When Diagnosis Leads To Entrepreneurship

Spina bifida, Parkinson's Disease, and Type-1 Diabetes. For these three entrepreneurs, their conditions were what launched them on the path of business success.

Some give into fear and uncertainty after a medical diagnosis. Others treat it as a call to action, reveling in the resilience, empathy, and creative problem-solving skills they’ll need to develop as they navigate life with a chronic medical condition.

It’s not too different, when you think about it, from the traits entrepreneurs need to develop to survive.

The CEO Who Wanted To Gamify Rehab

Just ask Scott Kim, who’s now CEO and cofounder of NEOFECT USA, a company that creates smart rehab products. Unlike most kids growing up in South Korea, Kim wasn’t allowed to learn Taekwondo. Kim was born with spina bifida, a condition where the spinal cord does not develop or close while in the womb. While other kids took Taekwondo, he spent countless hours in rehab from about the age of six to ten.

Scott Kim’s experience with spina bifida inspired him to create the RAPAEL Smart Glove.

“The biggest problem to me, besides the outdated facilities and tools [available to kids with spina bifida in South Korea], was I found it very boring and I wasn’t sure if I was progressing or not,” he says.

Fortunately, Kim did progress to the point where he was able to start playing sports with his friends at around 12 and 13. He even eventually started playing soccer competitively. But he never forgot the experience of having to sit on the sidelines, and when he went to the University of Virginia, where he earned an MBA, he focused on ways to improve the rehab experience for sports-loving kids like him.

What if they could gamify rehab to quantify progress and actually make it fun? He visited rehab clinics to hone his idea. “To my surprise, the rehab facilities that I saw in the United States in 2010 was not too different from the clinics I used in the early ’80s in South Korea,” Kim says. “A lot of things still look very analog. It doesn’t look very exciting. Doesn’t look like it measures the progress.”

To my surprise, the rehab facilities that I saw in the United States in 2010 was not too different from the clinics I used in the early ’80s in South Korea.

That’s why, in 2015, Kim’s company launched the RAPAEL Smart Glove for hand rehab. “Once you put it on your hand, it becomes a controller, so you can play games with the glove on at the same time you’re going through the rehab process,” Kim explains. Games include tasks like squeezing an orange, catching a baseball, throwing darts, or pouring wine.

Eighty percent of NEOFECT USA’s customers are stroke victims, according to Kim. “Others are traumatic brain injury or spinal cord injury patients,” he adds. NEOFECT sells its products to clinics including Stanford Healthcare and the Department of Veteran Affairs, as well as direct to consumer. “Our hope is that we can help people get access to the rehab tools at home so that they can get better,” Kim says.

The Woman Who Wanted To Make Type 1 More Fashionable

Carolyn Jager, founder of Sugar Medical

Carolyn Jager, founder of Sugar Medical, a line of fashionable and functional bags for diabetes supplies, also drew business inspiration from her youth. As a style-conscious teen who was diagnosed with type-1 diabetes at age 13, Jager didn’t like carrying around the ugly black medical bags that came with her glucose meter, so she’d make her own bags or have her mom make some for her.

Flash forward a few decades. After leaving a job as a buyer for Macy’s, Jager was looking for a new project. A family friend needed a pancreas transplant due to complications related to diabetes, an incident that served as a wake-up call for Jager. “It scared me quite a bit,” she says.

Jager launched her business in 2009. “I’m not a scientist or anybody who can cure diabetes,” Jager says. “But I could make improvements in how [people with diabetes] carry their glucose supplies and avoid complications that arise from poor glucose control.”

We’re offering the public a better way to carry supplies without people asking ‘what is that?’ This is a line of bags that no one would think are a medical bag.

Sugar Medical bags aren’t just pretty; they’re also practical. Jager points out that a bag with a bright teal stripe or a big purple butterfly is easier to spot in the bottom of your gym bag or across the room.

Plus, the bags include a built-in receptacle for glucose test strips that otherwise wind up everywhere. “There’s a vinyl-lined compartment which you can wipe out and clean,” Jager says. “It can hold up to 200 test strips. It’s not necessarily the diabetic who finds in the best feature; it’s the family members who don’t have to pick up strips all over the house.”

A look at Sugar Medical’s line of fashionable diabetes kits.

In addition to selling to consumers online, the 5-person company now has a licensing agreement with an insulin pump manufacturer, and the bags are included in a care kit provided to people who are recently diagnosed with type-1 diabetes. “We’re offering the public a better way to carry supplies without people asking ‘what is that?’” Jager says. “In the Type 1 and Type 2 diabetes community, there are a lot of individuals who are sensitive to being labeled as “diabetic” and are embarrassed to carry their supplies. This is a line of bags that no one would think are a medical bag.”

The Shoe Maven Facing Parkinson’s In Heels

Meanwhile, Tonya Walker received her diagnosis in adulthood, but like Jager and Kim, she used the experience as an impetus to make an impact on other patients and their families.

Starting around 2006, Tonya Walker noticed that her left arm didn’t swing when she walked, and had also lost dexterity. Two years later, the Florida mother, then 34, was diagnosed with Parkinson’s disease. “My husband and I went to the doctor together, and we didn’t talk about it the whole way home,” she recalls. “Really, we didn’t talk about it for five years. We basically chose to ignore it. I think I was living in denial. I didn’t tell anybody except for my immediate family.”

