Back To Life: Deep Brain StimulationJune 17, 2017
Story by Martha Rasche
Photos by Dave Weatherwax
Four years ago, Steve Davis couldn’t eat soup without spilling it.
He couldn’t button his clothing, and it was difficult to bend to put on his socks and shoes.
He couldn’t steady himself to write or use a computer.
The Huntingburg man had been diagnosed with Parkinson’s disease in 1998 and by 2013 the symptoms were at their worst.
Often his right leg and hand would shake. Sometimes his neck and head shook, too.
He fell more often than normal. One fall broke his left wrist, leaving a scar.
Whenever he sat, he inadvertently leaned right. Sometimes his body from his hips down would lock and painful charley horses would last 30 minutes. One evening when he and his wife, Linda, were at a play, his legs locked up and the couple stood in place until Steve could move again.
Then, in July of 2013, Steve had deep brain stimulation surgery, known as DBS. The surgery allows electricity to stimulate nerves in the brain that natural chemistry no longer takes care of.
In effect, the procedure put Steve’s disease on hold. And it happened just in the nick of time. The day before his surgery, he fell on his back porch and hit his head on the concrete. Fortunately, it caused no damage to speak of.
He couldn’t take any of his medications for 24 hours before the operation, and missing doses tended to contribute to his legs locking. The morning of the operation, Linda dropped him off at the hospital door and went to park the car. Steve’s body became immobile as soon as he got inside and he flopped into a nearby wheelchair. That is where Linda found him and she pushed him in the wheelchair to registration.
Steve, now 67, experienced symptoms of Parkinson’s for 12 to 18 months before he was diagnosed with it nearly 20 years ago. He took a while to diagnose, he says, because at not yet 50 years old he was considered too young to have the degenerative disorder of the nervous system that results in tremors and the loss of balance and motor skills. It is much more common in people older than 65, according to his neurologist, Dr. Kristi Nord.
Across the country, about 60,000 people are diagnosed with Parkinson’s annually. As many as a million Americans have the disease, which is caused by the reduction of dopamine production in the midbrain. Why Parkinson’s occurs is largely unknown. Only in a few cases have genetics been proven to play a role.
In the long process of diagnosis, Steve saw his family doctor, a chiropractor, an orthopedist and several neurologists.
One side effect of the brain surgery is that Steve gets emotional easily. Tears flow freely as he talks about the day he was diagnosed with Parkinson’s. He was in the neurologist’s office by himself when the doctor “put the diagnosis on me.”
It was around lunchtime, and Steve left the Jasper doctor’s office “kind of stunned, kind of in a daze.” He drove around for a bit and then pulled into the parking lot of St. Joseph Church to ponder the situation and decide his next move. He said a prayer and then said to himself, “I have Parkinson’s. So what?” Then he went back to his job managing a technical team at Kimball Office.
“My attitude has always has been very positive from that point on. It took me a minute to refocus on my outlook on life, I guess.”
His wife at the time, Debbie, was dying of breast cancer and Steve was amid six years of caring for her. Given her own medical condition, she was unable to support Steve and his new diagnosis. Their two children, Sara and Nick, were teenagers.
“It was tough going,” Steve says, “but you keep your attitude, you keep your outlook good, and you’ll get through a lot of stuff. And that’s what I did.”
Steve’s doctors treated the disease with medication and he went through stages of good health. He would take his medication with him, even on the golf course, and use it as needed. But as time passed, his condition deteriorated. It seemed every muscle on the right side of his body was affected, and his right leg was smaller than the left from less use.
Parkinson’s is a progressive disease — meaning it worsens or spreads — and medication tends to lose its effectiveness over time. When Steve’s disease was at its worst, he was taking six or eight or more Sinemet pills a day, to decrease overall tremors, and about three Mirapex tablets a day, to treat stiffness and muscle spasms in his legs.
Debbie died in 1999. In 2007 Steve started dating Linda. They became acquainted through an online dating service, and the first time they met, something about Steve’s behavior got Linda’s attention.
“The very first date we had, everything was wonderful,” she says, “and then when it got late in the evening I just kind of noticed something and I said, ‘You doin’ okay?’ And he said, ‘Well, I should tell you I have Parkinson’s.’
“My brother’s a psychologist in Arizona, so I called him the next day — because I only had one date with Steve at that time, but I really liked him — and my brother said to me, ‘Linda, something’s going to happen to all of us. We’re all going to get something, and even if it progresses and you get five years of real love, that’s more than a lot of people have in their lifetime.’ So he says, ‘The way you feel, go for it.’”
