Tomorrow I leave for the beginning of the Temple Project hike.  I have trained as hard and as well as I could….I have packed and repacked…and now it’s time for my feet to hit the road and to try to do my part to make a difference.  First, I have to thank my beautiful family for supporting me – Matt, Taylor and Matthew, I could not have done this project without your support so thank you and I love you. 

Next, a HUGE thank you to all the generous donors….together we have raised over $10,000 to help support the Alzheimer’s Association and all that they do for families struggling.  And, the donations are still coming in – from the bottom of my heart, thank you, thank you. (http://bit.ly/karenshike)

Finally, my list of names to honor/remember continues to grow – and THIS is why I am doing this hike – to raise my voice to be sure that we are heard – that our loved ones are acknowledged and that by making them known, to raise awareness for just how many people are affected, and just how devastating Alzheimer’s is to patients and families.

Follow my blog for the next two weeks as I journal the hike – our ups, and our downs, and when we reach Agrigento, to follow me reading all the names.  I am humbled and grateful for all of the support, and I know that this effort, and these funds, will help us find the first survivor.  With much love and gratitude – Karen

 

“What lies behind us and what lies before us are but tiny matters compared to what lies within in us.” As I make my final preparations for my Temple Project hike, this famous quote, kept popping to mind.

What lies behind me is all the sadness and frustration of Alzheimer’s ‘winning’ again and again….what lies before me is the uncertainty of the future and what mine might look like without a cure…but what lies within me is a burning desire to make a difference- no matter how small, in this battle against Alzheimer’s….heartfelt thanks to all who have supported this effort…I am humbled by the friendship and support…

I am still assembling my list of names to read in honor/memory so please send to me if you would like your loved one acknowledged- http://bit.ly/karenshike

I am testing out blogging from my phone since that is what I will be doing once on the Magna via Francigena trail – two more weeks to train- will I be ready? Will I have reached my fundraising goal? While I don’t yet know the answers to these questions, I do know that I am going to give it my all- I am hiking for all of us – to honor, to remember, to support everyone affected by Alzheimer’s-

Today would have been my dad’s 100th birthday – instead of celebrating a huge milestone, I am sitting here pondering all of the wonderful milestones that he has missed in my life …. the birth of my children, the celebrations of their communions, sweet sixteens, high school graduations, awards etc.  And, I have missed 20 years of his guidance – he was not only my father, but my mentor and friend.  When I needed advice on finances, insurance, big life decisions, or even gardening, he was there to offer support.

I also sit here frustrated; frustrated that 20 years have passed and we still do not have the answers for treatments or a cure for Alzheimer’s.  How can that be? How can TWENTY years have passed, and we are no closer to a cure?

This hike that I am doing, is more than just a fundraiser or an awareness builder.  It is a gesture of love for my dad and for all those suffering…it is pushing my own limits physically and encouraging those that can, to push their limits as well – pushing to continue research….pushing to fund scientists….pushing to never give up….the answer is out there and if we all push our limits, even just a little bit, we can find the answers that we seek….

If you would like to learn more about the hike, or to have your loved one honored/remembered, please visit my site at http://bit.ly/karenshike – Happy 100th Birthday in Heaven Daddy – I hope that you and Mommy are enjoying a lobster, a martini and a beautiful slow dance.

News 12 was kind enough to interview me today on the upcoming Temple Project hike and my awareness and fundraising efforts.  I am not much of a camera person, but take a look and please share to help me spread the word – thanks!

http://westchester.news12.com/story/40394905/katonah-woman-embarks-on-115mile-journey-to-raise-alzheimers-awareness

In fifty six days I will be in Palermo, beginning my 115 miles hike across Sicily with my Temple Project teammates. We are all training…..working out, hiking, running, going to the gym, eating healthy and mentally preparing.  We are buying new gear – hiking shoes, poles, lightweight clothes, hats….we are slowly checking off the items on our ‘lists’ of what to buy and how to best be prepared.

There is one list, however, that is growing larger by the day, and it is THIS list that is the very reason for my participation in the Temple Project and the Pilgrimage to Enlightenment Documentary…and that is the list of names that I will be reading when we reach our final destination  in Agrigento.

