President Barack Obama can be so rude sometimes, such as interrupting Barb Martin-Stanley smack-dab in the middle of an interview about how she copes with her mild cognitive impairment.
“Barbara, you’ve got to take your medicine — America needs you!” the nation’s commander-in-chief barked from her cellphone as she detailed how the early-onset form of dementia affects her life, her family and her work at the University of Wisconsin-La Crosse.
Barb giggled as her husband, Charles, handed her the phone and she explained that Obama had not recorded the message but rather, there’s an app for that. Their son, Charles II, had downloaded it onto her phone.
“Actually, I had taken my medication, but I forgot” to log it on the app, she said.
It would not have been surprising if Obama actually had recorded a personal message as a favor to the 58-year-old Onalaska woman, because she sang the National Anthem when the president spoke July 2 at UW-L.
Barb, a student services coordinator in the university’s Academic Advising Center, often had sung at events at the school and other venues, but she had balked at the presidential gig.
“I was anxious — nervous, because I didn’t know if I would forget the words,” she said, adding that she had suspended performing because of her MCI to avoid the potential of lyrical slips.
The increasingly common malady requires that patients follow a lifestyle that is “simplified, routine and structured — but anybody who knows me knows those words are antonyms for me,” Barb said with the hearty laugh that is as much a part of her lexicon as words are.
Shortly before the Obama performance, she also had hesitated before accepting an invitation to sing the anthem at a UW-La Crosse baseball game.
Anthem crib sheet — just in case
“It was hard to be in groups when I was moving through the first part of my journey,” she said, acknowledging, “I had the words on a paper in my pocket just in case.”
Barb, who battles periodic bouts of depression related to MCI, pulled off that diamond appearance without a dropped line or a missed note.
That’s no small feat for a woman who can’t read music.
“I sing by ear,” she explained. “I ‘feel’ the music.
“I still had the gift of my voice that God had given me,” said Barb, who refers to her home as “Angel City” for reasons that will become clear later.
That shot of self-confidence buoyed her through a series of phone calls and texts with UW-L and White House officials about her 1-in-3 chance to set the stage for the president.
“I am one of those who would say it’s wonderful to be nominated,” she said.
Then, amid Secret Service vetting and other formalities, Barb learned that she not only would sing the anthem but also would lead the Pledge of Allegiance.
Husband Charles was reluctant about the opportunity, out of concern for her, she said, adding, “He didn’t want me to do it because I’m supposed to avoid stress — and good stress is as bad as bad stress.”
However, as a token of love to decrease the angst, he gave her a bracelet with a symbol of faith on it.
On the night before Obama’s appearance, Charles was rolling Barb’s hair when the phone rang at 10:15. The late-night caller was Julia Ross, an intern at the White House, where it was 11:15.
“I was trying to be calm, like I get a call from the White House every day, especially at that hour,” she recalled.
Ross asked Barb to be at UW-L’s Recreational Eagle Center for a sound check early the next morning, an appointment she was more than happy to keep.
“The whole experience was really, really nice,” she said, even being surrounded by the sober-faced Secret Service agents.
‘Wonderful’ to shake president’s hand
“The Secret Service knows everything he does,” she said. “When you are there and the president comes out, they are almost like robots, scanning the crowd. My son got to shake the president’s hand, and I got to shake the president’s hand. That was a really wonderful experience.”
Afterward, husband Charles observed that she probably wouldn’t have been able to carry the day like that three or four months before, when she was in the throes of MCI-related depression.
“We knew that this was part of God’s plan to be moving me through this,” Barb attests now.
Charles acknowledges his protectiveness of Barb since her diagnosis in July 2014, saying, “As a family, we were required to make adjustments because she does require some adjustments.
“She requires support, which requires time, so we spend a lot of time planning. She needs structure, scheduling,” said Charles, who is associate dean in UW-L’s College of Liberal Studies. “I try to be helpful.”
The modifications weren’t always easy to accept for Barb, who has a bachelor’s degree in psychology from prestigious Smith College in Northampton, Mass., and a master’s degree in professional development from UW-L.
“It was hard on our relationship for awhile,” she conceded. “For awhile, I was calling him ‘the warden.’ That was wrong on my part.”
