Every year on the second Saturday in September, a “promise garden” of colorful flowers springs up around the Main City Park in Washington as a crowd of more than 800 people take to the streets of downtown for the annual Walk to End Alzheimer’s.
Each walker carries a flower representing their connection to this progressive brain disease that robs people of their memory and ability to function.
Blue flowers are for people who have Alzheimer’s. Purple flowers are for anyone who has lost someone to Alzheimer’s; yellow, for caregivers; and orange, for champions of the cause.
Last year, for the first time, several children held up white flowers.
“The white flower is a sign of hope for a world without Alzheimer’s,” said Judy Tobben, chair of the annual Walk held in Washington.
These days there is a lot to be hopeful for regarding Alzheimer’s. Just weeks ago, researchers announced that for the first time, a large, randomized clinical trial has demonstrated a significant reduction in the risk for developing cognitive decline and dementia.
The results, which were announced at the Alzheimer’s Association International Conference (AAIC), show aggressive treatment of high blood pressure (targeting a systolic blood pressure goal of less than 120 mm Hg) resulted in fewer new cases of mild cognitive impairment and dementia.
These findings are exciting because they show — more conclusively than ever before — that there are things we can do, especially regarding cardiovascular disease risk factors, to reduce our risk of mild cognitive impairment and dementia.
“That finding — that there is a correlation between lower blood pressure and staving off the onset of dementia or Alzheimer’s — just reinforces the need to stay healthy,” said James Schuenemeyer, walk director for the Alzheimer Association’s Greater Missouri Chapter.
These new results further reinforce the importance of the Alzheimer’s Association U.S. Study to Protect Brain Health Through Lifestyle Intervention to Reduce Risk (U.S. POINTER), said Schuenemeyer, noting the study includes managing cardiovascular disease risk factors as part of the multi-component lifestyle interventions.
“We are tracking seniors who are susceptible to Alzheimer’s,” he said. “We are modifying their diet and exercise and doing brain activity exercises with them. All that together is showing that if they are becoming heart healthy, they are brain healthy as well.”
For Tobben, that news makes the Walk to End Alzheimer’s — the nonprofit’s biggest annual fundraiser — even more important, because “it feels like we are closer than ever to really making a breakthrough,” she said.
Tobben remembers when things were quite different.
Back in the mid-1980s when her mother, Martha Eckelkamp, was diagnosed with Alzheimer’s, there was very little to be hopeful about, said Tobben. It was a challenge to find information and resources to help, let alone any steps to improve outcome.
Tobben said she began to notice signs that something wasn’t right with her mom a couple of years after her dad, Louis Eckelkamp, had died. Her mom was coming over to Tobben’s house several times in a single day and just didn’t seem herself.
“I could sense a lot of anxiety in her,” said Tobben, noting her mom was then around age 72.
Then one day her mom arrived at Tobben’s house with three popped tires on her car and no memory of what had happened.
“At that point I realized we needed to start thinking about her not driving anymore,” said Tobben. “That’s how I started to know there was something really wrong.”
Tobben, who is one of four children, took the lead for the siblings in finding out how they could help their mother. She found a neurologist at St. Louis University Hospital and enrolled her in a clinical trial.
“Once a month I’d take her down to SLU… It was a double-blind study, so some people got the placebo and some got the drug,” Tobben recalled. “But then the study was cancelled.”
As Eckelkamp’s condition grew worse, the family sought people and places to help them with her care, but it was always an ongoing struggle, said Tobben.
“There are agencies now that help provide the care that people with Alzheimer’s need, but back in the ’80s and ’90s, it seemed like there was nothing,” Tobben said. “The hospital had a list of names of people that would help you, and some were good, but some were not so good.”
The family always did everything they could, but caring for a loved one with Alzheimer’s is hard both emotionally and physically, especially for family members.
“It takes a lot of patience and TLC,” said Tobben.
“There are so many terrible diseases and so many reasons to raise money for different causes. Many cause physical pain, but this causes so much emotional pain for years and years and years as it goes on, and then in the end it’s physical pain,” she said.
Eight years after Eckelkamp was diagnosed with Alzheimer’s, she died of the disease.
