Spotlight: Danielle Zawislak

Danielle and her grandfather

My grandfather was a man of few words but when he did speak he made me laugh.

Whenever we would go to visit you could always find him in his favorite chair just relaxing, watching his children and grandchildren around him.

I will never forget the last time I saw him it was a very shocking experience. His face was blank and lifeless not the grandfather I knew and loved.

Alzheimer’s is a disease that changes lives not just for the person who is ill but also their family and friends. May my grandfather rest in peace in a much better place.

Memory is a way of holding onto the things you love, the things you are, and the things you never want to lose.

Thank you for helping me fight a disease that has taken away the memory of millions of people around the world.

I am running the 2010 ING NYC Marathon in memory of Grandpa Pitstick.

Spotlight: Rachael Bachleda

Rachael and her family

At 61, my mother, Mary Lou Thompson, was diagnosed with Early-Onset Alzheimer’s. I saw the warning signs for years, but my family dismissed my concerns. My mother had been an active stay at home mom, a voracious reader and an active volunteer. In 2003, while planning my wedding, I noticed that my mother’s demeanor was changing. She seemed confused and intimidated by organizational tasks she had thrived on for so many years. In 2004, I became increasingly concerned when she got lost driving on a familiar road, after which she became flustered and made excuses. There were countless other signs as well.

Although there was no cure for Alzheimer’s, I knew that we could not ignore the problem and had to seek a diagnosis quickly. In 2006, I contacted the NYC Chapter of the Alzheimer’s Association for help finding someone to make an accurate diagnosis. The Chapter was helpful and supportive, directing me to a great doctor and clinic. The social workers at the Chapter helped me strategize how to approach my family and stressed the importance of seeking medical attention. After some convincing, my family agreed. Together went to the Memory Disorders Clinic at Columbia University, where my mom was diagnosed.

Though the initial stages were heartbreaking, it has been most painful to watch my mom’s personality change, and watch her lose her identity. Today, she cannot read or write her name, converse in a group or follow a conversation very well. She forgets what she is talking about and cannot find even the simplest words to get her point across. She can no longer prepare even a simple meal for herself and has difficulty getting dressed. In short, my mom cannot do anything on her own, which makes her feel like a child.

One of the terrible things about Alzheimer’s is its impact on the patient’s primary caregiver. Watching my mom’s disease progress at such a young age has been hard on the family, but seeing the impact on my dad’s life is tough. He is a healthy and active 63 year old, he had retired just before her diagnosis in order to begin the exciting “Golden Years” ahead. He gave up that dream, instead shouldering the care-giving responsibilities as her primary care giver. He would not have it any other way, but this responsibility is increasingly taxing. He is with her almost 24 hours a day and it is a challenge for him to maintain a balanced lifestyle.

Recently, my sister stayed with my mom while my dad went away for a couple of days. When my dad returned, my mom got angry with him, accusing him of leaving her for weeks. He knows this is a result of the disease, but he feels guilty and helpless as we all do. My sister and I have always had a strong relationship with our dad, but it has grown more so as we support each other.

In the last three years, while my mom’s condition has deteriorated, our ability to deal with Alzheimer’s has improved. The reason for this is the support of the Chapter. We attend the educational meetings and meet with social workers who specialize in helping Early-Onset patients and their families. We learn strategies to cope with the changes around us, while gaining an understanding of what is physically happening to her brain.

I joined a support group for daughters of Alzheimer’s patients. Prior to joining, I did not know anyone with a parent suffering from Alzheimer’s. It was comforting to meet and spend time with people who understood what I was going through. As a group, we have helped each other through many milestones. I joined shortly after having my first child, and while this was a joyous occasion, the group offered support when my mother was unable to help me. I would not want to go through this experience without the help of the Chapter staff and services for which I am truly grateful.

Last year, I joined the chapter’s Junior Committee and the inaugural “Run2Remember” Marathon Team. Running in the marathon was, in a sense, like caring for an Alzheimer’s patient. Both require a deep level of commitment and discipline, and it is undoubtedly a long (often painful) process that you must plug away at day in, and day out. It was an honor to run my first marathon in the city that I love, on behalf of my mom, my dad, and the millions of others affected by Alzheimer’s, who must trudge through their own “marathon” every day. I am excited to be running the marathon again with the 2010 Chapter team.

