Tuesday, September 9, 2014

Spotlight - Deborah Alper

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


My father, Dave, David
He died Monday morning, but we started losing him 10-12 years ago. And the man he was before that is who I want to talk about today, the man who to my eyes was one of the most handsome men, who could do anything!
There are a few adjectives that immediately come to mind when I think of Dad; modest, humble, and loyal. And he was always a gentleman. Dad had real values in life, not the least of which was always to do the right thing, and treat all people with respect. This is a value he instilled in his children, part of who we are today.  
As most of you probably know, Dad was the youngest son of Jacob and Bubbles (Devorah really, my namesake). He was the only 'ours' of a 'yours, mine, and ours' family, just like I am. I always felt a special connection with Dad because of this.
Dad married at the young age of 17; he married Gertie Gray, and soon my brothers Mel and Neil were born. Tragically, Gertie died at the age of 34, and Dad was left alone with his 2 young boys, age 9 and 4. Two years later, thanks to auntie Ruthie's prodding, Dad attended Parents without Partners, where he met my mother Lottie Garfinkle Shatenstein. My mother had also lost her husband, Moe, father to my sisters Bryna and Elaine, and my brother Stan. And then they had me, and we were six kids, in the relatively small house on Luck Avenue.
I sped through the years just now to illustrate a point about my dad. He took on a huge responsibility in marrying mom, he went from a family of two kids to 5. And then 6. A huge responsibility for a simple hard working man. But he and my mother were a terrific couple. Bryna remembers how Mom started smiling again when they met - I think that says it all.
Dad worked at Margo printing for many years. I remember him leaving the house at 6:30 AM and returning 6:30 PM. Supper was on the table and dad talked about his day at the 'plant'. He was straightforward and strict, very strict I can tell you. That was because for him everything was black and white, no shades of gray. And he had a terrible bark, definitely worse than his bite, we used to say.
Despite dad working so hard, he always had his hobbies. He was of the first to have a Commodore 64 computer. Then there was his ham radio, a hobby he shared with his good friend Bill Letovsky. Dad had his ham radio in the car; it was not a CB, a ham radio operator looked down on a CB operator. You didn't have to learn morse code to use a CB he'd tell me. And from dad's radio in the basement he would contact amateur radio operators in Europe and Israel even, and he'd get so excited. And this was decades before the invention if the internet. I still remember listening to him send morse code messages, hearing 'da da dadit' from the basement (god knows what they meant), and his car license plate 'VE2 DMB', his call sign.
And camping, which dad had done with Mel and Neil, and to which he now brought the new larger family. And mom, new to this, somehow managed to keep the tent, and later tent trailer, as spotless as our home. I have so many fond memories of camping with my parents, first with some of my brothers and sisters, then mainly just with my parents.
There were bonfires with Hinda and Bill and Stuart Letovsky, and of course fun week-ends with Phyllis and Manny Kirk, Ellen and Andy and Diana. Dad sitting by the fire with his cupped hand full of peanuts, jiggling them back and forth.
It was at Margo where he met his great friend Manny. They worked together there, but more importantly they fished together, they camped together, and they had a beautiful friendship. Manny said that in all the years of friendship their only arguments were at work, never when they were camping or fishing or just having fun. Manny and Phyllis and their kids and the Alpers spent week-ends happily together.
To my kids and nieces and nephews, who knew Zayda as a somewhat strict and serious man, I wish you had seen him in those camping days. We swam together, we hiked together, and we visited many parts of Canada and the US on those camping trips.
In the winter, every Saturday for many years, Dad and I went to ski school; well I went to ski school and Dad came along as a chaperone because I was too scared to go myself. He was a great swimmer, but an even better skier I think.
And for Dad and Mom, as they grew older, they discovered square dancing, with Ruth and Maurice Miller and Hinda and Bill, Abe and Sharon Flower and Myra and Paul Heymann. They dressed in their crazy square dance clothes, mom in her crinoline and dad w his skinny tie.  They had a ball! At their 25 th wedding anniversary party they even put on an impromptu performance w some of their square dance friends.
My mother never passed her drivers test despite 3 attempts, thankfully (she would have been a terrible driver), so dad was the patient chauffeur accompanying her during all her errands, driving to whichever store had the best prices. After the errands, on Saturdays, we'd go to the Garfinkle grandparents on TransIsland and hang out with the cousins.
We'd pass chanukahs at my special auntie Ruthie's, there were visits at uncle Nat’s house, with Shelley and Michael, and seeing Bubbie and Zayda Shatenstein in Chomedy.
Family was everything to my dad. Losing mom almost 21 years ago was terribly hard on him. He would often say how lucky he was to have married 2 wonderful women, but how unlucky he was to have lost them both. “And wasn't it the man who was supposed to go first!”
Dad, though you have been slipping away from us over the years, you were still there to hug and to give a kiss. And you kissed us back, somehow, until a few months ago. Now you're really gone - we love you and miss you

