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.  

Spotlight: Kathleen Van Cleve

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) 

I think, on reflection, that I’m a person whose basic good luck over forty years wrecked my notion of what is “fair.”  Things came easily to me, mostly; I’ve had a bunch of jobs, with accompanying failures but more often successes; I’ve had good health - that includes the running of three NYC Marathons (‘88, ‘98, ‘99); I married my Prince Charming and have two terrific sons; and I had, most importantly, an incredibly tight-knit family headed by a mother and father who encouraged, supported, and loved me no matter what.

And then, at around the age of forty, things changed.  My father, with the brain of a 25 year old but the body of a 100 year old, died in January 2008, after six years of intermittent but persistent health concerns.  Within six months, my mother – my rock, my drill sergeant, my cheerleader – had a gall bladder operation that in retrospect was the final trigger for her descent into Alzheimers.

My siblings and I – there are four of us, two boys and two girls – now think Mom was showing symptoms of Alzheimers prior to 2008.  For sure, she seemed fairly gregarious at my father’s funeral – an odd behavior we thought was due to the stress of caregiving for so many years.  In March, at Easter dinner, she seemed shaky and told us she was going to go work at her alma mater because assuredly, Temple University would remember her.  (She had received her Masters from Temple in 1956.)  And then in July, at the hospital for her gall bladder removal, she wouldn’t/couldn’t sleep and by the third day – in restraints, agitated, confused – she pleaded with me: “Kathy, please go into the kitchen and get me a knife to cut these things off.”  I told her as gently as possible that I couldn’t, but that she should try to go to sleep.  She said she would.  And then, seconds later, she’d politely repeat her request as if she had never asked me.  I did my best to convince myself she was just overly-tired.  My mother, Lucy Falciani DeMarco, could not have Alzheimers. She was too smart, too proud, too disciplined, too savvy.  What was going on, I insisted to myself, was that she had a stressful life, and this was a stressful time, and her brain wasn’t used to working this hard.  After she got home from the hospital, she would be as good as new… which meant that she’d go right back to being there for me, whenever I needed her, because that’s what moms did, even when your children were no longer children.

This is what forty years of good luck will do to you.  It will make you think that God and the universe owes you, who has received so much; it will make you think that your notion of what it means to be a child is as unmoving as a redwood tree.  Your belief in this forever childhood is so unyielding that it takes Alzheimers – as strapping and strong as the meanest lumberjack – to literally uproot the redwood before you start to realize that your hold on childhood is fundamentally messed up; that yes, even your mother – your very own living angel – is not, cannot, be there for you anymore. She is sick, very sick, and it is your turn to be present, to support her, to love her, no matter what.

Today, when I visit my mother at her Alzheimer’s care facility, she beams, grabs my hand and searches for words to explain something that is 100% evident to her, but not to me.  “You should come with me,” she’ll say, “and we can go to those people, I mean, well, wherever you want, I want to go, no, this chair?  Ok.  I’ll do whatever you say.”

Luck again, of course – Mom hasn’t become one of those patients who hurl food and names at people.  She isn’t in pain and she smiles a ton.  She kisses my cheek over and over, and she giggles, particularly when she shows me a new piece of costume jewelry that my sister or I have given her.  But I still struggle because – and this is the hard part - my mother was never, ever, a giggler.  Nor was she ever particularly demonstrative with kisses or holding hands.  I don’t mean to imply that my mother wasn’t loving.  She was ferocious in her love for us; she would have run into burning buildings, slayed lions or otherwise lifted the universe itself if it meant that her kids could sneak in underneath and grab a bigger, better piece of life.  But she wasn’t this sweet, old Italian lady who kisses everyone on the cheek.  My mother was so different from this person she is now.  The child in me – that stubborn little girl who feels so wronged – rages against the disease; where have you taken my mother???  But the adult in me is learning, slowly, that this is woman in front of me is my mother, and I try and try to make her feel as beloved as she has made me feel for my entire life.

