Talk Parkinson's blog wants your feedback

Talk Parkinson’s blog is nine months old!

We hope you’ve been enjoying our weekly updates and opinions on the world of Parkinson’s research, fundraising and campaigning.

But now we want to hear what you'd like to see on Talk Parkinson's and get your feedback on how we can make the blog even better.

We'd love to know:

  • What posts have you found most interesting?

  • What types of stories do you like to read the most: stories about people with Parkinson’s? New work we are doing? Comment on current media stories? Research progress or campaigning stories?

  • What would you like to hear more about?

  • Do you think we post frequently enough? Too much or not enough?

  • What sort of topics would make you want to comment online or get involved in a discussion?

And we'd really like to hear a bit about yourself – do you have Parkinson’s? Are you a carer or friend of someone with Parkinson's? Or someone with another interest in Parkinson's information? If you want you can stay completely anonymous. It's up to you.

Please post your comments and ideas below. You can also email us on With your feedback we can keep improving our blog and website and make sure our content is relevant for everyone affected by Parkinson's. Thanks for reading.


Anonymous said...

I think hearing about what the PDS is doing is good, it would be great to find out more about their campaigns.

Anonymous said...

I hear the PDS is to undergo a "re-branding" exercise, which will include the dropping of the word "Disease". Can you confirm/elaborate?

Parkinson's Disease Society said...

We have been reviewing the way we talk about who we are as a charity and what we do. This includes reviewing our name and brand.

We're not quite ready to give details at the moment, but will be making a public announcement on 23 February.

Take a look at our website on that day for an update.

Anonymous said...

My husband has Parkinsons , or maybe I should say (WE HAVE PARKINSONS) I dislike using the term CARER . We have cared about each other for over 50 years.

I would like to see more attention given to making everyone aware of the many symptons that comes with Parkinsons, so that it can be more easily recognised, and understood .

Before my husband was diagnosed with Parkinsons I just thought it caused a tremor , how wrong was.

Anonymous said...

I think most people think parkisons affects older citizens, but it can strike at any age.Perhaps it would be good correct the wrong impression people have. Thank you for your work on our behalf. The free prescription lobby is good I had no idea so many groups are involved.

Anonymous said...

It was lovely to hear that you are planning to spread the news about PD even more. People know in general, that there is such a condition but hardly know what it is all about. That makes one with the condition very isolated and lonely, because you are not understood. People do not realize how tragic it is to have bad news, how long it takes to come to terms with it, how difficult it is to live everyday life, how owful it is to think about a future??? Anything you do to help people, and you do a lot, will be very much appreciated always. Thank you.

Anonymous said...

The Personal care bill will help those Parkinsons patients at home with the most substantial needs, and this will be free. What about Parkinsons patients in nursing homes, why should they have to pay for their personal care because they have even greater needs and it is their home afterall? Can the Parkinsons Society clarify the situation by asking the Government these questions.

Anonymous said...

There is a great concern about loosing the family home due to PD & care in the future. Can anybody confirm that there is a way of preventing it? Children should not be punished because of their parent condition while the others are priviliged to enjoy the fruit of hard work of their parents.

Post a Comment

Note: only a member of this blog may post a comment.