Health & Fitness Neurological & Cognitive Disorders

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.

 

Neurological & Cognitive Disorders Q&As

What To Do When Someone You Love Has Alzheimer’s

Alzheimer's is often called the "family's disease." There's a reason for that, says Ruth Drew of Chicago's Alzheimer's Association: with dementia, the whole family's in it together.

Over the last year or so, a relative of mine has become more forgetful. She doesn’t recall things people tell her just minutes before, and becomes frustrated when she feels that people are condescending to her. Yet without their intervention, she forgets things both trivial and profound–whether she has eaten breakfast, for example, or whether her aunt has died.

Although she has not been diagnosed yet, signs point to some sort of dementia, possibly Alzheimer’s. They call dementia a “family disease” because it affects not just the individual, but the family: studies show that supporting someone during this time is time-, energy-, and heart-consuming. But we’re all in it together, so while we wait for more tests, my family tries to support her as best we can.

I, too, am trying to prepare to do my part. But what can I do? What can I say? How do you help a person improve their quality of life while maintaining your own mental and physical health in the onslaught of a disease like dementia?

I didn’t know, so I asked an expert for tips on how to guide families in becoming effective, loving caregivers.

Ruth Drew, director of Family and Information Services at the national office of the Alzheimer’s Association in Chicago

Ruth Drew, a licensed professional counselor, is the director of Family and Information Services at the national office of the Alzheimer’s Association in Chicago. There, she leads the work of The Contact Center, a nationwide 24-hour helpline offering information and counseling to people affected by Alzheimer’s disease.

Drew has a personal interest in the work of the Alzheimer’s Association because her late grandfather had the disease. She told me more about what I could expect, and how I could be there for my loved one as she voyaged into the foggy, undiscovered and unpredictable world of dementia.

The goal is to be so much more than caregivers or well wishers for family.  What I’ve learned from Drew’s insight is to not only show love and empathy, but to also practice gratitude each day; gratitude for the one life we have, and gratitude to be a source of strength when our loved ones are losing theirs.

Why is dementia referred to as a family disease?

A diagnosis of Alzheimer’s disease or other dementia impacts the entire family. It exacts a considerable emotional, mental, physical and financial toll on families, particularly primary caregivers. At its core, families experience the gradual decline of someone they love. This leads to feelings of loss, grief and sadness.

Are scientists finding that families who provide support and/or who are educated on the disease have a positive impact on people with dementia?

Being an informed caregiver is one of the greatest gifts you can give to a person living with Alzheimer’s and other dementias. The more you know about the disease, its progression and what to expect, the better prepared you’ll be to navigate its challenges. Since both Alzheimer’s and dementia are progressive diseases, the needs of the person living with the disease will escalate over time. Anticipating and preparing for the changes, including securing additional help as needed and availing yourself to available resources, is beneficial to both the person living with the disease and their caregivers.

What are some of the first steps a family can take when learning a loved one’s diagnosis?

Receiving a diagnosis of Alzheimer’s is never easy — it’s life changing, not only for the person receiving the diagnosis but for their loved ones as well. There is no one right response to a diagnosis, but it’s important for family members to be supportive during this difficult time. While the individual living with the disease is the only person who can change how he or she feels about the diagnosis, you can share information and provide support to help with the process of acceptance. This can include helping a loved one identify new priorities in the wake of a diagnosis and steps you can take together to move forward, finding new ways to live a positive and fulfilling life. In addition, it’s important to discuss more practical matters such as legal, financial and long term care planning. While these conversations can be difficult, providing the person living with the disease a voice in these important issues can help guide future decisions.

What should family members be mindful of when trying to communicate with a relative who may lose their train of thought or become frustrated from the inability to communicate effectively?

Communication with a person with Alzheimer’s requires patience, understanding and good listening skills

Communication with a person with Alzheimer’s requires patience, understanding and good listening skills. In the early stage of Alzheimer’s disease, an individual is still able to participate in meaningful conversation and engage in social activities. However, he or she may repeat stories, feel overwhelmed by excessive stimulation or have difficulty finding the right word. Here are a few tips for successful communication:

  • Don’t make assumptions about a person’s ability to communicate because of an Alzheimer’s diagnosis. The disease affects each person differently.
  • Don’t exclude the person with the disease from conversations with others.
  • Speak directly to the person if you want to know how he or she is doing.
  • Give the person time to respond. Don’t interrupt or finish sentences unless he or she asks for help finding a word or finishing a sentence.
  • Explore which method of communication is most comfortable for the person. This could include face-to-face conversations, email or phone calls.
  • It’s OK to laugh. Sometimes humor lightens the mood and makes communication easier.
  • Be honest and frank about your feelings. Don’t pull away; your friendship and support are important to the person.

How should family members respond when their loved one exhibits troubling behavior?

When a person [with dementia] behaves in a way that doesn’t make sense… we need to remember that their behavior makes perfect sense to them.

First, it is important to remember that all behavior is communication. People with Alzheimer’s or other dementias often have difficulty communicating their thoughts and feelings in the usual ways. When a person behaves in a way that doesn’t make sense to a family member, we need to remember that their behavior makes perfect sense to them. Instead of dismissing the behavior, do a little detective work to try to understand. People with Alzheimer’s sometimes become anxious or aggressive. They may repeat themselves or withdraw from activities they used to enjoy. When this happens, try to figure out what they are communicating. Are they in pain, cold, hungry, sad, bored or lonely? Are they bothered by something in their environment? Sometimes we can decode the situation and help. Even when we can’t figure it out, we can respond with kindness and respect knowing that it is always worth the effort.

