the longest day

I lost my dad to Alzheimer’s on May 6, 1999. It was a day that changed my life forever. I was seven months pregnant with his only granddaughter and from that day forward, my perspective on life, career and family was forever changed. Our family was robbed of my dad’s guidance, his humor, his gift of gab, and his incredible intelligence. We had no opportunity to say ‘goodbye’, no final wishes, no ‘I love you’ could be exchanged because my beautiful father was gone “in mind” long before his body finally succumbed to the disease. That is why for the past 20 years I have been an advocate for awareness and funding to find treatments and, ultimately, a cure for this terrible disease.

Since my dad’s passing, I have lost seven other family members to Alzheimer’s and it is from this grief and loss that I decided to do something really BIG in an effort to raise the public consciousness on the importance of finding treatments. All of this led me to the Temple Project. The brainchild of another local advocate from Somers, Enzo Simone, the project was an eight-day, 120-mile journey in the heat and hills of Sicily.

We were a group of 13 advocates, some of us hiking to raise awareness for Alzheimer’s and some for Parkinson’s. But all of us were there with one united goal of making a difference in the lives of those affected by these two diseases. We began the journey on June 21, which happens to be the longest day of the year, a fitting symbol for a disease where every day is “the longest day.”

I trained for almost a year to prepare for this hike, but nothing prepared me for the intensity of the journey. The heat was almost unbearable, with each day topping out at 115 degrees; the terrain was more rugged than I anticipated – long, intense steeps, followed by equally long intense downhills, most of which were off road and, oftentimes, through thick brush, pickers and very unwelcome Sicilian critters. The physical challenges were many, but they pale in comparison to the daily life of someone struggling with Alzheimer’s, or a day in the life of an Alzheimer’s caregiver. I have been down this road and this hike was my way of honoring and remembering all those who fight this battle each and every day.

At the end of our journey, this wonderful team of advocates, who I now consider family, gathered at the Temple of Asclepius, in Agrigento, where we each took the time to acknowledge all those in our lives who have been touched by Alzheimer’s or Parkinson’s. This temple is thought to be one of sites of the birthplace of healthcare, where 2,400 years ago pilgrims journeyed to this place in search of cures for various diseases. We read the names of family, friends, and even strangers – all those who asked to be acknowledged and remembered. We hiked this pilgrimage as a gesture of love and hope, and as a way to raise our collective voices in the fight against Alzheimer’s and Parkinson’s.

Stay tuned for the documentary release later this year. In the meantime, you can follow the progress at https://www.facebook.com/groups/pilgrimagetoenlightenment/

Karen Ganis

Karen Ganis is the director of RideConnect of Family Services of Westchester, which provides volunteer transportation to older adults in Westchester County.Volunteer a few hours a month and change a life - visit www.RideConnectWestchester.org for more info

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