Walker loved high heels but Parkinson’s messed up her balance, so she could no longer wear them. Then in August 2013, Walker had her first brain surgery and her balance improved to the point that she could dust off her high heels. “We decided to start a fashion and shoe blog and use it as a platform to raise Parkinson’s awareness,” Walker says. “When society thinks of a person living with Parkinson’s, they don’t envision someone in their thirties.”

Tonya Walker, who has Parkinson’s, started the Show Maven to prove that fashion transcends illness.

The Shoe Maven launched in 2014, and has two main audiences, according to Walker. For people who don’t have first-hand experience with Parkinson’s, she says “they see fashion and may not even realize I have Parkinson’s.” Then as they read her bio or dig deeper in the archives, they might learn about her diagnosis and about the disease.

The other audience is people with Parkinson’s, especially with young onset Parkinson’s like Walker. “They can go to my blog see that I’m living a joyful, happy life with the disease,” Walker says.

The blog is mostly a passion project, but it has helped Walker raise money and open doors to other opportunities. For instance, she sold T-shirts called TSM Originals and donated $5 from the sale of each shirt to the Michael J. Fox Foundation for Parkinson’s Research. She also organizes an annual fundraising event called Art of Fashion in collaboration with local fashion boutiques, museums and galleries.

Walker’s online presence as a blogger has led to speaking engagements with pharmaceutical companies and community organizations. She also shared her story during the World Parkinson Congress in 2016 in Portland, Oregon. As Walker works towards higher-profile gigs as a motivational speaker, she says, “I don’t want other people to feel like they have to live in denial or secrecy.”


Two Traumatized Brains, Aligned

As I recover from a stroke, I am better able to understand and relate to my mother's Parkinson's.

My mother’s neurological conditions lurked menacingly in the background for years, growing stronger until they were impossible to ignore. By contrast, my brain was rocked by a sudden and drastic explosion that came out of nowhere. Yet through these different routes, my mother and I found ourselves selves sharing a similar experience: one that was frightening and frustrating in equal measure.

In my mother’s case, it starts with lights in her brain starting to dim, ever so slowly. First came the tremors. Slight enough almost to ignore, except we’d seen my grandfather, who had Parkinson’s, exhibit those same tremors before he died, nearly three decades before. We tried to remain in blissful denial for as long as possible, but for my mother, she soon started living the cruelest sort of déjà vu. Soon, she was mixing up her words and calling us by the wrong names, until eventually, an official diagnosis came around that confirmed what we already knew: Parkinson’s Disease, along with Lewy Body Dementia.

Of course, I had considerable sympathy for what my mother was going through, but I couldn’t truly understand. Then, I suffered a stroke, and her challenges soon became a lot more relatable to me.

Like most strokes, mine exhibited itself both physically and mentally. The first sign: While I didn’t have tremors exactly, I was unable to control my hand movements, I lost control of my right arm and hand. At the hospital, I couldn’t sign my admission forms, or even hold a pen. My entire right arm seemed to have a mind of its own, flopping around in a way that made me feel like a seal with a broken flipper.

I had considerable sympathy for what my mother was going through, but I couldn’t truly understand. Then, I suffered a stroke.

Comparatively, the cognitive issues weren’t as evident right away, but ultimately, they were worse. The stress and confusion I experience in the early hours of the stroke masked the mental impact, at least at first. It wasn’t until later, after the urgent tasks of getting myself care had been completed, that I tried to focus, and realized I couldn’t. By the time an MRI showed that my stroke had occurred in an area of the brain associated with reading, writing and language comprehension, I already knew: I’d found myself constantly typing the wrong words, and felt that frustrating sensation of having a word on the tip of my tongue with alarming frequency.

For someone who writes for a living, and reads with passion, it was a major blow. Just trying to get through normal routine daily tasks—calling to make a doctor’s appointment or writing a casual email to a friend—was like running an obstacle course lined with forgotten words and foggy thoughts. The pages of my favorite books became minefields where words and sentences I’d read countless times before lost all meaning, and stopped me in my tracks. It was like something was suddenly blocking the route between my eyes and my brain.

The author and her mother on the day of her wedding.

One day, it dawned on me: This must be what it’s like for my mom.

It wasn’t quite exactly the same, of course. My mother’s diseases were progressive, and her symptoms were only going to get worse. In my case, the future was a big question mark. As my doctors kept reminding me, the brain is a complex and mysterious entity. Each stroke is a bit different, and so too is its aftermath. There’s no surefire way to predict which of my deficits will be permanent, and to what extent. Like many stroke patients, I did see spurts of improvement as I recovered, but it’s impossible to know when you have reached the point where it’s the best it’s going to get. Still, I do have a constant series of tiny victories, and moments when I discover that something has finally become easier. But my feelings of joy in these moments is now tempered by the realization that my mother will probably never enjoy those same kinds of all-important wins.

That’s when I contemplate the difference in our journeys. While many of our current challenges may be similar, we are like the proverbial ships passing in the night. Briefly in a similar spot right now, but arriving from different origins and destined to head off into separate paths.

I have gained the type of insight into a piece of my mom’s world that can only come from firsthand experience.

Our courses may only have converged for a short time, but I consider this a rare and valuable opportunity. I have gained the type of insight into a piece of my mom’s world that can only come from firsthand experience. This greater understanding of her reality has allowed me to have a deeper understanding of all of the many challenges she must overcome on a daily basis. In turn, this has motived me to be more patient and compassionate, and to look for ways that I can offer support that might make her life just a little bit easier.