How important is it to establish a daily routine, or does it depend on the person and diagnosis?

A person with Alzheimer’s or other progressive dementia will eventually need a caregiver’s assistance to organize the day. Structured and pleasant activities can often reduce agitation and improve mood. Planning activities for a person with dementia works best when you continually explore, experiment and adjust. Before making a plan, consider the following:

  • The person’s likes, dislikes, strengths, abilities and interests
  • How the person used to structure his or her day
  • What times of day the person functions best
  • Ample time for meals, bathing and dressing
  • Regular times for waking up and going to bed (especially helpful if the person with dementia experiences sleep issues or “sundowning”

Make sure to allow for flexibility within your daily routine for spontaneous activities. As Alzheimer’s disease progresses, the abilities of a person with dementia will change. With creativity, flexibility and problem solving, you’ll be able to adapt your daily routine to support these changes.

Are there any specific activities a relative could to do with a patient with dementia that you’d recommend in the quest to delay the progress of the disease or improve their condition?

A person with Alzheimer’s or other dementia doesn’t have to give up the activities that he or she loves.

Staying physically and mentally engaged is an essential part of living. A person with Alzheimer’s or other dementia doesn’t have to give up the activities that he or she loves. Many activities can be modified to the person’s ability. In addition to enhancing quality of life, activities can reduce behaviors like wandering or agitation. Focus on activities the person has always enjoyed and adjust, as needed, to match the person’s current abilities.

For small families, those who live far away, or those who are unable to provide a lot of support, what are some resources available to help improve the quality of life of a person dealing with dementia?

While long-distance caregiving can be challenging, there are resources to help. Learn about what is available in your community by contacting your local Alzheimer’s Association at 1-800-272-3900 or using its online Community Resource Finder. You can also use Alzheimer’s Navigator, a free online tool that helps evaluate your needs, identify action steps and connect with local programs and services.

Creative Commons photo at top shot by Jeremy Hiebert.

Neurological & Cognitive Disorders Profiles

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.

Rock ‘N’ Roll Youth

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.

Before Parkinson’s, Patti Smith

“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.

A Fresh Start With A New Wife

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 Early Signs

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?”

What Happens When Parkinson’s Takes Over Your Marriage

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.”

Love After Parkinson’s

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.

A New Creative Life

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.”

How Parkinson’s Changes A Marriage

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.”

Finding Support

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.”

Paying The Bills

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.

The Future Unknown

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

A balding man with silver hair  in a red collared shirt, and his wife, a blonde woman in a green t-shirt, smile at the camera and hold up a framed photo of the man's computer art, showing a New York

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.

Lucky in Love

“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.’”

 

Essays Neurological & Cognitive Disorders

The Kiddie Car Syndrome

Steering a loved one through illness can bring back to the surface childhood disillusionments long thought forgotten.

The summer I was three, my parents took me to Jones Beach to play in the sand and drive the kiddie cars around a small circular track.

I took driving very seriously, negotiating every twist and turn with elaborate care.  And my efforts did not go unnoticed.

“Look how well she drives!” cried my mother.

“She stays right on the track,” said my dad.

I was impressed by my own virtuosity.  In fact, I was so good that when we went back the next year, the kiddie car operator remembered me.

“There’s that little girl who never goes off the track!” he said.

Wow! I must be really good.  I tried not to let the exhilaration go to my head as I carefully turned the wheel, not once veering off the track.   And then, inexplicably (I must have suspected something) I took my hands off the wheel.  The car kept circling the track, maneuvering perfectly around the curves with no help from me.  I was crestfallen.  I was also pissed off.   The adults had given me the distinct impression that I possessed a rare talent for kiddie car driving.  And I had believed them!  Now, it turned out, I hadn’t been doing anything at all.  Nothing, nada; it was all an elaborate lie.

This experience left me with a lingering suspicion of adults.  What other fictions were they perpetrating?   I stopped leaving cookies out for Santa at Christmastime; the kiddie car outrage had turned me into an agnostic.  And the kiddie car syndrome – the illusion of control – was a thing of the past.

Or so I believed.

“I stopped leaving cookies out for Santa at Christmastime; the kiddie car outrage had turned me into an agnostic.”

For over ten years now I’ve been guiding my husband through various health crises including several strokes, two valve surgeries, and a series of life-threatening leg bleeds caused by his medication.  John, who was a college professor for fifty years before he retired, is more interested in the geneses of totalitarianism and the paradoxes in Gulliver’s Travels than the irregular beatings of his heart.  So I became his health advocate.

And I am a fierce advocate.  I foresee danger and circumvent it at every turn.  Once I ran into a hospital procedure room where John was about to have an angiogram.

“Don’t put the catheter up his left leg!” I cried.

John had been in the hospital for several days and I suspected, from something he’d said just before the procedure, that he’d had a bleed in his left leg during the night.

My dramatic announcement stopped the doctor cold, which was a good thing because I was right about the left leg.  John had sustained a bleed during the night, and putting a catheter up his newly-injured leg might well have resulted in a more serious bleed. Once again, with skill and foresight, I had narrowly averted disaster.

For the next five years, John’s health was relatively stable, which, in the language of medicine, is a beautiful word.  Then, two weeks ago, he had a seizure in the middle of the night.   I was completely unprepared for this and didn’t recognize it for what it was (a post-stroke seizure).   I fully believed I was witnessing my husband’s death.  After calling 911, I shouted to our twenty-year old daughter.  Together we managed to turn him over so he could breathe freely until the ambulance arrived.

