After receiving a diagnosis that gradually rendered him disabled, Tim rediscovered his love of art and built a business around it
It started with little things, barely noticeable: memory lapses, slow responses. Some stuttering. Then a fine tremor in his right hand.
Tim Brandt, then 40, brushed it off. He didn't really have time to pay attention to stuff like this. He was on an upward trajectory at his corporate job at a utility company. He was married, with young children. He couldn't afford to get caught up in distractions.
He had some other latent medical conditions that he thought might account for his symptoms. He'd been diagnosed with a form of juvenile arthritis in early adulthood, and he'd had two cervical spine surgeries in his 30s. Maybe his neck was acting up, he thought. But mostly he didn’t think about it.
With time, things took a turn for the worse. "My head would start to bob a little bit like I was always saying yes to everybody," he said. The tremor had spread to his jaw. His balance was "starting to get really questionable," and his tongue would trip up on words while speaking.
"This isn't quite right," he remembers thinking. "We should find out what’s going on."
He first went to see the doctor who had done his spine surgery. He sent Tim for a few tests; everything checked out. Same with his rheumatologist. Neither doctor could explain his symptoms. His surgeon referred him to a neurologist at Cleveland Clinic, a few hours from his home.
I asked Tim what was going through his head once he was referred to a neurologist. Surely he must have been mulling scenarios in his head, perusing online forums, plugging his symptoms into some diagnosis-generating web bot?
"I requested that no one say what they think it could be," he told me. "I don’t want to be Dr. Google. I purposefully didn’t research any of my symptoms because I didn’t want to know."
It took four trips back and forth to Cleveland Clinic, and a battery of tests, to arrive at a diagnosis: Tim had Parkinson’s disease.
Despite advances in therapy, to date there is still no cure.
Parkinson’s is a neurodegenerative disease that affects the part of the brain that produces the neurotransmitter dopamine. Its hallmark symptoms are tremor, muscle rigidity, and a slow, shuffling gait. The disease is progressive over time; at its end stage patients often suffer dementia.
For many, the disease is closely associated with the actor Michael J. Fox, who since receiving the diagnosis at a young age has become one of the strongest advocates and fundraisers for Parkinson’s research. Despite a high level of public awareness and advances in therapy, to date there is still no cure.
Tim’s last visit with the neurologist clinched the diagnosis because he was given Sinemet, a dopamine agonist that increases levels of the hormone in the brain. For a few hours, with the drug in his system and dopamine flooding his neurons' receptors, the symptoms melted away.
"I felt relieved," he said of receiving the diagnosis. On the car ride home from his final appointment, he resolved to throw a party.
"It’ll be a Parkinson's themed party," he told his wife. "I want everyone to know what's going on. I don't want to be the 500-pound gorilla in every room when we walk in."
Tim is earnest, genial and forthright in the way many Midwesterners are. He has a manner of speaking that puts you at ease. He's funny, too. In our communications, he sent emails with the salutation "Big E!" Confirming the date and time for our interview, he replied with a one-liner: "Houston we are a go." Sometimes he signs his messages "Timmy."
Tim is quick to identify absurdity, and his sense of humor allows him to not take things too seriously. So it came as no surprise that his answer to a potentially devastating medical diagnosis was—of all things—a party.
They had roughly 100 friends and family over for dinner. Each guest had to choose a character from a Michael J. Fox movie "and that's who you were for the night." Talking points about the disease were scattered around the rooms of his house.
After that, he said, "no one was afraid to ask a question."
Once he had gotten those closest to him up to speed on his illness, he struggled with what to tell his employer. Some people advised him to say nothing.
A friend with Parkinson's (a fellow "Parkie," as Tim calls them) fired the first warning shot regarding his longevity at work. "You're gonna be out of there in five years," Tim says he was told. He was confident, however, that he could get his symptoms under control and buy himself at least another 10.
"'This shouldn't interfere with work for a while,'" he told his employer.
After some reflection, he opted to pursue a policy of full disclosure at his job. He created a PowerPoint presentation for his co-workers. It explained what Parkinson's is, the symptoms and anticipated progression.
"They appreciated the candor," Tim said. "'This shouldn’t interfere with work for a while,'" he told them.
He was wrong. His Parkinson's crept into all aspects of his work, and it started affecting his performance.
His balance issues had caused him to fall a couple of times in the office. His memory wasn't as sharp as it had been—he found that if he didn't create a written reminder, he would forget appointments and other obligations quickly.
Perhaps most alarmingly, he started experiencing hallucinations, which afflict a small proportion of Parkinson's patients. His first one happened at work.
He was sitting in a meeting when all of a sudden his colleague's face started radiating an eerie light. "You know how as a kid you take a flashlight and you put it in your mouth and you can see your skin glow?" That's what it was like, Tim said.
"I was freaking the hell out."
His bosses started to notice that he was slipping. "Really the cognitive issues were what they were focusing in on," Tim said. It was hard for him to accept; he had been a top performer at the office just a year prior, with a hefty bonus to show for it.
"I was becoming a boat anchor to them," Tim said.
