This is a story of my cousin Steve. My Aunt Kaye wrote this series of articles in the local newspaper on his life with Parkinson’s Disease. I thought this was worth reposting.
BOYCEVILLE, WI — “Today for the first time in years, the shaking stopped. Flat out, shut the front door, stopped! It will be months of tweaking the voltage and weaning off meds. But today, DBS (Deep Brain Stimulation) blew our minds! Boom!”
This June 18th posting on Facebook came from Joanna Bird. Joanna’s dad, Steve, in an effort to relieve the increasingly debilitating effects of his Parkinson’s, underwent a surgery known as DBS at St. Mary’s Hospital in Rochester. He has had the disease for 10 years; he is 46 years old.
How does one live with Parkinson’s? How does one come to accept the fact that this is a degenerative disease for which there is no cure? What is the day-to-day reality of those suffering from this insidious affliction? This story, told over the next four weeks, is Steve’s story-this is what he wants to share with our readers.
But let’s start at the beginning when, in 1966, a happy, cute-as-a-button blonde haired little boy named Steven Allen was born to Bob and Lynda Bird of rural Boyceville. He attended and graduated from Boyceville High School in 1985 and then enrolled at Chippewa Valley Technical School in the Criminal Justice Program.
During the two-year program, he worked at Fleet Farm to help support his young wife Jolene and first child, Joanna. He then was employed by the Dunn County Sheriff’s Department as a reserve officer.
Later jobs included a part-time police position at UW/Stout, security officer for 3M, a fulltime position with the Fall Creek Police Department, a full-time position with campus police on the UW/Green Bay campus, and finally a full-time position with campus police on the UW/Stout campus.
At that same time, Jolene, having graduated from UW/Stout with a degree in elementary education applied for and was offered the kindergarten teaching position in Boyceville.
The year was 1997, and life was good indeed for this particular Bird family of Boyceville (there are several). He and Jolene now had three beautiful healthy daughters-Joanna, Kayla and one year old Abbey. They both loved and were proud of what they were doing and took their professions very seriously. “Campus police are as trained or more trained than other police departments,” said Steve proudly about his job with Stout.
But then in 2002 Steve’s life changed in a profound way. “I had a twitching in my finger on my left hand and then felt some twitching around the body. I went to see Dr. Don Dexter, a neurologist in Eau Claire,” remembered Steve. The diagnosis was Essential Tremors which closely resembles Parkinson’s. “He gave me some medicine, and the tremors stopped . . . for six months. And then they returned.
“I tried to hide the tremors, but the guys I worked with noticed,” said Steve, “so they reported me to the boss.” He was sent back to the Workman’s Compensation doctor whom Steve had seen when the tremors first started. He had managed to hide the effects of the tremors the first time. It wouldn’t happen again.
“You may have fooled me the first time,” said the doctor, “but not now. I can’t let you go back to work.” It was May of 2003, and Steve, at the age of 36 was officially placed on disability. “When you are diagnosed with Parkinson’s, it’s an automatic disability,” said Steve acutely and painfully aware that the average age for this disease is 62. “That was a hard day when they told me I was done. There was no job on campus that was equivalent to what I was doing, and even if there was, it would have cost too much to train me. They knew and I knew this was a progressive disease. I was not going to get better.”
“Parkinson’s does not run in our family, so I didn’t inherit it. The cells that produce the dopamine are 80 percent destroyed; they no longer function,” explained Steve.
One “official” definition is this: “Parkinson’s disease, a degenerative condition causing tremor and motor impairment, is caused by loss of dopamine-secreting neurons in the midbrain area called the substantia nigra. In the brain, dopamine functions as a neurotransmitter-a chemical released by nerve cells to send signals to other nerve cells.”
This is the disease that Steve has. At the request of editor, Paul Seeling, we are going to run Steve’s story over the next several weeks. We hope it serves as an inspiration to our readers and brings hope to those who also suffer from this disease.
BOYCEVILLE, WI – Learning to live with Parkinson’s means learning a whole new vocabulary. What exactly does long and short term disability mean? What must one do to qualify for SSI (Supplemental Security Income) Benefits? The understanding of these terms and the paperwork required to qualify now become front burner kind of priorities because holding down a fulltime job is no longer an option.
“We are very lucky that Steve worked for the state, for UW/Stout,” said Jolene, “because Stout gave him full retirement benefits; we couldn’t have made it without Steve’s checks.” Getting SSI Benefits was another story.
“We had to hire an attorney to get those benefits,” said Steve, “and we understood because there are too many people trying to cheat the system, but that first year after diagnosis was a year of adjustment.”