I know that I will probably never to be able to fully grasp what it’s like to be in my mother’s position. However, I am grateful for this experience that has given me even just a little more appreciation into the courage and strength she must summon every day just to do simple things many of us take for granted. I now realize how much of a warrior she really is. And the same goes for everyone else who lives with neurological challenges and serious health issues.

I certainly won’t go so far as to say I’m glad I had a stroke. But I think there’s a positive silver lining to any experience that allows us to have greater compassion towards and understanding of those around us, and the struggles they may be facing in silence. I hope we can all look for opportunities to connect with those who need our support. Often, just knowing that someone is listening and can understanding their struggles can make a huge difference.

For me, this little glimpse into my mom’s world—however fleeting it may be—has truly changed my life. And I hope this shared connection and the effect it has had on me has also improved hers, in some small way.

Health & Fitness

A Dance Class for Parkinson’s

By teaching people with Parkinson's Disease how to dance, David Leventhal hopes to give students a chance to shed their identities as patients and become creatives instead.

On an April afternoon in Brooklyn, dancers gather around their teacher for an Afro Caribbean dance class. Some are dressed in t-shirts and stretchy pants, some have their socks on, others go barefoot. The students are mostly over 60, but some are younger, with companions ready to join them in dance.

Soon, the drummer begins and it’s time to warm up. The dancers stay seated for this part. But before long, they’re up, migrating across the floor as they repeat a new step, their arms raised high in the air, as if they’re rejoicing in a rainstorm.

This class is much like any dance class in the world, except here, all the students have been diagnosed with Parkinson’s Disease, a progressive nervous system disorder that can cause shaking, tics, stiffness and slowed movements.

David Leventhal leads a class. Photo: Christian Tessier

David Leventhal, a co-founder and Program Director of Dance for PD, started teaching these classes 16 years ago. Leventhal, who moved to New York to become a professional dancer in 1996, was working for the Mark Morris Dance Group in the fall of 2001, when a woman named Olie Westheimer approached the company.  Westheimer was the founder and Executive Director of the Brooklyn Parkinson’s Group. She asked the dance company, which had just opened a new studio in Brooklyn, if teachers there would create a dance class for Parkinson’s patients — without treating them like patients.

At that time, researchers were already studying the ways that dance could benefit those with Parkinson’s, as well as those who’d had strokes or traumatic brain injuries. But as a classically trained professional dancer with no personal link to Parkinson’s, none of that research was on Leventhal’s radar yet.

This class is much like any dance class in the world, except here, all the students have been diagnosed with Parkinson’s Disease….

“I didn’t know anything about Parkinson’s at that time,” Leventhal said. “But Olie (Westheimer) saw that as a benefit. There was so much focus on symptom management at that time, and she didn’t want that approach.”

Leventhal wasn’t even supposed to teach the first Dance for PD class, his friend and colleague John Heginbotham was. But at the last minute, Heginbotham got called away on a family matter.

“When he came back, I said, John, that was so fun. Could we do this together?” Leventhal said.

That first class had eight participants and went well, as Leventhal learned how to simplify dance sequences to make them safe and fun, while still challenging students with an interesting mix of movements. So the Mark Morris Dance Group continued hosting the classes once a week, with Leventhal and Heginbotham teaching classes together.

Many of the symptoms of Parkinson’s disappear when dancing, Leventhal says. Photo: Rosalie O’Connor

“John and I just had a great relationship, we were able to create a great relay because John is a choreographer who does more on the improv side, where I was more about ballet technique,” Leventhal said.

They taught ballet but also modern dance, improvisation and jazz. Eventually, in 2015, the company expanded to include master classes in Irish dancing, Middle Eastern Dance, Flamenco, and others.

But the program offered more than just an intro into various kinds of movement; it gave students the chance to shed their identity as patients and become creatives, to focus on creating movement rather than “fixing” their bodies.

[Dance] gave students the chance to… focus on creating movement rather than “fixing” their bodies.

Leventhal watched as the experience improved student’s lives inside and outside the studio.

“A lot of Parkinson’s symptoms seem to be temporarily minimized during class,” he said. “I see a sense of rhythm coming into their bodies.”

And, he said, he watched the students getting bolder, less fearful.

“I saw them trying things in class that they may have not ordinarily have thought they could do. And that built their confidence to try other things in class or in another movement class, or to try totally different things, like singing.

Photo: Rosalie O’Connor

“One woman said that she was able to go to a family wedding and dance. She said it wasn’t just because she was strong enough, but because she had the confidence from dancing in class. Another student who came to class ended up studying tap dance on his own … and he would use the tap steps to help him get out of bed in the morning. He said that it was easier to use a tap dance vocabulary than it was to just think about putting his heel down on the floor in the morning.”

Even walking became easier for some dancers who had seen their walking slowed, impaired and sometimes “frozen” by the effects of the disease.

“Outside of the classroom, there’s an unpredictability in their movements, but not so in class,” Leventhal said. Something about dancing allows people to experience a sense of flow that they don’t have in everyday life.”

“A lot of Parkinson’s symptoms seem to be temporarily minimized during class…”

Right now, Leventhal is working with researchers from Columbia University and the University of Washington in St. Louis, to study whether dance can help people with Parkinson’s walk at a faster pace, the way they did before the disease began to progress.