Spotlight: Judy Schuchart

Judy Schuchart: After the 2009 ING NYC Marathon

As many of you know, last year I ran the New York City Marathon in order to raise funds for the research necessary to find a cure for Alzheimer’s disease. This was in honor of my Dad who was diagnosed with Alzheimer’s over 6 years ago.

On June 15, 2010, my Dad passed away, leaving an emptiness that is difficult to express. Although I had already signed up for this year’s marathon, honestly I was thinking of withdrawing my registration. I was working a lot of hours, traveling a lot, trying to plan a wedding, and just lots going on. The early morning training runs just seemed unbearable. Then, during the week of my Dad’s funeral, the reminders of my Dad working 3^rd shift, then coming home and working on the farm all day in order to make sure his 11 kids were well cared for, made my excuses of not wanting to get up early seem pretty lame.

So….in memory of my Dad, Lester Leese, and the love, motivation, and support that he always provided, I will once again be running in the New York City marathon this year, on November 7, 2010 in order to raise funds to cure Alzheimer’s disease. Through our fundraising, if we can prevent one more person, one more caregiver, or one more family member from having to endure the pain that this disease causes, it is worth every step of the 26.2 miles!

If you would like to contribute to the cause, please see the website at http://2010teamr2r.kintera.org/judy .

Spotlight: Trish Conron

Trish with her Dad

My father was the greatest person I have ever known. He was kind – I can never remember him saying a negative thing about anyone. He was funny – not in the most obvious way, but in the best way imaginable. He was incredibly intelligent – he graduated from Notre Dame with a degree in Electrical Engineering. He was the most loving husband anyone could ever ask for. He still called my mother his girlfriend and considered himself the luckiest man alive to have met her. But most important of all, he was the most incredible father I could possibly imagine having. Nothing mattered to him more than his family. He was never as happy as he was when we were together.

My father suffered from many health issues over the last 10 years. Due to poor genetics, he suffered from vascular disease and had to undergo more surgeries than I can count on my hands in a 4 year span. Somehow he managed to make it though them all…even his double bypass surgery. Many of these were considered “emergency” surgeries, and there were many hours when we sat in the waiting room begging God to get Daddy out of the ER and back to us in one piece. Somehow, he always did.

We knew we were blessed and lucky to still have him with us. Though he had become weaker as a result of the trauma his body went through, amazingly, he was still as sharp as ever. We marveled at the way that after everything, he was still the incredibly intelligent engineer we were so proud to call our Father.
Slowly, about a year and a half ago, that began to change.

It wasn’t so obvious at first. He would forget what he was saying mid-sentence, or get somewhere and realize he hadn’t brought something he needed. I know these are things that most of us do on a daily basis, but my father never forgot anything, which made it alarming to those of us who were closest to him.

The biggest sign was his sleep problems. At first, my mother was the only one who really ever witnessed them. For the last few years, he would wake up in the middle of the night and act out whatever it was he was dreaming about. At times, he would be terrified, and occasionally even aggressive.

Finally last summer I begged my mother to take him to a sleep doctor. That began a long process of testing which eventually led to a neurologist. We were terrified to hear the word Alzheimer’s, but at the same time, we were sure that was the answer. In late November of 2009, almost 6 months after testing began, we finally got our answer. At first were relieved to find out that we were wrong - Daddy didn’t have Alzheimer’s. We weren’t relieved for very long though, because what Daddy had was Lewy Body Dementia.

Though widely unknown, even to those in the medical profession, LBD is the second most common form of Dementia behind Alzheimer’s. Approximately 1.3 million Americans suffer from this horrendous disease. There is currently no cure. Most simply stated, my father suffered from symptoms of both Alzheimer’s and Parkinson’s disease while my family could do nothing but make him as comfortable as possible and pray. He hallucinated, lost his short term memory, had night horrors and acted them out(this is known as REM sleep disorder), didn’t realize his home was his home, and most devastating of all, didn’t know who my mother was. In addition, he walked with a shuffle, became extremely stiff, slept almost all day long, and fell frequently. It was one of these falls which finally resulted in us taking him to a nursing home, where he only stayed 7 days before being transferred to a hospice.