This is why I’m running the NY marathon.  I run to raise money, of course, to cure this disease.  I run as a kind of mental therapy so that the loss of my mother in real time is somehow less painful through the routine of an almost-daily run.  And I run as a daughter long overdue in becoming an adult, so that I can remember who my mother was and who she is - no less than the most important person in my life.

Spotlight: Kendra Arnold

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 in January 2011 from Alzheimer’s, and I still find it hard to talk about him.  I can talk about raising money, or whatever new study is out, but talking about my dad really gets to me.  I’m going to give it a try.

Well, first of, he was just an awesome dad.  Seriously.   He was always ready with a joke and a laugh, and ready to do something interesting, and maybe a little pranky.  I can remember him convincing me that after eating watermelon, he could pull the seeds out of my ear.  He took us on mystery trips where we would have to figure out the clues to know where we were going; I’m not sure I ever did figure out the final destination, but all the trips he took us on were were so much fun.

He was always messing around in his workshop, or soldering some sort of electronic thing together, or inviting everyone in the neighborhood over to make ice cream or press apple cider.  He made so much apple cider that I still can’t drink it, having had gallons and gallons of it growing up.   He would sometimes show up with a truck full of wood and a day later, there would be some sort of awesome deck or stairs to a creek.

He never really got mad, but I can remember during my surly high school years, when I got in a bit of trouble, him struggling to understand what was going on and him saying “I just want to know where you are coming from,” which really annoyed me at the time, but now seems really endearing.  He didn’t get mad, but he would give you stuff to do, like once when I was in trouble at school, he decided that I would just spread wood chips around the yard, and once I finished one pick up load, he would bring another one.  Weird that now a pile of wet wood chips will make me nostalgic.

He just had such a genuine interest in people and learning how to do things.  He built an elaborate train set in his yard, took so many classes just for fun, became an expert at working with stained glass, loved walking trails with the dog and whoever would come along with him, and just was a great guy. 

Anyhow, I first noticed he was having problems that might be Alzheimer’s around the time of my brother’s wedding.   A year later, when my parents came up to visit, he had problems finding the hotel from my apartment just a few blocks away, and I think it was stressful for him to be out of his normal landscape.    I think there were some signs after this that made me realize it might be Alzheimer’s for real.  I wasn’t really surprised exactly, my grandfather had had Alzheimer’s, and so had one of my grandmothers. 

It was about 10 years after the first signs until my father passed away.   I guess for me, it was sort of a delicate balance of trying to help and also respect my parents independence and privacy, and all the other issues that come with trying to support caregivers and being a caregiver on occasion, and trying to find out where to get help and then suggesting getting help.    So many  people feel like they have to do it all themselves or something is wrong with asking for help, when it is one of the most human things we can do, I think.

At some point during the last couple of years of my dad’s life, I discovered the Alzheimer’s Association NYC marathon team, and sort of got it in my head that I was going to it.   Some of the runners had blogs about their training, but their blogs were also about what their families were going through or issues they were dealing with, and it was just amazingly helpful to know other people were dealing with Alzheimer’s and hearing their stories.

This will be my second year running the NYC Marathon, and while last year’s training was def a huge help in getting through my grief over losing my dad, this year is about the money. 

More people close to me have been diagnosed since my father’s death, and I have to consider that I am at risk for this too, as well as the people I care about.  I mean, we really really really have to do something—research is critical, I think, but having the resources to support caregivers and giving them options they can live with is so important. 

Supporting the Alzheimer’s Association is something I do because I loved my dad, but it is also so important because of the people I love right now.  Run on.

Spotlight: Michael Frank

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) 

I hope you all are having a wonderful summer!  As many of you know, I have been raising money the past few years for Alzheimer’s.  Last year I ran the NYC Marathon, and through my efforts raised over $10K for Alzheimer’s.  My mother has been suffering with Alzheimer’s for the past 9+ years.  In fact, I recently signed papers admitting her into hospice care.

