Mary Kane won't let Parkinson's disease stand in her way.
"I move hay. I move 50 pound bags of feed. I fix fences," she said. "I chainsaw down trees!"
So when her symptoms become resistant to the medication she has been taking for 16 years, she went to Johns Hopkins Hospital to have her brain surgically re-wired.
Parkinson's is a degenerative neurological disease. Some of the symptoms, which vary from patient to patient, are caused by a deficiency of dopamine. Dopamine is a neurotransmitter, a chemical that delivers messages from brain cells that regulate many body functions. When there is not enough, patients experience involuntary movement. Tremors, slowness of movement, and rigidity are all common symptoms of the disease, which is why Parkinson's is classified as a movement disorder.
There is no single diagnostic test to determine if a patient has Parkinson's, and people like Kane are often misdiagnosed.
"I tell everyone I was diagnosed by my vet," Kane, a recreational equestrian, said.
After riding in a horse race in 1991, Kane was shaking. Some of her friends attributed the tremor to stress, but a veterinarian suggested she might have Parkinson's. Almost a year later, after being told she has ALS, and multiple sclerosis, Kane was correctly diagnosed with Parkinson's — this time by a physician.
Parkinson's is a degenerative condition, and for Kane, who is 57 years old, mercifully slow-moving. She credits her active lifestyle with her relatively good health, but her worsening symptoms make it hard for her to care for her two horses and her Russian wolfhound. After consulting with her neurologists in Tennessee, Kane traveled to Johns Hopkins Hospital for the ultimate treatment.
An ABC News team followed Kane's story while filming at Johns Hopkins for the "Hopkins" series. As she waited in her hospital room the day before surgery, Kane's pronounced symptoms could no longer be mistaken for anxiety.
Kane sat up in her hospital bed and swayed from side to side as she proudly discussed photographs of her animals. Her movement, called dyskinesia, is a side effect of the medication she takes to treat the tremor and rigidity. Only hours away from brain surgery, Kane was remarkably upbeat, even as she explained the effect her symptoms have on her daily life.
"It's hard for me to eat. When I go to a buffet, it's a food fight … Parkinson's is not fun, but it's fun to watch," she said.
Although she joked, she also admitted to being scared and somewhat ambivalent about the procedure: "I don't like being messed with, a hole in my head and all that nonsense."
Deep Brain Stimulation (DBS) seems like something from an episode of Star Trek. A surgeon bores a small hole in the skull and implants a wire into the brain that extends to a regulating device embedded under the skin on the chest. This system, sometimes compared to a pacemaker, sends electricity to a targeted area of the brain. These electrical pulses can help curb Parkinson's symptoms.
"I'm going to be bionic," quipped Kane.
Dr. Frederick Lenz, Kane's neurosurgeon, said "she's the ideal patient," even though DBS is not effective for everyone with Parkinson's. Kane is a good candidate because she has early onset Parkinson's with no complications, that has been aggressively managed with medication. The medication causes side effects, like dyskinesia, that can be treated with DBS. Aside from Parkinson's, she claims to be "healthy as a horse."
"Every advantage is purchased at a risk," Lenz reminded Kane before he listed the possible complications of the surgery. One of the risks of DBS, like any brain surgery, is a debilitating or fatal stroke. Kane was undaunted. "It's going to work" she said.
Most surgical patients are asleep, and unaware of the surgeons in the operating room, but for some brain surgeries, the patient needs to be awake in order for doctors to assess brain function.
During the procedure to implant and test the wire in her brain, Kane interacted with her doctors. They walked her through the steps as they gave her local anesthesia, drilled a hole in her skull, implanted the wire, and tested the effects of electricity. After trying different combinations of location and voltage, suddenly her tremors stopped.
"I haven't felt that way in 16 years," Kane told ABC, reflecting on the experience post-surgery. "It was like somebody dumped a bucket of hot water on me … That incredible dramatic point when I was free."
DBS requires multiple procedures to implant the system, and then visits with a neurologist to calibrate the settings. When Kane left Hopkins after surgery her symptoms were no better than when she first arrived. They had to wait until she healed before activating the device.
Weeks after her surgeries, Kane returned to the hospital to get "turned on." During this visit, Kane worked with Dr. Zoltan Mari, a neurologist who was in the operating room during her surgery to calibrate the settings.
After her dramatic awake brain surgery, this visit seemed pretty tame, but Kane's expectations were high and there was still a possibility the treatment would not work as she hoped.
Mari sat next to her in the exam room and used a machine that looked like a large PDA to change the settings as Kane gave him feedback.
At first the effects were unpleasant. "It feels like my hand is a concrete glove," Kane said as she held up her rigid hand. Just like in the surgery, eventually Mari adjusted the settings, and Kane's hand stopped shaking. Her eyes welled up with tears as she once again experienced the feeling of release that she remembered from her surgery.
Although Kane left with a positive result, she must return to Johns Hopkins in the coming months to "tweak" the settings again. More than a year after doctors drilled a hole in her skull, Mary Kane is thrilled she had DBS.
For some, DBS is an effective treatment. It has helped Mary Kane continue to run her small farm, but it does not stop the progression of the disease. Unfortunately there is still no cure for Parkinson's.