He transitioned to a modified work schedule, going in to the office just three days a week, then two. His "off" days, when his symptoms were particularly bad, became more frequent and caused him to miss work altogether.
"I was becoming a boat anchor to them," he said. "When you're lean and mean as a team, you don't have room for boat anchors." His bonus was cut in half.
The human resources department at his job helped him apply for short-term disability. They indicated they would help him secure long-term disability benefits too, Tim said, but that was where things started to go awry.
It was at that point, Tim said, "I should've lawyered up."
His first request for long-term disability was denied. At the same time, he was slowly but surely being pushed out of his workplace.
The "fatal blow," he said, "was I didn't let them fire me, I agreed to just go out the door."
He appealed the insurance company's decision, twice. He was again denied both times. He had been off work during the appeals process, but his employer was legally obligated to hold his position in the interim. After the final denial, out of options, he informed HR he would be back at work that coming Monday.
"Friday I got a call from the head of HR: 'I hear you're coming into work Monday.'"
That's right, Tim replied. The woman requested he bring a doctor's note stating he was able to work.
"And I said, 'You have the doctor's note that says I can’t,'" Tim recounted, incredulous. "And she's like, 'Well, you have a problem, sir.'"
"And that's how she left it."
The appeals had been costly, due to lawyers' fees. Tim had considered suing the insurance company, but he was told that process would set him back another several thousand dollars, which he didn't have. So he backed down, and walked away. He stayed home and didn't return to work.
Months passed. He remembers reading a story about another "Parkie" going through her own fight for long-term disability benefits. The similarities to his struggle were striking.
"It just fired me up," he said. "I said, you know what? Screw it. File."
"You end up negotiating the value of your life. And that's horrible, it is a very horrible feeling."
His lawyer filed suit against the insurance company on the last day of eligibility. And once again, the fight was on. For Tim, it meant another six months of paperwork, meetings and uncertainty.
Rather than going before a judge, the case went to mediation. The purpose was to arrive at a settlement, but there was a vast chasm between what Tim was requesting and what the company was willing to offer. It was demoralizing, he said.
"You end up negotiating the value of your life. And that's horrible, it is a very horrible feeling."
The eventual settlement was "pennies on the dollar" of what he might have been awarded in long-term disability, amounting to roughly 20 percent of his annual salary. But by then, Tim had mostly drained his savings. He couldn't afford to continue. He took the money.
I asked him how he felt at the end of that process. "Like a complete loser," Tim told me. "Totally devalued. It was very draining and dehumanizing."
Soon after getting his diagnosis, Tim had started attending support groups for people living with Parkinson's. He found them useful, and therapeutic, but was dismayed by the demographics: the patients tended to be older, with more advanced symptoms.
At one point his doctor recommended he go to a large Parkinson's convention in Chicago. In addition to the various events and seminars, Tim noticed vendor booths set up outside, most of which were selling arts and crafts created by patients like him.
"I talked to every one of them," Tim said, "and none of them had any formal art training." This got him thinking.
Tim's professional degree had been in fine art. He had mostly left his skills behind after pivoting to business in his adult life, but with the recent upheaval he had experienced, he decided he'd try a return to his roots. He found some of his kids' chalk and started drawing a mural on a wall in his basement. He would go down there and work on it on nights that he couldn't sleep. This was followed by some charcoal sketches on paper.
One day his brother visited and the pieces caught his eye. He was attending a meet-and-greet later that week with Brent Seabrook, a hockey player with the Chicago Blackhawks. He asked Tim if he could make a portrait that he could give to Brent; Tim happily obliged.
Brent liked the piece. Other members of the team started requesting their own portraits. Then a local hotel owner commissioned a few pieces to hang in the guest rooms.
As his Parkinson's symptoms progress, he's found it harder to do the art he loves.
Before he knew it, Tim had a business on his hands. People kept buying what he was making. He settled on the most apt name he could think of: Shaking Arts.
Tim estimates he has produced about 400 pieces in the last 10 years. He sells them on his website, shakingarts.com. His customers span the globe, from Europe to India and Australia, and he has done showcases around the country. He's working on a book collection of his best work.
As his Parkinson's symptoms progress, he's found it harder to do the art he loves. It takes longer to finish a piece, and his drawings have grown larger, so that the lines don’t betray his tremulous hand.
Art allowed Tim to survive what would have otherwise been a very hard decade.
"I was able to take that emotion and throw it on paper, throw it on canvas," he said. "That was and still is a great release for me."
He knows he won't be able to do it forever. I mentioned to him that someone looking at his work would have no inkling it had been done by a person with a shaky hand. At the moment, he appears to be making art in spite of his Parkinson's, not because of it. But he acknowledges that there will come a time when his disease will change all of that.
Tim frequently gets lost in his work. It is at these times, when his focus is sharpened, that his shaking seems to diminish the most.
It's those times of intense concentration, Tim said, that "allowed me to still do the lines. It’s just now a lot harder to do."
"Something’s gonna give, and I don't think it's gonna be me."
[Editor's Note: Visit www.shakingarts.com to view and purchase Tim's original art.]