Spotlight: Ray Ginther (Kristin Lyndecker, Brian Cunningham, Linday Sullivan)

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  Wednesday, Friday and Sunday for new updates on who will be spotlighted and get to know your teammates...(each person is picked at random) 

My name is Ray Ginther. While I am not running in the NYC Marathon, I have chosen to sponsor a sub-team of four runners named Team Marie 2012 that will be running for the Alzheimer’s Association. The reason that I have chosen to do this is because my lovely wife Marie was diagnosed with early onset of Alzheimer’s about a year and a half ago. Marie and I have been married for nearly 37 years. She is only 59 years old. 

Marie was born and raised in a small ranch town in central Utah. I was born and raised in Michigan. We met while I was working in Salt Lake City. Marie had started college but couldn’t afford to go full time so she took classes as a part time student when she could. In 1978 I took a job transfer to Chicago. Marie worked full time but managed to take classes at Loyola University-Chicago at night and on weekends because she was determined to get her degree. At that time she also started running in earnest and twice ran the Chicago Marathon.

In 1984 I was offered another job transfer to New York and Marie was enthusiastic about making the move. She admitted later that her dream as a young girl was to live in New York City. As always, she was working full time but still managed to take classes. Loyola was very accommodating in allowing her to transfer her credits back to Loyola and in 1987 they awarded her a degree. We went back to Chicago for the graduation ceremony. When I say “we”, that included her three week old son, our first child. Our second son was born in 1990

Marie always took care of her health. She ate healthy, exercised and was always busy with work, family, exercise and all the demands of city life. She ran the New York City Marathon three times.

Marie’s professional career flourished. She took a job as controller for Renaissance Technologies when there were only six employees. When she took early retirement 20 years later there were nearly 300 employees. Looking back, her decision to retire early was the best thing that could have happened to us. She left her office in April of 2007 and in the summer of 2007 we rode our bicycles across America. It was a seven week journey that started in Astoria, OR and ended in Portsmouth, NH. It was a life changing experience. 

Marie always likes to travel. We have done bicycle trips in many European countries including Greece. She has also done bicycle trips in New Zealand, Vietnam, Cambodia, Laos and Thailand. In 2010 we biked from Land’s End, the southern most point of the UK with the intention of ending up in John O’Groat’s, the northernmost point. We didn’t make it because when we got to Scotland, four days from the end, we found out my father was dying and so we cut the trip short. 

My father died at the ripe age of 94 and he had Alzheimer’s. Marie’s father had Alzheimer’s and he died in his 70’s.

In 2010 Marie started showing signs of dementia but was in denial. It was a difficult time for us because she thought people were trying to make her feel stupid. In February of 2011 we were bicycling in Laos. On our last day in Laos we found out her mother had died. That really had an effect on Marie. She couldn’t collect her thoughts enough to either give a eulogy or even tell her sisters what to say on her behalf. 

In April of 2011 Marie started to come out of denial and told me that “something was wrong with her brain.” That’s when we started the process of doctors, neurologists, cognitive tests, MRI and Pet scans. That led to the diagnosis of Alzheimer’s. Marie is taking the common drugs such as Lovasa and Aricept. She is also receiving off-label treatments of IVIG, rTMS and cognitive therapy. Being off-label, insurance will not pay for the treatments and they are very expensive. We are very fortunate that Marie’s professional success make it possible to afford them. While none of this will reverse the disease, we strongly feel that it has dramatically slowed down the progression. She remains confused but is otherwise healthy. She still exercises and we bike whenever we can. She is still a very beautiful woman and she is trying her best to live as normally as possible. The most heartbreaking effect of the dementia is that she has lost context of our relationship. At times she will insist that we she is not married. She will ask me if I have children or where I grew up. She has even asked me my name. I sometimes think she has compartmentalize me as five different people that all are named Ray. It tugs at my heart and makes me feel empty. 

As I mentioned, we have two sons. Ironically, the oldest son is currently pursuing a PhD in Neuroscience, a major he chose before there was a diagnosis. Our younger son is still in college and he got Marie’s good looks.  

