Jun 202016
 

Today is the The Longest Day, a sunrise-to-sunset event that symbolizes the challenging journey of those living with the disease and their caregivers. On June 14, 2012, my four siblings and I crowded around my father’s bed to say our final goodbyes. Ronald Paul Geguzys Sr. has been missed in so many ways since then, most especially by his children who never really got the chance to share him with our children. Dad passed away of Alzheimer’s just after his 73rd birthday. He left behind a wife, five kids, 11 grandchildren and many people who had the privilege of calling him a friend. He spent the bulk of his career at GE, growing steadily to CEO of the Ballast Division.gb3

He knew how to work hard and play hard. He was an avid sailor and loved all water sports. He taught us to ski practically from birth! He gave the best hugs and hearing his voice meant all was right in the world. His smile and laughter were infectious. I cannot remember a time growing up when he didn’t know the answer to a question, or at least have the ability to figure it out quickly.

Dad could build anything from scratch, including a car and his homes. Even with such “dad-like” hobbies he was the most gentle nurse when he had to care for my brother and I after we were severely injured in accidents just weeks apart.

He wasn’t perfect. He could be brutally honest, infuriating and inflexible. To know him, though, was to love him. Watching him forget little things was hard, but knowing he had no idea who his kids were was brutal. His death blew a hole in relationships that were built over a lifetime. Watching him suffer was more than we could bear.

gb1It has taken a few years for the pain of his passing to settle enough to push through and do something in his honor. Now, the time is right to honor his memory and join the fight against Alzheimer’s during The Longest Day. This year during the summer solstice we will raise funds and awareness for the Alzheimer’s Association by “Lighting The Park” to honor my dad and others who have been affected by this disease.gb2

Tonight, as the sun sets on The Longest Day, we are meeting downtown in the park. Each person gathered will have a unique hand-blown glassybaby votive with a tea light inside. We will come together and make a statement by lighting our candles together and basking in each light’s glow. By joining as a group to remember and support those we love with Alzheimer’s, we will send a powerful message that we are stronger in numbers.

Growing up, my parents always taught us that together my siblings and I were a fist, as there were five of us, and alone we were just digits. I would like to think the same rule applies to fighting Alzheimer’s. Together we can make a difference. Together we can raise awareness and funds to research a way to finally eradicate this disease so no one has to fight this awful fight.

About the Author: Vicki Fredman is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 20, 2016, to raise awareness and funds for Alzheimer’s care, support and research.

Jun 202016
 

My sister Rose first got in touch with the Alzheimer’s Association about three years ago on behalf of our mother. Since then, and the organization and local chapter has helped my family in so many ways. Today we give back by once again participating in The Longest Day, a sunrise-to-sunset event that symbolizes the challenging journey of those living with the disease and their caregivers.2014_TLD_Denver_MotorcycleRide_0855 (1)

Years ago, when Rose and I first talked about how we could raise money for the cause, we decided to organize a motorcycle “poker run.” We ride our motorcycles to specific checkpoints and draw a playing card at each one, the object being to have the best poker hand at the end of the run.

This afternoon is our third annual The Longest Day Poker Run. There are about a dozen Harley Davidsons in our family, and with all the friends we have with Harleys, we knew this would be a popular event. In fact, I feel like it has become a family tradition! It’s just one small way to give back to the Association for what it has done for us.

2014_TLD_Denver_MotorcycleRide_1001 (1)I’m so proud to participate in The Longest Day. I knew we had to do something for mom and the millions affected by Alzheimer’s, and when you plan and host an event such like this, you really see the people out there who have been affected by this terrible disease. You run into a lot of people who pour their heart out about their connection to the cause. I met a bar owner who cried on my shoulder; he could relate to our fight and he was in a position where he could help us. He advertised about our event in his bar, brought in a live band and was very giving.