Sunday, September 7, 2014

Spotlight - Jim Kilgore

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

I am running in memory of my father, Richard Kilgore, who lost his battle to Alzheimer’s in December 2013 at age 79 and to honor my mother, Heike, who showed amazing strength, courage and unselfishness as his primary caregiver (and is also a Cancer survivor).  It is appropriate the Marathon begins in Staten Island as my mother grew up there and then met my dad while both were attending Wagner College (Class of ’62).  So you could say that I got my start in Staten Island too.
First, I have a confession to make….. I like to ski, I like to golf, I like to go on vacation, I like ice cream, but I don’t like to run.  For every training run, every race my first thought is:   Let’s just get this over with as quickly as possible. Don’t get me wrong, I like just about everything else related to running, the challenge, the sense of accomplishment, the physical benefits, etc., but the actual running part I could do without.  So when I run, I need to have a really good reason to do it. 
My initial motivation to run 15 years ago was typical:  to impress a girl.  She decided to run the Philadelphia Marathon and, even though I had never run more than 2-3 miles, I was in.  Luckily, we completed the marathon and that girl became my wife, Tiffany.  It not only strengthened our relationship, but truly made me realize that you can accomplish more than you think possible given the right motivation.
We got married in 2000 and we finally won the lottery for the 2002 NY Marathon, but between putting our names in lottery and finding out we were in, we also found out we were expecting my son Griffin in February 2003.  I wound up running solo and it was an absolutely perfect and inspiring day and I was lucky to have both of them (technically) cheering me on at the finish.  I remember seeing some people were running to raise money for various charities and thought that was something I should do “someday”.   So now, I am finally fulfilling that promise to run again AND raise money for a worthy cause.
My Dad loved the outdoors: skiing, golfing, fishing, hunting, gardening, traveling, and helping people. He joined the Navy after graduating from high school in Fresno, CA and got to see the world.  His main passion was skiing.  After moving to Norwich in Central NY shortly after they were married, he joined the Labrador Mt. Ski Patrol.  He was on Patrol for over 40 years until a hip replacement forced him to stop.  Even then, he came back to be a ski instructor for a few more years and was able to teach Griffin at age 4 on his first time on skis just like he had done with me and my 2 sisters. 
That was just before Alzheimer’s robbed him of continuing the things he loved most, especially being “Opa” to his grandchildren.  He was a big kid and interacting with them brought that out more than anything.  Corny jokes, silly stories, goofing around, but also teaching were always part of any visit.   Even after the disease progressed, it seemed that being around the kids brought out the best in Opa.
Eventually, after being the sole caregiver to my dad and managing his day to day 24/7 care (which included meals, keeping track of multiple drug doses, processing medical claims, clinical trial info, doctor visits, home maintenance, etc.) all while watching someone you have loved for 50+ plus years slowly slip away, my mom had to make the difficult decision to leave Norwich and move to a facility that could help offer full Alzheimer’s care when needed.  So in April 2013, they were able to move close by to Meadowood in Skippack, PA about 15 minutes away.
It was great having them close but unfortunately things progressed quickly and my dad needed to be placed in the full care facility there by July.  Griffin (11) and my daughter Aubrey (9) were really great during that difficult time and always seemed to reach the real Opa during our visits.  Aubrey would play piano and Griffin would talk sports and get Opa to tell his jokes.  I am thankful we had that extra time to spend with him and to support my Mom before he passed away in December.
I didn’t know much about Alzheimer’s prior to my Dad being diagnosed.  Now I know too well that it’s the 6th leading cause of death that cannot be prevented, cured or even slowed.  I also know after seeing what it did to my dad, and reading the stories of my teammates, how devastating it is, not only for the person who has it, but to everyone who cares for them.  We are all running because we have been inspired by someone who’s spirit and life was cut short by this cruel disease.

So as I said, I don’t like to run, but running 26 miles seems easy compared to the day to day challenges presented by Alzheimer’s.  I think about that now every time I want to have an excuse not to run (too hot, too cold, too early, too late, too sunny, too cloudy, too windy, too tired, etc.) and it gets me out the door.  I still want to get it over as quickly as possible, but when the runs get hard and I feel like stopping I think about my mom who didn’t have an option to take a day off from caring for my dad, I think about Aubrey who told me during her Girls on the Run 5K that she wasn’t going to walk and she did it, I think about Griffin learning to ski and telling jokes with my Dad and most of all I think about how good it will be to finish the marathon with my family there supporting me and being able to point to sky and tell my dad that I helped increase awareness, research and funding to finally End Alzheimer’s.

