Monday, August 31, 2009

SPOTLIGHT: Tracy Heller

SPOTLIGHT: Tracy Heller

I wanted to run the marathon for the Alzheimer's Association because of the risk of Alzheimer's to all my family members. My great-grandmother and both her sisters suffered from Alzheimer's. While I was not yet born when this occurred, and have been fortunate enough not to have experienced Alzheimer's first-hand, the risk to my mother and her three sisters is great, and my entire family has been involved in fundraising for Alzheimer's in the hope that a cure is close.

I decided to run the NYC Marathon because I love to run, but have never before committed to a marathon. I also LOVE the City of New York, and I thought there was no other city I would rather be the backdrop to my first marathon experience. I can't wait!

Saturday, August 29, 2009

SPOTLIGHT: Rachael Bachleda

SPOTLIGHT: Rachael Bachleda

My mother, Mary Lou Thompson, was diagnosed with Alzheimer’s disease two years ago at the age of 61. I had seen signs for at least four years prior to her diagnosis and at first my family dismissed my concerns and told me not to worry. After awhile my mother was also noticing these alarming symptoms and she became terrified by what they might mean. You never want to think of your own parents as being scared, but she was; it was a painful to see it.

Although there is currently no cure for Alzheimer’s, I knew that ignoring the problem would not make it go away and that if there were clinical trials available, then we had to get her involved with them as soon as possible. In 2007, we all went to the Memory Disorders Clinic at Columbia University, where she was ultimately diagnosed. It was very difficult to finally face the problem but it also served as a reminder of what being a loving family is all about.

It has been most painful to watch my mom’s personality change. My mom was a voracious reader, finishing several books a week alongside her daily newspaper dose. She loved to spend time talking about current events with her many friends. Today, she has trouble reading and conversing in a group setting. She is loosing touch with her friends because she is embarrassed by the diagnosis.

In the last two years, while her condition has continued to deteriorate, our ability to deal with Alzheimer’s as a family has greatly improved. One of the reasons for this is the New York City Chapter of the Alzheimer’s Association. My sister and I have attended the educational meetings and met with the social workers that specialize in helping early onset patients and their families. We learned strategies to cope with the changes while gaining a better understanding of what is physically happening to her brain. I also joined a wonderful support group for daughters of Alzheimer’s patients. It is nice to be able to meet and spend time with people who understand exactly what I am going through.

One of the many terrible things about Alzheimer’s is its impact on the caregiver. Watching my mom’s disease progress at such a young age has been hard on the entire family but seeing the impact on my dad’s life is especially challenging. My dad, a very healthy and active 62 year old, had recently retired in order for them to begin the exciting “Golden Years” that lay in front of them. Instead, he spends these times as the main caregiver, watching after various responsibilities for my mom. She needs help with many daily activities. I know that he would not have it any other way. I hope that when it comes time for me to take care of my husband in our golden years I can do as good of a job as my dad does for my mom. I am running in honor of both of them.

Running has helped me get through the last several years. I feel that the constant, rhythmic motion of my feet hitting the pavement helps to clear my mind, relieve my emotions, focus my thoughts and motivate me to continue being the most supportive and helpful daughter that I can be . I feel that caring for an Alzheimer’s patient is very similar to running a marathon in that it requires a deep level of commitment and discipline, it will be very painful at times and it is a long process that you plug away at both day in, and day out. I am honored to be running my first marathon in the city I love on behalf of my mom and dad and the millions of patients and caregivers who run their own Alzheimer’s Marathon everyday.

Thursday, August 27, 2009

SPOTLIGHT: Sharon Clott

SPOTLIGHT: Sharon Clott

I'm running on Team Run 2 Remember in honor of my grandmother, in memory of my great aunt, and for the millions of people affected by this disease and their caregivers. I joined the Alzheimer's Association Junior Committee in March 2008. In June 2009, I became the Community Service Chair for the committee, which means I coordinate volunteer trips to visit Alzheimer's patients in New York. I originally joined because I was looking for a support group. My Great Aunt Jen passed away from Alzheimer's Disease in January 2008, and her sister, my grandmother Bubby Rose, was beginning to show signs of memory loss, so I knew Alzheimer's was imminent.