We have been very fortunate and have already led full lives. Marie and I understand the merits of giving. It is really true that you get back more than you give. That’s why I wanted to sponsor this team. We have had some amazing travel experiences, things we could have never anticipated, due to connections we made through charitable giving. We are on the Board of Directors of an organization called Mercy & Sharing that has been operating in Haiti, and only in Haiti, for about 20 years. Mercy & Sharing has an orphanage with about 130 children outside of Port-au-Prince. These children were all abandoned and almost all of them came from the abandoned baby unit of the Port-au-Prince general hospital. They also operate three schools and a vocational program. 

http://www.haitichildren.com/

I want to give my profound personal thanks to the running members of Team Marie 2012. Kristin Lyndecker, Brian Cunningham, Linday Sullivan and Anyul Sanchez, thank you for for everything, especially for being friends!

Spotlight: Melissa McGinnis

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  Wednesday, Friday and Sunday for new updates on who will be spotlighted and get to know your teammates...(each person is picked at random) 

Over the years, I had often heard the old superstition “Deaths come in threes;” but had rarely stopped to consider the notion.  Unfortunately, over the last year, I found it to be true, as my family experienced a trifecta of loss in the months spanning Sept 2011-April 2012.  From the outside, few would draw a connection between the three, with one loss on my Dad’s side of the family (my Great Aunt Kate) and two on my Mom’s side (my Grandfather and my Grandmother).  However, as I reflect on the years that led to our recent season of loss, I see a very clear thread between the three:  Alzheimer’s (or dementia).  For that reason, when I run the NYC marathon (my first) on November 4 as a member of the “Run to Remember Team,” I really plan to run three small races, with one dedicated to my Great Aunt Kate, one dedicated to my Granddad Jim, and one dedicated to my Grandma Doris.

Part 1 - Miles 0.0-10.0:  A Brooklyn Block Party on Aunt Kate’s Behalf.  The first part of the marathon has to be dedicated to my Aunt Kate, not just because her battle with Alzheimer’s served as my first introduced to the disease, but because she spent many years of her life living in Brooklyn, the very borough we run through for miles 2-13.  During childhood family gatherings, I always remember my Aunt Kate laughing, sharing stories, enjoying the simpler aspects of life and jokingly planning “yard parties” with my mom. 

Aunt Kate first started exhibiting signs of Alzheimer’s disease in my teenage years.  It started small at first with an inability to remember where she had put her purse or her coat.  However, as time passed, the symptoms worsened, with periods where my Aunt would become convinced that her mother (who had long ago passed away) was waiting for her somewhere or that she needed to get to her job in the city.  Aunt Kate fought a >10-year battle with a disease that robbed us of her humor and her memory.  However, it was a battle that also taught us the power of great faith.  Kate forgot an abundance of things over those 10 years, but through it all, she could participate in Catholic mass, reciting prayers and singing hymns from memory.

Part 2 – Miles 11.0-20.0:  A Three Borough Tour for a Man Who Loved to Travel.  During the second ten miles, you cover the greatest number of boroughs, hitting Queens, Manhattan and the Bronx.  My Granddad would have appreciated that given his love of travel.  Along with his wife, my Grandfather managed to see 49 of the 50 states (only missing Oregon because his children were afraid for them to travel in the immediate aftermath of September 11), as well as several foreign countries. 

During my early 20’s, my grandfather began to exhibit signs of dementia, which many of us believe may have resulted from an undiagnosed/untreated stroke.  Slowly, a man who had always been quick with a joke, a kind word, a helping hand, began to withdraw and exhibit signs of confusion about people, places, and activities that had previously been very central to his daily life.  Given that I dealt with my Grandfather’s memory at an older age, I was more cognizant of the numerous small “deaths” our family endured with each little loss of his memory before his final passing on September 30, 2011.

Over my last few months training for this marathon, my thoughts have often returned to a concept raised during my Grandfather’s funeral service:

“I intentionally included the last part of verse 31 of chapter 12 in the second reading which then included Paul’s famous love chapter – all of chapter 13 of 1^st Corinthians…“And I will show you a still more perfect way.” (NRSV)…Paul then give us “a still more perfect way” to live together – love…Love that is unconditional love, mature love, love that does not lose patience, this love that does not keep a record of right and wrongs, love that gives for the sake of the other asking nothing in return – this is the more excellent way to live life together…In the years ahead, when I think of Jim Snarr…I will think of a man who tried to live a more excellent way.”  - Rev. James Utt

