Now that I've had DBS surgery, I believe my future is bright. I believe I've been given a new lease on life, and that's pretty exciting.
Boston Scientific DBS Patient
Fountain Hills, AZ
One of Kenneth Brown's great loves in life, besides his work as a pastor, is walking. Living in Arizona, he was able to walk daily—anywhere from 30 to 90 minutes. He also treasured his hikes in the Grand Canyon. “Before Parkinson's disease, I was able to walk all the way in to Phantom Ranch and back out again. 23 miles round trip.”
A few months before his initial diagnosis, Kenneth suspected he had the disease and began to mentally prepare himself. When he finally got diagnosed, he knew how he was going to tackle it. He believed that succeeding with Parkinson's disease had to do with attitude more than anything. From the beginning, he would say, "I have Parkinson's disease, but Parkinson's disease does not get to control me." He wanted to go to Haiti to help people who had been affected by the hurricane, but others urged him not to go, warning him that if he had a medical problem, it would be difficult to have it addressed while there. He went anyway, and later that year, went to Nepal.
I understood where this road was going take me, and I didn't want to go [there]. I'd seen people with Parkinson's, with advanced cases, and knew that's not where I wanted to be. So, I was looking for a different route.
But things began to get more difficult. “[As a pastor], I live a very public life, and I'd know people were staring at [the tremors in] my hands, and I'd worry about what they were thinking.” His toes began to curl, and he found himself walking on his toes—painfully. He would often worry that he would fall.
“I understood where this road was going take me, and I didn't want to go [there]. I'd seen people with Parkinson's, with advanced cases, and knew that's not where I wanted to be. So, I was looking for a different route.”
Kenneth first learned about DBS because the editor of his local newspaper had DBS surgery and wrote an article about it. “As soon as I read about it, I said ‘That's what I want to do.'" He needed no further convincing.
He chose a Boston Scientific DBS system because of the device's fifteen-year lifespan.* “I had heard about people having three or four years and having to change the battery out, and I didn't want to keep getting cut open over and over again.” He was confused, though, about how he would recharge the battery. “How do you recharge something that's in your chest?” The doctor pulled out a collar put it around his neck, and said "Just like this. When you hear a triple beep it's done." “And I thought to myself, ‘that's a piece of cake, I can do that.'"
His doctor also explained to him that Boston Scientific leads are unique because they have eight contact points in each lead, meaning that as his Parkinson's disease progresses, the device can be reprogrammed to accommodate his changing condition.
I refuse to give in to this disease. It doesn't get to win. My message to anybody considering DBS surgery would be: Why put up with the symptoms of this disease?
When the device was turned on for the first time, Kenneth's tremors disappeared completely. “I had heard people talk about [it], but when you experience it for yourself... I don't know if you can imagine what it's like.” Within a day or two, his toes were no longer curling, and he was no longer walking on his toes. He was also able come off the medication. “Before DBS, I was taking nine pills a day. Now, I don't take any medication whatsoever.”
“Now that I've had DBS surgery, I believe my future is bright. I believe I've been given a new lease on life, and that's pretty exciting.” First, he can get back to the work he loves. “I've wanted to preach, or stay active, at least until I'm 75 or 80. And I feel like that's possible now, so that's a dream come true.” He feels confident that when he's having one-on-one conversation with the people in his congregation, “they're paying attention to me--not to what's wrong.”
Kenneth also has a goal of hiking in the Grand Canyon again—to go all the way to Plateau Point, and back—13 miles round trip. “And if I'm able to do that, I'm going to feel like ‘Parkinson's—you don't own me.'” He started physical therapy to work on regaining his full strength. “I feel confident that as soon as I get these quads back, I'm going to be back, and that's pretty exciting.”
“I refuse to give in to this disease. It doesn't get to win. My message to anybody considering DBS surgery would be: Why put up with the symptoms of this disease?”
Now that I've had DBS surgery, I believe my future is bright. I believe I've been given a new lease on life, and that's pretty exciting.
Suzanne Friedman, a 54 year-old Florida native, has run a marathon, traveled around the world, and raised two children with her husband of 25 years, Steve. “We're [a] very, very active [family]. We just came back from Colorado where we were hiking and white water rafting.”
About seven years ago, something started to change for Suzanne. The very first symptom she noticed was when she was walking on the beach in flip-flops. Her shoe kept slipping off and she didn't understand why. Soon after, she began to notice her left leg shivering a bit while working at her computer in the morning. She asked her husband if he noticed anything strange with her leg. “It was almost like [it was] plugged it into a socket and it was vibrating.” No one else could see it or feel it, but it continued to plague her. Eventually, Steve started to notice that she was dragging her feet, and encouraged her to see her doctor, but Suzanne was resistant—whatever it was, she didn't want to know.