By that summer, she didn't recognize me anymore.

My grandmother used to be a caterer for the Beth Judah congregation in Ventnor, New Jersey. She was an amazing cook, and I would look forward to her cookies and macaroni and cheese every time I saw her. She doesn't cook anymore. Now, she barely eats. I look at her and wonder if she even recognizes the aroma of matzoh ball soup—her recipe, only made by my mother. When I see her, she tells me that "you're fine" and that I look like a nice girl. She tells me that I wear too many bracelets and that my hair is messy and looks awful, but I take her (ruthless) honesty as a compliment. At least she's paying attention to me. And at least I'm a nice girl.

My grandfather is her caregiver. They're high school sweethearts, married since 1942, right before my grandfather went to fight in World War II. He takes her camping in their motor home, traveling from New Jersey to Florida—two octogenarians just trotting along, one with Alzheimer's, one being the caregiver. He doesn't go anywhere without her anymore, now that she has the disease. At 88-years-old, he's had to learn how to cook, clean, use a washing machine, and learn every basic household duty for the first time. When he called my mom to ask her how to cook an egg and heat something up in the microwave, it really hit home how much a caregiver's life is affected as much as the person diagnosed.

I think about how their situation is similar to what happened with my Aunt Jen. The first sign Aunt Jen had Alzheimer's was when she took a drive and forgot how to get home. Then she couldn't put words together and it was hard for her to express anything that she was feeling or seeing. But she was a lovely woman, even throughout the disease. I would tell her about what I was doing in New York and she would listen and smile. Even though I knew I she had lost herself, I never felt that I truly lost her.

That's why I'm running—for my Aunt Jen and my Bubby Rose. For my Poppy Hy, my grandmother's caregiver, and Aunt Naomi, who acted as my aunt's caregiver and sister. And I'm running to put an end to lost memories. Because there are just too many beautiful people in this world to forget.

Tuesday, August 25, 2009

SPOTLIGHT:Maura Carle

SPOTLIGHT:Maura Carle

Running the NYC marathon has always been in the back of my mind as a goal I would one day achieve. I assumed I would do it one day, but every year seemed to not be the right year to run the 26.2 miles. I was scared that I wouldn’t be dedicated enough or have the strength to complete the runs.

This past spring I went for a jog where I live in Riverdale, NY. While running, I thought of my grandmother, Essie Devine, as I often do running because she lived in Riverdale for much of her life. My routes will often take me by my grandmother’s apartment or parks and restaurants that I visited with her as a child. I thought about how my grandmother was the sweetest and warmest person I have ever known. I thought about how when we would visit her, her face would just light up with pure joy and happiness to see you. She was such an incredibly loving person that it was impossible to be even slightly upset when around her. I decided that I would have the strength to run the marathon if I did it in her memory.

My grandmother passed away in 2004 after suffering from Alzheimer’s disease for about 6 years. It was really hard for my entire family to watch her become so confused and scared. Her face would no longer light up when you visited, but rather give you a blank stare. As with any terminal illness, my family felt helpless and hopeless in watching my grandmother slowly deteriorate. I’m honored to run the marathon on team Run2Remember because they are giving families hope that Alzheimer’s disease will one day be cured.

Sunday, August 23, 2009

SPOTLIGHT: Comanche Weaver

Eleanor Roosevelt wrote: “You must do things you think you cannot do.”

With this as my mantra, and as a member of the Alzheimer’s Association’s Team Run To Remember, I have committed to run the 2009 ING New York City Marathon on November 1^st. I am running in honor of my mom, Manche, who is battling this heart-rending disease.