In addition to the financial concerns, the disease was beginning to take hold. His left hand was in almost constant motion along with a tapping of his left foot. “I needed a nap every day because I couldn’t sleep very much at night,” he explained.
In 2003 when Steve Bird was given a diagnosis of Parkinson’s, it was a hard day for him and for his wife Jolene and their three daughters-Joanna, Kayla and Abbey, but in way it was also a relief.
“My doctor told me he thought I had Parkinson’s, but if I didn’t have that, he didn’t want to tell me what it might be,” remembered Steve. It could have been Lou Gehrig’s disease, Wilson’s disease or a brain tumor, all potentially fatal diseases. “When I learned I had Parkinson’s, I told people that it wasn’t going to get me, but 10 years later it was kicking my butt,” said Steve, and it was also forcing him to accept a whole new routine in his life.
“I have days when I kick and moan, and I have days when I don’t complain, but the disease is always much worse if I don’t exercise, and it has forced me to slow down,” he said. Daily exercises like lifting weights at the Boyceville High School weight room or biking the seven miles to his parents’ home became a new normal for Steve.
Chopping wood and even building his own little cabin in the woods near his brother’s home off of highway 79 also help fill his days But it’s the unpredictability of the disease that is perhaps the most disconcerting. As the effect of his medication begins to wear off, Steve and others with this disease, experience something called, “off time.”
“When that happens, when the meds are out of my system, I become totally helpless,” explained Steve. “Rigidity in the muscles sets in. I freeze without my pills,” he added.
And what does it mean to “freeze.” How about taking 20 minutes to put a towel back on the rack? How about being unable to put one foot in front of the other?
Another word which has found its way into Steve and his family’s lives is “dyskinesia.”
According to Internet sources, “Dyskinesia is a movement disorder which consists of adverse effects including diminished voluntary movements and the presence of involuntary movements. Dyskinesia can be anything from a slight tremor of the hands to uncontrollable movement of, most commonly, the upper body.”
Listening to Steve and Jolene describe Parkinson’s, it was clear that the dyskinesia is preferable to “off time” because during this time, the rigidity is gone. As the disease progressed, his medications, one of which contains synthetic dopamine because his own body was failing to produce it naturally, had to be increased, and as with most medications, there can be side effects especially after prolonged use. Life for the Steve Bird family had taken on an unwelcomed “new normal,” and then . . . the almost unthinkable happened.
On January 11, 2007, Steve and Jolene traveled to UW/Whitewater to watch their oldest daughter Joanna play college basketball. “I was driving and about 10 minutes before the accident, I asked Jolene to drive. We switched drivers and continued on the Interstate. Jolene approached an underpass, and we noticed the weather was getting worse. She slowed down, but the car traveling in the right hand lane didn’t. The driver then suddenly braked and hit the passenger side of our car shooting us across the medium like a cannon,” said Steve.
The next thing they knew they were on the Interstate on the opposite side of the medium, and an 18 wheeler was coming right at them.
“The truck was so close to us that we could read the words, ‘Peterbilt’ on the front of his truck, and I said, ‘Oh my God, Steve. We’re going to die,'” remembered Jolene adding, “The driver must have put the trailer brakes on and missed us by inches. He then just kept going.” And so did the driver who caused the accident in the first place.
Their car hit the concrete barricade, but for some reason, the airbags didn’t deploy. “He was knocked out, and I kept screaming, ‘Steven, Steven,'” said Jolene who miraculously had only minor injuries.
“Within three to four minutes, help had arrived. “They treated me like a trauma patient because I had been knocked out. I remember lying on the stretcher watching the lights on the ceiling at the hospital. I didn’t have any pain, and I wondered if I was dead,” said Steve.
Like Jolene his injuries were not life threatening, but that accident and the subsequent CAT scan led to-are you ready for this? A diagnosis of kidney cancer. And why does Steve to this day say, “I believe that the guy that hit us was an angel?” Stay tuned.
BOYCEVILLE, WI – Because of bad weather and a careless driver and airbags that didn’t deploy . . . because Steve was knocked unconscious, he was treated as a trauma patient and given the required CAT Scan . . . and that test detected a spot on his kidney . . . and because of all these things, the cancer beginning to grow in Steve’s body was caught and stopped in its tracks.
“If I ever saw that guy again, I don’t know if I would hit him or hug him,” said Steve referring to the driver whose carelessness sent him and his wife Jolene careening across the median barely missing an 18 wheeler before striking a concrete barricade. Their injuries were minor, but that January 2007 accident was, in Steve’s own words, “a miracle.”
