I was looking forward to my upcoming appointment. I was going to see a Movement Disorder Specialist for Parkinson’s Disease. My general neurologist had hit a road block in treating me. He knew about Parkinson’s disease as it relates to the average population, those 60 and older. Being 35 I was his only Young Onset patient. Parkinson’s is not only difficult to treat in the general population but it becomes even more complicated in those who are younger. We present knew, different or unforeseen challenges. Our progression can be different. Our symptoms present differently. Our course of treatment may vary. In a short period of time my symptoms began to change and vary. These symptoms brought my doctor into uncharted territory, and being the wonderful doctor that he is, he decided to refer me to a specialist. It is recommended that anyone with Parkinson’s have a movement disorder specialist as part of their “care team,” so this was a step in the right direction.
Between August 2016 and present I had gone from tremor and right sided stiffness to pain and cramping in both hands and feet, commonly referred to Dystonia (involuntary, painful muscle contractions). I presented intermittent leg drag, twitching and tremor of my face and thighs, random shocks of pain throughout my body, left sided twitching, random left-handed tremor, weakening grip strength, and weakness in my legs most notably my thighs….to name a few. More symptoms accumulated and my neurologist decided to call in the troops. I was going to need to go see the wizards of the movement disorder world.
I was nervous and excited for my appointment. I was nervous to see new doctors, but excited to hear what they would tell me. I imagined them telling me how great I was doing, after all my days now consisted of a 5:30am swim, noon Crossfit, plant based diet, hemp oil, and essential oil support. I was doing everything in my power to slow progression, help my body heal, decrease my fatigue and increase my energy. I wasn’t expecting a gold star but I was ready to be told what a model patient I was. That I was one of those rare patients that doesn’t sit around accepting their fate. I was taking the bull by the horns and becoming a warrior for my cause! This however was a figment of my imagination. Sometimes we don’t get a gold star, a pat on the back or an “at-a-boy.” Sometimes we get handed the truth. The truth hurts. The truth is painful. I went in feeling empowered, and left feeling helpless.
The appointment itself lasted 2 hours. Two hours of the first wizard questioning and testing, questioning and testing. “Stand still and try not to fall forward… Stand still and try not to fall backward…Close your eyes, count backwards from 100 by 3’s while holding one hand out in front of you and the other making circles in the air…Tap your left foot….and your right…” and on and on and on. I had been through most of this before but there was something different this time. This was more clinical. It was more cold. It was more unfeeling. I was not with my neurologist who cares about Kelly the person. I was with a wizard to cares about a disease, who finds pieces of the puzzle and fits them together, who is a master at diagnosing and detecting and discerning a disease that is difficult to detect, diagnose and treat. After an hour with the first wizard he made a surprising announcement, he would now need to discuss my case with his boss…the head of the department…the wizard behind the curtain.
Fifteen minutes later the first wizard returned with his boss. Both were serious. Both were unfeeling. Both were staring at me like a lab rat. Someone to “figure out.” A puzzle to take apart and put back together. The all-seeing wizard looked me up and down and proceeded to put me through another battery of questions and physical tests. In my opinion, one can only walk back and forth down a hallway so many times till one just feels like they are toying with you. It’s an unsettling feeling, knowing that every movement your body makes is being scrutinized. Being under the microscope eventually awakened my sleeping symptoms of tremor and jerky movements. As I shook, four eyes were on me…scanning.
My dad being my doctor appointment buddy since the beginning had had enough of the questioning and decided to take a turn at asking the questions. I recall three distinct times when my dad asked, “so from what you can see is there any other possibility besides Parkinson’s.” Because once again we, more specifically I, found myself open to hope. Hope that there was a chance this was all in my head, and I would wake up from this reality only to find that it was all a mistake, a miss-diagnosis, and I would be sent on my merry way. Each time it was the same answer “all the signs, symptoms, tests and history point to Parkinson’s.” I think doctors like to toy with us. Don’t give an absolute diagnosis…let them hang a little longer…let them sweat it out. Due to my negative DatScan (a brain scan that looks at the level of dopamine in the brain, mine showing normal levels of dopamine) there was still a small chance it could be something else. But as stated two previous times, all the evidence suggested Parkinson’s.
