SPOTLIGHT: Alfred Battista

Each week we will be picking 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)

Alfred Battista's Parents

My mom was diagnosed with early Alzheimer’s two and half years ago. She hosted Christmas Eve every year since as long as I can recall. My family along with my two brothers gather at my folks house each year. Including our kids and their spouses we total over 20! She does all the preparing. Being of Italian decent that includes a variety of pasta and seafood dishes. 2007 Christmas Eve preparation became increasingly difficult as she just couldn’t keep up with all that was required. She became very frustrated and depressed. That is when we took her for tests and she was diagnosed with Alzheimer's disease. She went from an incredibly smart and independent senior to one that has difficultly in doing and recalling the simplest day to day activities. She was an avid member of America Online until the age of 80 emailing her 9 grandchildren who were off at college daily. She would check the results of my NYRR’s races online and before I made it home would call me on my cell to congratulate me on my time!

It has been especially difficult for my Dad who is 88 since she literally did everything for him from “soup to nuts”: the check book, the savings accounts, the birthday gifts, retirement planning, cooking, housecleaning , you name it she did it. Now he has been taken to do all she has in the past. He is doing a great job but it hasn’t been easy.

Anyway she continues to amaze me with her incredible positive attitude and sense of humor. I have yet to see her down at any point during this process. I believe the medication she is on has helped. While there is no cure it has slowed the process.

I just hope it continues to help. That is why I’m involved with the R2R Team because I can see firsthand the benefits that research has provided and that with additional funding it can only speed of the process of finding a cure.

Since my writing last year my Mom's primary caretaker, my dad passed away last month. It seems his passing has accelerated her illness as myself and my brothers now have first hand knowledge of her difficulties. We are fortunate in that we were able to find a caretaker Mon – Fri while we all pitch in on weekends as she can not be left at home alone. We have already taken advantage of some of the wonderful services offered by Alz as we registered her to the "Safe Return" program. The recent developments in my family only reinforces my resolve to do as much as I can possibly do to help others who are in similar or worse off situations then us .

For me it's an honor to again be part of a very special Team "R2R" supported by an amazing group of coaches and support staff!

SPOTLIGHT: Jeffrey LeBlanc

Each week we will be picking 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)

In 2007, my grandmother was diagnosed with Alzheimer's disease. Watching her degeneration was sad and frustrating, but she was a strong and amazing woman until her passing in January of this year.

When I was younger, I fondly remember my grandma taking me to McDonald's for playtime and burgers. It's funny, but sometimes it's the ordinary moments in life that are most memorable. She is sweet, loving and thoughtful and always looked out for me.

In my grandma's final years, my parents were able to spend quality time with her in Florida. She enjoyed getting her hair and nails done and my dad's walks with her around a local lake. I had a chance to visit her each time I went down to Florida, and it was always a joy. Her strength was an inspiration to me.

I am coaching and running this race in memory of my grandma and my wife's grandmother (who also suffered from Alzheimer's). It's time to put an end to this nasty disease once and for all. It's time to run to remember.

SPOTLIGHT: Brian (Michelle) Hsia

Each week we will be picking 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)

This year, I will give my spotlight in the words of my sister, Michelle…

Life is about many precious moments of time, each person shares those moments with family, friends and all the acquaintances that he or she meets along the way. As our life lingers, we get older and over time our memory starts to fade, so we rely on pictures to recollect those precious moments shared together. 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, and this continues for years. That is the reality of what an Alzheimer’s disease patients goes through. Usually, the disease affects elderly people, although there are more and more cases of this disease affecting the youth.

In 2003, our grandmother was diagnosed with the Alzheimer’s disease; a disease that afflicts 5.4 million Americans. It is the 6^th leading cause of death in this country and of the top 10 diseases, it is the only cause of death to date that cannot be prevented, cured, or even slowed.

My sister, Michelle started running marathons in 2004, with 2 goals in mind: finish her first ever marathon and raise money for the Alzheimer’s Association. She did both, and then decided to try running a marathon in a different state (maybe even in all 50!) and dedicate each marathon to fundraising to find a cure for the Alzheimer’s disease.

In 2006, Brian ran his first marathon with her and decided to join the Alzheimer’s Association Junior Committee to hopefully understand more about the disease that afflicted our grandmother. After learning more about it, he made it his goal to have the Alzheimer’s Association as an official charity in the ING New York City marathon. In April of 2009, he succeeded in doing just this and now the Alzheimer’s Association is entering its 3^rd year as an official charity organization in the NYC marathon and raised well over half a million dollars. Not only has he run 3 NYC marathons (an additional 25 marathons in other states), but he has also motivated and train others to complete their first marathon and change their lifestyle!

In October of 2009, my grandfather, who was my grandmother’s caretaker, passed away. This was a very heartbreaking time for the both of us and our family because our grandfather was the stronger one—he passed so suddenly and left so quickly from our lives. His passing left our family with more responsibilities caring for my grandmother that eventually led to our family not being able to do it alone.

In February of this year, our grandmother succumbed to the disease and passed away…an 8 year battle came to an end that February afternoon. Our grandparents were loving, caring and helpful people. They always did the right thing, always cared for others and always were selfless. We have spent the past 7 years running in honor of our grandmother, but this year, we are running to remember the amazing woman she was, and the wonderful qualities she has left behind in both of us. For the Big Sur marathon, we have raised over $9,000 from generous support from our family and friends!

On May 1^st, Michelle and Brian set forth in running the Big Sur Marathon together. Out of all the marathons they have ran “together” but separately (Marine Corps, Outer Banks, Chicago & Honolulu) this would be their first marathon running together for the entire way. Brian helped his sister record her first Personal Record (PR) in completing her first sub 4 hour marathon to honor their grandma and say thank you to all of their supporters who have helped out for those previous 8 years.

We hope that a cure be found soon so that other families will not have to experience what so many go through daily.

For Brian’s post, please click here: http://trakmaniak.blogspot.com/2011/02/long-road-home.html

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.