cousins to join me next year!

About the blog author: Ryne 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 212013
 

sonia and dadMy father was diagnosed with Alzheimer’s back in 2006. I remember looking into my father’s eyes and realizing he doesn’t know who I am. I never really understood heart break until that day.

Two years later, on April 4, 2008, my father passed away, 13 days before his 75th birthday. Now I hold onto the memories that I have of my Father – and I celebrate what he loved – MUSIC!

sonia bracelets

Throughout his journey with Alzheimer’s, we made sure my father had a radio in his room. Even when my father had a glaze in his eyes, you could always tell he was okay as long as he heard the music.

I still remember how the nurse would get him out of the hospital bed. She would sing to him; he would get up and they would start dancing. It is a moment I look back on with tearful happiness. They would slowly waltz to where ever she needed to take him.

Just like my father, I have a passion for music and for dance.

Which is why today – from sunrise to sunset – I will be doing Zumba fitness (a workout that combines dance and Latin music) as part of the Alzheimer’s Association The Longest Day. During this 16-hour event, I am dancing to music, enjoying myself and REMEMBERING my father.  I am doing this for him and for all of those who have lost their memory because of Alzheimer’s.  I want to make a difference for those who are living with Alzheimer’s right now.

Join me! Turn on some music, get up and move, and be part of the fight against Alzheimer’s.

About the blog author:  Sonia Vazquez lives in Yuba City, Calif., where she is a Zumba fitness instructor. Today, she is participating in the Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event to honor those living with Alzheimer’s disease and their caregivers.

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.

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