It requires a mature love to stay committed to your spouse for nearly 64 years, as my grandfather did.  It requires patient love to allow your granddaughter to spend an entire Christmas vacation roller-skating around the downstairs of you house because she is just that excited about her new skates.  It further requires unconditional love (and humor) to see beauty in that child wearing the exact same outfit everyday that Christmas (a jean skirt with Tinkerbelle on it that he affectionately deemed the “Stinkerbelle” skirt).  It requires a love that keeps no record of rights and wrongs to find humor in your grandchildren sneaking around the house “playing pranks.”  And, it requires a love that gives for the sake of others to serve your country in WWII and your community as a member of numerous civic organizations, a volunteer for the Winchester Memorial Hospital Follies, and an active member of Grace Evangelical Lutheran Church.

Training for this marathon over the last few months has certainly taught me “a more excellent way” to run, which should prove helpful in powering me through miles 11-20.  I can only hope that in the years to come, I emulate my grandfather in finding “a more excellent way” to live. 

Part 3 – Miles 21.0-26.2:  The Fight to the Finish for a Woman Who Taught us All a Little Something About Being a Fighter.  From a doctor’s perspective, my grandmother passed away April 2012 from her second battle with cancer.  From my perspective, she died of a broken heart, six months to the day she last saw my grandfather at the viewing we held before his funeral service.  So what does that have to do with the “Run to Remember” cause?  My grandparents stood by each other for nearly 64 years of marriage, raising three children, loving six grandchildren, traveling the world, and building a good life in Winchester, VA.  For the last 5+ years of that marriage, my grandmother loved and cared for my grandfather daily as his memory and health faltered, helping him maintain as much normalcy as possible in his daily routine. 

A few weeks ago, in a discussion about the marathon, an acquaintance told me, “You run 20 miles, and then you run the marathon.”  I have no doubt that the last 6.2 miles of the NYC marathon will ultimately prove more a test of willpower than a test of physical fitness.  It feels fitting to dedicate that final fight to the finish to the woman who taught two generations of strong-willed, driven women to fight for what they want.  Those final miles honor her for her first [victorious] fight against cancer years ago and her fight to keep my grandfather out of assisted living and serve as his primary caretaker for as long as physically possible.

I cannot wait to cross the finish line on November 4 in honor of these three amazing family members and all of those who suffer from the effects of Alzheimer’s.

Drink out of a water cup!

Spotlight: Alexis Versandi

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  Wednesday, Friday and Sunday for new updates on who will be spotlighted and get to know your teammates...(each person is picked at random) 

My mother was diagnosed with Alzheimer’s five years ago. It’s incredible how dramatically your life can change with a single piece of news. My grandmother died of the disease five years before, so I thought I knew what to expect when doctors gave our family the diagnosis. In actuality, nothing could truly prepare me for the loss of a parent. For me, and perhaps many others, the really torturous aspect of the disease is witnessing the passing of a loved one over an extended period of time - and there is little you can do. The helplessness is overwhelming.

My mother has always been there – an unwavering source of support, strength and devotion. My memories of her (and us) are still clear. I remember how she skipped (literally) with me to ballet classes. How when I was four she ran, in heels no less, down the streets of New York, carrying me to the doctor as I wailed due to a painful ear infection. I don’t remember the pain, but I remember hugging her neck as I bounced up and down as she ran, one of the only times I ever saw my mother’s pace increase past a leisurely stroll. I remember how she would bundle me and my brother up in the small hours of Thanksgiving morning in preparation for watching the Macy’s Day Parade outside. I remember how she baby-powdered my sandy feet after a day at the beach, how we would eat Smarties together during visits to London, and how we would discuss for long periods of time how to navigate childhood friendships, and later, boyfriend relationships.

For her those memories are no longer clear. Or if they are, they are buried somewhere deep inside and she is unable to communicate them. My last birthday, I explained over dinner what day it was, which usually would have resulted in her recounting the hours of labour and days spent recuperating in the hospital. Instead this time, there was a blank stare.

The memories of my mother are a stark reminder of how different things are and will continue to be. I know she will never see me get married, something that would have made her incredibly happy. I know that my future husband and children will never know how truly wonderful she was. And if I could do anything to bring her back, I would. But as I cannot, I will continue to hug her as many times as I can, hoping it has the same power to comfort us as it did before, and to commit myself to helping ensure that a cure is found for this horrendous disease and that support is given to those suffering.

