What's in a name?


Michael J Fox, Billy Connolly and Jonathan Stevens have acquired the addition to their name of, "...who has Parkinson's disease". What does this mean? How much does Parkinson's redefine who we are

It is easy for those on the outside looking in to view us as a disease and dress us in Parkinson's clothes. For those on the inside looking out, being defined either by others or indeed ourselves in relation only to Parkinson's is shifting the true centre of who we are. It's like taking a picture of us and noticing only the random person who happened to walk into the frame when the picture was taken.

Something of us stays the same with this disease; Michael, Billy and Jonathan are each still the person they were before diagnosis. Of course there are physical and emotional changes but being defined by these changes is substituting the whole for only a part of who we are.


PD doesn't start at diagnosis, that's the point at which we become PWP and stop being "that guy with the limp."

PD defined me long before I had a name for it, living with symptoms without a name was a lot harder than having the knowledge and therefore the opportunity to deal with it.

MJ Fox is becoming more defined by his PD because it suits his purposes.

Muhammed Ali is still the greatest.

Billy has prostate cancer too, could it be your / our perception of him as a PWP that defines him in your / our eyes whereas the cancer crowd see him as a person with cancer.

Todays papers, tomorrows chip wrappers.

Billy will be defined as a comedian unless he chooses otherwise or he's given DA's.

Now that could be interesting!!

Hi Leyther

You say that "PD defined me long before I had a name for it" but then when discussing Fox, Ali and Billy you say (and I agree with you) that the definition is largely self-imposed (Ali is indeed the greatest, Fox is using his diagnosis I think to help others and Billy is a comedian). Why are you defined by PD when they are not?

dr j

Because the 3 are public figures and became so relatively early in life. They,themselves, may well consider other factors including PD shaped them and Fox has wrote about his PD but I think they are generally well known by the public for their fame rather than their illness.

I can only speak for myself as to what influence PD has had but looking back pre dx I think it has had enormous influence in the way it affected me, particularly the cognitive effects, anxiety etc.

So I look at it as something I've lived with possibly all my life (first known motor symptoms aged 21). I find that helps me to gain a perspective on it and takes away a lot of the fears.

I agree that if we are perceived as pwp or disabled by others that can be annoying if applied in a negative way.

Is there a positive way? 

If we are seen as overcoming our problem then, we can be seen as inspirational.

I found a way to live with this illness by embracing it and looking for what it has given me rather than what it has taken. I don't expect everyone to feel the same or feel they have to be that way. 

I think we redefine ourselves all the time based on our life experience.

PD for me has been an opportunity to challenge myself in overcoming the difficulties.