As a captain of my team, the day-of is constantly on your mind…is it gonna work, is it gonna happen? And somehow, it does, through the help of many friends, families and local businesses. Last year we exceeded our goal, and we are well on our way to do the same this year. Today we’ve even gotten the kids involved with an obstacle course at a local park. Anyone of any age can help put an end to Alzheimer’s, and today we join together in different ways to draw attention to the cause.2014_TLD_Denver_MotorcycleRide_0387 (1)

We lost our beloved mother to dementia last September. Our longest days were the last few months with her, which were really painful for everyone. It seems like those months lasted forever. We don’t want anyone else to go through that pain, and that is why we raise funds and awareness today. This is a fatal illness that no one should take lightly. It can affect anyone. Together we can change its course; today, on The Longest Day, fight for your family and for your memories. Fight by joining together.

2014_TLD_Denver_MotorcycleRide_0431 (1)About the Author: Together with his family and friends, Randy Ceja  is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 20, 2016, to raise awareness and funds for Alzheimer’s care, support and research. You can visit Randy’s page here.

Jun 202016
 

Alzheimer’s disease is fast becoming a global epidemic.  Every 66 seconds, someone in America develops the disease.  We need to end Alzheimer’s – hopefully for our sakes – but also for the futures of our children and grandchildren.

This is my fifth year participating in The Longest Day, a sunrise-to-sunset event that symbolizes the challenging journey of those living with the disease and their caregivers. While I participate in the event in memory of my father, as well as my brother – who passed away with this disease just four weeks ago – I also do so in support of all of those battling Alzheimer’s, and their caregivers. I have now twice seen how devastating this disease can be, and the emotional toll it takes on a family.tomw1

My father Henry was an incredibly interesting and talented individual. Over the years, he owned and operated an amusement and concession business, bought a corner grocery store and operated Winkel’s Accounting and Tax Service. My dad truly was my first role model.

My brother Wayne and his loving wife had seven incredible children, eighteen grandchildren and eight great-grandchildren. He was my second role model and, while I miss him very much, I take solace in knowing that he is now in a much better place, and will not have to endure the worst of the terrible disease that is Alzheimer’s.

Today I am privileged to captain the Association’s National Board Team on The Longest Day.  We have established a very ambitious goal of raising $150,000 – and I am very confident we will accomplish our goal!

tomw2From sunrise to sunset, my team and I will do everything from biking and walking to dancing, cooking, swimming and fishing; one of my fellow board members also will be hosting a radio call-in show as part of this team effort. We will all join together in our different ways for one cause, and we will raise awareness every step of the way.

I wish all of you good luck with your Longest Day activities today and thank you from the bottom of my heart for participating in this critically important event to raise awareness and resources for the millions of people living with this disease. Together we can ensure that our families will one day live in a world without Alzheimer’s.

 About the Author: Tom Winkel currently serves on the National Board of Directors of the Alzheimer’s Association in Chicago where he also serves as Treasurer and Chairman of the Finance Committee. He previously served on the Board of the Alzheimer’s Association Southeastern Wisconsin Chapter in Milwaukee. Tom is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 20, 2016, to raise awareness and funds for Alzheimer’s care, support and research. Tom Winkel lives in the Milwaukee, WI area. You can view his page here.

Jun 202016
 

Today I’m honoring LuAnne and the 47 million people around the world who are living with Alzheimer’s by participating in The Longest Day, a sunrise-to-sunset event that symbolizes the challenging journey of those living with the disease and their caregivers.

How can I tell you about my wife LuAnne? In the simplest words, she is the love of my life and my bride since the age of 19. But words escaped me when, at 55, LuAnne was diagnosed with younger-onset Alzheimer’s disease.I still love being with LuAnne, but because of Alzheimer’s, she can no longer tell me what she sees, what she feels or what she wants. And while conversation eludes us, on The Longest Day I will use words in another way. From sunrise to sunset, I will write poetry in honor of LuAnne, and share my work publicly on a blog I created just for the event. Why poetry? Because, in the words of poet and philosopher David Whyte, poetry is “a language against which we have no defenses.” It’s a way I can speak of LuAnne that encapsulates everything I’m feeling — from my continuing love for her to my deep sadness about this devastating disease.brad anderson 3

brad anderson 7Writing poetry was unexpected. As LuAnne’s condition worsened, I didn’t know how to describe my intense emotions, and I needed to find a new way to articulate the impact Alzheimer’s was having on our lives. I participated in an online course about caring for a person with Alzheimer’s, which focused on ways to reduce stress and agitation for those living with the disease.What I also learned that is just as important, and what I would advise any other caregivers, is to figure out what you can do to reduce your stress and be a better spouse, partner, friend, and caregiver. Poetry was an answer for me. Once I started, poetry quickly became my go-to language to express my feelings about our battle with Alzheimer’s.