For those who have not had the privilege of personally knowing my Mom over the years, I proudly share with you the fact that those, whose lives have been touched by her, consider her to be a woman of gentle spirit, with a gracious smile for everyone. Today, my father, myself, family and friends, sit helplessly by watching this ruthless thief, called the Alzheimer’s disease, slowly and mercilessly steal her away from us. For my Dad, life has become a round-the-clock vigil; an act of stoic devotion to his wife of more than 50 years, ensuring that my Mom retains a sense of dignity, happiness and peace.

Running 26.2 miles is certainly a great accomplishment, but it pales in comparison to enduring this painful journey that many have called “the long goodbye”.

I remain overwhelmed and touched by the ongoing support I’m receiving from friends and loved ones. It is amazing to me how many people in my life have also been affected by this horrific disease. I am so thrilled to be a part of New York City Run To Remember Marathon Team. I take great pride and comfort through our collaborative efforts, we will raise not only funds, but awareness to one day eradicate Alzheimer’s.

Friday, August 21, 2009

SPOTLIGHT: Lucia Domville

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 New York City marathon. Check in each day or week for new updates on who will be spotlighted and get to know your teammates...(each person is picked at random)

SPOTLIGHT: Lucia Domville

I ran NYC marathon back in 2000 and found it to be one of the most rewarding experiences in my life. To be a true New Yorker, you need to be a runner and to really get to know New York and New Yorkers you need to be able to run a marathon, see the streets, the people, the fun, the care and the support. When I finished after all months of training, commitment and soared muscles, I said to myself that I would want to do another marathon some other time in my life. After a child and aging, I revisited the idea and applied for the NYC lottery twice but got rejected… In talking one day about marathon with my boss, Anne McBride, she told me story of how she and Lou Ellen had discussed getting marathon spots to run for the Alzheimer NYC Chapter Association.

Before I knew it, the Alzheimer’s Association NYC Chapter had landed 50 marathon spots and I was already involved to help the organization raise its visibility by hosting an opening bell at the NYSE. As a financial communications consultant, I had close relationships with the Exchange and was able to secure the opening bell on June 8^th. That day we hosted a nice breakfast at the Board room and met many of the board members of the Alzheimer Association; it was a very exciting day for all and a good opportunity to be seen around the world. Next step was to commit myself to running again and I applied to NYC marathon.

Every day I get up, even when I don’t feel like it, either because I’m too tire or soared or rather be having a nice breakfast with the family, I remind myself, I am running to make a difference, even if it is just a small difference. Running has always given me the possibility of thinking, or coming up with new ideas for projects or solutions to problems. In the many days I have been running to train for this marathon, I have also asked myself why am I running, not only the marathon, but my connection to the Alzheimer Association, other than Anne McBride. Only a couple of days ago I was able to come up with an answer… in my family we also carry a different source of medical hardship. When we were growing up, we had an accident and my 14-year old sister was in comma for months and hospitalized for over a year. Her recovery was very slow, she, at 15, began being a baby and had to learn everything all over again, years went by and progress slowed down; the brain damage was so severe she has never been able to see or walk, it has been only her memory and the ability of having thoughts and ideas what has kept her going and alive all these 21 years, and hopefully all the support of the family. The family, the support, the love does make a difference, we all suffer and we learn. I am also running for her memory.

Monday, August 17, 2009

SPOTLIGHT: Tricia Amy

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 New York City marathon. Check in each day or week for new updates on who will be spotlighted and get to know your teammates...(each person is picked at random)

SPOTLIGHT: Tricia Amy

I got involved with the Alzheimer's Association and joined the Junior Committee in 2004. My mother, Ina Griffin Amy, had suffered from Alzheimer's and passed away in April of 2004. My reason for getting involved with the chapter at that time was really to do something in her memory. I only wish I had known about all the great support services the chapter offers while my mother was alive. We could have really benefited from them.
My mother was a truly amazing woman. All who knew her would agree. She was born in Long Island, married shortly after college (although she wanted to be a nun) and moved to Larchmont, NY when she married in the early 1950's. My mom had my 7 brothers & sisters with her first husband, Bill Griffin, before he died of a sudden massive heart attack when they were young. She suddenly found herself widowed in the early 70's with 7 children and thankfully, a lot of faith. My mom had developed a strong faith in God when she was young and to her dying day she said it carried her through everything. She was truly pure of heart. I remember she used to say that "maybe Heaven is right here."