This November I will run the New York City Marathon with team Run2Remember. While it won’t be in heels(!), it will be honoring all those affected by Alzheimer’s, especially my mother.

Spotlight: Judith Ormond

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  Wednesday, Friday and Sunday for new updates on who will be spotlighted and get to know your teammates...(each person is picked at random) 

My dad died at age 91 in May 2012 after eight years of struggling with Alzheimer’s.  He and my mom had an incredibly warm and loving marriage.  With each new development of the disease, my mom had trouble accepting the latest loss of skills.  He stopped driving long after he should have.  She bought him an ID bracelet long after he wandered off.  She hired care givers long after there were too many calls to the police to help pick him up after a fall.   In the end, he died peacefully at home with most of the family surrounding him.

He was a violist with the Cleveland Orchestra for more than 40 years, vehemently resisting retirement.  I think he was 77 when he retired.   His love of music was always foremost in his persona.  Music was part of our family language. He and my mom met in England during WWII where she was a refuge from Czechoslovakia and he was playing clarinet in a dance band.  

I, myself, became a musician.  I retired from my position as piccolo player with the Milwaukee Symphony, a year ago.  Running, for me, has been the greatest stress reliever.  I have done several marathons, but no marathon would be more meaningful to me, than doing this one in memory of my dad.  Although I have to have injections in both knees due to cartilage loss, and sporting a few years too many, I will mentally sing a little Mozart or Mendelssohn as I jog/walk through 26.2 miles for Ed Ormond. 

Spotlight: Farron McIntee

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  Wednesday, Friday and Sunday for new updates on who will be spotlighted and get to know your teammates...(each person is picked at random) 

This is my second year with Team Run to Remember. I have a family connection to Alzheimer’s (my grandfather passed away with dementia, my great uncle passed away with Alzheimer’s disease and my great aunt currently suffers from vascular dementia). While training last year, I was completing my Ph.D. at NYU School of Medicine. My thesis project involved identifying biomarkers and risk factors for Alzheimer’s disease.  This research will be applied to developing techniques for early detection and/or developing therapies. Grants from the Alzheimer’s Association supported my thesis project and allows the work that I started to continue even though I have graduated and moved on from the lab.  I was actually writing my thesis while I was training and completed all requirements about 3 months after I completed the marathon. Now officially a “Dr”, I live, work and train in St. Louis, MO. My current work is involves identifying sources of neuro-inflammation, which can be applied to Alzheimer’s disease treatment.

The Alzheimer’s Association has played such an important role in my life (I spent 5.5 years working on my thesis project) so being a member of Team Run to Remember is a way for me to give back, while honoring my family members and the friends of families of those that support me. I have also made so many amazing friends on the team and so I also wish to honor them and their loved ones! Alzheimer’s disease is a societal and public health crisis thus I feel it is important to continue to raise awareness for Alzheimer’s  and bring attention to the pain that it inflicts on patients and the people that love them. 

Spotlight: Erica Shreck

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  Wednesday, Friday and Sunday for new updates on who will be spotlighted and get to know your teammates...(each person is picked at random) 

At five feet tall with silver-gray hair, my Grandma Ruthie appeared unassuming at first glance; yet, her enthusiasm for life and love for her family and friends eclipsed her small statue and continually made her a big presence in any room. The image I have forever ingrained in my mind is her standing in the kitchen, pots and pans brimming with her best recipes, on the phone catching up with a friend, working on her near complete crossword puzzle, framing pictures from the latest family gathering, while also ordering my Pop Bill to take out the garbage. How she seamlessly juggled it all never ceased to amaze me. Pop Bill, her lifelong love and effervescent counterpart, rounded out their dynamic duo and their 50+ years of marriage and devotion to each other, their children, grandchildren and friends continues to inspire me. We always looked to Grandma and Pop as the unifying thread tying our family together.