After 6 nights in hospice, my father died on June 9, 2010, less than 7 months after being diagnosed with LBD.

One of the hardest parts about my father’s illness was knowing that I was completely powerless to do anything about it. I am not a doctor or a scientist, and unfortunately, in this lifetime, I will not ever be able to discover a cure for these horrific diseases. I refuse to settle for just doing nothing though, so the least that I can do is support those who can.

I am honored to be a part of team Run to Remember this year. My father knew that I was going to be running for Alzheimer’s, and I know he was both proud of me and grateful that there are people out there who are working toward something that meant so much to him. While he knew that it was too late for a cure to help him, he prayed that one would be developed one day so that others wouldn’t have to suffer the way that he did.

Spotlight: Lynn Kelly

Each week we will be picking a few members to spotlight to tell their Alzheimer's story and why they are running in this year's ING New York City Marathon. Check in each day or week for new updates on the highlighted members. This is a great way to get to know your teammates...(each person is picked at random).

Lynn Kelly's Mother

My mom was diagnosed with Alzheimer's over five years ago. My dad has watched his bride of 58 years lose who she is and become unable to do things that were second nature to her. I, along with my siblings, Michelle, Robin and Gus and spouses have watched the woman who raised us (or raised the one they love) slowly become someone else. We have been robbed of the mother we knew.

This year, we became bold in the face of this disease. We will raise $10,000 to be used toward finding a cure for this disease. (On July 25th, because of the huge hearts and generosity of so many people, we met our $10,000 goal. We are "Being Bold and Digging Deep" and have raised our goal to $12,000). Our goal is to prevent future families from confronting the loss of the man or woman who loved them and/or raised them.

We are using my legs to complete the marathon. We are all digging deep in our fundraising efforts. We ask that you join us and dig deep as well.

I also invite you to visit the blog I began when I declared I was going to run in the NYC Marathon.

Please leave me a note of support and encouragement. I love sharing this journey.

http://beingboldanddiggingdeep.blogspot.com/

Art For Alzheimers

Hello Dear Friends,

Just a quick reminder about the party on Wednesday at Space Gallery in San Francisco (1141 Polk St.) from 6pm-12am. I hope you make it! There will be some amazing art up for auction and raffle prizes such as Giant's tickets, vintage wine, dinner at Perry's restaurant and more!

Please visit www.artforalzheimers.com to view art work and place a bid if you can't make it to the party.

Please contact me if you have any questions.
xo Liz

Spotlight: Angela DiGaetano

Each week we will be picking a few members to spotlight to tell their Alzheimer's story and why they are running in this year's ING New York City Marathon. Check in each day or week for new updates on the highlighted members. This is a great way to get to know your teammates...(each person is picked at random).

When I was a little girl, my Grandfather used to spend the first month of summer preparing the lake for little girls who didn't like weeds. He would endlessly rake each and every "yucky" piece of seaweed from the bottom of the lake where his house was built. My sister and I would arrive; the trampoline would be set up, the lawn mowed, beds crisply made, Grandpa's boat glimmering in the sun, cookies baked, and Grandpa's arms outstretched to greet us. He was loud, generous, FUNNY, lovable, active, stubborn, great man. When we went to the rare dinner out at a restaurant, he would always ask us girls to be his "dates." My sister and I would kindly oblige and relish in feeling like the special ones at the table.

He would stay up late with us and play card games; and moan and groan when we won. He took us to watch him play his clarinet for his "Big Band" and we danced along proudly. He played "Tea for Two" and we would listen as if the song was in another language.

He was a wonderful Grandfather; savoring his role and sharing his joy.

He got Alzheimer's and it killed him within a few short years.

That's why I am running. Because it just isn't fair to miss out on so much. So at mile 23 I plan to say to myself, "This hurts. But not as much as it hurts to die too soon."

Above is Grandpa holding my Dad as a baby. The smile never changed.

GO BIG OR GO HOME! Let's find a cure.

Spotlight: Amy Ellixson

Each week we will be picking a few members to spotlight to tell their Alzheimer's story and why they are running in this year's ING New York City Marathon. Check in each day or week for new updates on the highlighted members. This is a great way to get to know your teammates...(each person is picked at random).