At her next annual exam with her primary care doctor, she mentioned it, and her doctor told her it was probably a pinched nerve. She went to a neurologist for further evaluation, and it was then that she was diagnosed with Parkinson's disease—a diagnosis that was soon after confirmed by another specialist.
I came to terms with the fact that if I wanted to get better, the only way [I felt] I was going to get better was through Deep Brain Stimulation.
After her diagnosis, she went into an emotional tailspin for about a year. “When you start reading on the computer about what your life's going to be like, it's scary.” One of the things the specialist told her is that “if you want to keep moving, you better keep moving.” As a person who was already committed to an active lifestyle, Suzanne re-upped her commitment. From that day forward, she allocated an hour each day to exercise, even joining an intense boxing class designed for people with Parkinson's disease.
But despite her best efforts, the Parkinson's disease continued to progress. The medicine began to make her tired and eventually it stopped working consistently—she couldn't count on it anymore. She would wake up multiple times in the middle of the night needing to use the bathroom, but often wouldn't be able to get herself in and out of bed. Trips to restaurants, stores, and special events like weddings became unpredictable and anxiety provoking. “Sometimes, I went into the grocery store, I'd fill up [my cart] and all of a sudden, the medicine would kick off. I'd leave my groceries and go because I just never knew.”
When it got to the point where she almost couldn't walk, she decided that she had to find out if there was anything else at all that she could do. Suzanne started doing research online, and when she came across information about deep brain stimulation (DBS), she became hopeful.
The next time she saw her doctor, she asked him about it, but he was against it. Steve remembers her doctor saying "Forget the DBS. There's this new medicine that's coming out. There's an inhaler that's coming out. There's a strip that goes under your tongue, that's coming out. It's all going to be great!" But she tried them and they didn't work, and many had adverse effects on her. Finally, Suzanne said to the doctor, "You know what? I've been waiting for seven years for a medicine to make me feel better and every time they come out, I have other side effects. I'm tired of waiting. I'm watching the years go by, I need to do something now."
I've been waiting for seven years for a medicine to make me feel better and every time they come out, I have other side effects. I'm tired of waiting. I'm watching the years go by, I need to do something now.
Even though her doctor did not seem to feel comfortable talking to her about DBS, she continued to do research. “Computers are a wonderful thing!” She joined online support groups and reached out directly to nearly twenty people to speak to them about their experiences.
“I came to terms with the fact that if I wanted to get better, the only way [it was going to happen for me] was through Deep Brain Stimulation.” Her brother is a doctor, and helped her research the best place in the area to get it done, as well as which DBS system would be right for her. After her extensive research, there were three reasons Suzanne ultimately chose a Boston Scientific DBS system.
First, was the size. “I felt very comfortable that it was a very small size and it wouldn't show. I had seen people that had other devices that stuck out of their chest, and mine, I [felt] I could wear a bathing suit with it and nobody would notice.”
The second reason was the technology. “Even though it's new to the United States, I found that it had been out in Europe for many years. [For me it had the most up-to-date technology, and I thought to myself, ‘ Why wouldn't you want the latest ?”
And last, there's the battery. “I don't want to go through another surgery until I have to. I know some other devices say they might last five years, but I would rather have a device that lasts at least 15**.”
Suzanne finally had her Boston Scientific DBS system implanted. On the day that the device was “turned on,” she brought Steve and her daughter with her. Steve recalls how nervous Suzanne was, worrying that it wasn't going to work. “We were sitting there and her leg is shaking, her foot is shaking. They turned on the device and all of a sudden, the foot stopped. They turned it off and the foot started again. Turned it back on, the foot stopped. My daughter started crying.” After the programming, the three of them went out to eat, and Suzanne was walking like her old self again.
Now there's nothing that she really can't do. She feels whole as a wife and a mother. She [drives], she goes shopping… We just went away and were hiking, and she was way ahead of me. I couldn't keep up with her. I'm very grateful.
For Suzanne, one of the greatest gift DBS has given her is consistency. “Life before DBS was a struggle. I was suffering every day. Now, [my experience has been that] I don't have to worry about whether my medicine works, whether it's not going to work, when I have to eat, when the next medicine's due. I'm sleeping better, not napping every day, being able to stay up late. Everybody keeps telling me that I seem happy and that they see me smiling more. DBS has brought my personality back.”
