I am participating in the Moving Day Buffalo Walk, benefiting the National Parkinson Foundation (NPF) Western New York Chapter on September 7th, 2014. I will be moving in honor of my father, Michael Joseph Weber, Jr., who has struggled with Parkinson's since the age of 32.
The event will take place at Coca-Cola Field and will be a family-friendly event for all ages and abilities. We will walk to honor those present and past who struggle or have struggled with the disease while celebrating the importance of movement in our lives.
Please consider being a part of my team or sponsoring me, and I encourage you to get your friends, family and/or coworkers involved.
Why Get Involved
When anyone gets involved with a charity they want to know stories from within. While there are many in the NPF Western New York Chapter, my father's story inspires me daily. When I feel down, I often find myself thinking of my father's perseverance through his struggle with Parkinsons and other health ailments.
First, if you do not know what Parkinson's Disease (PD) is, I will explain. PD is a degenerative disorder of the central nervous system that causes a gradual loss of muscle control. The motor symptoms of Parkinson's disease result from the death of dopamine-generating cells in a region of the midbrain (substantia nigra); the cause of this cell death is unknown. Distinctive signs of the disease include tremors, stiffness, slowed body movements and poor balance. In the later stages of the disease, thinking and behavioral problems may arise, with dementia commonly occurring - whereas depression is the most common psychiatric symptom. Parkinson's was originally called a "shaking palsy," but not everyone with Parkinson's has a tremor (in the early stages) and those who do, the symptoms go far beyond the tremor.
Most individuals who develop PD are 60 years of age or older. My father is in the 5 to 10 percent of people with Parkinson's who had "early-onset" of the disease, beginning when he was only 32. The first symptom my father recalls was when he noticed that his big toe on his left foot was tremoring. This progressed up his left leg. Then, his calf started to twitch, followed by his thumb, which eventually moved to his right foot and right arm - to the point where he had trouble writing. His first visits to the doctor left him with a "mild cerebral palsy" diagnosis. Later, Dr. Sammy out of Mercy hospital diagnosed him with Parkinson's Disease.
My father's initial reaction was devastated and he went to many lengths to "cover up" the disease out of embarrassment. He shared the diagnosis with my mother and his parents. They elected not to tell my brother or me. Also, many friends were left in the dark. The first memory I have of recognizing the disease was when I was sitting on my father's lap at my brother's birthday celebration. My brother, Justin, was probably turning 8 or 9. My father's leg kept shaking under me and I said to him "Dad, stop shaking your leg." His response to me was a sullen look (realizing that I had noticed) and an "I can't". Covering up his diagnosis as the disease progressed wasn't easy. He would do things like move around when he spoke to others, so no one would think his movement was out of the ordinary, take the proper medication for meetings or longer visits with others, and not go to certain things if he thought he'd be exposed.
My father was a volunteer firefighter at Brighton Fire Company, as well as a businessman who worked at CB Concrete. Serving as a firefighter was one of my father's favorite past times. It gave him a sense of pride and he knew he was giving back to his community and helping others. Although, after his diagnosis, he knew this extremely physical and demanding service as a volunteer firefighter would have to come to an end. This was a sad goodbye. I remember my father being chief and bringing the fire truck home for Justin and I to sit in. I remember him being interviewed on TV at fires in the area. I remember my mother and him going to several events, installations and company trips. Not only that, but his friends - most of them came from the fire hall and going from seeing them every week to not that often contributed to the depression that comes along with Parkinson's. At 38, he gave up firefighting. His disease was now known by his fellow firefighters. He held on to his work at CB, but came to the point where he had to tell his boss, Wade and Randy, what was going on. Wade and Randy were understanding and supportive. As time passed, while Wade and Randy allowed my father all he needed to accommodate his disease, they still had a business to run and my father was getting more debilitated by the disease daily. My father knew this at the time and was going to have to make a decision on when to say goodbye to that part of his life, his work at CB. A couple years later, CB was in the process of a merger with two other companies to create United Materials. When this happened, my father's bosses and work environment changed dramatically. Uncomfortable coping with his disease in the new environment, he made his decision. At 49, he left CB Concrete/United Materials.
Up to this point, my father had been taking several medications since he was first diagnosed to help him with the PD symptoms. Carbidopa/levodopa (Sinemet) was used heavily in his treatment. Levodopa is converted to dopamine in both the peripheral circulation and in the central nervous system after it crosses the blood brain barrier. This can improve PD symptoms, but often causes nausea and/or vomiting. For this reason levodopa is usually administered in combination with carbidopa, which is very polar and cannot cross the blood brain barrier, however prevents peripheral conversion of levodopa to dopamine and thereby reduces the unwanted peripheral side effects of levodopa. My father also took Trihexyphenidyl, which controls PD symptoms (rigidity, tremors, etc.). Clonopin was used for the anxiety brought on by having and coping with PD. Also, amitriptyline was used to treat his depression. At one point my father was administering himself injections to help with muscle stiffness brought on by PD.
