Bruce Dunwiddie

May 2003

As a child, I grew up in a small northern Indiana town, and I was very fortunate. My older brother and I (of course I am the perfect child, can’t say that about him) were loved very much by both of our parents. We didn’t have any money, and wanted for nothing. Fortunately, our parents were very involved in our lives and they taught us to be good people. My father had a gruff, stern, unemotional exterior and I was scared to death of him. To me, he was as big as a barn and mad as a bull, but as it turned out he was a soft hearted teddy bear and only as big as a garage. As we grew up, my father would tell us stories about his travels during the depression and before he met my mother. Some of his experiences he would never tell about . . . like the time when he was in Alaska playing cards and a guy got caught cheating and got shot or who shot him!! Or how he became a cook in the food lines of California. My father had many, many memories and a story for each one every one of them. I remember when my brother (the bad one) and I (the perfect one) had gotten into trouble. My mother couldn’t understand why my father wasn’t more upset with us. He just said, “If they only get caught at half of what I did, then they’re pretty good kids”, of course that didn’t sit well with my mother, God rest her soul. My mother, as the bible says “sitteth at the right hand of God. I have never meet a person whom cared so much about others, had more faith in God or tried harder to do the right thing. She was wonderful person who tried and succeeded at setting a good example for her children. That foundation turned out to be vital in handling the numerous crisis I have dealt with in my journey through life, I had no clue what Parkinson’s Disease was or what an impact it would have on my life for so many years. That was about to change.

My odyssey began with PD three years before I was diagnosed. It began as a tremor in my left hand when I was 39. At that age, I was infallible. I played on 2 softball teams, golfed regularly and had a very active life. I had never been seriously ill other than having the flu every couple of years. Still have all of my body parts the only thing I’ve lost is my hair and I’ve set foot in a hospital except for a visit or two. The neurologist told me he had ruled out everything else and the only thing left was Parkinson’s Disease. Thus started my journey. The only thing I knew about PD was that it is an old man’s disease and you tend to walk funny and shake a lot. Well, since I was 39 and had a very busy life, there was no way this was gonna happen to me. I wasn’t an old man and had a long way to go at that and not only can I walk great I can run like a mad man so walking is not a problem for me, obviously this disease didn’t apply to me. WRONG!! I am still not going to get old. . . but boy was I in for an alarming eye opener.

Fortunately for me, someplace in my first 39 years I found and developed a positive attitude. For years I have professed that your attitude toward life determines what the outcome of your life will be. Observe for yourself . . . look around, look at those whom are always grumbling and feel the world is against them, life owes them and everything is always someone else’s fault. They should try looking in the mirror for the source of their problems. When you start liking the person in the mirror it’s surprising how things will start to get better. If you don’t like the person in the mirror how can you expect anyone else to? I firmly believe that outlook on life and my faith in God are the only way I have kept my sanity the last 10 years.. Sometimes it’s hard see anything positive about crawling into bed after being frozen for a couple hours and wondering when your body will stop vibrating so that one could finally fall asleep for a few hours just to wake up and do it all over again.

PD affects us all differently. In my case, I have gone from a few pills a couple times per day to taking in excess of 30 per day. Having a 30 to 90 minute downtime every 4 to5 hours and having full body motion when I’m not crashed, as I affectionately put it. This is when I took medusa!! Having this unrelenting disease is obviously not at all positive. The thing that bothers me the most is what it does to those around us and the ignorant, inconsiderate, stupid, idiotic people whom stare (now you know how I feel about them). We are self conscious enough without people looking at us like we are a circus side show. In many cases those around us feel almost as badly as we do. They want to help us walk and make us quit shaking, or even try to do something to make us better but there is nothing they can do. It must be as painful for them to helplessly stand by and not be able to help. I know it is painful for me to watch them knowing I put them in that situation, and that excludes kids because they don’t know any better. I remember being at my mother’s house one Sunday afternoon and I was having a “bad day” and couldn’t quit moving. A little girl whom was about five at the time was also there with her uncle. After watching me shake for a few minutes, she looked at me with those big blue eyes and said “Why are you shivering?” I chuckled because I thought it was funny but her uncle wanted to crawl under the carpet. Kids say the strangest things.