“There’s a spot on your kidney,” the ER doctor told him after looking at the test results. He then added, “Most of the time these things are just a cyst, but I would get it checked out.”
“I knew it was cancer,” said Steve, “because of the way he told me.” And here’s something else. At this stage of this particular cancer, there are no . . . repeat that . . . no symptoms.
So, two months later, Steve underwent surgery. The diagnosis was renal cell carcinoma, a low grade, rare cancer; the tumor (not a cyst) was the size of a golf ball, and it was removed before it even thought about metastasizing.
For the next three years, Steve’s challenge was to live his life as he had lived it before his brush with cancer-struggling to control the Parkinson’s symptoms that were requiring a steady increase of the medicine Carbidopa/Levodopa. Pramipexole helped him better absorb the C/L while Comtan made the effects of C/L last longer. He went from taking one C/L tablet twice a day to taking 15-18 tablets a day.
“The medicines help, but you become addicted to these pills because you feel so rotten and so unsure of yourself without them,” explained Steve. The medicine provided “on time” relief, and without them Steve said that the pain, the slow movement, the shaking, and the rigidity would make his life intolerable, but there are side effects.
Still, those side effects, a condition defined in last week’s article as dyskinesia (uncontrolled tremors), are not the real issue for Steve. He describes the tremors as “not bad.” What is depressing, what does get him down is the sheer energy it takes to accomplish the most mundane jobs. “Everything is more difficult. I feel best when I get up in the morning. I take my meds at 6:00, and then I do as much as I can as fast as I can for the next few hours. People tease me about walking so fast, but I do that because I know my “off time” is coming.
And when that “off time” arrives . . . what is that like? “I use twice as much energy as anyone else does to do a simple task. Let’s say I am going to build a birdhouse. If I drop a tool, I just stop because it takes too much energy to bend down and pick it up,” said Steve. And so it goes for Parkinson’s patients whose day to day routines often consist of relentless exhaustion-the kind that can keep them in the recliner or on the sofa for hours-the kind that makes the thought of getting up, walking around or leaving the house almost unbearable.
That was Steve’s life, but then in November of 2010, things got a little more complicated.
Steve had just been diagnosed with diabetes, and he was also having significant sciatic nerve pain. “I knew this wasn’t normal. I was in terrible pain and needed crutches and eventually a walker to get around,” said Steve.
At Luther Hospital in Eau Claire, he learned the cause of his pain. “They told me I had a tumor on my L2 vertebrae. I was put into the fast lane for surgery because after having renal cell carcinoma (kidney cancer) my doctor was very aware, as was I that if it returns it will go to the lungs or bone, and there was an 85-90 percent chance the new tumor was cancerous. I told my doctor it was not cancer,” Steve said.
The doctor wasn’t convinced by Steve’s self-diagnosis. To his surprise (but not to Steve’s) it was not cancer but a degenerative mass. The doctor had it reviewed by the lab twice because he could not believe the initial results.
On December 22, 2010, following surgery, he and his family received the best possible Christmas present-no evidence of cancer. “I told my parents and my family I would be home for Christmas,” said Steve, and he was. Perhaps a bit battered and bruised from the surgery, perhaps exhausted from everything he had gone through . . . but there he was on Christmas Eve eating shrimp and meatballs with the people he loved most-his family.
And here’s another fact about this insidious disease-it’s a “gift” that just keeps on giving. “I had to have cataract surgery in both eyes. I had to have carpel tunnel surgery on both wrists. Just like after my diagnosis of Parkinson’s, my doctors told me, “You’re too young to have these problems,'” said Steve. Of course he was-who could argue the point? With these additional diagnoses, Steve had been dealt another bad hand.
But those who know Steve, those who love this man know this-he does not give up, he does not give in. He fights. “I’d walk, run, bike. I’d play basketball. I’d do anything to stay in shape and to lose weight. I even coached the elementary basketball teams in Boyceville. I was the coach for all of my daughters’ teams even after my diagnosis. His wife, Jolene, coaches the Boyceville High School Girls’ Basketball Team.
“Even though I am constantly tired, I have a “Get up and do it’ attitude,” explained Steve. And of course he is encouraged and supported and prayed for by Jolene and his three daughters and by his parents, his siblings, his pastor, his friends, his aunts, uncles and dozens of cousins. He is encouraged through every step, every stumble, every set back, and every bad day. They are there for him as they have always been and will always be.
BOYCEVILLE, WI – Unless you’ve lived it, it’s impossible to understand the effects of Parkinson’s Disease, not only on those who have it, but also on family members who watch and worry and wonder from the sidelines. Where will we be one year from now? Two years from now? It’s sobering.