Each day, I am contacted by many asking me to add the name of a loved one who has died from Alzheimer’s….or to add the name of a someone who is living with Alzheimer’s…or to add the name of a caregiver of someone with Alzheimer’s…or to add the name of someone struggling with Parkinson’s.  The list is growing……and for all of us on this journey, it is our hope that someday, there are no more lists of names of those lost to Alzheimer’s or Parkinson’s.

But, today, the list is long, and today, I will honor and remember each and every person whose name was given to me to recognize in Agrigento.  If you would like to have your loved one be a part of our journey, and to have their name recognized, please visit http://bit.ly/karenshike and tell me who you would like remembered….we can, and we will, find cures – and in the meantime, we will continue to raise our voices…so that someday, we will outshine the darkness of Alzheimer’s and Parkinson’s.

Tomorrow is the 15th anniversary of my mom’s passing. Lung cancer. Horrible and heartbreaking and I miss her every single day.   We were so much alike  – stubborn, loyal to our family, and we bickered a lot – ok, we bickered almost every day! But, we never went to bed without an apology and an ‘I love you’.   Over the years, I have lost many relatives, and every death, no matter how old someone is in years, is tragic and sad, and hard. So why then, am I writing about my mom on a blog that is about Alzheimer’s?

Because, no matter how hard her death was, when I reflect back on her last few months, I realize what a beautiful gift we both were given – the gift of ‘Goodbye’….my mom and I spent time talking about her wishes for her care, both what she did, and didn’t want as far as her health care; we spent time talking about her hopes and wishes for her grandchildren; we spent time crying, and laughing and being angry that she wouldn’t see her grandchildren grow; we even talked about her wishes for her funeral.

And, when the time came, my mom gave me a beautiful gift – she told me she loved me, and she told me she’d miss me, and she gave me the gift of goodbye.  Now, go back in time 5 years, when my dad was dying.  There was no laughter…no discussion about his wishes for his care….no talking about his hopes and dreams….and most importantly, no ability to say I love you, or Goodbye.  My dad, who was my mentor, my friend, and who I respected more than I can explain, died without knowing his family was with him, or that we loved him, or without that beautiful Goodbye.

That is why, for the past 20 years, I have been an avid advocate for research, for funding, for support, and for a cure for Alzheimer’s.  Alzheimer’s is an evil, wicked thief, that steals the most precious memories, treasured thoughts, and loving wishes – at the end of the day, when we take our last breath, all the wealth and ‘things’ are meaningless…the only real measure of person, is who they are, and the memories they made….and this monster called Alzheimer’s rips that all away.  I will NOT stop speaking out until we have made some progress – something to help….I won’t even be so selfish as to ask for a cure – how about a treatment, or something to really slow the progression, just SOMETHING to give hope and help to those affected.

I miss my mom every single day, but I rest easy knowing that she lived her life on her terms, and most importantly, she knew how very much she was loved, and she told her family how very much she loved us….Whether you are living with Alzheimer’s, caring for someone with Alzheimer’s, or have lost someone to Alzheimer’s, know that there are regular people like me out there, fighting for us all – fighting to find funding so that we can end this disease, fighting for all the memories, and fighting for all of us to have the Gift of Goodbye.

Please consider a donation, no matter how small, to help scientists, researches, care teams, find that cure….every penny matters….thank you so much for your consideration –  .Funding for the Gift of Goodbye

Perspective…..sometimes perspective is hard to come by…and sometimes, through a series of events, perspective is ‘given’ to us….

Yesterday, on Facebook, my friend @Jeanette Lopriore Fox, wrote a post about paying it forward, in honor and memory of her nephew, Maddox, who passed away late last year, at only 8 years old. April 10^th would have been his 9^th birthday, so in his honor, she is going to ‘pay it forward’ and show 9 simple acts of kindness – that beautiful child, and his parents, gave the very loving gift of donating his organs, to help save the lives of so many other people. Perspective.

I don’t usually watch the morning news – too busy getting ready for work and the day ahead. But, this morning, I turned on the news, and a little bit more perspective came my way – Ralph LoPriore, Maddox’s father, shared with tears in his eyes, the gift that his son was able to give to a host of other people in need of organs. Their family’s great loss, was turned into a great gift to so many. Perspective.