John is home again now, and doing well.  But his seizure reanimated the painful disillusionment on that long-ago day in Jones Beach.  During the past ten years, I believed (or talked myself into believing) that I was single-handedly responsible for my husband’s health and well-being, vigilantly steering him around sharp curves and avoiding dangerous cliffs with diet, exercise, and close monitoring.  Now, once again, I’m reminded that I may be in the driver’s seat, but I’m not steering the car – at least not one controlled by a kiddie car operator who keeps me on track.  The car I’m driving now (metaphorically) is more like a bumper car.  I still manage to circumvent some collisions, even some dangerous ones.  Those I don’t avoid I interrogate myself about endlessly.  What if I’d stayed to the outside track?  Could I have avoided that last bump?  What about the red car racing straight towards us?  Can I make a sharp turn and speed away?

In spite of my vigilance and John’s cooperation, there are bumps and jolts I have not been able to avoid.  Some have been more sharp than others.

People often say to me, “You’re doing so well with John!” or “I’m really impressed with how well you take care of John.”

To me, it doesn’t feel like I’m doing a spectacular job caring for John, because the outcome is not spectacular.  After all, inevitably, the ride will come to an end.  But for right now, I’m keeping hands securely on the wheel.

Illustrations by Shannon Wheeler.

Neurological & Cognitive Disorders Q&As

The Cyborg With Lou Gehrig’s

At 36, Eric Valor was diagnosed with ALS. Now, he's using technology to carry him where his body cannot.

When Eric Valor sits down to write, his hands do not move.

Under the active inspection of something called eyegaze software, Eric flicks his eyes across a digital display while an infrared camera tracks their movement and registers their precise location. When the screen displays a keyboard, a glance that lingers on a specific letter for half a second registers a click – this is called “dwell-time” – and letters populate the display.

To complete this interview, Eric wrote 26,038 characters over a series of emails. With his dwell-time down to around 0.3 seconds, he is left with two hours and ten minutes of typing. He completed this task from his office chair: a bed that holds his paralyzed body and lies empty only when Eric’s caregivers lift him from it with a battery-powered winch.

[Eric] has made a name for himself as a kind of human cyborg, as technology carries him where his body cannot.

Eric has amyotrophic lateral sclerosis (or ALS), a nervous system disease that weakens muscles and gradually reduces physical movement. Would-be advocates are rendered silent by the condition, their voices trapped and frozen along with the rest of their bodily functions. Most associate the condition with either a chilling bucket of ice water or the moment when Lou Gehrig leaned into the microphone at Yankee Stadium and told baseball and the world that he “might have been given a bad break, but I’ve got an awful lot to live for.”

Eric knows it as the disease that disabled every muscle in his body save those that move his eyes.

About two decades ago, Eric waded into the Bay Area’s burgeoning tech scene and found success working as a self-taught programmer and IT specialist. From his home in Santa Cruz, Eric’s life was quiet and contained, defined by his work of “keeping machines alive” and long afternoons spent surfing. He jokes that these machines are now giving back.

From his office chair, Eric works twelve hour days for nine different organizations dedicated to providing hope and answers for other people with ALS. He’s made a name for himself as a kind of human cyborg, as technology carries him where his body cannot. His eyes have become his voice. Folks caught up with Eric to learn more about his prodigious work ethic and the driving purpose behind it.   

Eric Valor before his diagnosis.

Prior to your diagnosis, what did you know about ALS?

I ironically joked about my condition being ALS and saw the deathly pallor which washed over [my doctor’s] face…

Precious little. I knew it was a nervous system disorder which had slowly crippled Professor Stephen Hawking, and that it was named after Lou Gehrig, the famous New York Yankees baseball player. Beyond that, I had no idea what I was facing. During my first checkup with a local neurologist, I ironically joked about my condition being ALS and saw the deathly pallor which washed over her face. I then looked it up online. I can still remember the flood of panic I felt when I realized what I was facing. That’s when I began learning everything about ALS so that I could find a solution to the problem.

I read on your blog that everything you had “built, bought, saved, or enjoyed in [your] life was taken from [you] or consumed by this disease.” It’s difficult to imagine loss of this scope. Could you describe what this looked like on a daily basis?

It happened over the course of about 6 years. Every couple of months, another major muscle group would fail or be very close to it. For the first two years, it was pretty much business as usual. I was still walking and could conceal my condition. I hid carbon fiber braces to keep my feet from drooping and tripping me as I walked. It was only when I was forced to use a cane and then crutches that I could no longer hide it. By that time, the house my wife and I had purchased six years earlier was no longer practical because it was full of stairs. We moved about a mile away to a single-level ranch style house

How did your friends and coworkers respond?

My office was magnificent in accommodating my needs as I became wheelchair-bound. But in early 2008, I could no longer grip a computer mouse and officially retired. The stress on my wife had been growing and compounded every day. In late 2010, she could no longer take the anguish of watching the world which I built around her, around us, disintegrate and she left. We had gone through all the money we had saved paying for 24/7 caregivers, including the equity in our house and we had moved in with my parents. That completed the loss of everything–my car, my career, my lifetime savings, my house, and most of all my marriage. I easily let go of all the material things but the loss of my marriage was a blow from which I am still recovering.

You have two options: Create another life or die. The latter is out of the question.

So what do you do when the life you knew truly no longer exists?

You have two options: Create another life or die. The latter is out of the question. My general practice doctor was helpful in telling me that if I planned to continue living I needed to craft another identity for myself. I have since become an ALS patient, advocate, scientist, and support provider. That gives me plenty of purpose.

