I was diagnosed with Early Onset Parkinson’s Disease in October 2012, but I’d had a tremor since about April of that year.
I started medication in September of 2018, which was a little late, if I’m being honest. I had travelled home to Ireland to celebrate our tenth wedding anniversary and show off Connor, who was around eight months old, and my family said I was a lot more shaky than they expected. That was on me. I probably should have started medication six months earlier, but…well… I didn’t want to.
I started at a very low dose of one pill three times a day, increased to four pills over a day after a few months, and then added a single slow release pill for nighttime to help me sleep. I stayed on that dose for a long time, but in the last few months, I noticed I was fighting my tremor more and more, and getting tired and sore more often.
I decided to meet with my neurologist a few months ahead of my scheduled check up, and we both agreed that I should increase my dosage. At first, I just added another half pill to each dose, and scheduled another visit in six weeks to see how things are going.
At that check in, we agreed that the effect of the half pill was insufficient, and I increased my dosage another half pill. This effectively doubled my daytime dosage from a month and a half previously.
That evening, I decided I needed to get out of the house and away from the kids for a walk. I wouldn’t say I was upset or depressed or angry. Just… glum? I just needed to get out and go for a walk and clear my head.
I fired up Pokémon Go on my phone to distract me while I walked and noticed that a gym nearby had some old Pokémon that were due to be knocked out, so I sat on a bench across the street from it and battled the digital monsters.
I was just finished and had installed my own pocket monster when a senior lady stopped and asked if she could ask me a question. I figured it was about my tremor, because it was showing a bit at the time. Most people notice my tremor, but very few ask about it, instead nervously trying not to be too obvious as they watch my arm.
I recognized this lady from the neighbourhood, though only in passing, so I assumed she’d noticed it before. I invited her to join me on the bench and she sat beside me.
“I’m sorry to disturb you, but are you the young man that lives on [Street Name] that has Parkinson’s?”
“Yes. That’s me.”
“I’m a friend of [Neighbour Friend]. He told me about you. You see, I just got diagnosed with Parkinson’s myself earlier this month.”
Ah. That was not where I was expecting this conversation to go.
We spent some time discussing the condition. She hadn’t even had a second meeting with her neurologist. She hadn’t had any discussion on medication, so she had lots of questions about that.
For her, the future was uncertain. It was all new to her, and more than a bit scary. After talking for a while, she was amazed at my positive attitude. I talked about how, according to my neurologist, a tremor like mine could have been either Parkinson’s, a stroke, or a tumour, so, given the options, I pretty much lucked out! I joked about how I felt like I’d won the lottery with my diagnosis, as of the 10% of the population that will get Parkinson’s at some point in their life, less that 5% of those will get it before they turn 50. I’m a fraction of a fraction!
After we had talked for a while, we parted ways, but not before introducing ourselves to each other, and I told her that she’s welcome to say hi any time she sees me out and about. I’d love to talk to her more, hear about how things are going, and answer any new questions she has.
So much went in to us meeting at that exact time on that exact day. I had to chose that time to go for a walk. I had to stop to play Pokémon at that moment. She had to be walking home at that exact time, and then think to stop to ask a question that must have been a little stressful for her to bring up.
Because destiny brought us together at that exact moment, I was able to talk to her when we both needed it. She appreciated my positivity and openess and getting some answers to her questions. I felt a weight lift off me, and cleared my head. It was nice to talk to my new friend and share some positivity.
I really am generally quite positive on this subject, and while I find it difficult to bring up in conversation (“How is your cup of tea? By the way, I have Parksinson’s.” “Oh! You like Back to the Future too? Actually, I have…”), I’m happy to discuss it when it does come up. It’s just tough to bring up.
Hint, hint…