Young onset Parkinson's - being a rarity in a rare disease

Parkinson’s disease normally affects people over the age of 60 (at this age the disease is called late-onset). About 1 in 20 Parkinson’s sufferers develop symptoms before they are 60 (in these cases the disease is characterised as early-onset). At the time of writing this, I am 34. I am a rarity in a rare disease. I like to think I’m special!

A sign of how unusual it is at my age to be diagnosed is what happened the day I was finally told I had Parkinson’s. I attended hospital and was ushered into a small conference room. 15 chairs, occupied by Consultants and Junior Doctors, were arranged around the seat I duly occupied. As I looked around at the various Doctors, their faces expressed sympathy and scrutiny; they were looking at my every move. I thought, “One Doctor would have been enough!” But I understood that rarity is harder to diagnose and professionally more interesting for Doctors. My Consultant presented my symptoms and the opinion of all those present was I had younger than most, early-onset Parkinson’s. When the proclamation was made I felt relieved; waiting for the diagnosis was like repeatedly walking up to an automatic door and it not open for you. I knew, if I had Parkinson’s (I did!) that I had to start the business of accepting it; you can’t move forward with a “might!” In the end, I was grateful for the collective opinion that day because it removed any doubt in my mind over the diagnosis.

Telling somebody they have a disease doesn’t create that disease in them so a diagnosis doesn’t create or change your symptoms. But it does change the context of your life. I could have raged against my diagnosis (especially being so young) but I knew from my stammer that such rage is self-defeating. I am just being me in my thrownness, diagnosis or not.

One of the consequences of having early-onset Parkinson’s is most of the other sufferers I meet will be older than me. Despite my popularity among the Doctors on the day of my diagnosis, rarity (even among sufferers of a rare disease) can be isolating. When I was diagnosed with Parkinson’s I felt almost a pressure to conform to the disease; as if I was given a Parkinson’s uniform to wear and told “you must act like this now”. I felt typecast. Part of the early-onset role is dealing with the preconception of others that Parkinson’s is an old person’s disease. I will also have to be aware of my preconceptions. I could think I am “old before my time”, causing me to forgo the next 27 years. But, the context you find yourself in doesn’t necessarily have to define who you are.