That is how she lived her life. So....she was an avid tennis player and a few years after she was widowed, my mom met my father (who was a 35 year old bachelor) playing tennis. My dad fell head over heels in love with her (yes, and she had SEVEN children) and they married. They had me 2 years later, when my mom was 47. Yes, 47. Did i mention she was an incredible woman?? My mom developed dementia in her late 60's. Unfortunately, my father became very ill at the same time with Parkinson's and dementia. He passed away in 2002 and after his passing, my mom developed full blown Alzheimer's. I'll never forget my mom standing in our living room one afternoon, putting on her coat and purse and telling me that "she was ready for me to take her home." Being that we were home, when I asked where she meant exactly, she proceeded to tell me her childhood home. We were blessed with wonderful caregivers and to them I will always be truly grateful. I spent a lot of time with my mom as she entered final stages of Alzheimer's. She couldn't speak very well at the end, and often would get combative ( a trait she never possessed before the disease took hold) but I would get comfort out of her smile and hugs. My mom suffered a massive heart attack and died on her way to the hospital. It felt like some what of a blessing to us at the time, as she was suffering so much in the later stages.
I never, ever dreamed of running a marathon. I still can't believe I'm doing it!!! I'm running in memory of both of my parents. They loved and supported me so much and it feels great to be doing something for such a wonderful cause in their honor!

Sunday, August 16, 2009

SPOTLIGHT:Coach Brian Hsia

Memory is a way of holding onto the things you love, the things you are, the things you never want to lose. ~ The Wonder Years, TV show.

Life is a precious moment of time, within our moments we create our own set of precious memories that we keep for our lifetime. Our friends, our family and all the acquaintances that we meet along the way, we remember and keep within our memory. Over time our memory starts to fade, but that comes with age. We rely on pictures to recollect that precious time we shared together or what we were doing at that precious time or event.

Now, imagine yourself waking up one morning to find that you do not know who your friends are, who your family members are and most importantly, who you are. These are the realities of what the Alzheimer’s disease does to a person. Usually, the disease affects elderly people, although there are more and more cases of this disease affecting the youth.

Many people will say that they run for fitness, for a goal and for stress relief. I do it for all those reasons and more. I run marathons to see the country, to experience the culture and indulge in the architecture within these cities. I take pictures of these moments to capture my journey of the 50 states across America.

I have been looking at my right side more often at the band that states, “A reason for hope.” This band means more to me this year than any other year that I have raised money for the Alzheimer’s Association.

My grandfather, the caretaker for my grandmother for the past 5 years that she had Alzheimer’s, had passed away. My family had not expected this, where all this time we had been worried about my grandmother who had been affected by the Alzheimer’s disease. Sad to say, but we had told my grandmother that her husband had passed away and her response was: “If he had to go, he had to go.” During the funeral, my grandmother had no reference or clue whose funeral she was attending.

Just recently, I visited my grandmother and my cousin’s recently married wife was there and she asked who she was. My cousin replied that it was his wife, my grandmother asked if she was married, he replied yes…and then she asked where my grandfather was…(read on)…

The disease is a horrible disease which I would never want anyone else’s family to endure.

Friday, August 14, 2009

SPOTLIGHT: Natalie Harrison

SPOTLIGHT: Natalie Harrison

Growing up my younger brother and I often looked forward to going down to Florida to visit our grandparents. But, at the age of 13, my grandparents moved from Florida to my hometown after my grandmother was diagnosed with Alzheimer’s disease. As time progressed, my grandmother had a hard time remembering who we were and often seemed to be disoriented and scared.

