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I could feel Parkinson’s disease creeping up on me, so when I finally summoned up the courage to have a colleague assess me and make the diagnosis, it was of no surprise; in fact, it was almost a relief.
In my mid-30s, I had taken up long-distance running, mainly to shed the weight I’d stacked on during training and fellowship years. About 10 years later, I developed a gait disturbance, manifesting as an exercise-induced dystonia in my leg. Initially, it appeared only after running a significant distance, but gradually it became more problematic, eventually leading me to stop participating in competitive events. My leg would spasm, twist and generally tighten up. I knew it was dystonia but told others it was just cramp or a ‘hip problem’; that was easier than explaining what this could become.1 I was otherwise fine and made a concerted effort to keep fit and to continue exercise as best I could. I also abandoned plans to reduce my caffeine intake given the possibility of this being neuroprotective in Parkinson’s disease. Sadly, my sense of olfaction became impaired, so the great pleasure of the aroma of coffee was lost.
Within a few years though, other symptoms emerged, including a tremor of my right hand and leg. The first time it caused a problem was at a national conference when I stood to ask a question, and with the nervousness my hand and leg trembled. I don’t think it was visible to others, but I sat quickly, shocked to realise that symptoms were making an impact.
Gradually and pervasively, more tasks became difficult. My handwriting was clearly shrinking and at work that was causing problems. The striking issue though, was bradykinesia; when demonstrating rapid alternating movements and finger tapping to patients, it was clear that my dominant hand was inferior, and seemingly becoming slower each month. It became obvious to me that some of my Parkinson’s patients were performing better than me. What really started to bother me was the impact on my ability to play golf. Generating club head speed was difficult, again related to bradykinesia. Simply walking the course was becoming a challenge, and getting a tee out of my pocket and placing the ball on it was becoming difficult.
So it was clear that it was time to get onto treatment and that I should have a proper assessment and diagnosis. I spent some time thinking about whom I should consult. I chose a respected colleague who worked in another hospital on the other side of the city. I obtained an MR scan of my brain before this and was struck by how normal it looked. I remember staring at the images, frustrated that the structure looked so normal, but the function was not.
My colleague was kind, sensitive and caring, and agreed completely with the diagnosis. With my nervousness, the tremor was there again, and he skillfully demonstrated some cogwheeling of my right arm, and the bradykinesia was there for us all to see. Straight on to l-dopa was the plan; no fiddling around with a dopamine agonist.
I filled the script for Madopar the next day and took the first tablet late that afternoon. I remember tapping my right hand and fingers to test for a response; 45 min after the dose, I could feel it working. I was almost shocked to feel this. For some reason, my expectations were low, so I felt encouraged. Over the next few days, I started to take it regularly. What I wasn’t prepared for was the nausea. The worst part was the worry that this might continue. Thankfully, with time this passed and I’ve continued to have an excellent symptomic response.
Shortly after the confirmation of diagnosis and start of treatment, I revealed the diagnosis to my colleagues. In a way, there was a sense of relief with ‘coming out’; I hadn’t realised how much energy I was expending hiding my symptoms. I was also tired of misleading friends and colleagues with my story about a bad hip being the cause of my gait issues; it had just seemed easier at the time. Some people reacted with strong emotion, which was quite uncomfortable and made me cautious about timing future disclosures. I also revealed the diagnosis to selected patients; some of whom had already astutely suspected something was wrong with me.
I had to deal with a range of logistical issues that come with many neurological diagnoses. The mandatory driving reporting, insurance issues and my medical registration. All of these needed documents and had stressful elements. I developed a new-found appreciation of how important the clinician’s prompt attention to these things is.
My subspecialty in neurology is stroke, but I’ve always done general neurology as well, and have a steady stream of Parkinson’s patients. I now feel much more confident with the early diagnosis and management, and have a much greater insight into the condition. I have shared my own experience with several new patients with Parkinson’s disease, and this has been extremely powerful and positive. The experience has deepened and enriched my understanding of the doctor–patient relationship, and I hope it has helped me to become a better neurologist.
Funding The author has not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed by Andrew Lees, London, UK.
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