The couple married in June 2008.
“And it’s been wonderful,” Linda says. “It’s a real blessing to me.”
Steve was working only part time when he turned 62. That is when he left his job at Kimball and started receiving Social Security disability benefits.
“I was intending to work longer,” he says, “but I just couldn’t write, I couldn’t type accurately, I couldn’t react as quickly as I needed to at my job.”
Nord has been affiliated with Memorial Hospital in Jasper since July 2012 and shortly after her arrival it fell to her to tell Steve that he had maxed out his medicines; the drugs would no longer give him the relief they once did.
Nord had done her residency in the Parkinson’s Disease Center and Movement Disorders Clinic in Houston alongside the doctor known as “the godfather of movement disorders,” Dr. Joseph Jankovic. Then she worked at Norton Hospital in Louisville and became very familiar with the DBS surgery performed there on Parkinson’s patients.
Nord started educating Steve about the surgery, which hadn’t been available when he was first diagnosed. It has been fine-tuned since its introduction and generally is covered by insurance.
Eventually Steve saw a neurologist at Norton for an evaluation. He picked up a 50-page booklet about DBS in the lobby and took it home, where he read it three or four times. Then he talked with a neurosurgeon who had him meet a 92-year-old patient who was leading a full life after having DBS.
“He gave me the sales pitch on doing the surgery,” Steve says. “He said, ‘You’ve got to do it.’ He said it’s worth it.”
Nord compares DBS to getting a pacemaker for one’s heart, except that the implanted electrodes go into the brain, specifically the part of the brain that controls movement.
There used to be a joke, Nord says, that neurology “is just ‘diagnose and adios.’ You can tell (patients) what’s wrong with them, but you can’t do anything about it. That’s not true anymore in neurology. There’s so much we can do for our patients and just really improve their quality of life.”
Once Steve was agreeable to having the surgery, the qualification process took six months (it has since been whittled to four). Good candidates for the surgery have no history of dementia, heart or kidney failure, or heart or lung disease.
In the five years Nord has been practicing in Jasper, she has referred about a dozen Parkinson’s patients for DBS, at either Norton or Indiana University Health’s movement center in Indianapolis. Those she refers generally don’t have a lot of medication options left, because they have tried several already and have had unwelcome side effects or they, like Steve, are maxed out on tolerated doses.
Steve recalls dementia testing as well as an evaluation of his ability to swallow and to walk. He and Linda both underwent psychological testing. Linda says the examiner wanted to ensure she would be emotionally supportive of her husband after the surgery.
The surgery itself came in stages. The first was having four metal screws drilled into Steve’s skull to support a halo during brain scans and during the surgery, to help him hold his head perfectly still. Doctors used the scans to determine precisely where to place the electrodes, which occurred about a week after the screws were inserted.
Just before the surgery, Steve prayed with his brother, Greg, who is a minister, as well as his own minister from Huntingburg United Methodist Church.
Upon entering the operating room and seeing all of the equipment, Steve told his surgical team: “If I’m going to be awake during this surgery, there’s two phrases I don’t want to hear. One of them, of course, is, ‘Oops.’ I don’t want to hear that. The other one is, I don’t want to hear the words, ‘I’m pretty sure that’s right.’”
DBS surgery takes place in an area of the brain smaller than the fingernail of a pinky. As there are no pain receptors in the brain, patients do not have to be under anesthesia. The surgeon had to remind Steve several times during the two-and-a-half-hour procedure to keep his eyes open.
“You have to be awake, and I knew that,” Steve says. “But I have a tendency to close my eyes to cope with things. When I get my hair cut, I close my eyes. So I was laying there and I had my eyes closed. He’d say, ‘You’re going to sleep on me. You gotta wake up.’ I’d say, ‘No, I’m awake. I’m just coping with it.’ He said, ‘You gotta keep your eyes open so I know you’re awake.’”
As the neurosurgeon did his work, a neurologist came in and instructed Steve to make specific movements, such as pushing his hands and feet against her hands. As Steve did so, the surgeon adjusted the electrodes to stop any shaking. Steve noticed improvements immediately and for days continued to feel residual effects of the brain having been stimulated, however momentarily.
Generally, the surgery is followed by a single night in the hospital, but Steve experienced vomiting after the operation so he spent two.
