Friday, October 19, 2012

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!