What is the PUK stance on the above post please?
It would be helpful to have something available to people with YOPD, particularly if recently diaganosed and looking for support (relevant and in the local vicinity). I cant see any groups around Manchester and surrounding areas for YOPD. I see that there are a good number in other areas of the UK. Something online is certainly a good start.
Diagnosed 4 years, now 33.
Sorry I missed this post. But could you explain a bit more? What is Parkinson's UK's stance on which aspect of the post?
What these people are trying to do is valid and is to be encouraged.
However, it would be better if they could affiliate to the PUK as this would give them credibility.
I have attended meetings with groups of PWP that were self organised through other PD forums.
These were organised functions with people that had been chatting on line for sometime, partners attended too and we used a hotel which meant identities were traceable through credit cards.
PWP are often vulnerable and to travel into a busy city centre to meet strangers is not what I would recommend to the fit and well.
I dont want to squash what is in principle a great idea, just add a layer of safety to it
I sincerely hope it does happen because pd friends form a vital part of our support network.
You can please yourself, as can anyone, as to what they do or dont do. far be it from me to prevent you from doing that.
As i say its a great idea that warrants encouragement but in my opinion, safety is paramount when meeting people known to you only from the internet.
There are people out there with ICD problems who will go anywhere with anyone at anytime. Anyone with PD can "wear off" at any time. I would call them potentially vulnerable people.
With the greatest respect I dont know you or anything about your organisation. You have a facebook page that has been up for 2 years and of the 10 members I cant Identify who has PD. Also you dont appear to be one of them.
My point re hotels and credit cards refers to functions that were organised by the members of PDJunction a non charitable social website. Going to such an event was not a concern because we were booked in a hotel and the organisers were traceable through their credit cards. Im not suggesting thats the only way to meet up, its an example of how we were protected. All friends start as strangers and of course there are risks but there are things you can do to lessen them and I think by doing so it will help you achieve a better result.
The PUK have young onset groups that meet in pubs etc. They are known and authorised groups. By being a part of them It doesnt mean you have to change the venue nor the theme of the evening.
Is it wrong for me to be concerned about safety in the internet age.
I'm not trying to stop you. I cant stop you. I just want you to have the credibility that I think will help you be more successful.
What you want to do is a brilliant idea.
i am asking the PUK for their stance on this as a general question because there are some unscrupulous people out there in the real world who use the internet for all manner of nefarious purposes.
Should anyone be able to use the forum to advertise a private event? I dont know. Im not against it if the safety of individuals is catered for.
If you are genuine and I sincerely hope you are, what I'm saying shouldn't be a problem.
I hope that is clear enough Ezinda
Hi Zoë and Leyther
Of course anyone (not only people with Parkinson's) should be careful arranging meetings with people they meet online and do not know.
That said, Zoë, your group sounds like a great idea. There is no reason why a meeting has to be in a church hall! We encourage informal meetings or drop ins, this kind of group is getting increasingly popular.
But if you want to set this up as a Parkinson's UK group, we can definitely help you do that. There would be added promotion for your group because it will be picked up in searches on our website. At the same time, we appreciate that there are reasons you may not want to do this.
In March we're running participation events throughout the UK. The events are an opportunity to share your thoughts and ideas about how support for people affected by Parkinson’s can be organised locally. They are open to everyone whether or not you are already a part of the local group network.
Read more about this in a recent news story.
There are two events happening in your area:
North West 06-Mar Lancashire Our Lady of the Sea Parish 63 St Albans Road
Lytham St Annes
10-Mar Kendal Cancer Care
Lakes Centre Blackhall Road
12-Mar Sandbach Bradwell Village Hall Bradwell Lane
We hope to see you there or hear more from you about your group.