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.
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.”
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.”
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.