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.

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.’”