Parkinson’s disease nearly overwhelmed Colin Halstead’s life.
He needed two canes to walk. He took 27 pills a day. His voice was hard to understand, and his ability to make facial expressions had all but slipped away. His employer thought he needed to go on disability. Then he faced needing his parents to move from Sutherlin to Eugene to take care of him.
At 48, he felt like a child again.
“Just thinking about being sick for the rest of my life. Ill ─ chronically ill. And it’s only going to get worse,” Halstead said. “Those were the darkest days.”
Now, since having deep brain stimulation surgery at OHSU, things are looking up.
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Halstead, now 52, developed a hand tremor more than a decade ago. His doctor at the time didn’t take it seriously, Halstead said, figuring that he had a familial tremor like his dad. Eventually, a doctor at OHSU diagnosed Halstead with Parkinson’s disease, a progressive brain illness that robs people of the ability to control movement.
Soon “everybody and his dog was sending me videos and some sort of miracle cure or something ─ usually with the word organic in it,” Halstead said. He’d seen a TV show about deep brain stimulation, or DBS, to treat Parkinson’s but at the time wanted no part of it.
DBS involves placing tiny electrodes in the brain and connecting them to a pacemaker-like device implanted in the chest that sends low-voltage electrical pulses to help control movement. At the time, patients had to be awake during surgery to respond to questions and commands as the surgeon made sure the electrodes were in the right spots. That’s still the case at many hospitals.
“I did not,” Halstead said, “want to be awake during the procedure.”
But as his symptoms worsened, Halstead found himself watching video after video of DBS surgery on YouTube. He learned that Dr. Kim Burchiel, an OHSU neurosurgeon and DBS expert, had developed a new type of DBS ─ “asleep” DBS. In 2011, Burchiel pioneered using MRI and CT scans to place the electrodes while the patient is under general anesthesia. An OHSU study showed the technique is exceptionally precise.
That was “huge,” Halstead said. “It changed my whole willingness to do it.”
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As Halstead was wheeled into Burchiel’s surgical suite in October 2013, he became anxious as he recognized the equipment he’d seen in videos.
“The anesthesiologist came over and said, ‘Would you like to be asleep?’ and I said, ‘Yes, please.’”
The next day, Halstead’s dad, Jim Halstead, came into his room. Colin Halstead said his dad isn’t the emotional type, but “he started crying and said, ‘You look and sound like you used to look and sound.’”
His mom, Suzy Halstead, said: “It was like having our son back. … All the Parkinson’s symptoms for the most part were gone.”
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Now Halstead manages his Parkinson’s motor symptoms with one pill a day. His voice and facial expressions are back. He no longer needs a cane.
“I have an umbrella stand that has all my canes in it in the living room,” he said. “It’s a reminder every day that I don’t have to use those anymore.”
He works full time as a counselor at Eugene’s First Baptist Church, overseeing about 20 support programs for people coping with divorce, loss and other issues. His supervisor, instead of suggesting he consider disability, recently encouraged Halstead to pace himself.
Halstead is also back to pursuing his love of travel, cooking and woodworking.
Since the surgery, he has traveled to Italy, where he hiked the uneven stone paths of Cinque Terra with only a walking stick. Next fall, he plans to tour Iceland in a camper van and then attend his 30th college reunion in Minneapolis. Next spring, he plans to visit New Zealand.
He’s back in his wood shop, completing projects to expand his living room and to outfit a teardrop trailer with windows, a bed and a fold-out kitchen. He figures he’s made about 30 double batches of biscotti to give away over the past year, using a friend’s sworn-to-secrecy recipe.
Dr. Sara Batya, his Eugene neurologist, tells him he’s a “poster child” for DBS because his response has been so good.
Even so, he had bouts with that he calls “Riverdance leg” early on, and he still has occasional tremors. He finds relief by adjusting his DBS settings with a remote device. He also has trouble with fine motor skills, such as opening plastic bags at the grocery store.
He knows DBS isn’t a cure for Parkinson’s disease. For now, nothing is.
Still, he would do it all again. “I tell people I’d do this once a year if I had to,” he said. DBS “gave me most of my life back.”