Tiffany Elston, a data analyst, has been a volunteer on the planning committee for the Walk to End Alzheimer’s for the last two years because she wanted to create a more personal, in-depth and involved commitment. Elston’s mother, at the age of 49, was diagnosed with younger onset Alzheimer’s six years ago, and Elston has been an advocate ever since. “We didn’t really know where to go for help. The Alzheimer’s Association has been great, especially for my father, who is my mother’s caregiver,” Elston says.
Rona Altschuler, a part-time employee of Weymouth Funeral Home and avid bicyclist, has been the volunteer chairperson for the Walk for eight years. She is not afraid to stop whispering and start raising her voice about what she refers to as an “insidious disease.” Elston and Altschuler met while volunteering on the committee for the Walk to End Alzheimer’s.
In 2006, Altschuler participated in what was then called the Memory Walk by getting a team together. “It was fun, but I thought that there were some changes that needed to be made, so I reached out to offer my assistance because I had experience with volunteer community work,” she says. The next year, her mother was diagnosed with Alzheimer’s. Altschuler and her band of volunteers felt compelled to keep the team together to raise awareness, and they did. The event’s volunteer chair had passed away, and Gino Colombara, executive director of the Alzheimer’s Association, reached out to Altschuler and asked if she would fill the role. She happily obliged. In 2011, Altschuler’s mother passed away, and about two years later, her mother-in-law passed away from the same “insidious disease.”
In 2009, The Walk to End Alzheimer’s moved to its current location, in the heart of Port Warwick. “I felt like this disease deserved more attention,” says Altschuler. “That was my attempt to take it to a different level and bring awareness to the public. Clearly it doesn’t discriminate. It is a hard disease to volunteer for. There is nothing classy about it. Yes, I am exhausted, but even when you’re tired, you still have to do it. You don’t walk away, you walk to remember.”
Alzheimer’s Association hosts more than 600 walks across the country annually, but only one local walk each year. “This is our really big chance to get people there. This is our national signature event,” Altschuler says.
When Elston became involved in 2013, she had never heard of the event. Citing the increased publicity of the illness and the commercials, Elston is hopeful that donated funds will increase the amount and level of research being conducted to find a cure or discover the pathway to a vaccine. “I think the biggest thing for me is that Alzheimer’s can affect anyone,” reveals Elston. “We had no family history. My mother was 49 years old, in the prime of her career, accelerating in her work, and her diagnosis was like a wall.”
In 2007, “when my mother was diagnosed,” Altschuler begins, “you whispered about Alzheimer’s. Nobody was talking out loud. People aren’t whispering about it anymore and that is one of the greatest things I have seen in the 12 years I have been volunteering for this cause. People need support and we will never find a cure if nobody is talking.”
Sometimes, it takes an intervention by the supportive people surrounding a loved one to come to terms with the possibility that the disease is present and wreaking havoc. Elston tearfully says, “One day, I said to my husband,
‘I think something is wrong with mom.’ I didn’t really know how to bring it up.” These observations and willingness to communicate about the health and well-being of a loved one can make all the difference in getting the help needed when Alzheimer’s hits home. “My advice,” says Elston, “is to get involved, get out there; it might be you with the disease one day.”
The disease impacts its victims differently, depending upon where in the brain the disease takes hold. While many people automatically think about memory loss with Alzheimer’s, other unfamiliar symptoms include changes in mood and personality, decreased or poor judgment, difficulty completing familiar tasks or even withdrawal from work or social activities. “Every 66 seconds, someone is diagnosed,” tells Altschuler. Alzheimer’s is the sixth leading cause of death in the United States.
“If you and your loved one are just starting this journey, please go to the monthly-held orientation for caregivers and lean on the support around you,” advises Altschuler. As the chairperson for the Walk, Altschuler has successfully changed the mode of the event from one with a somber tone to one that is respectfully celebrative. “I want participants of this event to feel grateful that we can do this for those who cannot. To be grateful, we have to be joyous. We are all there to support each other, whether we have lost our loved ones or not. Keeping the event up-beat ensures that our loved ones are remembered and that the disease is remembered. Form a team, write a check, do whatever you can. It’s the worst disease out there because there is no treatment, no cure. But there’s hope, because we have hope,” says Altschuler.
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