Chronic disorders seem to have a way of redefining a person whether they like it or not. Has ALS changed who you are on some fundamental level beyond daily routine?

Eric on tour in Paris.

Yes. I have become a bona fide scientist actively working on a treatment for this disease through the research organization I created, something I would never have otherwise contemplated. I have become a quasi-celebrity in the ALS community because of my acquired knowledge which I share and my drive to keep ALS in the public eye in order to drive more demand and donations for research into effective treatment options. My previous life experience and acquired skills have all prepared me for this, putting me in a unique position to drag ALS out of the shadows. Whereas I was perfectly happy with my anonymous little life with an IT career, a wife, and a cottage on the coast, I am now a neuroscientist and a very outspoken advocate for awareness and research.

It’s interesting that you describe yourself as “dragging ALS out of the shadows.” This can’t be easy work. Why is it so essential?

I think it’s very important for me to share my experience so more people understand what ALS is and why research for an effective treatment is so necessary. ALS has about the same incidence rate as Multiple Sclerosis, but because there are several treatment options for MS there are millions of people worldwide living with the condition. And while MS takes between 5-10 years off a normal lifespan, ALS kills within 2-5 years. There is no known risk factor except age, and most people with ALS are diagnosed between the ages of 50-60.

I think it’s also important for me to show other people with this condition that, with a little bit of technology added to their lives, they can go on living and being productive. This is why I call myself the world’s first fully-functioning cyborg. I spent years keeping machines alive and happy – now it’s their turn to give back.

I spent years keeping machines alive and happy… now it’s their turn to give back.

Could you elaborate on the importance of technology to a person with ALS?

For people with ALS, technology like my eye-gaze software symbolizes life. Period. In order to interact with others, express a need, compose a symphony, or answer interview questions, requires communication. Humans require some level of interaction to remain sane. Just ask someone sentenced to solitary confinement. As people with ALS lose their ability to move and to talk, the eyes are usually (not always) spared the paralysis. So technology is our only savior from the ultimate solitary confinement. Three of my close friends who had this condition lost their eye movement and quickly decided to succumb to ALS. Like me, all three were on mechanical ventilation order to breathe. Yet what truly kept them alive was their ability to communicate. If I didn’t have this available, I would have taken a first-class ticket on the Morphine Train to Dirtnap Town some time in 2008.

What does your average day look like?

I work quite late in the night so usually wake up around 12:30 in the afternoon. My morning caregiver turns on my computer and conducts range of motion exercises and stretching to keep my limbs loose. He then pours lunch down my PEG tube while I check my email. I usually answer any questions from other people with ALS and check in on any outstanding business that needs doing in my volunteer groups or my research organization.

Often by then it’s time for my shower routine. My afternoon caregiver and another who comes in to help out with showers lift me out of bed and place me in my rolling reclining shower chair. In the shower chair, I am shaved with an electric razor and given my daily cough-assist therapy. This is a machine with a hose attached to my tracheotomy tube which gently pushes air into my lungs then quickly sucks it out. This simulates a cough, which I cannot do because my diaphragm muscles are paralyzed. I am then rolled into the shower, my teeth brushed, body and hair bathed, dried, and put back into bed where I do all my work and online socializing.

I then get back to work, answering interview questions like these, writing any research papers or blog posts, Quora answers, tweets, Facebook interactions, etc.

“For me, nothing has changed post-diagnosis,” says Eric. “I still have purpose.”

That’s an impressive regiment. How do you wind down?

Between 3-5AM, depending whether I have my stuff done and have myself shifted over for sleep by my overnight caregiver. I require 24/7/365 caregivers because if something goes wrong with my ventilation machine – buildup of phlegm which must be suctioned out of my trachea and mouth every so often, the air hose pops off, power goes out, anything unforeseen – I need immediate assistance. Any interruption of air flow means I am dead in about 3 minutes.

And then I wake up in the afternoon and repeat the process. Every day is a little different. I can still “travel” online and socialize. My girlfriend and I chat during the day and most weeknights. On the weekend, she comes over and we make cocktails, watch TV shows or movies, and have some quality time.

You seem to approach this work with a profound sense of purpose. What advice do you give people who find themselves in a similar circumstance and are searching for meaning?

With a little technology, we can replace our lost abilities and even improve remaining ones. That’s the job of technology.

For years I had valued the things society tells us to, like money, status, and possessions, and was not satisfied because I was always lacking in “something.” All that stuff I had been seeking were all external validations.  Money, status, and possessions are worthless for happiness.

For me, nothing has changed post-diagnosis. I still have purpose. Before my diagnosis, my purpose was to make a happy life with my wife. Things were fairly simple. Now, my purpose is to help find an effective treatment for ALS and along the way share my acquired knowledge and experience with other people with ALS more newly diagnosed so their struggle can be eased.

I tell the newly diagnosed that loss of movement does not diminish us in any way. With a little technology, we can replace our lost abilities and even improve remaining ones. That’s the job of technology. I then try to explain that life can continue if they so desire, and use myself as an example. Life would have a few more complications but they could all be managed. Nevertheless, many still choose to succumb. Each death I take as a personal failure and loss. I continue to be a resource for knowledge and personal guidance for those who choose to remain.

Neurological & Cognitive Disorders Q&As

Conducting In Colombia With Tourette’s

Conductor Eric Gault's music career almost passed him by because of his condition, until he embraced a new attitude.