By 2006, at age 54 (still earlier than the average age of PD diagnosis), my father's life had diminished to watching television. My father's neurologist, Dr. Trinidad, suggested Deep Brain Stimulation (DBS). This is a surgical treatment involving the implantation of a medical device called a brain pacemaker which sends electrical impulses to specific parts of the brain. DBS has provided therapeutic benefits for otherwise treatment-resistant movement and affective disorders such as PD. After two years of research and desperate to change his quality of life, my father made the decision to get the procedure.
It was 2008 now. At 5 AM, Justin and I accommodated our father to Buffalo General where he would get the first of three DBS surgeries. The deep brain stimulation system that was being implanted consisted of three parts: the implanted pulse generator, the lead and the extension. The implanted pulse generator is a battery-powered neurostimulator encased in titanium, which sends electrical pulses to the brain to interfere with neural activity at the target site. The lead is a coiled wire insulation in polyurethane with four platinum iridium electrodes and is placed in one of three areas of the brain. The lead in connected to the implanted pulse generator by the extension, an insulated wire that runs from the head, down the side of the neck, behind the ear to the implanted pulse generator, which is placed subcutaneously below the clavicle. The implanted pulse generator is able to be calibrated by a neurologist, nurse or trained technician to optimize suppression and control side effects. On this day, my father was having the right side of his brain worked on. He would be awake for the entire 8 hour surgery. They took him to get his "crown" on, which is a halo that goes around the top of his head and it gets attached to the operating table during surgery, to prevent movement. Justin and I were able to see him after that. We hugged him and told him he'd be alright and we'll see him after surgery. My father was wheeled to pre-op, then taken to the operating room. Under local anesthesia, a hole about 14 mm in diameter was drilled in his skull and the electrode was inserted, with feedback from my father during surgery - for optimal placement. This surgery was being performed on the right side of his brain, but controlled symptoms on the left side of his body. It would be vise versa with the left side being operated on. I asked my father what his thoughts and feeling were going into the first surgery - he said he prayed to God it was going to work. The surgery went well and recovery was within a few days.
Two weeks later, he had the same process and procedure happen for the left side of his brain. He more worried about this surgery because the left side of your brain controls things such as language, logic, comprehension, etc. After going through all the same motions as before, he was out of surgery and into a speedy recovery. The surgery had again, went well.
Two weeks after the second surgery, he was back at Buffalo General being put under general anesthesia for the final surgery, which would include placement of the implanted pulse generator inside his chest. This one needed a longer recovery time because he was put under. Also, the chest area was a difficult spot to not “pull on” by doing daily activities such as showering, brushing teeth, cooking, etc. But after all was said and done - he healed with no infection.
Upon completion my father had an appointment with Dr. Trinidad for the stimulators to be turned on. He described his reaction to them being turned on as "disbelief". He was barely moving. His debilitating symptoms weren't affecting him (as much). He was overwhelmed with the thought that his quality of life would surely improve. And it did.
DBS does not stop the progression of PD. It simply helps with the associated symptoms. Due to the PD still progressing, the settings on the implanted pulse generator need to be adjusted by Dr. Trinidad every 6 months. My father might need a stronger setting if his left side is getting worse and vise versa. His medication usage has gone down grossly, now only taking one Sinemet at bed to help him sleep.
My father will need battery replacements surgeries every 3 to 6 years. If his disease requires even stronger settings down the road, he may require replacement surgery in less than 3 years. He has already had 3 battery replacement surgeries, with the most recent taking place in May 2014.
DBS is not a cure or fix to PD, but has improved my father's quality of life. Struggles still include depression, any sort of traveling, quick movement, balance, speech (which was minorly affected by his DBS surgery) and many more.
I should also mention that a disease like PD is extremely costly. People can spend thousands monthly on medication that will always need refills. If one opts to get the DBS surgery costs skyrocket to tens of thousands. Add in battery replacement surgeries and doctor appointments and you can be left with virtually nothing extra.
In regards to Moving Day, I asked my father if he exercises and he said he rides his bike, but has difficulty with any sort of stamina or longevity, that exercising for longer than 5 minutes gets him exhausted. Well Dad, we will move for you!
After everything my father has been through, he is currently happy with his quality of life (in regards to the PD) after having the DBS surgery. Although, nothing could compare to stopping the progression of the disease. My father and I share the same hope for the future - to find a cure for Parkinson’s Disease.
The National Parkinson Foundation (NPF) continues to bring help and hope to the estimated one million people in the United States, four to six million worldwide, who are living with Parkinson’s disease. NPF is the only organization with a singular focus on improving the quality of care in Parkinson’s disease. NPF programs reach more than one million people a year through its network of 39 chapters, 43 Centers of Excellence and 900 support groups. Since 1982, NPF has funded more than $172 million in care, research and support services.
Thank you for reading my father's story and helping me reach my fundraising goal to support the vital work of the National Parkinson Foundation.