Things have certainly changed from those days of 2 or 3 pills. Unfortunately, PD isn’t like the flu, it doesn’t go away in a few days. And regardless of what you do, you can count on one thing, . . . it will get worse. I am thoroughly convinced that a lot of the deterioration of the disease is how you handle it. I guarantee you will go downhill, but if you sit at home in your recliner and say I can’t do this and I can’t do that, your right and you will go down hill very quickly. But, if you are determined to fight to your very last breath and not allow it to take over any more of your life than necessary, and most of all, not let it take over your attitude and mind, you will be much stronger for a long time.

Even with all the changes in my life, I consider myself a very fortunate person. Partially because I understand I am the first person from a Veteran’s hospital in the State of Indiana to have “deep brain” surgery. Another gentleman was offered the surgery but declined. There’s no way I wouldn’t turn down the opportunity. I counted the days until they put my head in a halo. I was so excited I thought the surgical team might have to hold me down to keep me from jumping for joy. I’m also thankful because I didn’t have to endure a lot of pain. My brother (the bad one) died twice in the same day. He had to be shocked both times to bring him back. I’d much rather walk funny and have a tremor than to go through that experience. My brother is still here and doing well. Or I could have been like my mother and live with a heart condition for 40 years after being a cancer survivor. Her life was totally dominated by medication, diet, hospital stays and surgery. After all of that, PD isn’t so bad.

In my case, hope became reality. Last September I was fortunate enough to be accepted into a research program through the San Francisco Veterans Hospital. After three days of intensive testing, my name was submitted into a computer to determine if I would be given immediate surgery or be placed on a best medication program, which meant six more months of evaluation and medication changes. I was not selected for immediate surgery, which meant someone else was worse off than me (could you imagine that). When I received this news I was depressed for several days. As it turns out, it really was a blessing in disguise. During that six months, the residents of my small town adopted me. A local television station did a story about me, my neighbors organized a benefit chili supper and people donated money to help defray the cost of surgery. It was overwhelming.

As the magical day drew closer, I began to get excited and apprehensive at the same time. I kept the apprehension to myself. There were tons of people praying for me and encouraging me at the same time. The last thing I wanted to worry them, but what if something went wrong? After all, I was having brain surgery. March 3rd finally arrived, my daughter and I left on our journey to San Francisco. Most of the stress of the trip was removed since I didn’t have to worry about walking through airports. The airlines met me at the gate and took us to our next plane. The following days were filled with tests and they even tested me for things I didn’t even know I could be tested for! The day before surgery the staff explained every detail about surgery and what would happen. Initially I expected the worst part would be the brace that would be screwed into my skull. The pictures of the previous patients looked like “Hannibul Lecter” a pretty scary sigh. At about 6:15 a.m. the next day a nurse appeared to take me for the halo installation and an MRI, which was the beginning of a 12 hour day. I couldn’t believe it – after 18 years this Big Day was finally here. All I could think about was that dreaded halo. I kept telling myself, it’s gonna be ok, it’s gonna be ok. God will see me through this and so he did. The halo was not nearly as bad as I anticipated.

Once you have completed the MRI you are taken to the operating room where the incision is made on your skull and the tedious task of locating the right spot to place the electrodes begins. “DBS” stand for Deep Brain Stimulation, it is the most recent surgical technique used to treat Parkinson’s Disease. Implants are placed in the brain, connected to a wire, which is connected to a battery, which is implanted in the patient’s chest. After the incision is completed, the surgical team wakes you up and starts fishing the probe through your brain. Boy, is that an experience. You hear every brain cell move. The do play CD’s to help you think about something else, but you still are awake and very aware of what’s going on.

On several occasions the surgeon asks questions and asks you to move a hand or something of that nature. It’s pretty wild to be laying on a surgical table with a neurosurgeon who has your life in his hands, and be awake and talking to them. After several hours, four or five I think, Dr. Phillip Starr, who as far as I’m concerned, is the best in the world, ask me to hold up my left hand. As I did I felt the normal tremor that had been present for years. All of a sudden, the tremor stopped and I began to cry. I’m not sure if it was joy or relief. That was the first time in eighteen years I could hold my hands still without the help of medication. It was so wonderful it’s hard to express. I still haven’t quit smiling. I pinch myself regularly to make sure it isn’t a dream.

