I've got Parkinson's""


#1
Telling the world I've got Parkinson's is like taking my clothes off in front of a scrutinizing doctor. I become an object, a thing of the public-self and confined within a narrow spotlight. I feel like I'm naked standing next to myself; I'm exposed but people see me through their own expectations.

But I'm more than a disease and more than what people expect me to be; I am myself as well. When I tell others about my disease I mustn’t allow, “Yes, I’ve got Parkinson’s” to mutate into “I can only be Parkinson’s”. Otherwise, I will get locked in the public arena and lose the other things I am.

I think it is important to be open about Parkinson’s both with yourself and other people because the disease tries to close you down. Nevertheless, people are so varied and as such will have varied reactions to your disclosure; there is nothing you can do about this. What you can control is your reaction to their reaction.

dr jonny

http://dialoguewithdisability.blogspot.co.uk

#2
I work with a variety of professionals in my job as an Early years consultant specialising in children with SEN, including speech therapists, paediatricians,Occupational therapists,Educational psychologists, nursery / school teachers, parents of children with additional needs and many more.

When I was diagnosed two years ago I told everyone I work with that I have PD. I can honestly say that I have not been treated any differently. I am still doing the same job (with a few adaptations) and have a senior position ( I have even had a promotion following my diagnosis because I am damn good at my job). I have never felt belittled or discriminated against because of my PD and people judge me on my performance and not my tremor !!.

I love my job and people respect me for my extensive knowledge and experience of children with additional needs. They know I have this disease but recognise that it doesn't mean I have suddenly become incompetent or that I am not able to do my job as well as I ever could.

Caroline

#3
Like you Caroline, I have not experienced discrimination. People often offer to help - carrying drinks etc., but I have never sensed other than genuine sympathy for my (obvious) PD. And at least I can still get around. My wife has primary progressive MS, so I now appreciate that there may be worse conditions than PD. She was diagnosed with MS a few weeks ago: following two cancer ops just before Christmas and five weeks radiotherapy! She just gets on now with being a mother and grandmother as best she can, just as she just got on with being a teacher and headteacher, all her working life.

#4
Hi Trev,

Your poor wife, one thing after another. She must be a strong woman to emotionally deal with all that. Must be very frightening for you too!!.

Keep strong for her and yourself.

Thinking of you both

Caroline
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