bradaToday friends and family will find me writing at home and places nearby that are special to LuAnne and me. I may struggle to find the “right” words as I reflect on the emotions that come with being LuAnne’s caregiver, but I know my fight will be nothing compared to LuAnne’s battle with Alzheimer’s. I will not let Alzheimer’s have the final word – those words belong to me, and to LuAnne, and our love story.

(from ‘Prairie Dance’, a poem by Brad Anderson)

I walk amidst her memory

Through the tallgrass and the dreams

I dream upon the hilltop

Of her spirit and her dance

It feels empowering to be able to honor LuAnne through the written word today, The Longest Day.

bander

 

About the Author: Brad Anderson wants to show those facing Alzheimer’s disease that they are not alone in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 20, 2016, to raise awareness and funds for Alzheimer’s care, support and research. Click here to visit Brad’s The Longest Day page.

 

 

 

Jun 202016
 

ss2

Today, on The Longest Day, my husband and I will wake up early to hike Mount Evans in Colorado with our team of friends, the Mile High Memory Club. It’s our third year participating in The Longest Day, a sunrise-to-sunset event that symbolizes the challenging journey of those living with the disease and their caregivers. This will be our second year hiking a Colorado 14’er (elevation: 14,265’) to honor someone we love very much who is living with Alzheimer’s – my mother.

Mom was diagnosed with Alzheimer’s a few years ago, but she has been silently suffering for much longer than that. If you have ever known anyone with Alzheimer’s, then you know what a cruel disease this is. Once diagnosed, the person knows their fate, and my mom has already seen firsthand what this disease does. Her mother – my grandmother – also had Alzheimer’s. Because of this, for years prior to her diagnosis, my mother knew what was happening to her and knew what was coming.  It was, no doubt, terrifying for her. Over time, she was going to lose the one thing she had spent her whole life creating – her memories.

ss1The reality of what is happening to my mom – and therefore, to our family – has been unfolding for quite some time. Over the years, my mom spent much of her time trying to hide her disease.  Unfortunately, there is no way for her to hide it anymore. The disease is progressing and it is heartbreaking to watch. My father is her primary caregiver and is doing an amazing job. Although I know he is exhausted, his patience never waivers.

Dad is there for mom today on The Longest Day and will be there for her always. They celebrated their 50th anniversary last year, but sadly, each day my dad loses another piece of the woman he has loved for all of these years – and I lose another piece of my mom. I am taking action today in order to make sure other families don’t have to watch their loved ones disappear in front of them.

We hike in honor of my mom and the 47 million people living with Alzheimer’s worldwide. We also hike for all of the families and caregivers supporting their loved ones. The more awareness we can bring to this disease – and the more funds we can raise for the Alzheimer’s Association – the closer we will come to putting an end to it.ss3

It is a privilege to be a part of The Longest Day. While I cannot turn back time and change what is happening to my mother, I can have a small part in fighting this disease and hopefully living to see a day without Alzheimer’s.

About the Author: Sarah Springer is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 20, 2016, to raise awareness and funds for Alzheimer’s care, support and research. Visit her personal page here.

Jun 192016
 

Although I have summited 20 of the 54 Colorado 14,000-foot peaks, my hikes up these peaks in the last few years have taken a whole new meaning. Tomorrow, I am climbing three “14ers” in one day along with my team Ascending for Alzheimer’s. Our climb is part of The Longest Day,  a sunrise-to-sunset event that symbolizes the challenging journey of those living with the disease and their caregivers.

johno1Three years ago, I received news that was not really a surprise, but still hit me straight in the heart. My dad was diagnosed with early-stage progressive dementia. His actions prior to the diagnosis led us to believe that he may have something wrong with him, but to hear the diagnosis of “dementia” from a doctor was terrifying and heartbreaking. It also prompted many questions from every one of my family members.john02

