Thursday, 17 January 2013

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. 


  1. Ha! How true, how true - though I believe the figure of 1 in 20 is at 40 or below - but yes, it's an odd place to be. I know of four people in my town with EOPD, myself included. Three of us know each other.
    It's an interesting disease to have when you're young.

  2. Well i have thoroughly enjoyed reading your blog i am one of the 1 in 20 i devoloped Parkinsons disease in my 40s , one of the first things i said to my Consultant ' Parkinsons is a old peoples disease ' his reply was ' Michael J Fox was in his 30s when he devoloped Parkinsons' although in my case there may be a genetic link has my mother has Parkinsons , my maternal grandfather suffered with Dementia , does anyone know if Dementia and Parkinsons are linked ?