Eric Gault looks like a shaved Viking, but instead of looting for a living, he’s an orchestral and choral conductor and music teacher. From Los Angeles to Nevada to Bogotá, he works with everyone: children, university students, and–of course–professional musicians.  And drawn by his loud, frequent, operatic laugh, Eric even attracts the occasional celebrity: he’s currently arranging his Colombian pop-star friend Cabas’ music for choir.

Eric Gault conducting in Colombia

Talking to Eric, you’d never guess he was once a textbook case of Tourette’s Syndrome. His symptoms were emblematic: the tics, the vocalizations, the immunodeficiencies. But his journey to wellness has been anything and everything but textbook. Instead, after suffering a serious decline in his health and realizing traditional meds weren’t working for him, Eric spent much of his adult life chucking the book on Tourette’s treatment out the window and writing his own.  

Folks sat down with Eric to talk about his journey to health and what it means to be “functional.”

 How were you first treated for your Tourette’s?

 I was diagnosed at the age of nine and immediately put on a major tranquilizer. I gained sixty pounds and suffered extreme lethargy and cognitive blunting. I felt like I was in a chemical straightjacket. I was such a frustrated, energetic kid. I was fighting back against this daily constraint though I may not have been able to articulate that at the time with constant thrashing around and violent fits. I became uneducable.

I felt like I was in a chemical straightjacket.

It got worse until I was twelve, when I was sent away to a treatment facility in New York for three years. Towards the end of my time there my medication was changed and I lost sixty pounds in three months. From this I realized you’re not supposed to be baseline depressed and fat and that much of my condition was, by that point, iatrogenic (a type of illness caused by medical treatment – ed.).  Other kids there were a mix of those with Tourette’s, those suffering with severe autism, violent kids who were wards of the state and those whose family life was so broken that they simply had to be removed. These kids had huge amounts of rage because of the traumas and structural inequalities they faced. I would go home for a week or two a year and that was difficult, but in retrospect it was the best thing that ever happened to me because it instilled in me an ability to contextualize my life so that when I went through trauma beyond that and living with a disability, which is enormously difficult, I was able to hold onto my wits and make decisions that benefit me.

  How did Tourette’s affect you later in life?  

 Later, I went to study music at Oberlin College. That’s also when I started taking meds that destroyed my health. The doctors would literally open books, turn the pages, and say, “Oh this one seems good, why don’t we try this?” I felt like a trashcan for experimentation. They’re well meaning, but they’re trained to diagnose and medicate. They’re not trained to treat a person so they can be functionally healthy.

I was playing college baseball at the time and I would see trails behind the ball sometimes like I was tripping on acid. Other drugs made me puff up like the incredible hulk, where my muscles were unusually defined. The antidepressants made me feel rage and physical and emotional pain. Every medication I took I would experience these very awkward and troubling symptoms. I was becoming increasingly physically ill, fatigue, nausea all the time, losing weight, losing hair, dark circles around my eyes. I was 22 and I would run into people I knew and not remember who they were.

Eric Gault on the streets of Bogotá.

And what was the tipping point when you decided that traditional treatment wasn’t for you? How did things start to turn around?

 Conventional doctors had no idea what to do for me or they would dismiss me and say I was crazy. But I was so sick I couldn’t tolerate it anymore so I had to stop and I did. I didn’t finish school at the time. My immune system broke down so badly, I couldn’t tolerate chemicals. Anywhere near paint and I would start vomiting.  I moved back to Chicago and I found a job at a health food store. Little by little I started learning about other people who had gone through similar experiences and were treating their illnesses holistically. Just by sheer luck, I ran into a woman who had begun seeing Dr. Nicholas Gonzalez in New York who treated cancer and other degenerative illnesses alternatively. Tragically, he passed away a year ago. I’ve been on his program since 1993.  It allowed me to go to grad school, be successful in my field, have girlfriends, and have good relationships with my friends.

Tourette’s may be partly genetic… but you have to treat your body in a way that functionally makes sense.

When you nourish your body and detoxify and get an understanding of nutrition in a functional way, it does marvelous things. Most of my ticks started going away. My cognitive functioning started improving, my hair started growing again. Tourette’s may be partly genetic, but in its expression it is thoroughly dependent on its environment. You have to treat your body in a way that functionally makes sense. Don’t eat crap. Don’t breathe crap. Don’t sleep next to crap—not with your cellphone next to your head nor with a person who doesn’t treat you well.

But also, I was left with a grieving period. I realized I’d suffered with something little understood and that I’d lost years. When my friends from Oberlin were going off to sing opera at the Met and have international careers, and I knew I was equally gifted but I was just too sick to do it, it was a deep sense of loss. I still sing and I intend to record and make my voice heard but life did get in the way. The positive part is that I went back to grad school and fell in love with conducting. So, I landed in the place that made the most sense for me.

You keep using the word “functional.” What does that mean to you?

 You know how sometimes you say something reasonable but people are so captive to their emotional state, so emotionally armored, they can’t hear what you’re telling them? Well, to be functional means you have the ability to respond to the world in front of you, the evidence before you, to respond to stimuli in an as spontaneous and natural a way as possible—an unarmored way. It comes from Wilhelm Reich, a student of Freud’s. We are raised to run away from our feelings. We feel pressure to conform and that develops in us these secondary, anti-social impulses because that energy must go somewhere. Functionality means returning to one’s core as it functions in the world and tolerating the anxiety this produces without running away.

Part of staying healthy means choosing people with whom you are able to have nourishing relationships, says Gault.