My first instinct was to conduct research. This led me directly to the Alzheimer’s Association where I immediately signed up for classes that taught me more about the disease and provided resources for both my mom (my dad’s primary caregiver) and myself (secondary caregiver.) Seeing all the great work that the Alzheimer’s Association did made me want to become more involved.

johno5This is how I found out about The Longest Day, an event where I could choose my own activity to help raise funds and awareness for the cause. I came across the Association’s various fundraising initiatives and was immediately intrigued that I could help by simply doing what I love – hiking! So in 2014, I formed my first team to support The Longest Day event.

My team hiked up Mount Sherman, all dressed in their purple shirts. At the summit we were met with an unexpected surprise as a cello ensemble was performing in effort to break a Guinness record for highest elevation cello concert! It was a great opportunity to spread the word about Alzheimer’s and The Longest Day, and our team raised over $1,700.

Last year, my team climbed Mount Shavano. Though the summit was spectacular, the most exciting part of the climb was actually the descent – a “glissade” of nearly 2,000 feet of elevation. Each of us took turns sitting and sliding down the snow field. It was fun, safe and saved our knees from the brutal hike down. Our team raised over $5,000!

Tomorrow we are hiking Mount Lincoln, Mount Democrat and Mount Bross all in one day in hopes to raise $5,000 once again. Our event begins tonight with camping at the trailhead, where I am making a Dutch oven lasagna and fruit cobbler. Tomorrow, we are getting on the trail early – a  6:00 am start.john03

I will think of my dad as I climb. He is now in the middle-stage of dementia. He uses a walker or cane to get around. He struggles every day to walk, talk, eat – all the things you and I take for granted. The hike will remind me of the struggles those living with Alzheimer’s and related dementias go through every day. As I hit my “wall” at about 12,500 feet and my whole body is screaming at me to stop, turn around and just go back to the comfort of my couch at home, I will push through to the summit… just like my dad pushes through every day. But tomorrow isn’t just any day. Tomorrow is The Longest Day.


About the Author:
 John Osmundson is hiking to raise funds and Alzheimer’s awareness in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 20, 2016, to raise awareness and funds for Alzheimer’s care, support and research. Click here to visit John’s page.

Jun 212015
 

“There is hope in the future and beauty in the moment.”

The Longest Day has afforded us the promise of this statement.

When my incredible husband Steve was diagnosed nearly four years ago with younger-onset (also known as early-onset) Alzheimer’s, we knew we needed guidance. The Alzheimer’s Association has provided us with that and more.

The Longest Day gave us an opportunity to take an active role. It also provided us with a chance to have friends and family gather and rally around Steve to let him know how loved and supported he is. We honor him by hosting a day filled with some of his favorite activities, and our grandchildren are empowered as they use their small but poignant voices to honor their Gramps and raise awareness. They have even coined the phrase “When life gives you JUDYTEAMAlzheimer’s…make lemonade!” Selling lemonade is only one of today’s activities.

lemonadeWe have run, walked, biked, swam, played horseshoes and danced Zumba. We have spiffed up the exterior of our old beach house, done puzzles and sang. We have shared old memories and created new ones. We have laughed and cried. We have honored those living with Alzheimer’s and memorialized those whom we have loved and lost. This is our day to celebrate life with Steve, and assure ourselves of what can’t be taken from us with this disease—love!SteveTLD

As the sun sets, a soft glow of purple washes across the faces of the nearly 50 people in our beach circle. We take time to reflect on what we have accomplished, and we ceremoniously offer an intention of hope and honor. Each of us ignites our individual light in the sand and then we join them together. As each is lit, we watch the dim light of a single candle grow from a faint glow to a radiant brightness. It’s then that we realize that there is hope in the future glowand beauty in this very moment.

It’s now time for contemplation of what has been achieved today, The Longest Day.

We have raised substantial funds for the Alzheimer’s Association, which has not only been an incredible wealth of resources for us on this journey, but also the force behind making global strides in research, care and education.

