I’ve shared my personal Alzheimer’s story a hundred times. On my walk webpage, on my facebook fundraising posts, in my personal emails to friends asking for donations and in person with people I meet everyday. I walk in memory of my mom, who died from Alzheimer’s 4 years ago.
But this week, I gained a new perspective on why my family walks and discovered another way for our family to share our story.
My sister Shannon is about to take a big leap in life – going from a comfortable home in Oakland to living on a 40-foot sailboat with her husband and two kids. We were all shocked to hear about this drastic move and their plans to pack up and sail around the world in two years. But Shannon started a blog, and after reading her story, I understand the decision and support it 100%. I know it won’t all be easy, but it will be an amazing experience.
My change of heart after reading Shannon’s blog reminded me of how important it is for us who have had experience with this disease to tell our story. I read the story from her perspective as a woman who lost her mom to Alzheimer’s and suddenly the big decision all makes sense.
Walkers can learn a lot from this principle. Did you know that people who add their story and a photo or video to their personal Walk fundraising pages raise more money than those who don’t? That is a tangible example of how stories will help us move this cause forward and I hope all of you share yours often.
For most participants, Walk to End Alzheimer’s isn’t just about raising funds and raising awareness – it’s personal. Every year I am drawn closer and closer to this cause by the stories I hear from walkers. As I hear each new story I add one more person to the list of people I walk for. Like the Scholz family from Santa Cruz, who I met at a kick-off last year, or the Lucas family who I met in my support group who walk in San Jose, or Team Redding from Sacramento who I met at our post walk party two years ago – all these people walking to end Alzheimer’s and making it personal. I fundraise for my family AND these families now. Have you told me your story yet? Click here to share your story or let us know in the comments!
Today, I’m inspired to tell my story in new ways – not only on my fundraising page, but maybe on my own blog, or in a video, or a newsletter to family and friends, or in my local paper. The power of these stories really can move this cause forward. Here’s a look at Shannon’s blog Sail + Give + Live. I hope it inspires you to live life to the fullest and tell your story!
There are a lot of reasons for one to set off on a voyage like this – to escape the grind, to relax and check out, to have a great adventure, to see the world. We want to do all of those things, but there are a few other reasons that are even more important to us than those.
My reasons began in the year 2000, when my mom began showing signs of early onset Alzheimer’s. I remember noticing her first signs when she was under 50, so my parents were still quite young. My Dad had spent nearly 30 years working so hard to save up a nice secure nest egg so that one day they could retire early at age 55, take off on the Harley, and have a grand adventure.
That never happened. Instead they spent nearly $1,000,000 over the next 10 years for my mom’s care, without the benefit of Social Security, Long Term Care Insurance, Medi-Cal or any other support network other than my parent’s life savings.
A lot of sailors plan to cruise when they retire. I feel like waiting until that ‘someday’ comes is a true gamble. All we have is now. There are no guarantees, even if you don’t have early onset Alzheimer’s in your family, or cancer, or …. We will never have enough money, enough time, enough stability in our careers, and we will never feel 100% ready to leave behind our beloved friends and family, for any period of time.
When my Mom was diagnosed, my whole idea of how life was going to go was shattered. At the time, I felt helpless, sad, scared, angry and alone. No one I knew had an ill parent, and finding my way through all of that pain was a tough journey.
1. As a family, we fight!
Alongside my father, my sister, Rob and my community, we dedicated ourselves to fighting for future generations, and raising funds to combat this disease, and support caregivers.
Our family has raised nearly $200,000 in the past 10 years, through the Memory Walk and our annual Chili Cook Off (today), through the Memories in the Making event, and the Reason to Hope event. My father and sister have gone to Washington to advocate for increased funding for research, and these efforts have made a difference.
And we are going to go cruise Latin America and the Caribbean in our 40′s, with our kids, volunteering our time, talents and our hearts to making a difference, and being present to the miracle of community, life, our planet, nature, and humanity.