By the fall of 2012, Steve Bird’s family was seeing a steady decline in his condition. “Overall things were becoming more about Steve. We had to make adjustments to fit into his world. He was becoming less social and not paying attention,” said his wife Jolene.
This was not a criticism of her husband-it was a fact.
“I know when I talk to people in public places, they think I’m not listening to them, but that’s not true,” said Steve. “It’s just that I’m anxious because I have to figure out how I’m going to get to the door, how I’m going to make it across a crowded room.”
And there were days when Steve’s justifiable anger got the best of him. “People might think I’m rude, but why can’t they just meet me where I am?” He also asked, “Why can’t I do what I want to do during my ‘on time.’ I don’t want to be vacuuming the living room; I want to be in my cabin in the woods.”
And then there were days when he wondered how much longer he would live, so he spent that time with his pastor, Brad Peterson of Trinity Lutheran in Boyceville. “I told him that I don’t blame God for this, and he reminded me that if I lived or if I died, things would be good either way. I really have a strong faith,” said Steve adding, “Parkinson’s and cancer have made me a better Christian; I have a different outlook on life, but if I could get rid of this disease today, I would.”
For Jolene, the fall of 2012 was a turning point. “His symptoms were progressing; he didn’t do well in crowds, normal day activities were becoming very difficult, and he stopped going to events that used to be enjoyable for him. Abbey and I looked at each other one day and agreed that his life must be just awful,” said Jolene.
“It was awful,” said Steve, “but at that point, I didn’t care anymore.”
It was time.
“I told Steve to ask his doctor about the possibility of Deep Brain Stimulation surgery,” said Jolene. He went to see Dr. Bower, a Movement Disorder Specialist at Luther Hospital in Eau Claire. “They ran Steve through some tests and thought he would be a good candidate for the surgery. The doctor then asked him if he would like to go to the Mayo Clinic in Rochester,” Jolene said.
In late March, Steve spent four days undergoing a series of tests in Rochester. He saw a neurologist and a speech pathologist on the first day. “He could tell how far the disease had progressed by listening to my voice,” Steve explained.
On the second day he was given a series of MRIs and a psychological evaluation to determine if there was early onset of dementia, which could have disqualified him. These tests also checked his level of frustration.
“On the third day they videotaped me on and off my medication, and on the fourth day I met with a psychiatrist who told me there was an increased risk of suicide in some patients who had undergone this surgery. This psychiatric test was scheduled to take three hours, but I convinced him in 90 minutes that I would be okay. He said he would recommend me, as had the other doctors, to the DBS Team at the Mayo Clinic.”
On Thursday, April 4, he got the phone call-he was a candidate for surgery! On June 3 at 8:00, Steve was in the operating room about to be operated on . . . fully awake.
“They put a head frame on my head to keep it steady, attached a transparent plastic localizer to the head frame and ran a MRI to locate the best target for placement of the Electrodes in my brain. After the MRI they gave me shots of Novocaine, which hurt, and then they were ready to start drilling though the skull,” said Steve.
He continued. “When they hit the membrane between the brain and the skull, that hurt a little bit, but the brain has no feeling, so there was no pain when they inserted the Leads which are about the size of uncooked spaghetti with four circuits on each Lead.
Steve has a Lead on each side of his brain because both sides of his body are affected by Parkinson’s. After the Leads were placed, another MRI was done to make sure the right areas had been targeted and the Leads had been placed in the right spot.
The absolute worst part of this six and a half hour surgery was being confined. “I kept my eyes shut the entire time; it was the worst experience of my entire life. I had been mentally prepared for all my other surgeries, but I wasn’t prepared for this,” said Steve adding, “I had volunteered to be part of a study which required an additional MRI and extended the time I was confined.”
At 3 p.m. his doctors met with Steve’s anxious family and told them they had good results while testing the Leads during surgery. At 4 p.m. Steve was brought to his room.
Jolene describes what happened next when she, along with Steve’s sister Tammy went into see him. “He had such a blank look on his face when we saw him that I thought he didn’t know us. I said, ‘Steve?’ and he said, ‘That was awful.'”
That night was rough. Surgery had taken a psychological toll.
BOYCEVILLE, WI – Jolene remembers what her husband Steve looked like on June 3 following Deep Brain Stimulation surgery. “He had such a blank look on his face. I thought, oh no . . . he doesn’t know us.” But he did. He knew Jolene and his sister Tammy standing next to her. He knew family members waiting for him in his room.