Remarkably, Leventhal said, dancers don’t even have to be physically doing the dance to reap the benefits of Dance for PD.

“We give permission for people to sit and look, too … because watching dance is almost as beneficial as dancing. Your brain is going through the same action and firing in the same way that it is when you’re doing it,” he said.

For many students, Leventhal said, Dance for PD has given back a sense of mastery over the body and movement that Parkinson’s threatened to take away.

“It’s satisfying for them (to dance) … Because the rest of their movement lives are frustrating. They don’t feel mastery of things like walking or turning around,” he said.

Photo: Amber Star Merkens

Leventhal’s observations are backed by numerous studies that have now been done on the benefits of dance for people with Parkinson’s.

In studies that compared the effects of walking versus Tango classes on elderly, frail participants, for instance, both kinds of exercise made people stronger. But people who danced saw their balance and walking speed improve more. And after the trial ended, more than half the people in the Tango group kept going to class, while none of those in the walking test group continued to walk for exercise.

It’s the joy of movement and the sense of community that may set dance apart from other kinds of beneficial exercise, which explains why Dance for PD is now taught around the world, with approximately 6,000 participants taking Dance for PD or Dance for PD-inspired classes.

Photo: Rosalie O’Connor

New York has eight different Dance for PD classes, including the one in Brooklyn. And trainings for new teachers happen every year around the world in cities like Shanghai and Madrid.

For this who can’t make it to class in-person, or want to dance more than once a week, Dance for PD puts out DVDs and a monthly livestream class. It’s also developing an experimental app with Google Glasses to help people with Parkinson’s walk more easily.

Leventhal said that teaching the classes has made him a better teacher overall.

“Over the years of teaching this class, I’ve learned how to simplify, to find the essence of what we’re doing,” he said. “Now that we know a lot about Parkinson’s, we have to try even harder to keep the class an oasis, so that it’s a place that’s not driven by the symptoms of the disease, but by the development of craft and artistic exploration.”

Splash photo by Eddie Marritz.



What Happens To A Marriage After Parkinson’s

Every marriage has its own dynamic, but what happens when a motor system disorder turns that relationship upside down?

Framed by winter-stripped trees, the Rabinowitzes’ modest brick home sits on a quiet street in North Atlanta. Inside it’s warm and comfortable: artwork and family photos dotted around the walls and furniture. Two cats–Mookie and Vito–prowl around the room, swatting at spots of sunshine. Allen Rabinowitz maneuvers out of his chair.

“Morning isn’t my best time of day,” he says.

Allen sits down at the kitchen table next to his wife Jan, who is clasping a cup of coffee in her hands. The last few months have been difficult, she says, although the hardship doesn’t show on her smooth, unlined face. She’s sixty-three, but looks much younger. That’s down to genes: her mother had the same soft skin.

Two years older than his wife, Allen, too, looks younger, although his body tells a different story. He lifts his shirt to reveal surgical scars: two incisions either side of his chest where battery packs sit, part of the deep brain stimulation (DBS) system that keeps shakes and tremors in check. Cables run from his chest, up each side of his neck to the top of his skull, forming two bumps, like horns about to come through.

Allen tells the story of his rock ’n roll youth with a frank, unblinking gaze… a side effect of Parkinson’s Disease, he says later.

Allen tells the story of his rock ’n roll youth with a frank, unblinking gaze… a side effect of Parkinson’s Disease, he says later.

Brooklyn-born and -bred, his love of music writing started in college, eventually leading to career that saw him work as a roadie, band manager and finally, music editor.

New York City in seventies and eighties was an exciting place and time for music lovers and Allen had a front-row ticket to the action. He met The Kinks and the Beach Boys’ Dennis Wilson, as well as witnessed the birth of punk.

Inevitably, there were a few rock ‘n’ roll adventures, including a memorable stand-off with Patti Smith, Bruce Springsteen and the New York Fire Department during his stint as box office manager at legendary music venue CBGB.

“It was the night before New Year’s Eve and we had Patti Smith. Bruce Springsteen was a surprise guest. Someone alerted the fire department that there were too many people. These beefy guys came down, all these big galoots. They wanted to stop the show,” he remembers. “Patti Smith was shouting ‘do you know who I am? There will be a riot! Blood will be on your hands!’ Everyone was in uproar.”

“There was a stand-off, I tried to calm things down. They agreed to let Patti and Bruce finish a couple of songs. Patti wouldn’t stop shouting about wanting to play more songs. She was a bit of a brat, she had an attitude.”

Another highlight was when Mink DeVille, a band that Allen worked as a road manager and publicist for, was signed by Capitol Records. “I even sing on their record,” he says. (“He can’t sing,” Jan chips in.)

Inevitably, there were a few rock ‘n’ roll adventures, including a memorable stand-off with Patti Smith, Bruce Springsteen and the New York Fire Department during his stint as box office manager at – the CBGB Second Avenue Theater, an offshoot of the legendary music venue CBGB.

But the good times came to an end. Tired of being broke, living on his uncle’s couch, Allen left New York thirty-eight years ago for a fresh start in Atlanta. He had no connections, but armed with a Brooklyn attitude, he landed the job of his dreams: a gig as the music editor for Atlanta’s Marquee Magazine.

“It’s amazing what you can do if you have chutzpah,” he says.

It’s amazing what you can do if you have chutzpah.

The couple met twenty-eight years ago at a singles night, when, in a story as old as love itself, eyes met across a crowded room. Later, they found themselves in a conversation about dogs.