When Grandma Ruthie slowly started to forget where she left things around the house, if she had made dinner or done the laundry and began asking the same questions over and over, the family’s confusion, concern and fear became increasingly palpable. She initially worked to compensate for her difficulties, but as the disease progressed and her memory and insight deteriorated, she sadly slipped further and further away from the bright, forever multi-tasking, Grandma Ruthie that we knew so well. My family tirelessly worked to keep her at home with Pop Bill, yet even with a home health aide and then a move to an assisted living facility, her worsening condition left us in a state of constant worry. The worry and fear culminated when Pop Bill received a phone call saying that Grandma Ruthie had fallen and needed to go to the hospital. The aftermath of breaking her hip, surgery and countless days in the hospital took an irreversible toll on her strength and gusto. Her rapid mental and physical decline following the fall and the decision to have her stay in a rehabilitation nursing home were difficult to digest, as it seemed so incredibly unfair that our once vibrant, independent Grandma Ruthie was relegated to life in a wheelchair, unable to attend to her needs or remember her family. 

The night before Grandma Ruthie passed away, my brother and I visited her at the nursing home, just as our family and friends did every day, feeding her dinner. While she may not have remembered our names, there was recognition in her face with a smile when we sat down. I continue to find solace in the fact that while this horrible disease stripped her of many faculties, it never took away her contagious smile; for that my family and I are forever grateful.

The brave smile with which she faced this debilitating disease, coupled with the unwavering family support during those tough years, has inspired me to become a larger part of the fight against Alzheimer’s disease. In addition to multi-tasker extraordinaire, she was affectionately known as “Ruthless Ruthie,” because of her lovable stubbornness and drive to succeed. The opportunity to run with Team Run 2 Remember and ruthlessly fight against Alzheimer’s disease fittingly celebrates the amazing wife, mother, grandmother and friend that she was.

I look forward to running for Grandma Ruthie and the countless of other families affected by Alzheimer’s disease on November 4^th. 

Spotlight: Trish Sullivan

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  Wednesday, Friday and Sunday for new updates on who will be spotlighted and get to know your teammates...(each person is picked at random) 

My name is Trish Sullivan and my story is my mother’s story. My mother grew up on a farm in Northwestern New York and was always a very strong, capable woman.  She joined the Navy after high school graduation to start a new adventure and chapter in her life.  My father just happened to be a marine stationed on the same base as her and eventually convinced her to go out with him.  After what could only be called a whirlwind romance of 6 months they were married on base and looked forward to civilian life together.  Within a few years my brother and sister were born and I followed after just over a 5 year hiatus.  It is good being the baby of the family.  Like many marriages it had its ups and downs over the years, but they managed to make it last for 38 years until my father passed away suddenly of a heart attack.  Mom took it (as did we all) very hard and she seemed to dim after it happened.  Over a few years she seemed to bounce back, but never fully returned to the woman I remembered.  I now wonder if this is when this horrible disease was starting to rear its ugly head.

During a visit to Houston she was here to see me run my very first marathon - The 2001 Houston marathon.  Later that year she decided to move near me in Houston, so I could keep an eye on her and help around the house when needed.   Things seemed to going along just fine until late 2008.  I noticed she was getting distracted and repeating a few things over when I would come to visit.  As luck would have it in early 2009 I had some changes in my personal and work life that made me stop and take a better look at mom’s behavior.  A failing thyroid diagnosis and the implantation of medicine seemed to do wonders for her for several months, but something still wasn’t quite right.  It was time to go see the neurologist and see if my worst fears were coming true.  Her mother had been diagnosed with Alzheimer’s disease and the legacy would continue with my mother.   

One thing should be noted about my mom.  She is 5’8” and built with a very thin frame.  (Something that seems to have eluded me and my siblings) This is a great combination health-wise until you see all the side effect notes on medicines about increased issues with individuals weighing less than 115/110 pounds.  With so few drugs currently on the market she is unable to take any medicine to slow the progression because of this and can only take Exelon a cognitive enhancer.  It helps, but I can slowly see her fading away before my eyes and I see the light in her eyes get a little dimmer every few months.  It is hard switching from the role of being the baby of the family to more of a parental role for my mom.  One bright spot is her favorite canine companion, Sam.  He keeps an eye on her, makes her take breaks when working in the yard and made their walks shorter and shorter to make sure they made it home as she became more confused.    

I have been a runner off and on since 1999.  Mom has always followed my races around the US and the crazy costume one in France.  Running helps me deal with the daily stresses and my anger at this disease.  I run this race for her this year and for all the other daughters that are losing their mothers to this horrible disease.  For right now I know she remembers I run marathons, but too soon in the future she won’t and there is nothing I can do to stop that from happening.