I realize there is nothing that can be done to help my mom, but I know that if I do something, my daughters and their children might not have to go through what I am now.  Don’t let this disease continue to wreak havoc on other families!  Take a moment to look at my webpage (I Run for My Mom), and support me in my efforts to raise money for Alzheimer’s.  If you can support me by donating to this great cause, please do so through the site.  If you can’t donate (or even if you have donated), you can support me by forwarding this email to a friend/co-worker/family member.  My goal is to build awareness, and hopefully assist in some small way towards finding a cure for Alzheimer’s. 

Thanks for reading, and thank you for your support.

I don’t just run for my health, I run for my mom.

Spotlight: Tricia Mullaney & Paul Hagar

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 Tricia Mullaney. I am a 47 year old woman from Westfield, NJ.  I have always been active in a variety of sports, including running, tennis, paddle tennis, and hiking. Exercise is an integral part of my life.  And although I have been running throughout my life, I just ran my first marathon in February 2012 in Death Valley with the encouragement of my husband, Paul Hagar, who is also running with the R2R team.

Alzheimer’s disease has affected me deeply, as my mother has been struggling with it for over 12 years now.  It really has been a long, slow goodbye.  It is hard for me now to remember my “other” mom.  My two children have only known their “Gammie” with Alzheimer’s.  They have grown up watching the decline of my mother and all the sadness and anxieties that accompany the disease – for her, and for the rest of my entire family. 

I am one of six children from an Irish Catholic family, and we are all petrified that we will be the one in the family to inherit the disease.  Of course, humor is key to watching a loved one struggle with Alzheimer’s; and although it might sound gruesome, we all hope that our sister, Tara, who passed away nearly ten years ago, was the one to get the disease, and that she took the Alzheimer’s to the grave with her. 

I am particularly concerned about myself and the disease due to my medical history.  At age 39 I suffered a stroke caused by an undiagnosed hole in my heart.  Thankfully, I was young and in excellent health when my stroke occurred, so I made a wonderful recovery.  Most people would never know that I have suffered any damage to my brain, but I do.  I am very aware of the lingering side effects of my stroke, and am very concerned that my stroke has put me at greater risk for developing Alzheimer’s. 

I am running with the R2R team to raise awareness of this devastating illness on both the sufferer and their loved ones.  I am running to raise the awareness for greater funding and research for Alzheimer’s.  I am running for all the caregivers around the world who show their patience, love, empathy and care for the Alzheimer’s patients they are escorting through their final days, months and years of life.  And I am running for my mother’s caregiver, Guerline Jean Pierre – our guardian angel, a true living saint. She has allowed my mother to travel through these years of Alzheimer’s with dignity and grace.  And allowed my siblings and I to live a life somewhat free of the constant worrying, anxiety and stress over the quality of my mother’s life.  

Thank you Guerline, we love you dearly!  

For more information please click on the link for this video: http://vimeo.com/42523131 or below

[Headlock] from Mary-Walker Rippe on Vimeo.

Spotlight: Kevin Daley

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) 

Dad and I in one of his last races, look at 

the sprint to the finish proof that 

Alzheimer's can't take everything

I am not a runner. In fact, I hated running. My Dad and one of my sisters (I'm the youngest of six) were the runners of the family. I never really got it. All that changed in 2007 when my Dad was diagnosed with Alzheimer’s Disease. In an effort to cope with the news, I decide to run the 2009 Boston Marathon. I figured that I would pick up the baton from my dad, or fast Eddie as they used to call him. 

He started running in the late 70’s and continued to race up until 2011 when the disease finally forced him to stop. I always wondered what the hell made him get up at 5am every morning and go running. Was an ugly race T-shirt really worth all that effort? To this day, he has hundreds of T-shirts he collected from all his races.

So I figured if he could run 7 NYC Marathons I could run Boston in his honor. I still play Hockey a few days a week and figured I could whip myself into marathon shape in 4-5 months. Wrong! I ended up blowing out my Peroneal Tendon at mile 22(yes after the Hills) and was carted off in an ambulance to Newton Wellesley Hospistal while my parents, wife and kids waited at the finish line. I figured my brief marathon career was over. 