“I said I loved dogs, but I didn’t want one because they’re too much work,” Jan says. “He thought it was funny.”

“You were funny,” confirms Allen.

“I’m not as funny anymore,” she says.

They exchanged details and after a whirlwind romance became engaged, then married. Their son Joey was born a few months later.

The next few years of life, work and childrearing passed in a happy blur. The first inkling Allen had that something was wrong came in 1998, watching a baseball game on the television.

“I was watching the World Series. It was the Yankees. All of a sudden I saw my boss on TV. I reached for the phone to phone him, and I saw my hand was shaking. Then it went numb.”

Allen saw a doctor, who told him it could be anything, so he waited. When his symptoms became worse, he saw a neurologist.

“The neurologist was a young woman. Within five minutes she diagnosed me with Parkinson’s Disease. The first words out of my mouth were ‘I want a second opinion’.”

The next doctor, a veteran in the field, took just two minutes to confirm the diagnosis.

“I was numb. The hardest thing was telling Jan and Joey, who was nine. The first thing Joey asked was: am I going to get it too?”

The first couple of years after the diagnosis weren’t too bad. But when Allen’s father died in 2001, the stress sent his symptoms up a notch, and eventually, the disease took over their lives.

“He had no quality of life,” Jan says. “He weighed a hundred and twenty pounds. He had a moustache before, but he became the moustache, all skin and bone. The sweat would drip off his head. It got to the point where he couldn’t sit in one place for more than a few minutes. He couldn’t drive, he couldn’t read; his leg would constantly be moving, it would move the rest of him.”

[Parkinson’s] was like an earthquake going on in my body.

“It was like an earthquake going on in my body,” Allen adds.

The cocktail of drugs to address Allen’s symptoms came with their own problems.

“One dopamine agonist, Mirapex, gave him paranoia,” Jan says. “It was hardest on Joey, who was fifteen or sixteen at the time. One time, Allen decided he was leaving. He had Joey take empty suitcases down to the car. He went to a hotel and called every half an hour.”

And then there was the incident where Allen accused Jan of having an affair. “There is a REM Behavior Disorder caused by the disease, and you act out your dreams. One night, when he started going nuts I put my arm out to stop him and he bit my thumb. Then he told me I was having an affair.”

In 2011, Allen elected to have brain surgery to install a Deep Brain Stimulation system, which can help control the most debilitating symptoms of Parkinson’s. During the five-hour operation Jan watched as surgeons drilled holes into her husband’s skull, implanting the electrodes that send electrical impulses to targeted parts of his brain to help motor function.

The surgery helped Allen regain a semblance of normal life, although he says Parkinson’s brings a few “wonderful surprises” to keep them on their toes. Insomnia is a constant and unwelcome guest, affecting not just Allen but Jan’s sleep quality too. However, the insomnia had its own unexpected side effect.

“One of the weird things about Parkinson’s Disease is that it opens up aspects of creativity,” Allen says.

One of the digital artworks Allen has been experimenting with since Parkinson’s.

Once, during a three-night run without sleep, he began manipulating images with Photoshop.

One of the weird things about Parkinson’s Disease is that it opens up aspects of creativity.

Allen leaves the room and returns with four binders, which he places on the table. He leafs  through his work, pointing out his favorites. The carefully numbered print-outs feature real and imagined cityscapes, pop-art style images of his music idols, bright crowds of people and rows of yellow taxis.

Although the days of nine-to-five are long gone– “work went to hell in a hand basket”– the creativity’s still flowing. Along with his Photoshop art, Allen’s still writing: short stories, and two novels based around his youth in 1960s New York City.

Jan is matter-of-fact about the toll caring for Allen has taken on her. Until 2011, she worked in market research. It was a career she loved, but the stress of caring for Allen–as well as other pressures like her elderly mother beginning to need more care–overwhelmed her. She still struggles each day, she says.

“I’m sleep deprived. I’m overwhelmed. I’m overweight, because I eat my stress. I can’t keep up with anything. I have depression, high cholesterol and blood pressure, and sleep apnea. I see a therapist and psychiatrist.”

Jan says Parkinson’s has forced the couple to confront a permanent shift in their relationship dynamic.

“One of the reasons I married Allen is because he has always been very protective of me, and he told me he will always take care of me. Unfortunately, he can no longer care for me in the same ways he used to. He takes medication to help him sleep, so he is unable to jump up out of bed and walk around, so if we hear a noise in the middle of the night, I have to check it out.

“I know he’d like to still take care of me, and he tells me this all the time. It just isn’t possible the way it used to be.”

Separating the disease from the man she married is a daily challenge, she says.

One of the reasons I married Allen is because he told me he will always take care of me… [but] it just isn’t possible the way it used to be.

“Parkinson’s affects the entire body – every system. There are lots of new eating noises, shuffling, falls, he’s slower to process information, he has poorer sense of direction, differences in eyesight,” she says. “All of these things impact our relationship. It just isn’t the same.”

“Patience is very difficult to come by when interacting with Allen. He is often telling me to stop yelling at him. But yelling is what I do first [when I’m scared]: when he falls, for instance.”

Jan and Allen don’t talk about this new dynamic, but there is a deep understanding between the couple, Jan says.

“Allen is so perceptive that I think he understands without my having to voice it. He still takes wonderful care of my psyche, which is more basic anyway.”

