Young Onset Parkinson’s Disease became a personal and family challenge in 2008. It’s like coming home from a great day and finding an unwelcome stranger in your home except you can’t throw him out…no matter how much he repulses you. So you embrace him, try to control him and make him part of your life as much as possible. Just when you think you know him and what to expect he changes it up and tries to pull everything apart. So…we just pull him closer and try so hard to understand. My family has had even less choice in the matter. Allison said “I do” to my Parkinson’s long before she said it to me. Our four year old has grown up waking Dad from sleep attacks and the older kids know exactly how to “break” a freeze. We all have learned patience more than most. Will use this section to share the challenges and celebrations of this corner of our life as we hope, pray and work towards a cure. Until then….BRING it ON! PD doesn’t stand a chance against US!
How it began…
It was probably in the summer of 2007 when I first began feeling oUT oF BaLAnCe It began as an every so subtle annoyance. Maybe even something I was just imagining.
Remember being at a pool with a group of friends and standing on the eDgE watching while others played in the water? Then another friend would proudly sneak up behind you and push you in the water. Freeze the memory at the INstanT hE PushES yoU. Before your mind catches up to what is actually happening. Recall the feeling that starts in your stomach and kind of radiates to your chest.
The slight but ever so real feeling…even internal emotion of ” Holy shit I’m falling and nothing is going to stop me!”. Not the thought of it but the physical feeling. The subtle annoyance of feeling as if I was going to FALL. At first I think I misunderstood it as dizziness. But I would later be sure to correct anyone if they responded with that when I would try and describe it. It was just the physical response of being suddenly OuT OF bALANce.
Easy to dismiss as almost anything when it only happened randomly once a week and sometimes two.
Looking back i know it was colder when it started increasing in frequency because I started to blame it on a possible inner ear infection stemming from the cold I was fighting. Probably January or February of 2008. Probably on the eDGe oF tHe pOOL two to three times a week. Probably should get it checked, Eric.
But being recently divorced and living alone, with the exception of kid weekends, it was easy to not tell anyone and in turn not be nagged (encouraged) to go to the doctor. Honestly, it had probably been way over three years since I had even seen a doctor for anything. By August the incidents were happening at least once a day. As a funeral director owning my own business by day and stage directing at night the busy-ness of life was a great drug to mask it.
After all…I never really FELL or anything.
On August 20, 2008, the day after my 38th birthday, I closed the back door to the hearse after the pall bearers had loaded the casket to go to the cemetery. I turned like I always do to dismiss the pall bearers. They turned and walked away and I stood FrOzEN to the ground. It was a hot day but I knew the church parking lot asphalt wasn’t hot enough to cement me to the ground. What was merely seconds seemed like eternity to me as I looked down at my feet as if to order them to move.
And then the bozo pushed me into the pool and my feet were free but my knees met the black top.
Shit. What the hell. Using the hearse bumper as support I stood up and continued on to the cemetery. You would think I would have freaked myself into the doctor that afternoon.
But no. It wasn’t until September that I finally called and made an appointment. Not even having a doctor to call my own I walked into the urgent care clinic connected to the local hospital. Time to get those antibiotics and feel the ear infection gone. So aggressive with my own health care! A lot of urgent care doctors would have done just that, but God seems to give us who and what we need and this doctor took an incredible amount of time even leaving the exam room several times to make a couple of consultation phone calls. At one point he observed me walking down and back the hallway which confused and annoyed me mildly. “Do you realize your right arm doesn’t swing when you walk?” Hell, I didn’t even realize arms moved that much when we walked. MUCH more aware now! But long story short is I left there that day with no penicillin and instead a referral to a neurologist. He really wouldn’t tell me why but he did mention a list of possibilities to rule out including Parkinson’s Disease. Whatever. I took the referral slip and left the office. Just weeks later I would leave a neurology office with the diagnosis.