Lucy Roucis
Lucy Roucis’s ordeal started when she couldn’t hold a yogurt container without shaking. The 27-year-old was on an audition for a commercial and was asked to hold the yogurt steadily in her hand — something that suddenly seemed impossible to do.
Originally from Denver, Ms. Roucis had moved to Los Angeles years before to become an actress. She had found success with small parts in movies and TV shows, and got many jobs with commercials and modeling. For a steady paycheck, she typed for law firms during the day.
Now she couldn’t keep her hands from trembling. Ms. Roucis began to feel the effects elsewhere, too. Her typing speed slowed, which she initially blamed on the typewriters. But when her words-per-minute dropped to 30 from a high of 105, she could no longer ignore the fact that something was wrong.
The first neurologist she saw said that it was likely young-onset Parkinson’s disease. But that prospect sounded too harsh to Ms. Roucis, and she set out to prove this diagnosis wrong. She began looking for other explanations for the tremors, but learning about ALS, Huntington’s disease, multiple sclerosis and essential tremor made her realize that the other possibilities were just as bleak, if not more so.
“I realized that at least Parkinson’s wouldn’t kill you,” she says. “It just makes life really hard. But I could live with that.”
Her diagnosis took six years before it was definitive, partly because of her age (it’s rare for someone so young to develop Parkinson’s), and also because she was additionally diagnosed with thyroid cancer. In 1990, she had her thyroid removed and has remained cancer-free. Just before the definitive diagnosis of Parkinson’s disease, Ms. Roucis moved back to Denver to be closer to her family, a move that saddened her because she felt like she was giving up on her dream of being an actress.
This changed in 1993 when she discovered the acting troupe PHAMALY (Physically Handicapped Actors and Musical Artists League). PHAMALY has allowed Ms. Roucis to continue her acting career without trying to ignore or hide her Parkinson’s. As of early 2009, she has performed in 18 shows with the troupe.
Yet the disease took a toll on her life. She experimented with different drug therapies to keep her tremors under control, many of which made her ill. She heard about deep brain stimulation, or DBS (the implantation of a brain pacemaker to ease Parkinson’s symptoms), in the late 1990s. She dismissed the idea at the time because the procedure was new; she didn’t want to be one of the first to undergo it. Her Parkinson’s also was much more manageable at the time.
By 2008, Ms. Roucis’s condition had progressed to a state where she felt surgery was her last hope. She had been suffering from the disease for almost 22 years. Some days she couldn’t even leave her apartment. She was crippled by her tremors and dyskinesia. Her face sometimes was “frozen,” leaving her unable to express herself. She needed assistance to walk and frequently had to rely on a wheelchair.
At the annual Michael J. Fox Foundation gala research roundtable luncheon, she heard about Cleveland Clinic’s Center for Neurological Restoration. She came to Cleveland to explore DBS at Cleveland Clinic, and after an intense screening, it was determined that she was indeed a candidate. Her surgery was scheduled for six weeks later.
By then, her surgery day couldn’t come soon enough. “I was just so sick with Parkinson’s,” Ms. Roucis recalls. “It had taken over my life. All I did was lie on the floor and writhe or not be able to move all day.”
Ms. Roucis opted to have electrodes implanted on both sides of her brain at the same time. The nine-hour surgery proved to be trying. She had to be off her medication so the surgeons could know when the electrodes were in the correct place. The lack of medication left her arms and legs twisted and contorted. At one point, the surgical staff asked her if there was any music she might like to hear, and she requested Crosby, Stills, Nash and Young’s “Carry On.” She found comfort listening to her favorite music, and everyone in the operating room was delighted when she began singing along.
One week later, battery packs to control the electrodes were implanted just beneath the skin of her chest. Ms. Roucis can easily access the battery pack controls to turn the system on and off.
Since the electrodes have been turned on, Ms. Roucis has noticed a profound difference. Her medication dose is now less than half of what it used to be. Her tremors have decreased substantially. She still experiences some tremors in her left leg and right arm, but she has her balance now and the ability to walk freely, something she had not been able to do in years.
“It’s like a gift,” she says. She feels so much better now and is still performing in PHAMALY shows. She recently finished a month-long run of “Steel Magnolias,” and she’s decided not to perform in the 2009 summer musical so she can travel and really appreciate her new-found freedom.
“I notice the little things the most,” Ms. Roucis says when she contemplates how her life has changed since having DBS. “Things as minor as turning the pages of my scripts myself. I’m so glad I had the surgery.… It’s the next best thing to a cure. I‘m free to be me again, and that feels really good.”