“What happens with a lot of people who have Alzheimer’s is they aspirate,” said Tobben, who is an RN. “Their brain has forgotten to tell their swallowing mechanism how to do it right, so they get food in their lungs.
“Then they end up with pneumonia or they’re septic,” she said. “It can even be a UTI (urinary tract infection) that gets them, because they can’t say what’s wrong with them.”
Years later, Tobben’s mother-in-law, Lil Tobben, also was diagnosed with Alzheimer’s.
Inspired Her Career
Watching everything her mom had gone through led Tobben to embark on a new career in nursing. She had worked as a kindergarten teacher before staying home to raise her four sons, but after the experience of managing her mom’s care through Alzheimer’s, Tobben felt inspired to get involved.
“I know how hard this disease is on caregivers, and really that’s why I became a nurse,” said Tobben, who returned to school when she was 45 years old to earn a Bachelor of Science in nursing. “I had seen the good and bad of health care, and I wanted to be part of the good.”
For most of her 14 years in nursing, Tobben has worked in the recovery room at Mercy Hospital Washington. Currently she is working as a cardiology testing nurse at the hospital here.
But she is drawn to working with older people and envisions a day when she will do more of that.
“Truthfully, older people, that’s where I have a sweet spot in my heart,” said Tobben, noting her parents were in their 40s by the time they had her and her younger sister, so she grew up around older people.
Alzheimer’s Association Offers Support, Resources and More
The Alzheimer’s Association, which was founded in 1980 by a group of family caregivers and individuals, is the leading voluntary health organization in Alzheimer’s care, support and research.
Its mission is to eliminate Alzheimer’s disease through the advancement of research;
To provide and enhance care and support for all affected; and
To reduce the risk of dementia through the promotion of brain health.
It has a hotline (1-800-272-3900) that is staffed 24/7 to help people, especially the families and loved ones of someone newly diagnosed, with any questions and concerns, said Schuenemeyer.
Tobben, who was unaware of the Alzheimer’s Association when she was caring for her mom in the late-’80s and early ’90s, said one of her personal goals in promoting the annual Walk to End Alzheimer’s is to raise awareness about all the Alzheimer’s Association can do for families.
“They provide support groups, respite care, just lots and lots of resources and research,” said Tobben.
People need to be aware that Alzheimer’s isn’t just a disease that affects “old” people in their 70s, 80s or 90s. There is an early onset form that strikes people as young as their 40s and 50s.
“That’s why it’s really important for people to have early diagnosis,” stressed Tobben, “because the sooner they are diagnosed, they can either get in a study or get started on some medication. Early diagnosis is so important because now they can maybe slow things down some.”
Tobben said she has lost two friends to Alzheimer’s who were in their 50s when they were diagnosed and in their 60s when they died from it.
“That’s extra devastating when they are so young, because that’s when people are in the prime of their lives, having grandchildren and really getting to enjoy life, and many are still working,” she remarked.
Local Walk Has Raised More Than $1.4 Million
The Alzheimer’s Association’s Walk to End Alzheimer’s is the world’s largest event to raise awareness and funds for Alzheimer’s care, support and research. Held annually in more than 600 communities nationwide, this inspiring event calls on participants of all ages and abilities to reclaim the future for millions.
“The goal of the Walk is to raise funds for research to find a cure for Alzheimer’s and to support families with education, care and the resources that are available to them free through the Alzheimer’s Association,” said Schuenemeyer. “It’s also to raise awerness about this disease and to ask people to join us in our mission to see a world without Alzheimer’s disease.”
It’s been around 20 years that the Walk to End Alzheimer’s has been held in Washington, and the Bank of Washington has been a lead sponsor from the beginning. The bank was honored by the Alzheimer’s Association this past spring with the Lifetime Giving Award at the group’s annual Affair to Remember Gala.
It was 10 years or more before Tobben got involved. Looking to grow the Walk here, the Alzheimer’s Association approached the bank about having someone from the community serve on the board in St. Louis.
“Everyone else was pretty busy, and I had some time, so I volunteered,” said Tobben.