Dad rockin' short shorts 

Then in the spring of 2010 my Dad started to have trouble in his races. He was getting confused on the courses.  So I dug out my running shoes and started to run again so that I could race with him and help him navigate the courses. He was 76 at this point and the disease was starting to slow him down physically as well. I did a bunch of races with him, right by his side, adding to his T-shirt and medal collection(full disclosure the 70 plus category is not all that competitive). An odd thing started to happen during these races, I actually started to like running. It was probably the sight of my Dad(76 and battling Alzheimer's) smiling as he blew by people much younger than him.

I kept running with him right up until the disease forced him to stop racing later that fall. At that point I decided to give Boston another shot, for him and for all the others that lose so much to this dreaded disease. And in the spring of 2011, I crossed the finish line in Boston with my dad waiting for me at mile 26.2. Both the training process(with the Alzheimers Asscociations Boston Chapter) and the race itself was an amazing experience.

So what’s next? NYC. It was the marathon my dad did 7 times so I figure it only makes sense that it’s my next marathon. Unfortunately, he won’t be at the finish line this time(we had to put him in a home this summer and there is a chance he might not make it to November) but I will hopefully bring him a new NYC medal and ugly T-shirt to add to his collection. And for that I love running.

New Clipping from the mid 80s featuring local marathoners, notice the ugly race tee

Spotlight: Liz Jonckheer

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)

Laying on the front lawn of our house in Nashville, TN my father asked me (I was 4 years old at the time) "Lily, do you want to move to California?" Silence, as I contemplated the clouds in the sky, "Nana and Poppy live there," he continued. "Yes Papa, I want to move to California!" I said with great enthusiasm and a slight southern twang.  Soon thereafter my parents packed up the farm and the kids and we headed West.

I am so thankful we did because that meant my siblings and I grew up with Nana and Poppy.  They lived 5 minutes from our house and we had a family dinner once a week.  Nana and Poppy hosted famous Christmas parties and the Easter spread was something out of Gourmet Magazine.  They took us on trips to San Francisco's China Town for Dim Sum and Bodega Bay for oysters.  Poppy passed in 2000 and a few years later Nana began showing signs of Dementia.  She passed away last September, in her sleep, in my sister's arms from complications of Dementia.  Although I didn't get to say a final goodbye, I am thankful that I was able to be with my family for the celebration of her life in Northern California.  Upon returning to Brooklyn, I was incredibly touched to find a note from my beloved Team R2R teammates.

My experience running the New York City Marathon as a member of Team R2R for the past three years has meant so much more than training and completing the best marathon in the world (according to Coach B!).  The team camaraderie and endless support, love and encouragement that I have received from the coaches, Alzheimer's Association staff and fellow teammates has transformed me into a runner and helped me cope with the more recent loss of Nana.  In short, I can't imagine not running the NYC Marathon with Team R2R.  Whenever I begin to get miss Nana (typically when I'm not on a run, or haven't gone for a run in a few days) I think about something my best friend recently said to me, "You don't have to be sad, because she will always be with you! Nana is part of you Lizzie!!!"  This incredibly true statement keeps me running and inspires me to continue advocating for the Alzheimer's Association as a proud member of Team Run To Remember.

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  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 mom was diagnosed with early Alzheimer’s close to five years ago. She hosted Christmas Eve dinner every year since as long as I can recall. My families along with my two brothers gathered at my folk’s 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 doing and recalling the simplest day to day activities. She was an avid member of America Online until the age of 80 sending emails daily to her 9 grandchildren who were off at college. 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 was especially difficult for my Dad who was 88 years old , 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.