A couple of weeks later, under general anesthesia, a battery pack about half the size of a cigarette pack was implanted in Steve’s upper chest. The wire attached to the electrodes passes under the skin from behind his left ear.
When the swelling went down, the stimulator was turned on and the settings were adjusted.
Store security systems have been known to turn off some stimulators, but as the surgery has become more common, many alarm systems have been modified to avoid interfering with them. Steve carries his remote control with him at all times so that he can turn the stimulator back on if necessary. He also carries a card in his wallet that explains the battery pack.
Late last year Nord was trained to program DBS stimulators, so she now can tweak them long term — increasing the electric field, increasing the level of electricity or increasing the rate of the electric pulses. Steve returns to Norton twice a year and sees Nord that often also.
Using DBS surgery to treat the symptoms of Parkinson’s disease is only the beginning of the procedure’s potential. Studies continue, but initial results show that DBS can have positive effects on mood and anxiety disorders that are resistant to medication and other forms of treatment. And just two months ago, scientists reported that if the stimulation is timed just right, electrodes implanted in the brain can improve recollection in some people with dementia, epilepsy and other conditions that affect memory.
Steve credits the surgery for enabling him to regain a full, busy life. He is part of a prayer group at his church that meets weekly and he volunteers one afternoon a week at the Shared Abundance thrift store in Huntingburg. He is on the church’s leadership committee and is its finance chairman.
At this time of year he aims to golf at least twice a week and fish at least once. As often as they can get away, he and Linda take off to visit one of their combined four children — who live in Texas, Pennsylvania, Bloomington and Huntingburg — and six grandchildren.
Most importantly as far as his Parkinson’s is concerned, he uses an elliptical machine for 15 minutes four or five times a week.
“The only thing in all the world that we have found that reduces the progression rate of Parkinson’s disease actually is exercise,” Nord says. “So I really push with my patients, ‘You need to be active, be active, be active.’”
Along with the emotional changes that are a side effect of DBS, so are muscle spasms. Sometimes Steve’s right arm starts shaking at night. When that happens, he takes another pill.
Double vision is common in Parkinson’s patients, and Steve experiences it particularly at night when there’s a lot of traffic and a lot of bright lights; for that reason, he limits his night driving to local trips. He doesn’t make drives of an hour or more by himself.
His gait and pace have changed over the past few years. He now wears a kind of shoe recommended by his physical therapist, whom he no longer needs to see, in which the heel is lower than the toe; that slows him down, and he hasn’t fallen since he got the implant.
He has minor stiffness in his lower body, particularly at the start of the day, and his taste buds and smell are off some days.
Nord tells patients not to expect more than a 50 percent reduction in their medications after the surgery. “But you can imagine,” she says, “if you had to take medicine five or six times a day, on schedule, to be able to walk or move. Just to be able to be free of that constraint, … I think that’s the biggest part.”
Steve has gone from taking 10 or more pills a day before surgery to taking only two or three. Since he has had the implant, he has had its level of electricity increased a couple times.
“I do pretty much anything I want to do,” he says proudly. “I’d (have DBS surgery) again. I’d encourage anyone to do it. For the quality of life, it’s been well worth it.”
Nord says Steve’s results from surgery might be a bit better than average, but she encourages anyone with the disease not to lose hope.
“With all the medical advancements we have, there’s a tremendous amount of hope,” she says. “I want all my patients to be able to live their life as fully as possible. (Parkinson’s) doesn’t have to stop you in your tracks. Literally, there’s so much we can do. I feel like a lot of people get that diagnosis and never move forward with ... investigating the full range of treatment options. ... There’s lots we can do. More and more all the time.”
Help with Parkinson’s
A good friend of Steve’s died of Parkinson’s disease, and Steve has seen more than one person with the illness afraid to have DBS surgery or wait too long to get it. Those are among the reasons he is willing to share his experiences with anyone who wants to know more about DBS. Call him at 812-639-2044.
Memorial Hospital sponsors a Parkinson’s disease support group. It meets from 6:30-7:30 p.m. on the third Wednesday of the month in the conference room of the Medical Arts Building, 721 W. 13th St., Jasper. Just show up or call 812-639-1978 for more information.
• Martha Rasche is a member of the Dubois County Public Health Partnership Mental Health Committee and the local affiliate of the National Alliance on Mental Illness. With funding from the health partnership, she writes periodic articles related to mental and brain health. Find her online at TheseAreOurStories.com. Email her at email@example.com.