Personal and professional experiences with Alzheimer’s led Margo Reis of Modesto to ask her employer to sponsor the Modesto Walk to End Alzheimer’s. Through reaching out and sharing her story, Margo has helped others get involved in Walk and has been one of the top fundraisers in Modesto.
In 2009, as Margo was starting her first semester of nursing school, her dad Andy was diagnosed with Alzheimer’s disease. Her mother, Phyllis, took on the role of caregiver while Margo began to research and learn more about the disease.
“The first couple of years following my Dad’s diagnosis I felt powerless,” said Margo. “It broke my heart to watch my dad struggle just to complete his activities of daily living.”
A not so silent fight
It wasn’t until 2013, when Margo discovered Walk to End Alzheimer’s that she began to feel like she was getting her power back. “At first I told my Mom it was my ‘silent’ way of fighting for my Dad,” said Margo. “But then I decided it wasn’t such a silent way to fight. It was actually a powerful way and the only way I knew to fight this horrible disease.”
Alzheimer’s is the third leading cause of death in California. In Stanislaus County there are over 8,775 people aged 65 and older living with Alzheimer’s disease. “It started out as a fight for my Dad,” said Margo.
“But then every day at work I was seeing patients who had been affected by Alzheimer’s. I was shocked at just how many people are directly affected by the disease.”
In 2015 it became clear that Phyllis needed help to care for Andy. Margo and her family decided to move her parents to Placerville in order to be closer to Margo’s brother. Soon after moving there Phyllis began acting strange.
“One day the air conditioner broke and it was 90 degrees in their house,” said Margo. “My mom said she called my brother, but he said he never got a call.
“It turns out my mom emailed him instead. My mom is the type of person who has it all together and I knew something wasn’t right.”
It wasn’t until Phyllis began making phone calls to 9-1-1 because her husband was getting out of bed, that Margo decided to take Phyllis to see a doctor. “I figured this was just caregiver burnout,” said Margo.
“We’d had her memory tested before, but she always passed with flying colors. This time she didn’t pass.” Phyllis was diagnosed with Alzheimer’s in 2017.
A change in her diagnosis
Within two short years, Phyllis’ condition had rapidly declined while Andy’s Alzheimer’s progressed much more slowly. “My mom couldn’t walk,” said Margo.
“She couldn’t stand without falling, and I was very worried about her. I took her to her doctor who told me it was time for to move her to Hospice.”
By this point, Margo had already finished nursing school and wondered if her mom had been misdiagnosed. She suggested to the doctor that her mom might have Parkinson’s disease.
Phyllis’ doctor agreed it was a possibility and sent her to see a neurologist for further testing. In 2019 it was determined that Phyllis had Lewy Body dementia, which can exhibit symptoms similar to that of Parkinson’s disease.
With this new diagnosis, the neurologist changed Phyllis’ medications to include those to help treat her Parkinson’s like symptoms. Phyllis is now able to walk again, with the aid of a walker.
Getting her company involved
By this time, Margo was working as an Emergency Department nurse for Kaiser Permanente. She wanted her employer to become a sponsor for the Modesto Walk.
Knowing how important the cause is, she reached out to her supervisor for help. Together they succeeded in getting Kaiser to sponsor the 2019 Walk.
Kaiser continues to be a sponsor this year. “Kaiser believes in the cause,” said Margo. “So many of their members are affected by Alzheimer’s or other dementias. They are proud to be a sponsor for the Modesto Walk.”
Asking others to be a part of Walk
Whether you’re asking your company, a co-worker or a friend to participate in Walk to End Alzheimer’s, Margo encourages you to do two things:
- Share your connection with Alzheimer’s.
Margo says, “Tell your own story, you never know who you’ll inspire.”
- Show your motivation by starting your own fundraiser.
“If you can, make a donation,” says Margo. Whether or not you can donate, Margo encourages you to start a fundraiser. “It will spark others to get involved.”
A friendly competition
Margo has been walking and raising funds for Walk to End Alzheimer’s for seven years. Every year, she strives to be the number one fundraiser for the Modesto Walk, but she has fierce competition. Steven Barbieri, an active Alzheimer’s Association volunteer who is living with Chronic traumatic encephalopathy (CTE), is also a top fundraiser.
“Steven and I battle every year to be the number one fundraiser,” said Margo. “There is usually less than $15 between us by the end of Walk season. I think I make him work harder to raise more funds. It’s kind of fun to see who raises the most.”
Steven agrees with Margo. “To be honest, the more she raises, the more it pushes me,” said Steven. “I’m a very competitive person and I take pride in being the top fundraiser for the last four or five years in a row. I really look up to Margo and the creative ways she fundraises.”
“I believe in this formula: Fundraising = Research = Finding a cure,” shares Steven. “For me, the Alzheimer’s Association and people living with dementia are the real winners. Go Margo!”
Creative ways to raise funds
As of the publishing of this blog, Margo is the number one fundraiser for the Modesto Walk (watch out, Steven). She has raised more than $2,700, but she doesn’t do it alone. Her friends and husband help her raise funds by selling goods.
Margo makes forget-me-not flower badges out of recycled medicine caps. These beautiful flowers hang on her coworker’s ID badges.
Margo’s husband makes wooden flags, which they sell to friends and coworkers, donating the proceeds to Margo’s Walk team. Margo says, “He’s my number one sidekick fundraiser.”
Additionally, Margo has the support of her friends. One friend sells crocheted blankets and another friend bakes cookies.
“Baking cookies was new this year,” said Margo. “We raised more than $1,285 selling COVID-19 proof cookies. She made four different kinds of cookies and we made sure they were sealed.”
First time walking with her parents
This year, Walk will be different. In past years, participants have come together as a group to share their stories and Walk in a central location. This year, the Alzheimer’s Association is asking Walkers to stay close to home and walk in their local communities.
“I am super excited about this year’s walk,” shared Margo. “This will be the first time since I have been walking in the Modesto Walk to End Alzheimer’s that I will get to walk with my parents.”
“Instead of trying to figure out the logistics of them coming to Modesto, I will go to their retirement community and walk with them there. We will be decked out in purple.
“We will also be walking with some of my parent’s caregivers. We have wanted to walk together for several years but couldn’t make it happen. They are some of my biggest supporters. This year is going to be so fun.”
Spreading awareness through Walk
Margo encourages people to continue to participate this year despite the fact that there won’t be a big gathering of people on Walk day. “It affects so many people,” said Margo.
“COVID-19 has only made things worse for those living with Alzheimer’s, both health-wise and because of being secluded. We all know someone who has dementia and one day it could be us. We have to find a cure.
“Raising money for Alzheimer’s is even more important now. I think Walk day will be a great day of celebration for everyone.
“I’m really looking forward to seeing the creativity and enthusiasm that people can come up with during this new normal. Walking in our communities will help us get the word out there.
“I like to tell my story because I feel like it will inspire somebody to participate in Walk. People Walking in their local communities is their way of sharing their story and I hope it will inspire others to join. Then someday when we find a cure, I’ll know I was part of that movement.”
Margo and her family will be walking from her parent’s retirement community for the Modesto Walk on September 12. You can donate to Margo’s Walk page here or start your own team. We’re still coming together in 2020, even if it means trying something new. Not in Modesto? Register today at alz.org/walk and be the first to know about Walk activities in your area.
- Walk to End Alzheimer’s
- Types of dementia
- Alzheimer’s Association Helpline 800.272.3900