Watch Bill Crawford walk across the second floor atrium of the University of Kentucky Chandler Hospital. He seems to glide, a quiet minister wearing a Porter Memorial Baptist Church button-down shirt, visiting hospitalized patients.
In 2004, Crawford was diagnosed with Parkinson’s disease, a progressive disease of the nervous system marked by tremor, muscle rigidity and imprecise movement. It strikes mainly middle-aged and elderly people, affecting the basal ganglia of the brain.
Crawford, 57, noticed some worrying movements in his hands in 2004. As a director of music, he noticed finger nerve twitching, but wrote it off as too much caffeine — for a while.
He was later diagnosed with Parkinson’s and went on a medication that left him with horrific side effects. He saw things that weren’t there, couldn’t sleep and spent an excessive amount of time on eBay.
The day of his first appointment with Dr. Craig van Horne, director of the Deep Brain Stimulator Center at UK, Crawford was curled up in a ball, fighting body cramps so intense that he describes them as “life-changing.”
Van Horne told Crawford he would be a good candidate for Deep Brain Stimulation surgery, also known as DBS. But Van Horne has also worked on a pilot program at UK in which Parkinson’s patients have deep-brain stimulation surgery — with a device like a pacemaker regulating nerve cues in the brain — as well as nerve tissue from their ankles grafted into their brain. It’s called DBS Plus.
Crawford got the DBS procedure, and he says that has made all the difference. Not only has it helped him move precisely, but shortly after surgery he found he had regained the “beat” that allowed him to appreciate music.
While the Deep Brain Stimulation surgery can alleviate symptoms, it does not slow the progression of the disease. Van Horne thinks that DBS Plus might do that, and the only sacrifice a patient will feel is a numb spot in the ankle from where the nerve tissue is harvested.
It’s not the nerve itself that makes the difference: It’s the supporting tissues, the repair cells, with their DNA helping the peripheral nervous system become functional again.
Or so UK hopes to prove in the course of its second research study into the upgraded surgery. Results of the first, which ran from 2013-2016, were published in the Journal of Neurosurgery.
UK applied for a clinical trials grant from the National Institute of Neurological Disorders and Stroke in October; it will be reviewed in early 2018. Initial funding is from the UK Center for Clinical and Translational Science and through philanthropic grants such as those raised by Parkinson’s patient Ann Hanley of Lexington.
So far, UK has implanted 46 subjects with the deep brain stimulator and the additional nerve graft. Van Horne hopes that his research can eventually be used to improve outcomes for patients with other neurodegenerative diseases — and more immediately, for stroke and epilepsy.
“We’re really trying to alter the the course of the illness,” van Horne said.
But DBS Plus is not foolproof: About 25 percent of patients who received DBS Plus saw their condition stay the same, while the remaining patients are classified as either better or dramatically better.
Nor is the research process quick: Widespread acceptance of the treatment, or a standard of care nationwide, is likely to take 15-17 years, van Horne said.
“We’re all excited, but it just means we’re just moving down the pathway,” he said.
Although there are hundreds of Parkinson’s trials listed at clinicaltrials.gov, UK thinks its program has appeal based on the variety of those who have already undergone the process, traveling from Texas and Tennessee and Canada to the UK hospital for their procedure.
Patients who receive the more widely available DBS process also record successes and failures. Deep brain stimulation can improve symptoms, according to the Mayo Clinic, although they usually don’t entirely disappear. A 2011 paper published in Archives of Neurology suggested that motor improvement from the procedure was sustained 10 years following the procedure, although the benefit was less than patients had experienced immediately following the surgery.
After his 2015 surgery, Crawford’s improvement was appreciable; he calls it “miraculous and life-changing.” Before talking to a reporter earlier this month in an atrium at the UK Hospital, he had been making visits to hospitalized members from his church: “It’s not a coincidence I’m here. I believe God arranged it.”
One of the troubles with turbo-charging the DBS Plus research is that there’s no drug or device company involved to provide capital, as would be the case if van Horne were working on a drug-based solution. The material for the surgical procedure comes from the patient’s own body. UK is casting its idea into the financial waters of fund raising to expand its research.
Crawford is now a walking example of what the graft does, and how long it can last.
Like many parents, he marks his life in his children’s milestones: He and his wife Lisa are the parents of four children, including a son who died. Now, Crawford hopes to be able to walk his daughter, a senior at UK, down the aisle at her wedding.
She’s not engaged. In fact, her biggest relationship at the moment is helping to operate the restaurant Chocolate Holler.
That’s how optimistic Crawford is.