Having gone through physical, social, and emotional struggles with my disability, I’ve developed a way of maintaining equilibrium. It means acknowledging my own rhythm, and deciding who and what I will allow to interrupt it. Sometimes I make mistakes in choosing the ‘who’s’ and ‘whats’ but from that I learn as well. We have to understand that people are going to behave irrationally because they’re dealing with trauma themselves by virtue of growing up in a damaged world, or not dealing with their traumas and expressing it in all the inappropriate ways. When you run into people who are basically rational and functional for the most part, it’s a rare and special treat.

When you run into people who are basically rational and functional for the most part, it’s a rare and special treat.

 Functionality for me is not about getting Tourette’s under control. If I want to control or manage Tourette’s, it’s about nourishing my health and life. We nourish our bodies when we nourish our environments, when we nourish our relationships, when we find work that nourishes us. When I don’t do that, I have immunodeficiency, ticks, all of it. When I do, Tourette’s is just a part of who I am. 

Health & Fitness Neurological & Cognitive Disorders

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.”

 

Neurological & Cognitive Disorders 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.”

Neurological & Cognitive Disorders Profiles

Meet Steve Gleason, The Former NFL Superstar Tackling Lou Gehrig’s

A decade after his punt block symbolized a city’s recovery, a retired football pro with ALS is immortalizing himself in film, to be remembered by his child.

Ten years ago, when the New Orleans Saints returned to the Louisiana Superdome for the first time after Hurricane Katrina, one play defined the game.

Just 90 seconds into the first drive, Saints safety Steve Gleason blocked an Atlanta Falcons punt attempt. His teammate recovered the ball for a touchdown, and the Saints went on to beat their division rivals by 20 points.

Many fans saw the play as a signal of the city’s post-hurricane comeback, and Gleason earned celebrity status in New Orleans.

On the fifth anniversary of that famous game, Gleason announced his amyotrophic lateral sclerosis (ALS) diagnosis. Doctors had confirmed his condition earlier that year, just six weeks before his wife, Michel Rae Varisco, found out she was pregnant.

gleason_hkpull_064

Steve Gleason of the New Orleans saints.

Also known as Lou Gehrig’s disease, ALS is a neurological condition that destroys nerve cells and ultimately causes disability. As the disease progresses, it impacts the muscles used to move, eat, speak and breathe. According to Mayo Clinic, respiratory failure is the most common cause of death for individuals with ALS, and that typically happens approximately three to five years after diagnosis. Some patients prolong their lives with a tracheostomy, where surgeons create a hole in the neck and equip the individual with a respirator that inflates and deflates the lungs.

After Gleason’s ALS initial diagnosis, he and his wife regularly recorded video diaries for their child–and, in the process, chronicled four years of Gleason’s physical decline. From that footage comes the documentary, Gleason. Following a 2016 Sundance Film Festival premiere, it was released on DVD this month and will be available on Amazon Prime Video in December 2016.

That’s Steve Gleason. He marches to the beat of his own drummer.

Deeply personal and poignant, the film follows the family through Gleason’s diagnosis and the developments that follow. It documents the desperation the former professional athlete feels as ALS paralyzes his body; it also spotlights the challenges that Varisco faces as a partner, caregiver and new parent. But, optimism shines through, as well. From the birth of their son, Rivers, to lessons on living in the moment, to lighthearted jokes in even the most physically awkward situations, “Gleason” is a story of joy and hope.

Scott Fujita, Steve Gleason’s former teammate and close friend, was a co-producer on the film. The two first met during an off-season training session, shortly after Fujita signed with the Saints.

Steve, his wife Michel Rae Varisco, and upside down baby.

Steve, his wife Michel Rae Varisco, and upside down baby.

“I looked into the field house and there was just one long-haired guy in there, with the lights dimmed, doing yoga,” remembers Fujita. “I asked my teammates about it, and one of them said, ‘That’s Steve Gleason. He marches to the beat of his own drummer.’”

The pair played together until Gleason’s 2008 retirement, and stayed in touch after Fujita’s career took him to the Cleveland Browns. He was back in New Orleans for a game against his former team when Gleason first mentioned that he was experiencing unexplained muscle spasms. The symptoms sounded uncomfortably familiar to Fujita, who’d lost an uncle to ALS 15 years earlier.

Within a few months, doctors confirmed Gleason’s diagnosis.

“I remember where I was standing at the very moment Steve called with the news. I knew it was possible, but it didn’t seem real until I heard the words coming out of his mouth,” says Fujita, who also remembers Gleason’s pledge to keep ALS from destroying his life.

 

Steve and friend Scott Fujita debuting Gleason at SXSW.

Steve and friend Scott Fujita debuting Gleason at SXSW.

Just days after the diagnosis, Fujita, Gleason and a few friends completed a sunrise trek to the top of San Francisco’s Twin Peaks. Weeks later, Gleason and Varisco set off on a driving tour through Alaska. On the one-year anniversary of his diagnosis, Gleason went skydiving to raise money for Team Gleason, the nonprofit he founded to empower individuals living with ALS. In the months that followed, he and his family attended national sporting events, hosted fundraisers and even traveled to Peru to hike Machu Picchu. A 21-member group organized through Team Gleason included Rivers Gleason, then just 18 months old, Michel Varisco and two ALS patients in wheelchairs. Fujita was among the friends and caretakers who carried Steve Gleason’s chair up the rocky trails.

Throughout all those adventures, the cameras were rolling.

“Steve has always had a creative mind, and he’s always been one to record things,” Fujita explains. “When he started having symptoms, he had a feeling that whatever was happening might turn out to be something big. He started documenting his symptoms on film, but at that point, there was really no plan.”