Steve adds, “Now there's nothing that she really can't do,” Steve said. “She feels whole as a wife and a mother. She [drives], she goes shopping… We just went away and were hiking, and she was way ahead of me. I couldn't keep up with her. I'm very grateful.” On their next trip, the family plans to go skiing.
Suzanne doesn't understand why more doctors don't encourage DBS for their Parkinson's disease patients. “[What] I have learned is a lot of older people don't know anything about [it]. Their doctors don't even tell them about it.”
Suzanne happily talks about her experience. A few weeks ago, a young man in his thirties with Parkinson's disease who's considering DBS called Suzanne. As they were finishing their conversation, Steve said "You know what? Let me get on the phone with this guy." Steve shared the dramatic changes that he'd seen happen for Suzanne with DBS, and “the guy started crying on the phone. He was crying just to know that he [may] be normal again.”
Steve added this final note: “For anybody who's thinking about going for DBS, there is hope. I know everybody has that fear factor. When you read about it, it's invasive, but it is so well worth it. There is no reason to give up. There is hope.”
Ken was diagnosed with Parkinson's disease in July of 2010. He'd been noticing that it was difficult to make coffee in the morning, and he could barely hold the coffee pot. His wife, Barb, first wondered what was going on when they were sitting on the couch watching a movie and Ken's hand was beating against her shoulder. “I said, ‘Stop it.' It was really irritating. And he said, ‘I can't.' And I said, ‘Well then, you need to call an make an appointment with the doctor, because that's not right.'"
After his diagnosis, he started on medications, which over time ramped up as the disease progressed. “I was taking eight pills a day—six of the one, two of the other. I don't want to say I was discouraged, because I don't let [anything] discourage me, but it was a pain in the butt to be disabled.” He couldn't do the things he loved, like playing golf and fishing with his grandchildren. “With fishing, you've got to tie these little knots. I would tell my granddaughter ‘you should get your dad or somebody else to tighten this, because it takes me a while.'” He couldn't work around the house, or change the oil in his car, and he was always worried about falling.
It was a very easy transition from ‘let's think about it' to ‘let's make the decision.'
Barb had to help him get dressed, and get in and out of chairs. She watched him try to do things around the house that he'd always done. “He still did the dishes, loaded the dishwasher, unloaded it, but it took him all day to do it. [He'd] do a little bit, then have to stop.” He'd want to accompany her to the store on errands, but when they got there, he'd have to find a bench and sit down.
As things got worse, Barb remembers thinking “Well, this is what it is—we'll deal with it. We thought there wasn't really anything you could do about it.” But eventually, Ken's doctor told him that he was a prime candidate for DBS.
At first he was resistant because they would have to drive all the way to Miami for it, but about four months later, he was ready to explore it. The doctor in Miami told him not to take any pills on the day of the consultation. “And when I did that, [everyone was] ready to jump and grab me, because I couldn't even walk from here to [there]."
After talking with the implant team in Miami, “it was a very easy transition from ‘let's think about it' to ‘let's make the decision.' It was a no-brainer.” The next choice he had to make was which device to he wanted. He remembers his doctor saying, "do you want to go to the hospital five times in 20 years, or once in twenty years?" I said, "I'll take the once. And that was Boston Scientific. 15 years* on a battery is just unbelievable.” More than anything, Ken wants to be able to walk down the aisle with his granddaughter, Ashley, at her wedding. “Why would you want to go take a chance on another operation every 4 or 5 years?”
Knowing the debilitation that he had before, and what he's like after the procedure—it's night and day.
He had his DBS implanted almost seven years after his initial diagnosis. His perception of what the implant would be like versus what it was actually like was quite different. “It's amazing what they can do. There's no pain involved, no nothing. It's just amazing, that's all I can say.”
“Now, I'm not taking any medicines for Parkinson's.” He can dress himself again, chop vegetable for salads, tie knots, drive. And the biggest thing? “Getting my socks or shoes on. I hated shoes that I had to tie, because I couldn't tie. Now, I got my Keds on, and I'm a young kid again.”
Before DBS, his family made several trips to Disney World without him. The next time they go, Ken will go, too. “That felt really good [to hear],” Barb said. “We missed him being there.”
When asked what she would tell patients considering DBS, Barb said “Knowing the debilitation that he had before, and what he's like after the procedure--it's night and day.”
For 69 year-old Bill Day, switching to the Boston Scientific Vercise DBS from his old DBS system made a world of difference.
