Parkinson's Is


#1

Parkinson’s Is

We are launching ‘Parkinson’s Is’, a campaign to increase the understanding of Parkinson’s as a serious condition. We would like to hear from the community about the reality of living with the Parkinson’s.

Use this ‘Parkinson’s Is’ thread to share your story and experiences. We’ll use some of the responses across our social media channels to show the major impact Parkinson’s has on everyday life.


Parkinson's Is Campaign is now LIVE!
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#3

How to get involved in the Parkinson’s Is Campaign

The purpose of the campaign is for the Parkinson’s community to film a short 60-90 second smartphone video talking what Parkinson’s is to you – your Parkinson’s story/experiences.

The start of the video begins with “Hi my name is/I’m [insert person’s name] and Parkinson’s Is……” with an ending of “share your story with Parkinson’s UK”.

• Keep it short and simple (roughly 60-90 seconds)
• Film your video in landscape, not portrait
• Make sure your audio is clear
• Think about lighting and ensure there is a good enough light source
• Look straight into the camera as much as you can and address your audience directly
• After your introduction, start your story with ‘Parkinson’s Is…’
• End your video with ‘share your story with Parkinson’s UK’
• You don’t need to edit anything, we’ll do that for you
• Relax and be yourself

Here is an example video - https://youtu.be/FgLFKlmRXyA.

After you film your ‘Parkinson’s Is’ video, you can upload it to your Facebook or Twitter account and share the link below.


#4

I don’t understand this campaign. Is it just going to be videos that people with Parkinson’s (sorry - people affected by Parkinson) have made themselves which you then post on social media? I can’t seem to find any real information about the apparently fast approaching membership campaign/ raising awareness campaign - I’m really not sure which it is. A bit more information would be great.
J


#5

Hi @Jackson, the Parkinson’s Is campaign is an opportunity for the community to share their stories and experience so Parkinson’s via video. We will then use some of the submissions as part of our campaign to raise understanding of the condition to the general public and the major impact Parkinson’s has on everyday life.

Regarding your membership enquiry, information about our Members Day in 2018 can be found on our website here https://www.parkinsons.org.uk/about-us/annual-report-and-accounts which contains links to the annual report for 2017.

Our annual report and AGM papers for 2018 won’t be circulated until September 2019.
Team Parkinson’s is the new name for national membership of Parkinson’s UK. But it’s more than just a new name – it’s a new way of showing the world that we’re one big community, uniting to end Parkinson’s. Forever. The team is made up of thousands of people who care about Parkinson’s – whatever their connection and wherever they live. We’re people with Parkinson’s, scientists and supporters, fundraisers and families, carers and clinicians, working side by side as a movement for change.


#6

Thank you for getting back to me but I still don’t understand. So the ‘Parkinson’s Is’ campaign will effectively represent individuals who send in a video rather than any coordinated or planned campaign representing the collective views of people living with Parkinson’s? And it will be pretty much exclusively accessed by those who already check out the PUK Twitter feed and Facebook sites :-S
I still have no idea whether the high profile marketing/ fundraising for research campaign that I have also read about is the same as the ‘raising awareness’ campaign and I don’t know where to find the answers to the questions posed on members Day.
I’m sure there’s a good reason for not releasing the AGM documents for a year but the questions were asked on the day so surely the answers to those could be provided.
I have already read the ‘Team Parkinson’s’ blurb on the web page and having now read it again in your reply I’m still non the wiser as to whether this new approach/new membership offer that I thought I was part of intends to offer support to people living with Parkinson’s or simply intends to focus on ‘ending Parkinson’s’ (which I guess will end the need to offer support anyway if you think of it like that, though there is clearly a way to go before this becomes a reality so …) and I still don’t understand why the self management groups which have been advertised as such a success have suddenly been suspended.
I know I’m a pain but I don’t think any of my questions are unreasonable. I do understand that you may not be able to answer them but I’d be grateful if you could point me towards anywhere that I could find out some more information. I’m just trying to be a little bit more informed.
J


#7

https://www.parkinsons.org.uk/get-involved/parkinsons-is

Perhaps this link will help give more information about what this all about.

I wondered if it would be a place for me to share a poem about living with Parkinson’s that my mother wrote as she coped with living with Parkinson’s.
Let me know…or I guess I can just send you a clip and you can decide if it is suitable for this campaign…


#8

Hi @Keld, would it be possible to record yourself reading out your mother’s poem?


#9

I will do!


#10

Hi, I’m the guy in the video. I think first and foremost this is a simple campaign to bring the face of this disease a bit further into the daylight. I for one have found that even a simple video like my example above, has strengthened people’s understanding (at least the people around me), and sadly but importantly seeing someone of my age talking about PD is crucial, I recently put on a mini festival where 150 people left with a better understanding of what we’re going through, either as a sufferer or living alongside someone suffering. I didn’t go into major clinical or scientific details, I simply spoke like I did in the above video and 150 more people now better understand PD. This is crucial in my mind. Sometimes keeping it simple is all people need/want to move forward. It’s not possible to answer every question in every campaign.


#11

Hi @Jackson,

The full ‘Parkinson’s Is’ campaign launching on World Parkinson’s Day will be a well-planned and coordinated campaign – including several pieces of content to bring awareness and understanding of Parkinson’s. One of these areas will be videos from the Parkinson’s community sharing their stories and experiences of what Parkinson’s is to them. As videos are the most popular and engaging format on social media, we feel these videos will be a great way for the general public to gain an insight into the impact Parkinson’s has on everyday life.

After the campaign launches, the content will be liked, shared and spread across social media, on Facebook, Twitter, Instagram etc, to reach more people across the internet and increase the understanding of Parkinson’s as a serious health condition.

To answer your query about the self-management programme, we’re no longer offering this programme. It’s not been an easy decision to stop it but like all charities, we have to focus resources on delivering activities that provide the greatest value for people with the condition and unfortunately, the programme was not a sustainable way to offer support. However, support is available for people with Parkinson’s through our national helpline, Parkinson’s local adviser service, online forum and the many locally based activities and groups.

For more information, please visit www.parkinsons.org.uk or call our helpline on 0808 800 0303.

Best wishes,
Reah


#12

Have done a video but not sure how to get it to you! Please give me some instructions!!


#13

Drew, can you help? I have a video as part of Parkinson’s Is…but don’t know how to send it to PUK…any suggestions?


#14

Hi @Keld, thank you for recording your video. The best way to send it to us is by uploading your video to https://wetransfer.com and emailing [email protected].


#15

Just sending it now! Let me know when you get it! Hope it is ok!!


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