For a long time Jan struggled on her own, until the chance discovery of a book in the public library. It was called Mainstay by Maggie Strong, and detailed the journey of a woman who had multiple sclerosis. Mainstay mentioned a support group for spouses of carers called the Well Spouse Association. Jan Googled the name and found a chatroom, where she’d post when she couldn’t sleep. In 2005 she went to the Well Spouse conference, and when she came home, she decided to start an Atlanta group.

Now, she’s national co-president, a role that’s rewarding, but stressful: the administration, endless politics and the problem of dwindling membership are a constant headache. “But it’s the one thing I’ll never give up.”

While Allen likes that the group gives Jan an outlet, not everyone feels the same way, she says.

“Some spouses don’t like their partners joining the organization. Some even join in secret. They’re jealous, or worried they’ll find a new partner.”

Jan sees some sad cases within the group, especially with older people. “People over seventy are often in more traditional roles, and the carers are often treated like slaves. A lot of lives are ruined: twenty percent of caregivers die before the sick person they’re caring for.”

Twenty percent of caregivers die before the sick person they’re caring for.

As with many others in their situation, money is always at the back of their minds. The state of Georgia doesn’t have provision for caregivers, so the two of them live on Allen’s disability. And they’re bracing themselves for the worst: if the Affordable Healthcare Act is repealed, Jan will likely lose her medical insurance. She’s already made compromises to the detriment of her health care for the sake of cost: switching expensive branded medication for cheaper, less-effective generic brands, while some meds she’s had to give up altogether.

“It’s been the worst couple of months. Every day I get up and pray Trump hasn’t done anything [to the Affordable Healthcare Act].”

And of course, while Allen’s still pretty independent, this will likely change. Recently, he’s developed walking problems. While making a sandwich, he fell and broke his finger. Another day saw him smash the glass in the front door when he couldn’t stop after rounding the corner in the hallway.

What will happen when Allen’s care is too much for Jan?

Jan and Allen, posing with one of his artworks.

There is a brief silence, and Jan and Allen look at each other across the table. “We need to discuss what to do,” Jan says. “But we’ve decided when he starts needing help with personal care he will live in a facility.”

Outside, Jan sighs at the crumbling plant pots by the front door, filled with dry, cracked earth. “I need to do something about these,” she says apologetically. But she doesn’t have the time or the energy for gardening.

Then she smiles.

“We probably say ‘I hate Parkinson’s’ to ourselves or each other every day. But we’re lucky. I know we are. It could’ve been worse, there are others far worse off than we are.”

It’s been difficult explaining the impact of Parkinson’s Disease to family members, they agree. Some have been less than sympathetic.

“My father said ‘No one in our family has it, you don’t get it from us,’ says Allen. “I also heard: ‘why are you walking that way?’

“I was visiting my mother in Florida and I had a tremor. ‘Stop that,’ she said. ‘I can’t, I have Parkinson’s Disease,’ I said.” He smiles, wryly, at the memory. “She responded: ‘Well, at least take your hand off the table.’”


Health & Fitness

Wheels Of Change

After a diagnosis of Parkinson’s Disease, Kim Spletter thought she’d never ride a bicycle again. Now she’s teaching others how to pedal through their illness.

It’s mid-morning at the YMCA of Frederick County in Frederick, Md., and a group of 13 people are poised on stationary bicycles as a catchy Beach Boys song plays on the speakers. Kim Spletter, who teaches the Pedaling for Parkinson’s class sits on a bike at the front of the class, acting as half drillmaster/half cheerleader as she encourages class participants to pedal fast and maintain speeds of 75 to 80rpm.

Kim Spletter.

When Spletter of Frederick, Md., was diagnosed with Parkinson’s disease at the age of 45, she thought her days of bicycling were over. An avid athlete who had enjoyed biking since she was a child, Spletter had always looked forward to her daily 20-mile rides, and found them to be the perfect way to unwind after a busy day.

All of that changed seven years ago when Spletter began experiencing an array of physical symptoms ranging from tremors and stiffness to a complete lack of muscle control.

“I couldn’t balance on my bike and the tremors and muscle rigidity prevented me from pedaling,” Spletter says. “I was always an athletic person and suddenly I saw my life shrinking.”

I was always an athletic person and suddenly I saw my life shrinking.

Her doctor diagnosed her with Parkinson’s disease, a chronic and progressive neurological disease that occurs when nerve cells in the brain don’t produce enough of a brain chemical called dopamine. The Michael J. Fox Foundation for Parkinson’s disease says the degenerative movement disorder affects over one million people in the U.S. Although the average age of onset is 60, people are diagnosed as young as 18.

While there is currently no cure for Parkinson’s, medication and therapy are used to treat symptoms of the disease including tremors and shaking, stiffness and slow movements.

A retired sheriff’s deputy, who was used to an active lifestyle, Spletter had a hard time accepting her diagnosis and the realization that suddenly nothing physical was easy for her.

“I couldn’t walk for any distance, and I had trouble dressing myself,” she says. “All of my joints hurt and the dopamine replacement medication that I was taking for Parkinson’s made my dyskinesias (abnormal involuntary movements) worse.”

Mourning her loss of independence, Spletter felt hopeful when her doctor suggested she take part in a new clinical trial at the University of Maryland Medical Center. The study would use a noninvasive approach called focused ultrasound, to target and heat the abnormal brain cells associated with dyskinesia.