Last May 9^th , 2011 my Dad passed away. She was never able to fully grieve the passing of her life partner of 67 years (I suppose it is a matter of opinion if that was a positive or not) Although her condition worsened considerably after his passing


That’s where my story changed, from May ’11 – Feb ’12  my brother and I become her primary caretaker on weekends. As we at first were only able to find 24/5 (Mon AM– Sat AM) care for her . He stayed with her on Saturday’s, I on Sunday’s (We now have 24/7 care for her). Each week for 24 hours I saw how Alz affects a person. For a while at about at 5:00 PM time she insisted that she has to go “home” to help her mother cook dinner, to a point where we needed to convince her she is home. She was reverting to her early adult years when her and her sister (who also is afflicted with this awful illness) helped my Grandmother prepare dinner for her three siblings as my Grandmother was a young widow at the age of 49. Other times I would awaken in the middle of the night to find her fully dressed as she has no understanding the time of day 

.  While it was challenging dealing with the Alz related symptoms I appreciated the time we spent, just her and I . When I took off for work in NJ each Monday I had a good sense that I was in some way paying her back for all the love and support she and my dad provided to her children, grandchildren and great grandchildren over the years She continues to amaze me with her incredible positive attitude and sense of humor.  Although the sickness is slowly eroding her personality and now there are times when she is not herself. I believe the medication she is on has helped. While there is no cure it has slowed the process.
That is my connection to Alz and why I’m involved with the R2R Team. I can see the benefits that research has provided and how much the support services assist families in a similar situation as mine Another reason I run for ALZ is to have the honor to be associated with such an amazing group of people from the runners to the coaches and support team .This is my third year with the team and just doesn’t get old! I get old, but the positive experience of being a member of the R2R NYC Marathon team never will  J

Spotlight: Leslie Stahl

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 grandmother, Omi as my sister and I called her, was a survivor. When she was thirteen years old she sat down at her family’s piano in her home in Hersbruck, Germany and woke up hours later buried under rubble after her house was bombed at the end of World War II.

Her sister and nephew died in the bombing, but rescuers found her alive and saved her. Years later she met my Opa and they were married. In 1957 they moved to the United States like so many couples before them, hoping to start a family and give their children a better life than they had left behind in Germany.

Omi was a survivor and also a caretaker her entire life. She very much reminded me of Snow White when I was a child because she was always rescuing and nursing a stray or sick animal and also always humming a song to herself. It seemed as if birds and rabbits and cats and dogs flocked to her. She was always patient and always kind with animals. I think she found solace in their company.

I have fond memories of her tucking me into bed, driving me to dance practice and dropping by our house just to stock our freezer with ice cream. She was so imaginative and so supportive. I think she believed, like I did, that I would grow up to realize my childhood dream of being a ballerina if I wanted to.

I didn’t quite grow up to be a ballerina. I ended up a runner, which in many ways is better I think because it often reminds me of her. Running, and training for a marathon especially, takes patience, courage and perseverance – all qualities that Omi possessed.

She started her own interior design business in the 1980s that she ran with a friend up until she was diagnosed with Alzheimer’s disease about seven years ago. My sister and I didn’t know she was sick. She had sworn my Dad to secrecy. But eventually the woman I remembered so fondly, the independent, sweet Omi I loved, started to fade away.

When my sister and I would return from college we suddenly saw the change in her. We were moving on and growing up, but she was faltering. She was confused, delusional, sad and sometimes angry. In every way imaginable she was the opposite of herself.

 I miss her. But when I run I sometimes feel like I’m with her. She loved the outdoors and felt most at ease when she was out taking walks and wandering in the woods. Living in the city it’s hard for me to get out onto trails, but I still feel the most at peace when I’m outside running even if it’s among skyscrapers instead of trees.

She died this February, and it was something I had prepared for in my mind but not in my heart. When I discovered the Run 2 Remember team I was overcome with a mix of emotions. I was happy to find a way to support a cause that’s so dear to my heart in a way that I’m passionate about, but I was also sad that I have a real reason to run for it. I look forward to the day when no one has to experience what I had to experience with Omi, or what my Dad, as her caretaker, went through. I can’t wait to run in celebration because we’ve found a cure. Until that day I’ll keep running because it’s one of my passions, and I’ll finish this marathon for Omi and for me. I know that had she been here in body and mind that she would be proud. I’ll have to settle for having her in spirit and for having the privilege of running with so many people like me who have lost or are losing their loved ones to this disease.