I have not invented the cure for Alzheimer’s, have not donated millions to charity, and I have not donated a life saving organ. That said, we all have the ability to do great things – sometimes those great things are large, and more often, they are small gestures that add up. So, whatever your perspective, take a moment, and think about what you CAN do, however small, to make a difference….hold a door for the person behind you, say something nice to a co-worker, buy a cup of coffee for a stranger, donate a $1 to a charity, volunteer your time for a day or an hour, walk a shelter dog, be kind to your family, forgive a debt, and the list goes on. Whatever you do, do it with love and a full heart. Imagine what a beautiful world this would be if each and every one of us, did small acts of kindness and kept the perspective that great change comes from small steps….and for those like the LoPriore family, whose selfless act truly changed lives, I send love, prayers for healing, and great respect…

 

 

This past weekend, I took a trip to REI to get fitted for a new backpack, all in preparation for my Temple Project journey in Sicily. Since I wanted a special color, I had to get it shipped, and I was very excited when this new bag showed up in the mail today!

I tried on so many different bags, each with their own unique bells and whistles and weights. I decided on this particular bag because it was a nice combination of features, while at the same time, not being too heavy. For me, someone relatively new to distance hiking, I know that carrying a heavy load will be hard, so I wanted to be sure to have the lightest pack possible.

And, almost as quickly as I had that thought, it also struck me that the heaviness of the bag offered a great symbolic gesture for the very reason that I am doing this hike in the first place. I know first hand, the heavy load that is carried by caregivers of those with Alzheimer’s. I also know the heaviness that is felt, as it was told to me by my father, of the heaviness of living with Alzheimer’s. So my desire to lighten my load on this trip, is precisely why I will walk on this journey – I am doing whatever I can to raise my voice, to raise awareness, and to raise funding for a cure…so that the incredible load of Alzheimer’s can be lightened, for all those who are suffering.

This is a story about love…..hope….and the power of never giving up.

Peggy and Roger met as undergraduates at Penn State University in 1962. Roger was pursuing his degree in finance while he was in the Marine Corps, and Peggy was getting her degree in Liberal Arts. Peggy was a very funny, laid back young woman, and Roger, because of his Marine Corps training, was a little more structured. It was love at first sight, but they both decided to have a little time apart as they finished their respective degrees. After graduation, Roger accepted a position at Salomon Brothers, and Peggy moved to Naples, Italy. They kept in touch via letters, and both knew that the spark had never died.

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In 1967, while vacationing in Austria, Roger decided to visit Peggy in Naples. That weekend was the beginning of their life together – they got engaged, married, had two beautiful children and life was good. Roger had his own successful bond market research business, which Peggy helped him run. Their children were doing well, they enjoyed wonderful skiing and beach vacations as a family, and they were happily married.

But, in 2004 Roger noticed some changes in Peggy’s memory, and at the age of 61, Peggy was diagnosed with Alzheimer’s. That, however, is not where the love story ends….in fact, it is in this incredible challenge, that this love story blossoms. Caregiving for someone with Alzheimer’s is no easy task, and Roger acknowledges that there are many challenges and he feels quite blessed that he has the resources to have help in the home so that he is not caring for Peggy alone. There are over 16 million people providing unpaid care for someone living with Alzheimer’s, and the toll on the health of the caregiver is often overlooked.

While Peggy is now non-verbal, she still communicates via her stuffed animals, facial expressions and mischievous ways. As Roger and I sit at lunch, his love for his wife is evident, and while the challenges are difficult, he told me that ‘the love story continues’, even 15 years into an Alzheimer’s diagnosis.

 I am sharing his and Peggy’s story as a beacon of hope for all those living with Alzheimer’s, and all those caregivers struggling – Roger and Peggy found beauty in the cards that they were dealt, and they refuse to be defined by a disease that has robbed them of so much. They are an inspiration, and I hope that reading their story will bring a smile to your face, a light in your heart, and new hope that with love, life can still be beautiful, no matter the challenge.