The PDUK official response to Bob Hoskin's PD diagnosis seem very appropriate to me hitting just the right note highlighting that some can operate effectively with PD whilst others might not. However on LBC97.3 this morning I felt let down by my own side. A respresentitive from PDUK and two emails led me to believe I exagerate my problems and drink from the glass half empty. One emailer could still do everything as before except play tennis with the minimum of medication. Another leads an active life and the PD rep stressed the enormous strides which have been made in treating the symptoms of PD.
I'm so glad we are all so fortunate however 'Turnips' humerous response (see this forum) to the article about a Parkinson's sufferer arrested for not smiling during the Olympics gave a much more insightful perspective on daily life with Parkinsons. I don't consider myself too disalbled at present but only yesterday I was immobile in the middle of the supermarkit whilst peope waited for me to 'unfreeze' so I could get to my husband at the til with a tub of tomato sauce. Now I feel even more guilty that not only was I being a nuisance but I wasn't seeing the funny side.
Nobody gave a picture of people in the the later stages or people struggling to live alone, or people with side effects from long term treatment.
Do we want people to donate to the charity or not?
Just listening to Radio 2, Jeremy Vine, topic of Bob Hoskins and Parkinsons is coming up at 12.30 or 1, so lets see what they have to say about it.
They seemed to pussyfoot around the symptoms. Maybe if they had described how the symptoms progress and inform people what medication is given it would have been more enlightening.
Hi SF and polly,
Thanks for your comments.
There has been a lot of media coverage of this in the last 24 hours and we’ve done our best to respond in a way that raises awareness of the condition.
As you all know, being given a diagnosis of Parkinson's can be a bewildering experience.
As no two people with Parkinson's will experience the same journey as the condition develops, it is important that we give a realistic view of what could happen, whilst at the same time explaining all the positive options currently available for treatments and support.
Sometimes this is hard to achieve in the space of a few minutes, especially with presenters who often have very little knowledge of the condition.
We always try and paint a realistic picture of what it is like to live with Parkinson's but this is where we also need your help as case studies to help explain the impact of the condition where possible.
If you'd like to be a case study for the future, please get in contact with us at pr(at)parkinsons.org.uk
Jill
Media and Communications Officer
Thanks for your comments.
There has been a lot of media coverage of this in the last 24 hours and we’ve done our best to respond in a way that raises awareness of the condition.
As you all know, being given a diagnosis of Parkinson's can be a bewildering experience.
As no two people with Parkinson's will experience the same journey as the condition develops, it is important that we give a realistic view of what could happen, whilst at the same time explaining all the positive options currently available for treatments and support.
Sometimes this is hard to achieve in the space of a few minutes, especially with presenters who often have very little knowledge of the condition.
We always try and paint a realistic picture of what it is like to live with Parkinson's but this is where we also need your help as case studies to help explain the impact of the condition where possible.
If you'd like to be a case study for the future, please get in contact with us at pr(at)parkinsons.org.uk
Jill
Media and Communications Officer
Thanks for responding.
SF
SF
Thanks Media, I didnt mean to be critical of you. Its good to raise awareness thanks.
Hi polly,
No criticism taken. It's good to get feedback like this and have a chance to explain what we're doing.
Thanks!
No criticism taken. It's good to get feedback like this and have a chance to explain what we're doing.
Thanks!
if i may i would like to say some things about charities that no charity can admit but which i believe to be true (i used to work for a very big charity whose name begins with 'oxfa')
the purpose of a charity is to raise money for the cause
a charity has to be run like a business
the product they sell is making the donor feel good
donors feel good giving money to make people feel happy
portraying miserable people does not make donors happy
portraying people do well and trying hard makes donors happy
sometimes a charity is trying to educate people
sometimes it is trying to influence decision makers
sometimes it is trying to get donations
obviously this is my opinion and not puks, but we do have to allow puk to do their job of running a business.
the purpose of a charity is to raise money for the cause
a charity has to be run like a business
the product they sell is making the donor feel good
donors feel good giving money to make people feel happy
portraying miserable people does not make donors happy
portraying people do well and trying hard makes donors happy
sometimes a charity is trying to educate people
sometimes it is trying to influence decision makers
sometimes it is trying to get donations
obviously this is my opinion and not puks, but we do have to allow puk to do their job of running a business.