Confused by the new terminology (or maybe I just need more sleep :-[)


#1

I’m confused. I’ve been reading the website (in an effort to stay informed) and I keep reading about people ‘affected’ by Parkinson’s but I don’t really know what it means. Maybe I’ve missed something, or maybe I’m just being characteristically grumpy :-[, but if this includes me, I really don’t like being described as somebody who is ‘affected’ by Parkinson’s in the same way that my friend or sister or my upstairs neighbour who sometimes carries my shopping in for me are affected.

My parents have both had a stroke; I can offer a lot in terms of sharing experiences of caring for somebody who’s had a stroke and adjusting to the changes that can occur in somebody following a stroke but I have no idea what it’s like to have a stroke. I don’t class myself and my parents as equally affected by the experience of having a stroke any more than I consider myself affected in the same way by cancer as my friend who has an infinitely more personal relationship with it. I tried to refer to her as somebody ‘affected’ by cancer just to see what would happen - suffice to say the result wasn’t pretty :-S

Apparently the new ‘movement for change’ being embarked on by the ‘Parkinson’s Community’ is going to unite people affected by Parkinson’s. These people are listed as: ‘scientists and supporters, fundraisers and families, carers and clinicians.’ They are ‘working, side by side, to improve the lives of everyone affected by Parkinson’s’. Hmmmm, people who have Parkinson’s don’t seem to be part of the new 'movement for change '. Or maybe mentioning people who have Parkinson’s as any differently affected than anybody who has any contact with them at all is no longer permitted for fear of suggesting that the impact is any greater on people living with it than the people they ‘affect’.

I wrote and asked who was classed as being ‘affected’ by Parkinson’s. Now I am genuinely grateful for the endless patience shown by all the people at PUK who answer my many, many queries [most of which seem ridiculously important at 2 in the morning but a little random in the cold light of day] but the answer confused me even more because apparently people ‘affected’ means ‘someone who is closely connected to that person and who may be a partner, sibling, carer, or other family member, and whose life is directly affected by the condition too’.

I’m not saying that Parkinson’s does not have an impact on the lives of all the people mentioned but I’m feeling pretty invisible right now and I guess I’m wondering where the role is for people who have Parkinson’s moving forwards. And if the impact of my Parkinson’s is to be measured mainly by the impact it has on my friends and family, then I guess I am little more than an inconvenient expense because I live alone and tend to lack the prerequisite extensive support network that I was supposed to acquire along with the Parkinson’s.

I don’t know, maybe I’ll go and work on not overthinking things, and also on being a little less grumpy. Maybe it’s being ‘affected’ by Parkinson’s that makes me grumpy :-S. :-Z :- ( Jx


#2

The best way to deal with new terminology is to join in. Start referring to yourself as the ‘locally-based primary affectee’. (Only do this if you are sure of the temper of the secondary affectee you are addressing)


#3

:slight_smile: yes. Jx


#4

Sorry, filed this under the wrong section. I keep hitting the wrong button! :frowning:


#5

Hi @Jackson,

Thank you for sharing your thoughts on the terminologies we use on the Parkinson’s UK website.

Although you’ve already spoken to one of my colleagues about this, I just wanted to chime in with a little more information. The general term ‘people affected by Parkinson’s’, is a term we’ve been using for a while, and came about in consultation with people with Parkinson’s, as well as carers and family members. It’s unfortunate that you feel the term above doesn’t directly address you or anyone else that has Parkinson’s as this certainly wasn’t our intention, we place people with the condition at the core of everything we do. For the most part, that terminology lands well with people, and we know that our audience extends far beyond just those with the condition.

The “Parkinson’s community” that you’re referring to is in relation to our membership programme. People affected by Parkinson’s have been involved in this work since the beginning. ​In summer 2017 we ran two workshops in Birmingham and Cardiff to help shape the aims of membership – and build principles to guide our new membership model.

We launched an online consultation platform and challenged members and potential members to share their ideas on how we can encourage more people to join us. This is open for the duration of the programme. To find it, visit: parkinsons.org.uk/MembershipIdeas

In September 2018 we ran co-creation workshops, which included local group volunteers, in London, York and Newtown (Powys), and invited attendees (including people with Parkinson’s) to create a membership pack that inspires people to participate in our movement. We also explored new ideas for talking about membership and how this will help us to achieve our goals together.

I hope this information provides some reassurance and clarifies your concerns.

Best wishes,
Reah


#6

Hi Reah,
I have to admit to getting a little too irked by this (sorry). It’s a habit I’m trying to break :-S
I don’t like the term ‘affected by Parkinson’s’ and I would never refer to myself in this way. As a generic term, it really bugs me, but maybe that’s just me. I wasn’t, however, saying that I object on behalf of all people with Parkinson’s, I can only speak for myself and I don’t always do that terribly well.
It is quotes on the website defining who is classified as ‘affected’ that I was questioning - such as the quote about the new membership offer (news section) which mentions all sorts of people who are classed as ‘affected’ by Parkinson’s but doesn’t seem to mention people with Parkinson’s at all, and neither do some other definitions of ‘people affected’ that I have been given.
It’s still a little confusing but again, I may just be being dozy.
Many thanks as always for taking the time to reply.
J :slight_smile:


#7

Parkinson’s Disease is a horrible name which brings lots of heavy, dreary baggage to its already over-burdened sufferers. It has overtones of old-age, image and infirmity which add to the hopelessness (there is no cure; there will be a slow degeneration…) which is imparted at diagnosis. What is this image doing on the front of the Wiki entry, why is it even existing in the 21st Century? I had my diagnosis ten years ago this April (at 51) and I am still OK doing more or less what I always did even though I am ten years older. I still remember the utter fear I felt on hearing that diagnosis.
I think we need re-branding. How about ‘Parkinson Lite’ - it would get rid of the annoying, fussy apostrophe for a start. PL would be a newer, more streamlined version with a lot of the fear taken out but with added hope, courage and humour.
I am not just being flippant here. Words and their connotations affect people and that moment of my diagnosis was a moment of darkness which took me years to find my way back from. It needn’t be all bad. What helps me through are the words of Glacier by John Grant:
This pain
It is a glacier moving through you
And carving out deep valleys
And creating spectacular landscapes
And nourishing the ground
With precious minerals and other stuff
So, don’t you become paralyzed with fear
When things seem particularly rough.

Fear is a corrosive substance. If you’re wondering how to get rid of it just remember that you only have, and only ever had, one day: this day. Deal with this day’s challenges, enjoy the things it gives you. That way ‘The Future’ we worry about does not even exist. And when things are bad on this day, comfort yourself with the thought that not everyone gets to see those ‘spectacular landscapes’ - and the more you see of them, the more compassionate you will become.


#8

It is disappointing that your note had to include a re-assurance that invited attendees ‘will include people with Parkinson’s’. I should hope so!


#9

Hi @Marigold,

I’m sorry to hear that you were disappointed with my point about including people with Parkinson’s in our membership programme. This, ordinarily, would go without saying; however, I made this point because I wanted to make it absolutely clear that we place people with Parkinson’s at the core of everything we do in response to Jackson’s feedback.

I hope this clarifies things for you.

Best wishes,
Reah