We have exhausted our muscles from our various activities. Our faces are sore from the shared smiles. Our arms and shoulders carry the weight of both giving and receiving numerous “strength-giving” hugs.

Our lungs are contented by being filled with fresh sea air. Our hearts are warmed and overflowing with the love and support of our family, friends and neighbors. As a group, we have turned Wells Beach purple to raise awareness. We have fought hard for future generations to realize a time when Alzheimer’s disease is just a memory. We have witnessed the true power of a community effort.endalz15 (1)

Thank you to all who are fighting this good fight! And to those who will face another “longest day” tomorrow…we do this for you.

About the Author: 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, 2015, to raise awareness and funds for Alzheimer’s care, support and research. 

 

Jun 212015
 

June 21 is my mom’s 80th birthday, but she doesn’t know that. She doesn’t know what day it is anymore. She doesn’t even know what a birthday is. My mom has late-stage Alzheimer’s.

Today, on her birthday, I am climbing a mountain in her honor by participating in the Alzheimer’s Association’s annual event The Longest Day. Along with 10 friends, I’m climbing Mount Whitney, the tallest mountain in the continental U.S., to raise money so that the Association can continue to provide support for people living with this disease. The climb will take 16-17 hours to complete and is certainly the longest hike I have ever undertaken. Every step is for Mom.JOHNBTLD

We started this hike in the darkness at 3 a.m. and we are still on our way to the top. As I take each step up this incredible 14,500-foot mountain, I am remembering all of the steps it took to get to this moment: all the training hikes and gym workouts, all the fundraising, and all of the long, seemingly impossible days of my mother’s disease.  All along the way, The Alzheimer’s Association was an invaluable resource for advice, referrals and strategies for handling my mom’s illness and decline.
JOHNTLDMy mom’s Alzheimer’s diagnosis was devastating news for the whole family, but especially devastating for her. She always loved learning, reading and discussing current events. The first in her family to go to a four-year college, she worked for Planned Parenthood and as a lobbyist for the Oregon Legislature. The last job she held was as an editor for a bilingual newspaper. At the same time, she was studying to become an ESL teacher.

johnmomThen she started forgetting things; appointments, bills, daily tasks. She lost her purse over and over again. She couldn’t read books anymore, since by the time she would get to the end, she had already forgotten the beginning.

She ended up losing her job due to her frequent mistakes. She lost friends because she would forget to call. She forgot to pay her taxes and her rent. She was ashamed of her symptoms, and became really good at hiding them by writing everything down in a notebook and carrying it with her everywhere. But then she started losing the notebook, too.

Mom forgot the day, the month and the year. She even started imagining she was living in the past. Eventually she forgot her own name and her family, including me.johnfriends

Every step of the way, The Alzheimer’s Association was there with the advice and resources I needed. Now I am seeking to give back so that others facing this awful disease can be supported. I’m climbing because it’s my mom’s birthday, and because I can’t celebrate with her anymore. Participating in The Longest Day seems a fitting tribute to her 80 years of life.  My team and I have raised over $15,000 and know that it will help a lot of people dealing with this disease.JohnGroupTLD

It feels empowering to be able to give back and to honor my mom in this way on her birthday, The Longest Day.

About the Author: John Binninger and his friends that make up The Whitney Summiters are participating in Alzheimer’s Association The Longest Day®. Click here to visit John’s team page.

Jun 212015
 

Good morning! Today is an important and exciting day in the making. This morning, members of the San Diego Harley Owners Group (H.O.G.) chapter are joining members of the San Diego Bridge Academy and Redwood Bridge Club in the fight against Alzheimer’s.  The American Contract Bridge League (ACBL) leads the fundraising to benefit the Alzheimer’s Association on The Longest Day, along with raffles, a fine art silent auction and an appearance by Chopper the Biker Dog!

Forget what you may think about people who ride motorcycles or people who play bridge. Not only are many of the stereotypes untrue, but Harley riders are just as active in their communities and willing to step up and make their voices heard as the bridge players are. Together this diverse group of backgrounds will ride across the 30+ bridges of San Diego and play bridge from sunrise to sunset.