Now, the Martin-Stanleys, who moved to Onalaska from Wilberforce, Ohio, in 2001, collaborate on a daily calendar that chronicles when and where Barb puts her medicinal Exelon Patch — similar to a nicotine patch — that is used to treat all stages of Alzheimer’s disease. She must wear a patch every day, but she must apply it to a different part of her body, and Charles makes a calendar that specifies right shoulder, left shoulder, etc., that Barb crosses off after applying the patch.
“It wards off the progression of MCI,” she said. “There’s no cure, but there’s a treatment.”
‘I was getting stuck’
In explaining the onset of the disease, she said, “I was getting stuck. In some situations, I couldn’t figure out my next step. I could be sitting on the side of the bed, putting on socks, and I wouldn’t know what I was doing or how to do it. It was a very different feeling than just forgetting.
“It included little things,” she said. “I remember specifically one day, I couldn’t remember how to send a chat. I typed it, and sat there for 25 to 30 minutes and didn’t know what to do. I finally asked a colleague I trusted, and she told me just to hit enter.”
The colleague, noting Barb’s frustration, “knew something was going on and kept me going by telling me just to calm down,” she said.
Dr. Cony Santillan, a neurologist who is on the team treating Barb at Gundersen Health System, explained to her that everybody has spaces known as synapses in their brains, The spaces normally are short gaps for the electricity of thought to jump across, Barb said.
In an MCI patient, the spaces are such that the thoughts don’t quite make the leap, she said.
“I am seeing more patients with MCI now, and it is a growing concern since it may be develop into a dementia, most commonly Alzheimer’s disease,” Santillan said.
The number of patients with Alzheimer’s “is increasing because of longer life span and better recognition and acceptance of this condition,” she said.
Santillan credits several factors with helping Barb progress very well: her positive attitude and strong family support, a memory pill, treatment of mood issues and physical and mental activity.
Uncertainty about the future is one of the most troubling aspects of the disease, Barb said. Managing it requires understanding and accepting it, she said.
“You’ve got to make MCI your friend instead of your enemy,” she said.
‘Not a happy camper’
Barb initially was ready to duke it out with that enemy, especially when she could not accompany Charles and a group of students on a study trip to Ghana.
“I had a major, major anxiety attack, and I was not used to that,” she said. “When I found out I couldn’t go to Ghana, I wasn’t a happy camper. In retrospect, it was a good thing. My doctor said if I got over there and had an attack,” the proper care probably would not have been available.
“Then she played dirty pool, and said, ‘If you go, the students might not enjoy it because they would be worrying about you,’” Barb recalled.
So she relented, staying home and trying to “friend” MCI, a process that requires understanding of how it works — or doesn’t.
MCI also propels skirmishes with self-image.
“I went through a journey wondering if I wanted others to know. If they knew I had memory problems, would they think I was mentally ill? But even if they did, why should that matter?
“You have to find a way to move all of that out of the way. With reflective time, I moved from feeling the stigma to realizing it is not something you need to be ashamed of,” she said. “Disclosing it at the university was a huge thing for me.”
Asked what she might advise others who contract MCI, she said, “One thing you shouldn’t do is go out and find everything about it. That’s what I tried to do, but it pulls too much on your cognitive side. You need to be aware and know something” without overwhelming yourself.
She told of a conversation with a childhood acquaintance whose mother had Alzheimer’s.
“We were born in 1957, but her mind was in 1947. She didn’t know she had a son. I wondered what it would be like if I didn’t know I have a son,” Barb said with a sense of urgency and seriousness that sublimated her habitual upbeat demeanor.
“Talking to somebody who understands what you are going through is really amazing,” she said. “A connection with other people who are going through the same thing lets you know you are not alone.”
Dementia series aims to help
Helping people craft those connections is the goal of the “Younger/Early-Onset Dementia Series” that the Aging and Disability Resource Center of Western Wisconsin will begin on March 10. The six-month series, scheduled for 1 to 2:30 p.m. on the second Thursdays of the month in the education center of Gundersen’s Onalaska Clinic at 3111 Gundersen Drive.
The series is designed for people with MCI, early-onset Alzheimer’s or other related dementia illnesses and their care partners, as well as those who are concerned about memory loss, said Amy Brezinka, coordinator of the Caregiver Coach Program at the ADRC in La Crosse, which serves La Crosse, Jackson, Monroe and Vernon counties.