Plans quickly crystallized, however, once Varisco learned she was pregnant.

“Steve said, ‘If the experts are right about the timeline, and I only have two or three our maybe four more years to live, I need to share myself with this unborn child right now.’ That’s when he turned the cameras on himself,” says Fujita.

‘I need to share myself with this unborn child right now.’ That’s when he turned the cameras on himself

For about two years, Gleason and Varisco filmed video diaries intended only for Rivers. When they decided to share their story with a wider audience, they enlisted the help of director J. Clay Tweel. He and his team sorted through more than 1,300 hours of footage to create Gleason, including clips shot by filmmakers who lived with the family once Gleason could no longer hold a camera.

Tweel’s 110-minute documentary incorporates scenes from the family’s travels, daily activities, doctor visits and personal discussions, plus perspective from their friends and family. Steve Gleason also directs monologues to his son, sharing fatherly advice on everything from building campfires and skipping rocks to spirituality and dating. Additional clips document Gleason’s difficult conversations with his own father.

Steve hugs Scott Fujita at a Super Bowl Ring Party, thrown in 2011 in Steve's honor.

Steve hugs Scott Fujita at a Super Bowl Ring Party, thrown in 2011 in Steve’s honor.

Gleason and Varisco talk candidly about their fears and feelings throughout the film. In one particularly moving scene, Gleason struggles with the fact that he can no longer speak. Thanks to that sort of intimacy and honesty, the documentary offers an intensely powerful look at the impact of ALS.

“With more than 1,300 hours of footage, we could have told any one of a hundred different stories,” Fujita says. “For Steve and Michel, the story goes beyond ALS, beyond football, and beyond the cliché tale of overcoming adversity.”

Fujita attended several screenings of “Gleason” this summer, and participated in a number of post-film discussions with audience members. The themes that resonated with viewers touched on topics ranging from parenting to strengthening relationships to using art as therapy. Varisco, who started sketching to ease anxieties and pass the time while waiting in medical offices, sold some of her pencil drawings at a Sundance Film Festival event and now shares her art in an online gallery.

At one screening event, a father stood up and said the documentary had inspired him to reconnect with his estranged son. At another, a room filled with ALS caretakers, patients and family members gave Varisco a standing ovation for bringing attention to their unique challenges. Elsewhere, nurses expressed a renewed sense of purpose.

A candid moment with Steve and his family at home.

A candid moment with Steve and his family at home.

“One woman stood up and said, ‘I want to thank Michel for humanizing my patients. Tomorrow, when I make my rounds, I’ll remember that they are not just a number on a card,’” Fujita says.

At one screening, a viewer asked Varisco what she wanted people to take from the film. “I hope people get whatever they need,” she said.

“Everybody is taking away something different,” agrees Fujita. “The story seems to be sticking with people, though they often walk away struggling to articulate exactly how they feel. They feel uplifted, but also crushed. They’re saddened and angry that more hasn’t been done to fight ALS, but they’ve also just cried their asses off and laughed their asses off in a room full of strangers. It all just sits with them for a while, and then they generally wake up the next morning feeling motivated and inspired.”

Steve Gleason continues to inspire those who view the film and hear his story. Nearly seven years after his initial ALS diagnosis, he breathes with a ventilator (he opted for a tracheostomy in 2014) and uses eye-tracking technology to communicate from his wheelchair. A team of caregivers assists Varisco and Gleason on a daily basis, and his physical decline has mostly stalled.

“I believe my future is bigger than my past,” Gleason says.

Gleason attended a few screening events held in conjunction with this summer’s film release, sometimes joking about buying tequila shots to help viewers through the intense scenes. He remains involved in Team Gleason, raising funds for ALS awareness and research, and he advocated for the Steve Gleason Act signed by President Obama in 2015. The bill makes vital communication technologies available to ALS patients on Medicare and Medicaid.

Gleason also continues being an active father to Rivers, who turned five in October. And, this fall marked 10 years since the retired football star blocked the post-Hurricane Katrina punt in New Orleans.

Early in his namesake documentary, Gleason makes a statement that could easily double as a tagline for his life, the film and his current attitude, as an individual living with ALS.

“I believe my future is bigger than my past,” Gleason says.

Neurological & Cognitive Disorders Profiles

An Unbreakable Silver Thread, Woven Through Everything

To create her award-winning art, New Zealand comic artist Jem Yoshioka has learned to juggle her doubts, her anxiety, and Chronic Fatigue Syndrome.

When I arrive at Jem Yoshioka’s loft in downtown Wellington, the first thing she does is offer me tea.

It’s the same ritual every time I come to her home in New Zealand’s capital city. I ride the rickety iron elevator, which is like something out of Titanic, to the loft, and Jem ushers me in, then she opens the wooden tea cupboard and starts pulling out boxes.

I covet her electric kettle, a space age gadget that heats water to the optimal temperature for different types of tea. She sets a timer on her phone so the drink steeps for exactly the right number of minutes.

A meditative tea ritual is an important part of Jen's daily routine.

A meditative tea ritual is an important part of Jem’s daily routine.

Jem’s been living here for as long as I’ve known her; close to five years. When we met in 2011, she had just tentatively entered part-time work, after a long recovery from an illness that left her devastated.

Five years before that, she was in the middle of of studying for a degree in design when she contracted a stomach virus. The virus soon passed, but Jem’s body refused all of her efforts to get well.