After a few years, my grandmother required more attention and assistance and was moved into a special memory-impaired unit. This was the first time my grandparents had ever been apart for any extended amount of time since they were 17 years old. It was definitely heartbreaking to see the effects on my grandfather. He passed away a few years later. One of the hardest parts of his death was that my grandmother was unable to remember that she had even been married.

In the years that followed, my mother would spend time with my grandmother every day until she passed away in October of 2003. Watching my Mother, I have definitely learned a lot about the importance of patience, love, hope and family. I am running the NYC Marathon in honor of my grandmother’s memory and in the hope that one day we can find a cure for this disease.

Wednesday, August 12, 2009

SPOTLIGHT: Maritza Arroyo

SPOTLIGHT: Maritza Arroyo

My Mother was diagnosed with Alzheimer in her early 60’s. This was devastating to my family and me. I could not understand it. My mami the most generous and heart warming person in my life was being taken from me. It was very painful to see my mother exhibit states of confusion and forgetfulness from one moment to the next and my mami trying very hard not to show it. She would mask her forgetfulness by singing her favorite childhood songs. So, every time I visit my mom I sing with her. She loves it! Her eyes light up, she shakes her shoulders, moves her hips, and she does a little dance. I love that the most because for that brief moment I know my mom is happy. My father is suffering the most. I can see the sadness in my dear father’s eyes has he watches my mother become progressively worse with each passing day. Seeing this is heartbreaking.

I participated in last years memory walk with my mom and dad. I was so inspired by the wonderful people that walked and the fabulous volunteers that made us feel so welcomed. I felt as though I was home. People who understood my family’s plight were around me united as one. It was on that day, I thought it be great if the ALZ organization ran as a charity in the NYC marathon. I said to myself, I would definitely run it. I sent an email inquiring about the charity’s participation in this year’s marathon and my willingness to run. Much to my surprise, I got an email and I made the cut!

Training for the NYC Marathon has already provided a positive impact, my dad’s eyes light up! He is as excited for me as I am. The training allows me to channel my emotions from my mom to the race itself.

I am running to bring awareness to the public but mostly as a therapeutic way of handling, the devastating affects this disease. I am running in honor of my mother and father. I am grateful to be their daughter and I humbled by the generosity and support from family and friends.

Monday, August 10, 2009

SPOTLIGHT: Andrew Kent

SPOTLIGHT: Andrew Kent

After I was not selected for the NYC Marathon this year, I casually perused the charity websites to see if there were any groups that were a fit. While it became clear that I connected with Run2Remember because my grandfather had suffered from dementia prior to his passing a year ago, I was unsure of whether I would have the ability to raise money, train, and focus on day-to-day life at once.

A few days later, I was struggling through a long run. As I ran out of energy, I thought about the Alzheimer’s Association and how it would feel if I ran the marathon in remembrance of my grandfather. I felt overwhelmed and pushed onward. It was evident that I needed to do this.

My grandfather, Dr. Geoffrey Kent, was a professor of pathology, who began his career in the Netherlands and England during World War II. In May 1940 he helped 60 Jewish children escape Amsterdam through the Kindertransport, mere hours before the Nazis invaded the city.

Later that year, he helped care for the wounded during the Manchester Blitz. He eventually brought his family to the U.S. and had a successful career and family life. A clear intellectual, he pushed my educational growth every time I saw him. His influence led me to my current work in public health.

Running the NYC Marathon is the very least I could do for someone who gave so much to me and my family. I will think of him in every step of the 26.2 miles I run.

Saturday, August 8, 2009

SPOTLIGHT: Pat Ostrander

SPOTLIGHT: Pat Ostrander

When people ask why I am running a marathon to raise money for the Alzheimer’s Association, I usually explain my family history and attempt some sort of answer involving statistics and an acknowledgement of how crazy I must be to consider running that far. But what I should really say is that I simply hate Alzheimer’s. I think of it as a blatant and unremorseful thief that has already stolen from me and may return again to show me that it can steal from anyone at any time. I know that running won’t allow me to catch this particular thief but I like to imagine that I am at least tailing it enough to make it nervous.

