How did you feel saying 'I have Parkinson's' for the first time?


#1

How did you feel saying ‘I have Parkinson’s’ for the first time?

Although it’s only the beginning of 2016, we’re busy working hard behind the scenes to prepare for the annual Parkinson’s Awareness week in April – and we need your help!

Over the last year we’ve heard from people with Parkinson’s that telling loved ones, friends and colleagues for the first time about their diagnosis can be one of the hardest moments.

Whether it’s been a struggle or a relief to share your diagnosis, we want to hear your experience, please share it with us by filling out our short survey at www.parkinsons.org.uk/pawsurvey

Telling us about your experience, will help shape how we can create awareness around the realities and challenges of life with Parkinson’s.

Thanks for your support!

Joe

Media Team


#2

How did I feel saying I had Parkinson`s..............RELIEVED !

My daily routine begins with an hours walk on nearby playing fields with my two dogs.

I sometimes stop and watch the local junior football teams play football - there are some really talented youngsters amongst them.

Recently I stopped to watch a game between two young girls teams.

My tremor in my right hand is particularly bad when I stand still, so I try to hide it by burying my hand deep in my coat pocket.

On this occasion my actions appeared to have been observed by some of the watching crowd and I was approached by an angry mob of horrified and disgusted parents who were hell-bent on giving a good kicking to whom they thought was a dirty old pervert.

I only realised the consequences of this when one of the approaching mob pointed at my right hand pocket.

The realisation of this sent my tremor into overdrive, which didn`t help matters at all.

Fortunately, before I was beaten senseless I was able to explain that I had Parkinson`s and that my actions were completely innocent.

This wasn`t the first time I told someone I had Parkinson`s but it was definitely the most dramatic.

Before anyone asks, yes I still take my dogs on the playing fields but I now watch the footy from a healthy distance.


#3

It's not just when watching sport that the shaking hand causes problems.   Gents public conveniences are a cubicle only zone if you have the shakes. Even then if there isn't one free it's often safer to keep your hands shaking where they can be seen than hidden standing anywhere near the urinals.

Joe I'll complete your questionnaire but PD may be pretty unique in almost forcing you to tell complete strangers you have serious medical condition.  I found telling my family depended on how they felt about PD but having PDUK info to hand was very helpful.


#4

 

You seem too have a problem with your survey, if i dont tick what doesnt apply i am drawn back too ticking things that do not apply too move further on in your Survey, would you like me too tick that i have paranoia when i don't?, if i tick it will that help others who do and will invalidate the 'survey'.

"Please review your responses on this page. One or more questions require further input.

Have you developed any of the following symptoms, and if so, have you shared them with your specialist?

Please select all that apply".

And how is that related to ability too plan tasks?.

 

 

 

 


#5

Thanks to all who’ve shared their experiences so far. It’s really good to hear a range of responses and these do really highlight the need for more awareness of the condition. To make sure your experiences are included to help shape our work for Parkinson’s Awareness Week, please do fill in the survey here: www.parkinsons.org.uk/pawsurvey

Sea Angler, there is an option at the bottom of the list to tick if none apply to you which should let you move on to the next section. 

Thanks,
Joe


#6

 

Oh yes but, for example..


It ask's can you plan a task, you can tick that, but the question next too it is have you told your consultant or something similar, if you haven't told your consultant then you cant tick the box can you?.

Which brings you back round too "Please review your responses on this page. One or more questions require further input".

So you are then forced to tick 'none apply' to move on in the survey, it isn't a true evaluation of the Questions asked is it. One might think if it was the Government asking the questions then the questions are being manipulated, Just my view.


#7

Hi Sea Angler,

Thank you for raising this issue. All feedback on the survey is really important and we are now looking into the issue you have raised.

Thanks,

Joe