Amy (far left) and grandmother beside her

Running the ING New York Marathon has been a goal of mine for a long time. While I am extremely excited to finally have the opportunity to achieve this goal, I am even more excited about the passion I have for this particular race because I am using it to help a cause that is near and dear to my heart.

My grandmother, Helen Oakley Clayton, was diagnosed with Alzheimer’s about 8 years ago. For those of you who have family members or friends afflicted with this disease, you can understand the heartache of how this disease can affect you, your family, and your loved one with Alzheimer’s.

I will be proudly running this race in honor of my grandmother. Alzheimer’s has affected her in a way that makes her own children, and grandchildren, unrecognizable to her. It is extremely painful to be looked at with a blank stare by someone you love so much.

My grandmother is no longer the grandmother I’ve known most of my life. She can no longer run after my cousin to discipline him after he bit one of us, she can no longer cook for 30 people at a time, she can no longer clean and do laundry for her children and grandchildren, she can no longer garden and make quilts. I’ve always been mesmerized by my grandmother’s strength and have often wondered how she became the wonderful person she is.

Growing up, I continuously watched her work hard and do things for other people. I have watched her gracefully give her heart and soul to her children and grandchildren everyday and can only hope that someday, I will be a fragment of the kind person she is.

You can imagine how difficult it is to see my now extremely skinny grandmother

continuously sob because she wants to go “home.” She can’t even attempt to find her “home” because she doesn’t have the strength to walk.

So, my dear, sweet, grandmother, this race is for you. With this race, I will continue to hope and pray that when you leave this world and this life, you will finally find your “home” in heaven.

Spotlight: Bert Quarfordt

Each week we will be picking three (3) members to spotlight to tell their Alzheimer's story and why they are running in this year's ING New York City Marathon. Check in each day or week for new updates on the highlighted members. This is a great way to get to know your teammates...(each person is picked at random).

Bert, 3 years old with his mother, Sonja

On Sunday, November 7, 2010 I will embark on what I consider to be one of the most exciting and most memorable endeavors of my life. I will run a marathon in New York City, one of the greatest cities in the world, with my brother.

I am running in memory of my mother and my grandfather, who both passed away from complications from Alzheimer’s disease. I want my marathon run to be for a valuable cause and to have a positive impact on others. I am honored to have the opportunity to run this marathon as a member of Team Run to Remember (R2R), representing the New York City Chapter of the Alzheimer’s Association. The Alzheimer’s Association is committed to finding a cure for people affected by this disease.

The memory of my mother, Sonja Quarfordt, and my grandfather, Gustav Benson, will be my driving force to keep me going in preparing for and running this race. I have set a personal goal of raising contributions to the Alzheimer’s Association as part of my commitment.

Run 2 Remember Apparel

My apologies for the delay...

Singlets and Technical T-shirts are provided with your registration of the Team Run To Remember.

Long Sleeved Technical Shirt are NOT provided, as price will be provided. All proceeds DO go towards your fundraising goal.

Spotlight: Carol Holmes

Carol Holmes with her Mother

Meet my Mother, Eleanor Ann Holmes who at 86 and with Alzheimer’s was happily making a snow angel in Boise, Idaho with me. I am running my first Marathon to honor her, and besides raising funds to find a cure to end Alzheimer’s it is my mission to raise awareness to the human rights a person diagnosed with Alzheimer’s should continue receiving. When Mom was 84, signs of Alzheimer’s became apparent and on Nov. 17^th 2010, I am so fortunate and grateful she will be turning 89 years old. My Mother with her Alzheimer’s today, is still a HUMAN with needs and desires that should not be ignored or abused.

My mother was a Navy Nurse stationed in Japan when she meet and became engaged to my father a Navy Doctor. In those days, she was forced to abandon her navy career and eventually was a full time Mom to eight children. She was the greatest Mother ever!!! She moved our large family across country many times as my father’s duties changed. She raised her eight children, always sacrificing of herself to all of our needs.

My childhood was blessedly great because of my Mothers dedication to us. We all were exposed to sports, education, culture and love because of her. Everyday began and ended with a home cooked family meal. She was the ROCK that held our large family together thru all our family’s trials and tribulations.

