Article in today's Times


#1
Hi, I've just joined the forum, so please excuse me if I get any of the etiquette wrong!

I am a 57 year old professional man and was diagnosed 6 years ago. I have just recently given up work on the advice of my neurologist.

What spurred me on to join the forum was an article today's Times which, no doubt well intentioned as far as bringing awareness of PD to the general public was concerned, commenced in a shocking manner thus -

"It is the most devastating illness and there is no cure. Parkinson's disease crushes its victims by denying them control over movement and speech and a premature death is unavoidable"

I was furious at the writer's utter disregard for PD sufferers reading this article and phoned the Times, who put me straight through to him.

At first he got on the defensive claiming it was true - flying in the face of all the improvements made to control etc over the years. But when I explained the reactions of people like myself to such a dark, pessimistic and negative prognosis, he said he could see my point an apologised for the distress it had caused. In fact, a friend of mine who has just been diagnosed but is in a far worse state mentally than me, had to leave a function I was at with him tonight as he was so depressed as a result of the article.

I just wondered if anyone else had read the article and thought the same as I did about it?

#2
I find this really difficult. Like a fair number of pwps I was so relieved when I was diagnosed that it was not a brain tumour, and others have said if you have to have a neurological baddie then parkies is the one to go for. BUT if you want public money spent on research then you have to display your wounds and wail in public. It's a nasty tough old world.

Sorry, should have started with hello and welcome to the forum!

#3
hi oysterman

welcome to the forum, i am 53 dx 10yrs ago this is typical of someone who has,nt got a clue what they are talking about and has not done any research into pd how on earth does he still have a job, anyone reading that and newly dx would be completely devastated and scared out of there wits i am glad you put him right.sue

#4
Along similar lines .... Don't know if anyone watched Michael Bublē on the one show last night? During the interview he was explaining how he got his break by appearing on the parkinson show. He said his agent was so excited she came to him crying you've got parkinsons and he laughed and said he thought - oh no, I'm going to die now for sure!! I couldn't believe what I was hearing, and felt quite upset. I've been diagnosed two years now, if I'd heard that at the time of dx I would have been devastated.

#5
Hi Oysterman
Must admit that I have not read this article. I am a little surprised that this being Parkinson's Awareness week, Parkinson's UK have not arranged for an article to be published in some of the national papers to explain in clear layman terms what this disease is and how it effects people differently. Still it is only day two so maybe something will come out later in the week.

#6
So many times I read in the press that 'so and so,' "has died of Parkinsons" when in fact, in most cases, you die with it.

I too contacted a journalist regarding his ignorance of his subject matter, when he used the above phrase, but did not even have the courtesy of a reply.

#7
Hi Oysterman:
I'm proud of you. This shows we've still got a long way to go.

Best wishes,
Worried Well

#8
I have not read the article but I am not surprised. Do the modern news people write with sensation in there pen because a cheap story is a good story is one that receives a reaction regardless of truth, facts or a persons feelings .
I am an easy going bloke but I can sill admire a bloke that is stirred into doing something about unjustness. Good on yer fella. Oh! and welcome

#9
Hello oysterman,
I read the article this morning and my first thought was how insensitive. It is like the 'does he take sugar' syndrome! THEY think that our brains are too 'far-gone' to know, or verbalise our own responses/replies.
I was 41 when diagnosed and that was eighteen years ago. I rarely read about
Parkinson's because I'm scared for the future. However, at nearly 59, I still have a workable set of capabilities and nearly all my own teeth! I still read books and can hold a conversation! I think I would punch that journalist if we met!
Who will lend him a pair of shoes?

Lin
xx

#10
I was diagnosed with PD over 33 years ago, and I first showed symptoms in my early twenties. I am still an intelligent, literate and happy fun loving person. I love to read, and play chess and compute, and I love all literature . It often causes me to clash with the 'Does she take sugar' brigade to which I always reply. 'No,actually, she doesn't'.So, Mr. Whoever you are.....BACK OFF!Leave PWP alone and find something more interesting to do. This also applies to anyone of the same ilk, who thought they might stick their oar in also !

#11
Hello everybody,

It has been really interesting to see your thoughts on our awareness campaign in the media so far, and I just wanted to give you all a bit of an update on how the week has been going. So far, there has been over 450 pieces of coverage about Parkinson's Awareness Week.

Coverage is still coming in and we are keen to make sure that as many media outlets as possible talk about the condition. Key to the success of our coverage so far has been having an army of case studies across the UK willing to bravely share their experience of Parkinson's with their local media so that we can highlight the realities of the condition beyond the statistics.

I thought that you might also like to know that we have also approached The One Show to investigate whether, in the light of Michael Bublé's comments, they would consider talking about the condition in more depth - as you know with such a crowded news agenda this week, there is no guarantee.

As I mentioned, key to all of our media coverage are our case studies that choose to speak publicly about their experience of Parkinson's. We also provide basic information on Parkinson's in all our press releases - you can see the one for Parkinson's Awareness Week here: http://bit.ly/13g1XMP

Here are some examples of our media coverage so far:
Our Chief Executive, Steve Ford and Ruth Martin, who has Parkinson's, on Channel 5 news: http://bit.ly/Z2zfM8
Matt Eagles for the Huffington post: http://huff.to/15eY0Ie
Jane Asher in the Mail Online: http://bit.ly/1129ISI

We're also providing basic information on what Parkinson's is through case studies on our website along with information on how the public could respond more supportively: http://www.parkinsons.org.uk/myshoes

We can't control everything the media presents about Parkinson's but, alongside people affected, we're doing our best to educate journalists as well as the public. Feel free to ask any questions you have about our approach to Parkinson's Awareness Week here.

#12
Hi Blue Angel,

Not sure whether you're having a go at me or the reporter!

Oysterman