Sunday, August 24, 2014

Spotlight - Erin A. Seaman

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

2014 my daddy and I
The summer of 2000 was an exciting year for me.  I graduated from high school with a class of 200 students and I was on my way to a college that my dad and I both visited with 7600 students enrolled.  I was going to be faced with some big changes/challenges and I couldn’t have been more motivated.  In July of 2000 my parents sat down my brother and I for a family talk (shoot, they found the evidence of the party I had last weekend). Well, not exactly.  My mom told us that my father had been diagnosed with an early onset of Alzheimer's Disease. As I processed what this all meant I looked up into his eyes and I saw fear.  I knew my life was about to change forever.  My best friend was about to lose everything at a slow or rapid pace, and there was nothing I could do to stop it.  My protector and hero was going to slip away from me and one day all our amazing memories would be gone.

Its hard to understand how this could have happened so soon to such a brilliant and active man.  My dad was an engineer, went on to law school, was in the Airforce, volunteered with the fire department, helped out neighbors on anything and everything, organize BBQs and hayrides for the neighborhood.  I was so angry and kept asking myself why.  But time was limited and I needed to stay strong and help out my entire family the best way I knew how.

In the summer of 2008 my dad asked me to sit with him.  I'll never ever forget one ofthe last meaningful conversation we had: 
"Honey, Im scared.  I don't know what is happening.  I need you to know I'm probably not going to be the daddy you thought you were going to have much longer.  You are approaching some real milestones in your life and I want you to know I am always with you, even if I'm not there physically".  I told him it was ok, that he is always going to be because he is forever within my heart.  I also told him to quite that kind of talk, that he will be fine, and we were never good at the sentimental stuff (I get my sense of humor from my father).  It was the second time I ever saw my dad cry.  He said "You are my strong girl.  You are the toughest person I have ever known and I am so proud to have raised you this way.  Keep going; you are going to change the world one day and if I'm not there to tell you just keep going and fight.  You need to take care of your mother for me.  You need to remind her its going to be ok and that I love her.  And you need to be strong at moments you want to cry and be angry.  But you need to keep fighting-- promise me you will keep going."


2012 my daddy and I
Twelve months later every child’s worst nightmare came true.  My mom suffered a massive stroke and my father fell while the ambulance took her to the hospital.   My mom recovered from her stroke thankfully, but my dad was becoming more weak and was down to 132 lbs (he’s 6’1).  The doctors told me I needed to make a decision that wasn’t easy; that I needed to preserve my mother’s health and put my father into a nursing home.  I visited 5 nursing homes and nothing I felt was good enough.  I was exhausted and depressed.  I didn’t feel anyone could care for him the way I could.  But by the 6th nursing home, I finally found his new home.  A team of wonderful nurses helped make him as comfortable and happy as possible.  He participated and speech and physical therapy, and visited with a neurologist and nutrionist once a week.  Things were great for about a year, and then he lost his ability to communicate, walk, and stand on his own. But I couldn’t lose him yet.  I learned along the way there was such thing as non-verbal communication.  We worked with that for a while; "squeeze my hand once for yes and two for no".  He knew if I touched his nose (we always rubbed noses) he knew I was there.  He would give me one squeeze of his hand.  This disease was not going to break the amazing father/daughter bond we have.

As of June 2014, when I went to visit my father in the nursing home on my 32nd birthday, he never opened his eyes.  He can barely eat even with assistance.  The food is becoming too much to swallow on his own and that’s food that's already pureed.  He cannot participate in physically therapy because his bones are too delicate and body too frail.  He is permanently confined to his wheelchair and on bed rest.  He can hear us (he always will) and thats all we can hang on to.  But every day for the past 14 years I have fought hard for him and will continue to do so for the rest of my life. 

My second family, Athletes to End Alzheimers
 Last year I ran my first marathon.  Not only did I complete a bucket list wish, but I met an amazing group of individuals that I now would be lost without.  Some of my team members have turned into my secondary brothers/sisters.  It’s the best thing I could have done for my family and myself.  I know my dad was there in every stride throughout the 5 boroughs, cheering us on the way he would at all my meets in high school.  If he could help all of my team members, he would but he has passed that along to me.  I will forever be there for this organization by increasing awareness and be another helping hand.  And of course, for a few good laughs!

Donation frame at my “sisters” wedding