She joined the Walk committee, and the group of 35 volunteers made some significant changes to attract more teams and raise more awareness and funds.
“The most important thing we changed was the date,” said Tobben, noting the Walk had been held the last weekend in September, which also is the biggest weekend in the local United Way campaign.
Tobben, who had served on the board of the Franklin County Area United Way, realized the two organizations were unnecessarily competing against each other.
The date for the Walk to End Alzheimer’s was moved to the second weekend in September, and the venue was moved as well, from the American Legion Hall on Third Street near the hospital to the Main City Park by the city swimming pool.
“The park is so pretty, and people walk through the downtown area . . . we walk to the riverfront and back,” said Tobben. “It’s just a really pretty walk.”
With those two changes, the Walk began to gather steam, attracting more teams and participants, and therefore raising significantly more money.
Back in 2000, fewer than 100 people took part in the local Walk to End Alzheimer’s, said Schuenemeyer. Last year, there were more than 800 people on more than 100 teams.
In 2000, the Walk raised $11,434. Last year, the total raised was more than $210,000.
“So you can see we’ve just grown tremendously, and we have so much support from Washington and the surrounding communities,” said Tobben, noting teams come from all over Franklin County, as well as Gasconade and Crawford counties.
This year’s Walk to End Alzheimer’s will be held Saturday, Sept. 8. Registration begins at 8 a.m. (200 High St., Washington) followed by the opening ceremony at 9 a.m. The walk will get underway at 9:30 a.m.
This year’s goal is $210,000.
Anyone wanting to participate can show up that day to register or register in advance online at www.alz.org/walk. Type in your ZIP code and that will take you to the page to sign up.
You can make your own team or join any other team, said Tobben. Her family’s team, “Martha and Lil’s Team,” is always happy to have more walkers, as all of the teams are, she said.
The goal of each Walk team is to raise funds, and the Tobbens’ “Martha and Lil’s Team” is always one of the top five fundraisers.
To raise funds, some teams write letters or send out email blasts requesting donations. Others post on social media or ask family, friends and co-workers to support the cause.
But many of the most successful teams organize special fundraisers, like tournaments, trivia nights or T-shirt sales, said Schuenemeyer. The Tobbens host an outdoor evening party that they call Moonlight Memories.
“We try to hold it around a full moon, but that doesn’t always happen,” said Tobben.
The first Moonlight Memories event was at La Dolce Vita Winery at the corner of Front and Lafayette streets in Downtown Washington. It was a tiny venue and not a lot of people could attend, but they probably raised one or two thousand dollars.
Tobben quickly realized that if she held an event like that at her house, where she could invite many more people and it could feel more like a party than a fundraiser, they could raise a sizeable sum. And they have.
Moonlight Memories, which is held some years at the Tobbens’ house in Washington and other years at the Franklin County Country Club, raises $20,000 to $25,000 each year, making it one of the largest fundraisers for the Greater Missouri chapter.
This year’s event, held at the Country Club Aug. 10, had a Mexican fiesta theme coupled with some night golfing. Last year’s event, held at the Tobben house, was a luau theme.
The Walk committee helps Tobben organize and plan the event, which includes a silent auction.
The Tobbens underwrite the event so all of the funds collected that night go straight to the Alzheimer’s Association, rather than first paying bills.
If You Would Like to Help . . .
The Alzheimer’s Association welcomes being invited to give presentations on Alzheimer’s disease, what it is and isn’t and what the latest research findings are, said Schuenemeyer, noting one of the most common questions is about recognizing the difference between normal forgetfulness and Alzheimer’s.
“Normal forgetting is not knowing where you placed your keys,” he said. “Alzheimer’s is more like forgetting what a key is for or forgetting you even own a car.”
To read more about the latest research on Alzheimer’s, people can go to www.alz.org.
For more information on the Alzheimer’s Association or the local Walk, people can contact Schuenemeyer at 314-623-0332.
The Alzheimer’s Association Hotline is open 24/7. Call 1-800-272-3900 with any questions or concerns
There also is an Alzheimer’s support group that meets at Washington Public Library the fourth Tuesday of every month from 2 to 3 p.m.