Over the course of four hours in September, 2015, Spletter received a series of focused ultrasound waves that passed harmlessly through her skull to kill a targeted group of cells. After the 11th wave, she had regained 70% of her strength on the left side of her body, and while Spletter had been taken by wheelchair into the procedure, she was able to walk out on her own after it was completed. In addition, her symptoms of trembling and shaking subsided almost immediately.

As one of the first Parkinson’s patients in the United States to undergo the procedure, doctors told Spletter that while the focused ultrasound procedure would make her symptoms less debilitating, they weren’t sure how long the results would last. Spletter, however, was undeterred by the uncertainty of her prognosis and determined to make the most of her second chance at mobility. Today, over a year and a half after her treatment, many of Spletter’s symptoms continue to diminish.

“The procedure turned back the clock for me,” says Spletter who decided to make the most of her newfound freedom. She began walking and biking, and taking spin classes at her local YMCA. She found that a regular biking regimen and spin classes were especially helpful in keeping her Parkinson’s symptoms at bay.

Research supports Spletter’s claims showing that cycling can ease the symptoms of Parkinson’s, and possibly even slow the progression of the disease.

Cycling can ease the symptoms of Parkinson’s, and possibly even slow the progression of the disease.

A 2012 study conducted by Dr. Jay Alberts, at the Cleveland Clinic found that patients with Parkinson’s disease benefited from exercise using stationary bikes. In the study, those who pedaled fast on a stationary bike, at speeds of 75 to 80 rpm, 3 times a week for 8 weeks, showed a 35% improvement in their symptoms including balance and gait. Alberts found the intense rhythmic motion of cycling helped Parkinson’s patients in the same way that anti-Parkinson’s medication to increase dopamine levels in the brain. Other high-intensity sports may also benefit Parkinson’s patients. Rock Steady Boxing, a program that uses modified boxing techniques to help people with Parkinson’s, was developed by a Parkinson’s patient and is now offered at more than 150 gyms across the country.

Even better, the benefits of cycling lasted from hours to days. Impressed by Alberts’ continuing body of research, many YMCAs across the country have started offering Pedaling for Parkinson’s classes.

Kim on a morning cycle.

Two years ago when the YMCA of Frederick County was asked if they might consider offering the stationary cycling program for Parkinson’s patients. They approached Spletter, who was already participating in spin classes at the facility, and asked if she’d like to teach the Pedaling for Parkinson’s class.

After obtaining online certification through Parkinson’s Cycling Coach, and learning how to teach a guided cycling class specifically for Parkinson’s patients, Spletter began teaching classes in late 2015, and became the first YMCA instructor to teach Pedaling for Parkinson’s that actually has the disease.

“A lot of people come to Pedaling for Parkinson’s that wouldn’t normally come to a regular exercise class,” she says. “They tell me their symptoms disappear while they’re on the bike, and that it’s the only place they don’t feel as though they have Parkinson’s disease.”

Unlike a regular spin class where participants may stand on their stationary bikes, Parkinson’s for Pedaling classes focus on strengthening legs and core and concentrate on cardio exercise. The results are nothing short of amazing, and Spletter says the benefits are similar to those she received from undergoing the focused ultrasound procedure.

“I’ve had Parkinson’s patients who have become sedentary and couldn’t complete even 15 minutes of the cycling class when they started and now find it isn’t a problem to go the entire 45-minutes,” Spletter says. “They say the classes make them feel stronger, less fatigued and improve a lot of their symptoms.”

Perhaps just as important as the physical effects, are the emotional benefits of such a program, and the fact that the classes allow patients to take an active role in managing their disease.

“I look at the Pedaling for Parkinson’s classes as a support group that also offers exercise,” Spletter says. “A lot of people who have balance issues as the result of Parkinson’s, are afraid to exercise but after taking this class, they feel confident enough to go on and try water exercises or light weights.”

Once a month, Spletter’s students who are men and women in their fifties and sixties, enjoy lunch after class.

I feel as if I’ve been given a second chance.

“My students have said they enjoy being in a class with others who can relate to the struggles they face with Parkinson’s,” Spletter says. “Although many are at different stages of the disease, they share a common bond.”

Because the Pedaling for Parkinson’s classes are still relatively new, researchers aren’t sure how long the improvements that occur as the result of cycling will last. But after years of being told that medication was the only treatment for Parkinson’s, patients such as Spletter are thrilled that options such as focused ultrasound and Pedaling for Parkinson’s classes are now offering hope.

“I feel as if I’ve been given a second chance,” Spletter says. “I’m hoping the focused ultrasound treatment, combined with the spin classes, will delay the progression of my disease long enough that researchers are able to find a cure for Parkinson’s.”


The Good Fight

How Fashion Is Getting Friendlier

From homegrown labels to Manhattan's top designers, more brands than ever are realizing that people with conditions want to be fashionable too.

From homegrown labels to Manhattan’s top designers, more brands than ever are realizing that people with conditions want to be fashionable too.

One day, former North Carolina State assistant football coach Don Horton came home and told his wife Maura that he could no longer button his own shirt. The coach had Parkinson’s, and that day, one of his team players had buttoned his shirt for him. Maura remembers, “It haunted me, to tell the truth.” He was leaving for a business trip the next day, and they were strategizing how he could keep buttoning his shirts away from home. “He was going through so many changes I couldn’t help with—but this, I could.”