It also aims to fill a gap in support for those with MCI and their caregivers, said Brezinka, who launched the Caregiver Coach Program in 2013 and has developed Memory Cafes and other gatherings to generate mutual support for people with Alzheimer’s and Parkinson’s diseases and their families.
“There really is nothing for MCI,” Brezinka said. “I started talking with Barb about it, and I’ve been working on this for nine to 10 months.”
Although the Memory Cafes are valuable for networking and socialization, Brezinka said, they generally attract an older crowd and meet around noon, when many of the younger folks are still working and have children. MCI support groups probably would need to convene during evenings, she said.
Barb concurs, saying, “Many of us still want to work. Do I keep working, or do I go home and sulk? I don’t want to be in a situation where I’m working and can’t remember something. These are all questions.
“I love my husband, and I love my mother — she taught me to be independent,” she said. “Talking to somebody who understands what you are going through would be really amazing.”
Brezinka echoed that value, saying, “Sharing stories is powerful, because it helps other people.”
That will be possible with another development — the launch of a Younger/Early-Onset Dementia Support Group that will begin meeting from 5:30 to 7 p.m., with social time from 5:30 to 6, March 17 at First Lutheran Church at 410 Main St. in Onalaska. The group will meet on the third Thursday of every month.
Barb also finds strength in spirituality, so much so that the couple hosted a home church in their family room for about 2½ years. Born into a Baptist family, she said with a smile, “There weren’t many black Baptist churches in Onalaska. We belong to the Onalaska United Methodist Church.
“Faith is huge,” she said. “Faith takes me up a notch. I’m involved in things — Charles is afraid I’ll go overboard, so I’m trying to be conscious of that and not do things that are too stressful.”
Along those lines, she has had to sacrifice some of her previous pursuits, such as serving on several community boards, including being a member of the grants committee for the La Crosse Community Foundation, positions with the YWCA and other leadership roles.
“That was really hard when all that was taken away,” she said. “But it would have taken more cognitive energy.”
In addition to helping establish a Bible study group at UW-L, Barb hosts an internet radio show titled “Lady in Praise” from 5 to 6 p.m. Fridays at http://www.raqradio.com/lady-in-praise.html.
The show features gospel music, song and prayer requests and Barb’s observations about faith and life issues.
Barb also has seasonal affective disorder, commonly known as SAD, a type of depression that affects many people — mostly during the winter but for some, during the summer — because of lack of exposure to daylight.
Like other victims of the moodiness and blues of the season, she uses a specialized phototherapy light to cope with it. She spends about a half-hour a day under the lamp, sometimes reading her Bible, other times, eating breakfast.
Sadness is the farthest thing from her mind, though, when she is in the company of her angels, an expansive collection of knickknacks that includes large angels, small cherubs, tiny figurines, itsy-bitsy spirits and even one about 2 feet tall with delicate wings that move with electrical power.
She confesses to being “angel-minded” throughout her life, adding that the collection is reminiscent of the couple’s moves to various cities throughout the years.
The devil was in the details when a move to Onalaska loomed in their future, with Barb’s pressing question being, “Onalaska — is that any indication of how cold it is?”
Onalaska ‘one of God’s best-kept secrets’
Now, she says, “This is one of God’s best-kept secrets.”
Charles failed in his attempt to keep one secret, after checking out several houses during his scouting trip to the Coulee Region, with a job at UW-L on his itinerary.
Back in Ohio, discussing the potential choices, Charles told her that one house in particular was too expensive and would not be on their tour of homes for the final selection.
After surveying the options, perhaps the devil made the Realtor do it, suggesting a tour of the forbidden fruit.
Barb was mesmerized with the home on Oriole Lane in Onalaska and, because the husband of another woman who wanted the house forgot to submit a bid, the Martin-Stanleys beat him to the punch and snapped it up.
“God had this house in mind for me,” said Barb, noting that she became good friends with the other woman who had coveted the house. “I call it Angel City. It is my blessing.”
“I am seeing more patients with MCI now, and it is a growing concern since it may be develop into a dementia, most commonly Alzheimer’s disease.” Dr. Cony Santillan, Gundersen Health System
“Sharing stories is powerful, because it helps other people.” Amy Brezinka, Caregiver Coach Program coordinator