I'm Clare, I work in the marketing team at Parkinson's UK.
People here on the forum started a thread recently about sharing the realities of living with Parkinson’s with the public: http://bit.ly/Yq9hly
Many people with Parkinson’s have told us that they wish the public knew more about the condition.
We’re working on an awareness campaign which aims to do just that. It will be launching soon– 10 December. As a part of this, we’re asking everyone in touch with us online--on Facebook, Twitter and the forum—to tell us what they wish the public knew about Parkinson’s.
So, what do you wish people knew about Parkinson’s?
"I’ve been living with Parkinson's for 18 years. I wish more people understood how the condition affects every part of my life - from struggling to get out of bed in the morning until going to sleep at night.
I have difficulty sleeping as I can't make my body turn over when I want to."
We’ve already had over 70 responses to Liz’ post on Facebook--an amazing response. You can take a look at the Facebook post here: http://on.fb.me/V5QaXO
We look forward to hearing from you too.
Without being alarmist or depressing, Parkinsons is not listed as a primary Cause of Death in the UK, yet it is 14th in the reported Causes of Death in the USA.
Changing the perception that it is merely something to 'live with', would be a start point and might result in increased public funds for research and treatments.
its a very touchy point, and upsetting to many people, but it i am afraid krugen is right in that pd can 'cause' death.
in the uk the immediate cause of death was coded as pneumonia but in most cases the underlying cause of death was listed second - pd, ms. etc. this was obviously stupid so in icd 10 (the most recent classification system) the underlying cause of death will be listed first - so there will be a massive sudden increase in deaths due to pd, but it is only a change in how it is coded.
It would be good also to boost the message that great strides forward in research for better treatments and/or cure are in our reach - so now is a great time to invest cash and effort in research programmes and trials.
I understand what you are saying, I have tried telling people that Americans die from Parkinsons but the Brits stoically live with it.
More seriously, when I was diagnosed 2 years ago I was firmly told by the neuro that it was not fatal and that 'with the right attitude' I could learn to live with it.
I didn't realise there had been a reclassification here, might that mean more government money for research?
Thanks for all your responses so far. From what you’ve said it sounds like people’s perceptions and understanding (or should that be misunderstanding?) of Parkinson’s is something which can be really frustrating. Raising awareness with everyone from friends and family to the man on the street is something we’ve been thinking a lot about lately. Hopefully our public awareness campaign launching in just over a week’s time will help to address this.
The discussion about drug side effects highlighted today (you can read the news story here: http://bit.ly/QSm8vd) reminded me of other ways people can be affected. As we all know, drug side effects can be just as difficult as Parkinson’s itself. Raising public awareness might also have a knock on effect and help us to raise more funds to continue developing better treatments – I’ve certainly got everything crossed in hope that it does.
Thanks for that - it seems a step in the right direction (if a bit complex)
What about the classification of PD re: falls and dementia ?
regarding our little side discussion, on a brighter note I think the actual number of deaths through pd related problems will decrease due to better treatment. So we can all look forward to dying of something else.
disease coding in the uk is not what it could be - 1 in 7 coders have NO TRAINING, are very poorly paid, have inadequate support and are under pressure to get through a pile of illegible doctor's notes. So statistics other than mortality are somewhat dodgy.
really, coding should be done by the doctor using Artificial Intelligence software at the time of diagnosis.
this is a hobby horse of mine
My grouse is, in the early days when I first showed symptoms of something, And still being in my teens, my first symptoms were a tremor in my right hand, which got worse if people looked at it, or mentioned it , and I fell a lot,and it annoyed me that people assumed I was drunk. I wasn't diagnosed until at least ten years later because doctors thought I was far too young to have Pd, and at that time to say it was inherited was not heard of.
So my answer to the question is, I wish more people understood the diversity, and complexity of Pd. I live in a small village in Cambridgeshire and I just wish there was more awareness and basic understanding of PD.
Over on Facebook, Lucy who was diagnosed with Parkinson's in December 2010, has shared an anecdote about preparing her Christmas cake. This year she found that mixing the ingredients together took her over an hour - before it would've taken her 5 minutes.
Are there any things you used to take for granted which you or the person you care for now find difficult?
The conversation’s already kicking off on Facebook if you want to take a look: http://www.facebook.com/parkinsonsuk
I did Secretarial work or over 30 years and was a very fast touch typist. It now takes me half an hour to type an e-mail. Even worse is the fact I cannot now write either.
I used to dislike getting up in the morning but did not realise how lucky I was to jump straight out of bed - it now takes 15 minutes.
The list is endless and I am sorry to complain but I really dont think the general public realise the everyday problems experienced by pwp. and this is after only 2 years of diagnosis.
Thanks for all your responses. We've launched our awareness campaign today so I've started a new thread under Daily Life with some more details:
Wish people realised that behind the rather flat face there is an intelligent thinking human being .
I am convinced people think PD is infectious most of my friends have faded away and even family members no longer visit, is it as a result of lack of understanding or not wishing to see a human with PD suffering ,perhaps they think I need a trip to the vets like a old dog , ,,,sorry I am a bit grumpy this morning .