What do you wish people knew about Parkinson's?


#1
Hello,

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?

#2
To kick things off, here’s a quote from Liz, chair of our Board of Trustees posting on Facebook yesterday:

"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.

#3
I wish people had more awareness of the non motor effects of PD. if my shakes are well under control my friends tell me how well I look, they have no idea that I still may feel quite bad that day. I never want to start to go into detail about how I am actually still feeling the effects of the condition and that it actually took me 3-4 hours today to get my shake under control. Furthermore, I only do see them if I'm having a good day, if I'm not I cancel our appointment, I'm also sure that they all think that my OCD hasn't been caused by the meds and it really is my own fault that I'm about to loose my home. In general people have no idea!!!

Glenchass

#4
Taking it seriously - Incorrect perceptions

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.

#5
ive had pd 12 years im 43,i have carers in the home and i have surport going out.i go in the wheelchair,i get quite frustrated when people go to speak ,but do it to the carer,asking how iam etc.why not ask me,imay have a slured voice,not good memory and bit confussed but i have feelings and a voice.ivve put a poster with collection tins in the local health centre and spar,the poster expalins symtoms of parkinsons,giving out that awarness to people.and hopefully this will help,so when i go out im spoke to as well as me carer.it would make my day:smile:

#6
Parkinsons doesn't kill you, it just takes your life away and leaves you watching what it should have been.

#7
krugen and mosie
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.
http://www.laia.ac.uk/docs/2008_2.pdf

#8
As Glenchass has said the non motor effects are widely misunderstood. I wish more people understood that depression was so common among PWP

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.

EF

#9
I wish people realised that people with Parkinson's present with a different mixture of symptoms and different severity and progression of differnt symptoms. Just so people do not expect one person to do as well or as badly as another person.

#10
Hi Turnip

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?

#11
Hi all,

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.

#12
Hi Turnip

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 ?

#13
M and K
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.

http://library.ahima.org/xpedio/groups/public/documents/ahima/bok3_005534.hcsp?dDocName=bok3_005534

really, coding should be done by the doctor using Artificial Intelligence software at the time of diagnosis.

this is a hobby horse of mine :grin:

#14
Hi, Sorry to butt in, but I have had PD for, well, anything between 30 and 40 year, I inherited it from my lovely Grandmother . She died when I was about 5 years old and all I remember, which MAY have been due to her having PD was a tremor in her right hand. But at five years old, I guess I assumed it was normal for Grandmothers to have a tremor! It wasn't until much later I learned that my Grandma has suffered from PD.

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.

#15
hI, As all the replies seem to show there is very little understanding throughout most of the country,if you put a brave face on and DO NOT moan your ok ,if you do say anything about your symptoms you dont have any. I think it frightens people,so on the whole I take the looks of people thinking your drunk in the supermarket,but have explained or shown my little card (parkinsons uk )to assistants and others and carry on smiling it does help :smile:

#16
Thanks for being so frank with sharing your experiences. We're really hoping that our awareness campaign will help the public understand the different ways Parkinson's can affect everyday life.

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

#17
Hi everyone.

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.

#18
Hi all,

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:

http://bit.ly/12gNa0u

#19

Wish people realised that behind the rather flat face there is an intelligent thinking human being .


#20

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 .

 

                                                     FedMcGrumpy