Alzheimer’s affects more than 60,000 people in the San Diego area, and with the average age of an ACBL bridge player being 69, those in our community are susceptible. We are speaking with local television stations first, and after that, we will be making a stop at the local Harley dealership to bring together a unique group of Harley riders and bridges players so that our voices can be heard together.trishwhite

I myself have a personal connection to Alzheimer’s disease. When I was diagnosed with a plaque on my brain in 2010, I knew I had to stand up. I spent very little time feeling sorry for myself, and told myself that I couldn’t give up. I could lose my limbs and live without them, but my brain? Not my brain. My brain is my best friend.

Bridge is known as “aerobics for the mind.” I also have focused on mentally-stimulating games such as Scrabble and crossword puzzles. I stay social in order to keep myself sharp. I do whatever I can, as I always have in life, because sitting down solves nothing. It’s time to stand up!

There was a day recently when I wasn’t feeling up to going to my evening bridge game, but something inside me told me to go anyway. I ended up meeting a woman whose husband was just diagnosed with Alzheimer’s. They have only been married for five years. It was so important for her to see the information available and have someone to talk to and discuss caregiver issues with. I hope that today’s event will create progressive thinking in the world of bridge. Alzheimer’s creates a devastation of families; everyone in the family unit “gets” Alzheimer’s. Our voices are more powerful together, and we know we will be heard today.

I thank Robin Parker of the San Diego H.O.G. chapter who helped Harley riders set a goal of $1,600 on top of the bridge clubs’ goal of $2,500. I thank Robert Hartman, CEO of the ACBL.  I thank David Walters, the best bridge teacher imaginable, for lecturing today – half of the proceeds of his speech will go towards the cause. I thank Stuart Showalter, president of the Redwood Bridge club. And I thank all of the people who have made a difference in the fight to end Alzheimer’s.

About the Author: Trish White is an avid bridge player participating in Alzheimer’s Association The Longest Day®. 

 

 

Jun 022015
 

My name is Grace, and I am 15 years old. For nearly 10 years of my life, my mother was a caregiver for her two aging parents. My grandmother was broken physically, but my grandfather Jim slowly deteriorated due to Alzheimer’s disease, passing in February of 2014. Watching my grandfather lose his identity was one of the hardest situations my family has ever had to cope with. I live with images of how this incurable disease changed him; dealing with the grief of his passing was not easy.grace2

Ever since my grandfather’s death, I have wanted to do something to raise awareness and funds to combat Alzheimer’s. My opportunity came this year in my English class.

For my 10th grade service project, I had to choose a charity or foundation to volunteer for. Naturally I chose the Alzheimer’s Association. I raised $200 and made phone calls to people who had started their Longest Day teams to encourage them in their activities. After that, I took the next step. I set up my own team for The Longest Day, where I committed to use my passion, swimming, as a tribute to my grandfather and all people who have lost their life to Alzheimer’s. On The Longest Day, I will swim 16 miles to “Swim for Jim” as a symbolic tribute to those caregivers who work from sunrise to sunset to care for their loved ones.

People recognized my passion right away and so many were excited to donate generously to the cause. I have nearly reached the three thousand dollar-mark on my Longest Day Web page, and I can’t thank my donors enough for their tremendous support!grace3

This opportunity to raise awareness and funds for Alzheimer’s is much more than a school project. It’s personal. It is a fight for those who have their memories and identity stolen from them. It is a call for others to support the caregivers, researchers and those who have fought this battle. It is a commitment to remember for people who no longer can. It is also a pledge to honor lost loved ones so their agonizing fight will not be in vain.

I hope you will join me on The Longest Day. I can wholeheartedly say that this experience became part of the healing process for me and my whole family. We now have a sense of closure. The donations given and awareness raised will be instrumental in decreasing the number of people who live the longest day every day. Cherish your memories – support the fight to end Alzheimer’s.grace1

About the Author: Grace Arredondo is from Charleston, South Carolina. She swims for her high school swimming team, the Shadowmoss Sharks summer league team and The City of Charleston’s Southern Marlins Racing Team. She has chosen to use her competitive swimming skills to honor her grandfather, Jim Whaley, by participating in The Longest Day. You can visit her team page here.

 

 

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