Not only was I still left in limbo of being told I most likely had something without a definitive diagnosis, I was also told some hard truths which in my opinion can be left to interpretation. I wanted to reaffirm that everything I was doing was helping, I was slowing my progression. My daily blood, sweat and tears were making a difference. Again, my sphere of hope was shrinking. No, nothing you are doing will slow your progression. You might feel better about yourself. You might be mentally stronger, and with a disease in which the primary non-motor symptom is depression it can help you there. But speaking for the disease…one cannot stop the degeneration of ones’ brain, therefore, no, you cannot slow the progression of a progressive neuro-degenerative disease. Slowly the light in my face dimmed, my posture sank into the seat. I felt helpless. My dad could sense my defeat.
According to wizard number one, I must remember that this is a “slow moving” disease, so I potentially have up to 20 or 30 years till I’m in a wheelchair, so that’s good news! Another blow. I have of course read about this disease from three different books. I have googled the hell out of the internet, and yet, to hear the reality from the lips of a wizard caused defeat to set in a little more. My parents are active 63-year-old grandparents. My dad’s a runner and competes in triathlons and ultra-marathons. My mom does Crossfit. Before I know it, I will blink and I will be 63, and I am being told it’s ok, it’s a slow-moving disease.
The finale of this two-hour visit was being told I needed to return. The medication I am on is the top-shelf medication. It’s the hard-core med of hard-core meds for Parkinson’s, carbidopa-levodopa. It’s the one everyone eventually gets on. It works the best, and unfortunately has some of the worst side effects which can be as debilitating as the disease itself. I was on it because it worked. I was on it because I was told that there were studies that showed young onset persons slowing their progression while being on it. However, the earlier you begin taking it the higher likelihood of developing dyskinesia’s (uncontrollable movements of the body). The wizards wanted me to return but this time I would return off my medication. They want to see me at my worst. They want to be able to determine if I am bad enough to warrant the use of carbidopa/levodopa or if I could hold out for as long as possible and take another medication that though less effective and less powerful will keep my symptoms somewhat in check.
The idea of being off the very thing that lessens my unbearable symptoms for 27 hours is terrifying to me. But it’s also intriguing. How bad am I? How far have I come in one year? Am I as bad or better than I think I am? There are risks to suddenly stopping this medication, including heart attack and stroke. Being off it seems like a game the wizards are willing to play. I suppose I’ll play, what choice do I have?
I went into this appointment with hope, pride and empowerment over my situation. I left feeling lost, angry and defeated. That evening my body crashed. I became flu-like, fatigued, and depressed. Stress has a way to mess with the person with Parkinson’s in a way that leaves you empty and motionless. The next morning my alarm went off at 4:50am. Thoughts flooded my mind. I don’t need to swim, it’s not doing anything for me anyway. But I was already up so I went. I swan for 40 minutes straight and still felt lost. I went to Crossfit at noon and completed 100 strict push-ups, and still I felt defeated. I came home and had a break down. Unfortunately, my three children took the brunt of my outburst. My husband, always knowing me better than I know myself, sent me away. For 2 hours, I drank coffee and read a book at the local Starbucks. I regrouped and came home.
I reminded myself that no one…no one can tell me what I can and cannot do. If I feel I am going to slow my progression by working my ass off then I am going to do just that. I may not actually be re-growing my brain but I am making myself stronger and healthier to weather this storm and take the blows as they come. A wheelchair and countless other struggles may very well be in the cards, but right now it isn’t. I’m mobile in every sense of the word and I’m not stopping any time soon. I don’t need a pat on the back and empathy from a wizard. Their job is to work their magic and keep me moving. I have all the support I could dream of from my family and friends, and I know that for better or worse they aren’t going anywhere. Having my family, and doing what I do daily makes me feel a level of pride that I have never felt before. It makes me feel alive. I’m not going to give up these feelings any time soon.
So… ok wizards, you do your job and I’ll do mine. And maybe, just maybe, I’ll shock the hell out of them and prove them wrong. Maybe I’ll show them how a progressive disease can be taken as an opportunity to better ones’ self and possibly change the course of ones’ destiny. What do I have to lose?