Spotlight: Rudy Tjiong

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 Rudy Tjiong and I come from a family of 3 (including my parents). About five years ago, during a visit to my cousin’s home, my mom got lost within the house. What seemed like a harmless incident of forgetfulness was the beginning of what has become a long journey into the world of dementia. It was three years ago that my mom, Christina Tjiong, was officially diagnosed with dementia and more specifically, Alzheimer’s disease. It was quite honestly a dreaded diagnosis, for we knew that there was no cure and that there was only one direction this could go…downward. From that time on, she has never been the same. Losing the essence and core of the person you once knew is probably the most difficult aspect of Alzheimer’s. It was very difficult to process how this could happen, as up to this point, my mom had been blessed with good health.  But as my family has been finding out, Alzheimer’s does not discriminate who it targets.

What started out as forgetfulness about basic things has now progressed into emotional swings, day dreaming, delusions, and the inability to walk and take care of herself on her own.  Her decline has been fairly rapid, but mom is surrounded and supported by many who love her. My mom is blessed to have my dad, Eng Tjiong, as her primary caregiver, together with wonderful round –the-clock caregivers who ensure that her quality of life is as fulfilling and blessed as possible.

As you might expect, Alzheimer’s disease does not only impact the person with the illness. It touches all those around them, perhaps even more than the person themselves. Although my mom is usually in good spirits, there are now days where she no longer recognizes me or forgets my name.  This is very tough to have the person who raised me not know who I am. She often jokes that I only visit once a year (even though I visit several times a week). My mom has always been a very kind-hearted and thoughtful person so it is strange to see her become a different person as the disease worsens.

It has been through my mom’s illness that I have become aware of how many people are affected by this terrible disease. While I know at this time there is no cure for Alzheimer’s, I am running the 2012 New York Marathon, in honor of my mom and to raise awareness for the disease. In addition, I am running the Marathon as part of the Alzheimer’s Association team to raise funds to help further their research, raise awareness, and most importantly, fund a cure! Running the marathon will certainly be a tough and arduous challenge for me. Perhaps some might find running 26.2 miles an impossible task! But I believe it is symbolic of the fight against this disease. While it may seem like a losing battle, I choose not to give up hope that we can eventually conquer Alzheimer’s. 

Spotlight: Jody Ternus

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) 

From age five I grew up in Michigan with my maternal grandfather, John Koval, and I have some of the best memories of my childhood with him.  Memories of him taking my brother and I fishing, swimming, eating giant bowls of ice cream, him pulling me around in a wagon, taking me to soccer practice, I could go on for a while...  After finishing college and then moving out of state in 2004, visits home to Detroit became less frequent, but I could always count on a huge hug from Grandpa when I came through the door.  The time between these visits home however, made it clear that something was progressively going wrong with him.

Several years ago I received the horrible, but not surprising news that he was diagnosed with Alzheimer's disease.  It progressed slowly at first, however the past couple years have gotten very rough.  It's heartbreaking to watch not only my Grandpa struggle, but the rest of my family suffer through the pain of watching him drift away.  Though it is obvious that he's well into the later stages of the disease, not remembering to eat, unable to remember names, he somehow still remembers me, and I fear the day he doesn't.  Even though he won't understand, I am so happy to be able to tell my Grandpa that I'm running for him, because I love him and miss him so much.  I'm also running for my Mom and my Grandma, who are true heroes in my eyes, taking care of my Grandpa every day with amazing patience. 

 

My fraternal grandmother, Patricia Ternus, was also diagnosed with Alzheimer's several years ago.  Unfortunately I did not have the priviledge of having her in my life as much, but I knew her to be a beautiful, strong, successful woman.  After she was placed in an assisted living facility I made a trip to visit her, leaving heartbroken from what this horrible disease did to such an intelligent woman, and saddened by the fact that I didn't get to know her as well as I wish I had.

Though dealing with the effects of Alzhiemer's disease on my family has become a part of my life, the education and support I've gained from the Alzheimer's Association has been such a blessing.  Being involved in the fight against the disease is so important to me. 