The surgery had caught Steve off guard; it was worse than he had ever dreamed it could be, but it was over. Amazingly, he was discharged the next day at 10 a.m.
Then there was a honeymoon period. “For three days I was in perfect health-just like before I got Parkinson’s. I had no symptoms and didn’t have to take any medicines,” said Steve. On the fourth day his symptoms started to return. The doctors had told him all these things would happen, and they did.
A week later, on June 10 he returned and had the generator (neurostimulator) inserted below his left shoulder. On June 18, they turned it on and programmed the neurostimulator. “I couldn’t take any pills that morning, and that was tough, but they need you at your worst to make you your best,” explained Steve.
“It took two and a half hours of adjustments, and at one point they turned it up so high that I felt a tingling in my arms and legs and began to feel light headed. It took a lot of trials to find what they felt was the best option for me. While programming to see what electrode to use and what level, they turned it up to 3.5, and I had an out of body experience,” said Steve. “Everything was crystal clear; the lights were brighter.”
“He looked like he was on drugs,” said Jolene laughing.
“Were you in pain,” I asked.
“Yah,” said Steve with a smile. “My ‘pain’ came from my wife and daughters who were laughing at me.”
The doctor quickly turned it back down.
The neurostimulator device (implanted in his chest) consists of a battery and related electronics which, when turned on, send mild electrical impulses to the brain through the Leads and electrodes in the brain.
Jolene explained the function of the neurostimulator device and the process the doctors use to achieve optimal results. “On June 18 when they first turned on the stimulator, they went through various settings on each side of the brain (each Lead in the brain has four electrodes on the end of them). They turned up the stimulator settings gradually to see when Steve got benefit from the stimulator with the Parkinson’s symptoms. The goal was to find the best electrode on each Lead that was going to be used (turned on).”
She continued, “Both sides of the brain do not have to have stimulation to the same electrode. Both sides of the brain do not have to have the same amount of electrical impulses sent to the electrode either. That is why they start off at a much lower setting. They placed the neurostimulator at 1.0 that day and gave him the option to turn it up to 1.4 over the next couple weeks. Every level is a body adjustment.”
“It was unbelievable that after only the first visit, his dyskinesia began to go away, the tremors lessened and he started taking less meds,” said Jolene.
On July 30 Steve had his next programming visit. While in the clinic they adjusted his programmer to 1.8 and sent him home with the option of increasing it to 2.2. When they increased the stimulation, once again, there were “good results.” Steve was told he could increase it over the next couple of weeks as needed.
“Both times Steve has adjusted the stimulator to the maximum amount allowed. He adjusts it based on the symptoms. He doesn’t move it up and down daily but has played with it to get the most benefit. Right now the stimulator is set at 2.2 for both sides, and Steve is getting good results with most Parkinson’s symptoms,” said Jolene adding, “When he returns on September 30 for another programming, they will once again adjust based on his symptoms. The goal is by Christmas to have optimal benefit from the neurostimulator. Yeah!!” she exclaimed.
Since June 18, Steve has been able to cut the amount of medication from 31 pills a day to 21, and he has had better results with Parkinson’s symptoms. The goal is to cut medications at least in half. “I have to be patient,” said Steve, “because it takes six months to see the optimal benefits. I have to learn to take it as it goes.”
On August 25, the day of this final interview, Steve walked four miles and jogged one half mile-jogging is something he has been unable to do for years.
“Truly I’m very, very hopeful, but I’d be lying to you if I told you I didn’t have doubts. I try not to get too fired up,” Steve said. He paused and added, “I want you to put this in the article. The doctors and nurses at the Mayo don’t do this because they want to be recognized as the best. They do it for their patients. They are wonderful,” he said.”They really care.”
“These interviews have been so therapeutic for me, and if the articles help anyone, then I’m so glad they were printed. This surgery for me has been a gift from God,” said Steve.
And one more thing he wants our readers to know. “I could never have done this; I could never have gone through all this without Jolene. That’s the truth.” In a letter he wrote to his entire family which he shared with me, he called Jolene, “the strongest person I know. I trust her completely.”
He also thanked his daughters and his siblings acknowledging the sacrifices they have made for him, and of course he mentions his parents, Bob and Lynda Bird.
“Mom and Dad, if I died and was able to come back to Earth for a second try, I would pick you as my parents all over again,” he wrote.
He ended the letter to his family with these words. “I don’t know how I can have all these people that care about me. People ask themselves, ‘Is there really a God?’ Well, I know there is because I felt the hands of God and all the rest of your hands carry me that last mile. For that I am forever thankful.”
Steve and Jolene