I was living in New York City and my parents had retired and were living alone in San Diego. My Mother and I have always had an incredible relationship and it was common for us to speak a few times in a day, everyday of every year. Our Mother and Daughter bond was unbreakable. About 4 years ago I began receiving late night calls from my Mother. She was confused, frustrated and calling herself a “dumb dumb.” Dad was asleep and had no idea his wife was awake. She did not understand what was happening to her. By now she had no memory of how to cook and prepare a meal, something that was second nature to a Mom of eight, grandmother and great grandmother.

As the calls for help continued, I knew what I had to do! I gave up my career in NYC to give back to my Mom, my best friend, who now needed assistance. Moving back into your parent’s home in your mid 40s was interesting. My father came from the generation of all work and provide food and shelter for your family. It was our Mother who was the nurturer. Needless to say, I was never my fathers favorite child, he had a lot to chose from and it never was me. I had hoped being the one child that stepped up and sacrificed to move in and help both of them deal with the devastation Alzheimer’s brings, Dad would finally “appreciate me” and I gain his respect. Instead he was very defiant and at 85 he believed Mom didn’t need help and he could care for her alone.

I immediately realized how much my Mother was able to hide the progression of her Alzheimer’s over the long distance. Toothpaste was being placed on the back of her toothbrush. Bleach almost watered the plants and after eating a piece of toast in the morning, she would immediately tell me she had none. I faced her night walks by being awakened to blood curdling screams of my name. I would find her downstairs of her home, crying, scared, not knowing what room she was in. This all greeted me in my first week of moving in.

Living and caring for her the next 1 1/2 years was a “blessing” I will cherish the rest of my life. One of the hardest jobs I have ever done but the most rewarding! We worked together to stimulate her mind, me hoping her memory would stay with her a little longer. Frustrated at first, she did learn to play solitaire again, practiced reciting all her children’s names, exercised and improved her eating habits. The results were phenomenal as she developed a renewed sense of life. 24 hour loving care made a huge improvement in her daily existence. It did come to me at a very large price, but I would do it again tomorrow for her.

I have read if there is dysfunction in a family it can be magnified by Alzheimer’s. This is sadly what happened to my large family. I will also say jealousy and greed played a role. I was kicked out of my parents’ house by an older brother and I have spent the last 24 months in Family Court fighting for my Mothers rights. All of these actions were done behind the back of the Matriarch of our family.

Because of my Mother’s Alzheimer’s, she was deemed incompetent by my Father and she was not allowed any say into her human desires or needs. She voices them, but they are ignored. The Court system could not protect her and Adult Protection Services believes being fed is all that is required of an Alzheimer’s person. I am an Adult child and have no baring over an Adult husband. At 89 years old my Father continues to be manipulated and lead down a very dark path. Forgiven by me as he has dementia himself and should never have been set up and put in the position he was.

All the while; my best friend, my Mother, my hero has been removed from my life. Alzheimer’s has “not taken my Mother’s last breathe,” in fact our bond was so strong, she today knows I was removed from her life. She does not understand why, but she continues to ask for me and wants to see me. My gracious deed which I would do all over again today was turned into false declarations and abuse of our Court System, all to remove a daughter from her Mothers life. I have asked my Father why, and he has no answer for me and hangs up.

So, I run this Marathon and fund raise with the hopes that a cure will be found so no other family will be destroyed from the diagnosis of Alzheimer’s. I advocate for elder rights. I am also very aware that unlike many of my teammates who’s Moms have been diagnosed with “Early Onset Alzheimer’s” I was not robbed of a Mother’s love and lives shared experiences. I have had my Mother, my best friend for a good 30 years more than they will....there loss is so devastating and unfathomable to me.

As I have trained these last 4 months, my teammates and coaches who unknowingly through there support, friendship and encouragement have helped me emotionally deal with my tragic family situation and battle I face every day to keep my Mother in my life. As I have learned; drive, desire, dedication and good health will get you to the Marathon. Drive, desire, dedication and DONATIONS will also lead to a Cure. As I cross that finish line Mom, I will continue applying that same drive, desire and dedication to our reunion. Alzheimer’s should never be used as an excuse to isolate or deny any human’s needs and desires. I am here to help, protect and advocate for you and others who have been put in such a tragic position.

This one is for the two of us Mom....I love you always, your good girl Carol. XOX