Maura had noticed that the concept of a magnetic iPad cover could be applied outside of electronics, to make shirts easier to button. She applied washable magnets underneath his shirt buttons. Then, she expanded her sights to helping more people with arthritis and a spectrum of afflictions that make buttoning painful or difficult.

“I decided to take a huge leap of faith, and we started a company,” she said. To date, her company MagnaReady has sold more than 10,000 shirts, and they will soon appear in retail stores through a deal with PVH, which owns Tommy Hilfiger and Calvin Klein.

More brands than ever are realizing that people with chronic conditions need to feel fashionable too.

More brands than ever are realizing that people with chronic conditions want to feel fashionable too.

MagnaReady is part of a growing group of companies that give fashionable solutions to consumers with specific health needs.

Care+Wear launched two years ago, also based on a personal connection, and they dub themselves “healthwear.” The founders had seen family members and friends unhappy about the unfashionable tube socks they had to wear over their PICC lines while getting chemotherapy. Now, they sell antimicrobial covers in a variety of colors, in addition to shirts that accommodate patients with ports. Covers and shirts are now sold in Walgreens, and available to patients at a number of hospitals including the Mayo Clinic, the Cleveland Clinic, as well as hospital gift shops nationwide.

“I do think it’s a trend,” Horton says. “Sometimes, it’s still on the cheaper manufacturing side of things. There have not been any luxury brands that have tackled it. None of the large brands have fully embraced it.”

This is exactly the gap that many of these companies are hoping to bridge. Horton has noticed that clothing for patients has focused on function over aesthetics. Although that might seem superficial or unimportant, frumpy clothing comes at an emotional cost.

After being diagnosed with a disease, all that’s available are elastic waist pants?

“After being diagnosed with a disease, all that’s available are elastic waist pants?” she says, remembering her husband’s dilemmas. “That changes the way you feel about yourself if you’re not dressing like the way you want to, or you’re used to. The older population, 50 to 60, they don’t know what a casual Friday is. That generation, even if they’re retired, they wear a button-up shirt because that’s what they’re used to. If they can’t wear a button-up shirt, it affects their self esteem.”

Care+Wear's armband is fashionable and keeps PICC lines secure.

Care+Wear’s armband is fashionable and keeps PICC lines secure.

In the past, what was available on the market made patients feel limited or uncomfortable, says Chaitenya Razdan, founder of Care+Wear. Chemotherapy used to mean staying in the hospital or on the couch, but advances in technology make patients more mobile today. One of the company’s customers was worried she had to quit her collegiate running career because of her PICC line. But when she showed her doctor her PICC line cover through Care+Wear, the doctor gave her the OK to keep running. Another customer was self conscious about going to prom with her PICC line, but she found a cover that matched her prom dress.

“It’s designed to be clothing first, not to feel like: Oh my gosh, I have to put on my special chemo shirt today,” Razdan explains.

Accomplished fashion designers have directed their talents toward solving for this underserved market. Izzy Camilleri has been featured in Vogue and designed for celebrities like David Bowie and Meryl Streep before she got a special commission from a journalist who uses a wheelchair. The project was eye-opening, and Camilleri began to realize how neglected an entire population had been up until that point. The designer decided to shift her focus toward making fashionable clothes for wheelchair users and launched IZ Collection. Since then, like Horton and Razdan, Camilleri has realized how psychologically important clothing can be.

It’s designed to be clothing first, not to feel like: Oh my gosh, I have to put on my special chemo shirt today.

“This woman called me after receiving her skirt,” Camilleri says. “She just wanted to tell me …  she’s worn it every day since she’s gotten it. It made her feel human again. That’s huge. I have other people tell me it’s changed how they feel. They’re starting to care more about how they dress. It makes them feel alive.”

Sadly, a worthy mission and passionate customers aren’t always enough to keep a business afloat. Camilleri recently announced that she’s putting IZ Collection on an indefinite hiatus to regroup and figure out her market. She’s had trouble balancing overhead with the number of customers in her market. Occupational therapists have told her that their patients are slower to try new clothing. It’s also difficult for customers to buy an item online when they have very particular fitting needs and can’t try the clothing on in person. “It’s hard maintaining overhead and stock and everything when things grow slowly,” she says.

The IZ Collection.

The IZ Collection by Izzy Camilleri is as stylish as anything out there.

It’s also tricky to market to customers not necessarily united by the same interests, but simply by the same needs. “Just because you all have a spinal cord injury doesn’t mean you all want the same thing. It’s a massive undertaking to get the brand out there because everything is scattered to the wind: [People] aren’t all looking at the same disability magazine.”

“There are a lot of people out there who need what we do,” Camilleri says. “But it’s about finding that common thread that links people together.”

Still, the needs are there, and where there is a gap, there are also business opportunities. Horton has started selling her magnetic shirts in department stores such as Kohl’s and JCPenney.  

If there’s one thing Horton has learned about the fashion industry, it’s that they are slow to change. “But once they understand some of the demographic base and once they get it, they fully embrace it. It’s been a journey just to get initiative behind it. Adaptive clothing, they see it as a niche market, like: Oh, that would help two percent of buyers. But when you take it out into the marketplace, that’s when they realize it’s a necessity.”

Customers helped some big retailers understand the market demand, Horton says. “Once it was in the marketplace, people were like, ‘My gosh, my cousin, my uncle, my niece… they need that!’ We have to change it from being a niche to a necessity.”