I don’t remember my great-grandmother because she was in a nursing home suffering from Alzheimer’s from before I was born. But I’m still angry that Alzheimer’s stole my grandmother in 2007. She had a green thumb and was a great cook. Unfortunately
for my cousins who hated them, my grandmother grew beets in her garden and cooked them just for me because I loved them. She also made my favorite molasses cookies whenever I would visit.

Towards the beginning of her illness, she made me a batch of those molasses cookies and gave me a box full to take back to college with me. Then she forgot that she had given them to me and gave me another box. It was a bittersweet moment. I loved those cookies and was grateful for their abundance but I knew she would likely never be able to make them again.

I’m running because I don’t know what else to do, because I don’t want Alzheimer’s to steal anyone else from me, and because I don’t want any other grandchildren to have to miss out on any of grandma’s cookies.
Follow Pat's Blog HERE!

Thursday, August 6, 2009

SPOTLIGHT:Laura Charecky

SPOTLIGHT: Laura Charecky

I'm running for my great grandmother and my husband's grandfather. I was young when my great grandmother was struggling with Alzheimer's and she lived in Illinois.

We would visit a couple of times a year. I remember visiting her once and we had so much fun playing and reading stories. The next time we visited her, she didn't remember me and I could not understand why. How come we had so much fun together the last time I saw her and now she could not even remember my name? I was extremely distraught by this as a small child. Even though I was small I can remember the look on her face when I ran into her room at the nursing home... complete confusion.

I was training for last year's marathon when I found out I was pregnant with my 3 month old son Alexander. I did not run last year, so I wanted to make this run extra special by raising money for Alzheimer's research so that hopefully Alexander will never have to see that look of confusion on any of his loved ones.

Tuesday, August 4, 2009

SPOTLIGHT: Alile Eldridge

SPOTLIGHT: Alile Eldridge

In January 2009, I decided to start running on a consistent basis. I joined New York Road Runners, and set out on a journey to make myself marathon ready by 2010.

Running a marathon has been a goal of mine for quite some time, so I decided to take part in the 9+1 program (run 9 races, volunteer at one, and you are guaranteed entry into the marathon for the following year).

I regularly attend a support group for young adults who have a parent suffering with Alzheimer’s and other forms of dementia. The group is one of many support groups in NYC organized by the Alzheimer’s Association. I shared my running goals with the group, and explained how I have seen a positive impact in my ability to deal with the emotions, and stress of seeing a loved one go through such a devastating disease. Once I learned about the charity team at the Alzheimer’s Association I was intrigued to learn more. I did some research, found the team application and decided running for this cause was something I needed to be a part of.

I had a bunch of nerves after my application was submitted! What if I am accepted? Can I pull this off in such a short period of time? Can I be marathon ready in 4 months? Can I raise at least $3,000 in a recession? Yes. I. Can! I have so much inspiration to draw from. Running the marathon is a tangible way to help battle a disease that has already taken my grandmother from me, and slowly taking my father from me.

In 2006 my grandmother passed away due to complications from Alzheimer’s at the age of 89. She suffered through the disease for nearly 15 years. My father was diagnosed with dementia two years ago, but more recently diagnosed with a specific type of dementia called Lewy body dementia (LBD). LBD shares characteristics with both Alzheimer's disease and Parkinson's disease. Like Alzheimer's, it causes confusion. Like Parkinson's, it can result in rigid muscles, slowed movement, tremors and visual hallucinations. Both cases have been heartbreaking to witness first hand.

I am running to help raise awareness about a disease that has forever changed my family. I am so grateful to run in honor of my father and in memory of my grandmother.

Sunday, August 2, 2009