He got his first DBS system about two and a half years after he was diagnosed with Parkinson's disease. "My disease was progressing at a very rapid rate, and I felt I needed something more than a pharmaceutical solution." A former CPA and Chief Financial Officer of a hospital, he found that he couldn't open an envelope, type, or add up a column of numbers without making errors—not to mention the disruption of everyday activities of life like holding a fork, showering and shaving.
He went to see the neurosurgeon who had done back surgery on him several years earlier and was implanted with two generators-one to control the right side of his body, and one to control the left. He found the surgery to implant the leads in his brain to be "very simple. There was virtually no pain…and I was shocked at that!" Within six months of the surgery and adjustments, he was "probably about 80% back to what I considered normal."
But the generators in his chest were "somewhat bulky and you could see them," and he still had some physical issues. "My voice was getting softer and softer, and family members would ask me to repeat what I had just said, because they didn't hear it. Eating certain foods would cause great difficulty in swallowing. I couldn't really lift my left arm, and sometimes I would choke so much, on the old system, that I'd almost crawl on the floor just to get over it."
After about eighteen months, he was at a family holiday party and "I noticed that I wasn't walking properly, that some of my [Parkinson's disease] symptoms were returning." He found out it was because the batteries in his two generators had reached their end of service-far earlier than the three to five years that he'd been told to expect.
"I had to get my primary care physician to schedule me for an evaluation so I could have outpatient surgery again, and then I had lab work and psychological work…and [I realized that] if this keeps up, I'm going to have my Parkinson's completely return to me before I can have the batteries replaced. It was a horrible feeling."
A friend of his from an exercise group he belonged to had recently been implanted with a DBS at Bill's urging, and when Bill saw him post-implant, he couldn't believe his eyes. His friend had one generator, not two, and Bill couldn't even see where it was in his chest. "I'm looking at him and said, 'Did you really have the surgery?' My friend had this lightweight battery that really wasn't noticeable, and here [mine is] double the size, noticeable and heavier. My friend looked fantastic-I mean, you'd never know that he had the DBS, [except that now] his movements were really smooth." Bill asked him which DBS system he had, and his friend enthusiastically told him that it was Vercise™ DBS.
Bill asked his doctor if he was a candidate to switch to Vercise DBS, and he was. In addition to being able to remove the two bulkier generators and go down to one, more compact generator, he learned that the Vercise DBS battery was rechargeable and would last at least fifteen years.† "In those 15 years I [would have] had to have had seven or eight outpatient surgeries [to replace the batteries], and I didn't want to go through that again."
After Bill had his Vercise DBS implanted, he was amazed by just the physical change alone. "Before, I had two bulging [generators]. The other night I was [in bed], I didn't feel anything in my chest. I didn't sense it was even there." But beyond that, there were all sorts of other surprises. "I didn't anticipate that there would be improvement in the voice, improvement in my left arm, improvement in swallowing, and no more choking. Now, I'm [really] back to what I was like before I had Parkinson's. It's like investing in a stock and then finding out that there's a bonus, and the stock dividends are coming in."
Bill and his wife Maria have three children and two granddaughters-Leah and Emma. When his granddaughters were born, he couldn't hold them in his arms because of his Parkinson's disease. "They'd ask me to go play with them and I couldn't." Even with his previous DBS system "I felt limited. Sometimes the girls would ask me, 'Grandpa, will you do this with us?' And I'd say, 'Well, I don't know.'"
"But now, with Vercise, I feel like I have that extra energy I can give to the kids. And rather than just sitting in a chair or at home, watching TV or reading, I'll go out in the yard and play with them. That's a joy that's indescribable. These are some of the best moments of my life."
As he watched his granddaughters playing in their favorite park, he was philosophical about it all. "This may not be a permanent solution, but it's given me a life that I didn't expect I'd have [again]. They're really enjoying life. And so am I."
Individual symptoms, situations, circumstances, and results may vary. Please consult your physician or qualified health care provider regarding your condition and appropriate medical treatment. The information provided is not intended to be used for medical diagnosis or treatment or as a substitute for professional medical advice. For more information on the approved use, risks, and benefits of Boston Scientific's DBS Systems, click here
However, as the needs of your condition change, DBS could become a good treatment option for you. Be sure to have a conversation with a doctor about what treatment options are best for you.
However, as the needs of your loved one's condition change, DBS could become a good treatment option. Be sure to have a conversation with a doctor about what treatment options are best for your loved one.