Once the doctors were satisfied they had found the right location, they put me to sleep to connect the wires and implant the battery. The next thing I knew I was in recovery. Oh, what a headache. I felt like I had been ran over by a truck. That was the worst part of the whole procedure. I had a throbbing headache, I was nauseated, and regularly became sick. After about twenty-four hours of that I began to feel a little better. On the second day after surgery things improved quite a bit. By the Third day I felt super. That was the day the battery was to be turned on and programmed. The coordinator had to ask questions for about fifteen minutes to find something to correct or improve through programming. I had never felt better. Eventually she made some adjustments and told me to come back the next day just to check in and make sure everything was alright. Things were good enough that day that after the visit to the clinic office my daughter and I walked five or six blocks to a local art show, walked around the exhibits and back to the hospital. Admittedly I was tired, but I guess that was to be expected. I just had major brain surgery thirty-six hours before.

Even tired, I thought I was in heaven. For eighteen years I dealt with the uncertainty of my future, in recent times, over thirty pills a day, non-stop dyskinesias, which caused me to lose about twenty pounds, trouble walking, loosing five or six hours daily to freezing, stares of strangers, a walker on a daily basis and the fear of what would happen next.

All of those things are now a memory. The Dyskinesias is gone. My medication has decreased by about 60%. Instead of pills every two hours, it’s about every seven or eight hours between dosages. Surgery was two months ago, and I haven’t had on off period. When I do take meds, the only change I see is that if I’m tired my gait slows down for about fifteen minutes. I thank God daily for the miracle. I don’t know how long it will last, but everyday is a blessing and I enjoy every minute.

If you are given the opportunity to have DBS, do some research on the surgical team, the facility performing the procedure and their track record. I used this very website. My daughter went to a seminar given by a doctor from Cleveland and at the end of the seminar he allowed questions. One particular question he answered was “Whom, besides yourself, is considered an expert using this procedure?”. The answer was Dr. Phillip Starr from San Francisco. That was good enough for me. If a colleague recommends someone I think he probably know what he is talking about. Once you have selected the best option for you, GO FOR IT. I cannot begin to express the change in my life. It’s awesome and a gift. I am enjoying every minute of my new life. I live a relatively normal life. I am the owner of a small business that I started about 8 months ago and I completed my term as President of local Chamber of Commerce, I volunteer on the local festival steering committee and I am on the town council. I live alone, take care of my house, mow my own yard and sometimes the neighbors. I don’t do snow, let he who put it there, take it away!! I confess, part of the reason I maintain a busy lifestyle is that I am stubborn, independent, bullheaded and determined not to allow a wheelchair to be my primary transportation. I remember about a year ago my neurologist asked me if I could walk across the room. I said “sure, if you help me up”. He pulled me up and I took a deep breath, stumbled across the room and I stopped when I hit the wall. He immediately got a wheelchair and told me to sit down and not to do that again. I didn’t mean to alarm him, buy my meds weren’t working and I actually thought I did pretty well. I made it across the room and didn’t hit any thing and didn’t fall. In his defense, he has done more or me in the two years I’ve gone to see him than all of the previous doctors combined over my first sixteen years with PD. I will be the first to admit I have a lot of very kind friends and neighbors who pay close attention to what and how I’m doing. On occasion I’m forced to admit that I do have limits. Recently I missed a Chamber of Commerce meeting because I worked all the previous day and only slept about an hour and a half and went to an organizational meeting the night before. When my alarm went off at 4 a.m. so I could make the 6:30 a.m. meeting my body just wouldn’t move. In my heart of hearts, I firmly believe that if I quit doing the things I love because I have trouble walking or I didn’t feel well, or when my dyskinesias is very active – which is almost 100% of the time, I could be in far worse condition than I am. Isn’t taking about 30 pills a day, loosing 4 to 5 hours a day and having dyskinesias pretty bad? Yes, life would be more fun without the struggles of PD, but at least I had 18 or 19 hours a day , minus sleep time, which in my case is 4 to 6 hours a night. Compared to a former neighbor of mine who went from an active life and about 225 pounds to about 125 pounds during the year he battled the pain of a brain tumor before he lost his struggle.. . . . I’ll keep my problems. Or, how about the kid with MS who is confined to a wheelchair and will never know the pleasure of playing baseball with his buddies in the park. All things considered, Parkinson’s patients are blessed. Our life with PD may not be ideal or what we planned, but at least we have one and we have hope.

Thank you for your time and listening to my story.