“Everything exhausted me. I got no rest from sleep. Over exerting myself would leave me drained for days,” she says. “It took two years of this before I was diagnosed with Chronic Fatigue Syndr

Jen at work on her illustrations.

Jem at work on her illustrations.

ome. There was nothing I could do to heal myself.”

An estimated one million Americans and a quarter of a million people in the UK have CFS, or Myalgic Encephalomyelitis (ME). The cause is not fully understood, the symptoms are complex and inconsistent, and there is no known cure.

“I slept in weird snippets when it seemed the thing to do, I would eat healthy and get pain from wholegrain bread one day, but be fine with it the next. Exercise would be fine until it destroyed me and I’d be unable to move for days. I learned I needed to listen to my body and follow what it was telling me.”

Plagued by exhaustion and anxiety, Jem struggled to continue her study, and the art that had always sustained her.

“It was difficult and I went through patches of being unable to draw. I had to teach myself all over again. My heart was broken. Drawing was something I’d always had, and I didn’t even really have it anymore.”

Now, close to a decade later, Jem uses her hard-earned degree and her artist’s eye to tell stories in steady full-time work, making space for drawing in her own time.

Her drawing and illustration work has won her both awards and acclaim, and is informed by her experience with illness–and her special heritage.

Yoshioka is Jem’s grandmother’s family name. When she married Jem’s New Zealander, or “kiwi”, grandfather in the 1950s, she refused to drop her name. It was a brave and an unusual choice. Jem initially adopted it as an online pseudonym.

“Drawing was something I’d always had, and I didn’t even really have it anymore.”

It’s always been a beautiful name to me, and I thought using it would help to solidify my connection to my heritage and direct my art practice. After about 5 years, I realized that the only places with my other name were official places. It sounded dull to my ears, so I decided to change to Yoshioka. It’s probably one of the best decisions I’ve ever made.”

This is one in a string of choices Jem’s made about her mixed race identity. Like many people with diverse backgrounds, she has questioned her right to belong, and this exploration is present in much of her recent artwork.  

“I remember growing up feeling proud and also feeling quite alone. There’s not a lot of other Japanese here, and the other families who are here are often quite different from mine. I worry about how much claim I have to my heritage, that really I use it as an excuse, an accessory. I’m sometimes scared of talking with other Japanese people, in case they think I am a fraud.”

Jem has travelled to Japan twice in the past two years, and has another trip planned in 2017.

A panel from Jen's ongoing coming, Folding Kimono.

A panel from one of Jem’s comics.

“I was able to be in Japan to commemorate the 70th Anniversary of the Hiroshima bomb, which my grandmother survived. I got to spend time with my great uncles, see places important to my family and travel with my younger brother. A three week trip with so much walking would have been absolutely unthinkable as little as 5 years ago. I am so grateful that my body has been able to recover to the point where I can walk around.”

“Artistically I think these trips will be feeding me for a long time. Japan is very important to me and this will be a common theme through my work, but it’s also important to know I’m not from Japan, I’m from New Zealand, and so my worldview and the work I make is different because of that.”

In the autobiographical comic Folding Kimono, Jem attempts to engage with her heritage through the gift and care of a traditional kimono. The work has been extremely popular, racking up over ten thousand notes on Tumblr, and earning Jem first place in the biannual Chromacon Art Awards.

“When I first wrote Folding Kimono I was convinced it was terrible,” she confesses. “But people seemed to connect with it, and I felt like they could see me.”

“I have been so moved by hearing other people of mixed heritage (especially mixed Asian heritage) talk about how my comic made them feel. I had people telling me they’d never seen their experiences recorded so accurately, that the piece resonated very deeply within them.

In May this year, Jem finished Visits, her third autobiographical comic.  She says it stills feels weird to create such personal things and share them with the world.

“I feel oddly selfish putting myself in the center of my work and getting people to look at it. Despite the response to Folding Kimono, I worry this isn’t something others will understand or be able to access or see value in. But it’s very cathartic material to make and it’s helping me to process a lot of things.”

Along with the lingering effects of her Chronic Fatigue Syndrome, Jem suffers from an anxiety disorder. She describes how this feels with typical artistic eloquence.

Anxiety is like an unbreakable silver thread woven through everything.

“Anxiety is like an unbreakable silver thread woven through everything. It’s a slightly different texture to the rest of the fabric, and it catches the light. I want to pull it out, but it causes the fabric to buckle and bend, and so trying to remove it only makes things worse. Now not only is the thread still there, impossible to remove, it’s ruined everything around it.”

“I work hard to learn about my anxiety,” she says. “I treat it as a living part of me that needs to be acknowledged. It’s learning to leave the thread, to see and experience the grey. It’s being happy with nothing being quite right, but maybe things are okay.”

Now that she is able to have a full-time job, Jem has discovered that working benefits both her mental and physical health–and improves her ability to make art.

jematwork

Jem hard at work on her comics.

“Without a steady job I tend to sleep until at least noon and rarely get drawing before three or four anyway,” she says. “By filling my days with work I’m less likely to mess around online and actually get a decent amount of time in drawing most evenings before aiming for a sensible bedtime.

She’s filled with gratitude that she’s now well enough to support herself and her art.

“As every single artist and writer knows, eating is important. Having somewhere to live is important. Having a job that means these things are a guarantee is probably the single most vital thing to me being able to fill the rest of my time with drawing. While I do sometimes miss drawing while I’m at work, the payoff of being self employed just isn’t worth it for me. I need the structure.

It’s a privilege to be able to work in this way, and I am thankful every day I have been lucky enough for my physical health to come back to me.”