I have been a pretty regular runner for the past 10 years, completing my first half marathon in 2009 in Nashville, TN.  Since then it's been a goal of mine to run a marathon; entering the NYC Marathon lottery the past two years with unsuccessful results.  And then this year I decided to apply to join the Run 2 Remember Team.  I could not be happier that I didn't win a spot through the lottery!  This experience means so much more to me because I'm doing it for a cause that is so dear to my heart.  It means so much for me to be able to run on this team, and raise money and awareness towards fighting Alzheimer's!   

I am honored to be on this team, and I truly cannot wait for November!

GO BIG OR GO HOME!

Spotlight: Julio Perez

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) 

Growing up with my mother in another country, my siblings and I looked to my grandmother as our mom.  She took care of all four of us plus other cousins.  My grandmother, Mamá, like we called her, was a strong, independent woman. She always woke up early for breakfast and church and was the last one to go to sleep after the day was done. Knowing that she had suffered from Dementia in her later years came as a shock to me because I couldn't understand how a woman so strong could become so dependent on others.  I attribute what I know about Alzheimer's and it's effects to my wife Tania because of what her family went through with her grandfather and great grandmother. She introduced me to the Alzheimer's walk and together we have been raising funds and awareness by participating in  it every  year since. 

 

I was very happy when I was chosen to join the team because now I can pass along my knowledge and educate myself more on what Alzheimer's is and how it can deteriorate those we love.

Running for me has now become more than a hobby, it is my way to stay fit, to discover the world and to share my experiences with those I love the most. I run with my head held high knowing that this crazy idea of mine has become a way to express my gratitude and honor the memory of those who have shaped us into who we are today.

Spotlight: Marvin Scott

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) 

I’m sure that my story is similar to many individuals dealing with a loved one suffering from Alzheimer’s.  Initially, it was thought that some of the signs were simply the normal effects of aging taking its toll.  But as time progressed, it became evident that something was wrong and action needed to be taken.  The transition can be difficult when the parent-child relationship is reversed and the child must become the caregiver.  Always a fiercely independent and headstrong woman, my mother was not in favor of anyone “taking care of her.”  But with my sister and I both leaving our hometown of Detroit to pursue our careers, our concerns for our mother’s well being began to grow.  Fortunately, after many difficult discussions, and help from friends, doctors and other family members, we were able to bring our mother down to Texas to live with us.  It was quite a relief to move past the anxiety and fear for our mother’s day to day safety to focus on the care and treatment of her disease.

My mother never smoked, never drank and exercised almost daily, so it seemed tragically ironic that someone who lived such a healthy lifestyle would have her mind fail her before her body would.  Even to this day, my mother has incredible strength and agility for a woman in her seventies and regularly gets the best of us on family bowling outings.  Although her memory has diminished significantly, she is still able to enjoy and take pleasure in life’s experiences day by day and this, we have come to cherish.  We now focus on celebrating the moments we are able to experience together rather than the times she can no longer remember.  My mother is a woman that always made sure that her children maintained a healthy lifestyle by staying physically active, so running the marathon as a part of the Run 2 Remember Team seemed like an incredibly appropriate way to honor her.

Spotlight: Heidi Abendroth

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) 

I was very blessed as a child to have wonderful man to mentor me, to help raise me and most of all to love me unconditionally. That man was my grandfather.  I lost my brother when i was 7 and my grandfather was there, in fact he was always there when i needed him most, no questions asked always being my biggest cheerleader. I always thought my grandfather would be here forever as there was never a time when he wasn't but about 4 years ago that all started to change. My grandfather started to forget things, it started small, but as it always does the dementia started to progress. He had to stop driving, managing his bank account but the one thing i could still count on was he was still able to recognize me.  My grandmother had to put him in a nursing home for respite care while she had surgery. He never left. I would visit when i would come home from new york but it was so hard each time, wondering when the time would come when he would no longer recognize me. He developed pneumonia, but i made it home in time to spend his final days with him as I was determined to be with him until the end just like he had always been there for me.  Dementia may have taken him from me but it will never take away all the memories we shared.  I made a promise to myself that if i was ever going to run a marathon it would be in NYC and in memory of him using my legs to help raise money so there will be a time when there is no longer dementia or Alzheimer's.