This week has seen World Parkinson's Awareness day and, in the UK, Parkinson's Awareness week. I assume the aim is to make the general public - and the medical profession- 'aware' that PD is not simply 'getting shaky in old age' but is a complex and devastating degenerative neurological disease that affects people of all ages and can devastate lives. And also to raise 'awareness' of the very complicated drug regime that is necessary as the disease progresses. In this context I think we'd all agree that 'awareness' means knowledge and understanding. People's knowledge and understanding grows when they are provided with information that is clear, unambiguous and engaging. Oh, yes - and it needs to be high profile. If the only people who knew it was Parkinson's Awareness week were people living with Parkinson's that would be a bit silly, wouldn't it? So if we're going to have a 'Parkinson's Awareness Week' in the UK it needs to be a focused, attention-grabbing campaign across all the national media - just like the highly visible and therefore very effective campaigns run by, to name a just a few - Alzheimer's UK, The British Heart Foundation, The NSPCC . . . .
So, let's imagine that you have had young onset PD for 11 years, are reliant on l-dopa every 3 hours and are getting pretty sick of people assuming you're drunk , or not understanding why you can change in fifteen minutes from 'normal' to feeling and looking like death warmed up. In other words let's pretend you're me. Yippee you think, it's Parkinson's Awareness Week. Strange that I have seen nothing in the national media about it or any 'celeb' popping up to put the word about . . .but hey, I must have somehow missed it. Here's a good idea, I will visit the website of the society that exists to support us - the zingingly named PDUK who are organising the whole PD awareness thing.
And what do I find? I find 'Up Your Friendly'. That's all:- Up. Your. Friendly.
Words fail me. I have to believe, because the evidence is staring out at me, that someone in a senior role at PDUK actually sat down and decided that 'Up Your Friendly' was the best way to disseminate 'awareness' about Parkinson's Disease. Why? How? My mind is completely and utterly boggled.
There's only one possible response to the joker who foisted this on us: Up Your Game - unless you intend to make a laughing stock of the whole Parkinson's community.
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pen1
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I believe that there is no D in the abbreviation. Apparently some people thought that PD was not a disease because it is not contagious. So they wanted to be rid of the word disease. Anyway what have now is PUK (Parkinson's UK) With a small imaginative leap one can add an e to make PUKE.
For this and other reasons I am told that the re-badging or re-branding the PDS cost £46,000. Is there anyone who can confirm or deny this figure?
This seems to me to be tantamount to to a criminal act, something like misappropriation of funds. And if not really illegal then perhaps immoral will do. I can't imagine members of the PDS gladly giving that sum to this purpose even if they approved of the re-branding programme.
Over the past ten years PUK(E)! has had, to my knowledge, at least two major 're-branding initiatives, each of which has cost many tens of thousands of pounds . Anyone querying the justification for these massive costs has been told it is necessary to meet new 'targets' for fundraising.
I have not been aware of any information released to members which reveals whether or not those targets (which seem to be arrived at fairly randomly) have been met - i.e. whether the 're-branding' has been cost effective.
I have been aware during this that offers of (free) advice and guidance from PwP with relevant professional experience in marketing, PR, communications, national media etc who are concerned by the apparent lack of professionalism in the PDS/ PUK has been completely ignored by the society. And every year the 'Awareness' campaigns continue to sink without trace.
I couldn't agree more with your last paragraph. Is there nothing we can do to sort this sorry state of affairs out?
What makes it a Disease is that it is progressive. Conditions like dandruff or even depression are continuous and even if terrible stay the same unless there is appropriate intervention. No stopping the Disease yet. Let's pray a door out can be located.
Some are conditions such as stuttering, the condition Turell (sp) which I forget the name where a person shouts obscenities, deafness, blindness, there are myriad unpleasant dis-ease conditions not diseases is my take on it.
The following 2 entries are taken from the Oxford English Dictionary.
1. disease, n. View full entry c1330
...Absence of ease; uneasiness, discomfort; inconvenience, annoyance; disquiet, disturbance; trouble. (For long Obs. but revived in modern use with the spelling dis-ease.) ...
2. disease, v. View full entry c1340
...trans. To deprive of ease, make uneasy; to put to discomfort or inconvenience; to trouble, annoy, incommode, molest. Obs...
Looks about right to me; PD discomforts, annoys, incoveniences , incommodes, disturbs and disquiets me. It also makes me feel very ill. In my book that makes it a 'disease.'
Thank you pen1 for your Post about this issue. To allude to the previous Post, I am 73 yrs old, this is my tenth April with PD diagnosed (not early onset), Retired from a career in Market Research. I reside in the States.
This is Parkinson's Disease Awareness Month, it is important as stated to promote awareness of our disease among the General Public. Such awareness can influence the political process. Thus making a difference in the funding of research for PD, as well as the provision of supportive services both public and private for those with PD as well as Caretakers.
The second point was that awareness needed to be promoted among the Medical Profession. Really, that indeed says something about the Medical Profession. How does it work out that awareness of one of the Neurological Diseases with the highest incident in the population needs to be promoted? What is going on or not going on with the Doctors?
There is another population whose awareness of Parkinson's Disease also needs to be addressed. That is us, Parkinson's Patients themselves. One might wonder what is the problem, will all have been diagnosed. We have some form and degree of symptoms. Tremors. bradykensia, gait disorder, the list goes on. Obviously each of us who have PD are personally aware of our particular set of symptoms.
What is not provided to PwP is timely information about what is going on with the disease that is causing our symptoms. And how we can use this information to moderate the on set and severity of our symptoms! An example is posture. Think of your fingers. Hold your finger straight out. They are extended. Keeping your arm flat, pull your fingers down, they are flexed. When extended, the fingers are pulled up by a set of extensor muscles. Likewise, pulled down by a set flexor muscles. Posture is determined by a number of joints ....ankle, knee, hip and shoulder are the major ones. All are extended by their own set of extensor muscles and flexed by their own set of flexor muscles. Most everyone is familiar with this basic information about how our bodies are structured.
Question? Are you aware of how PD causes stooped posture? If not, that is too bad. This information would provide you the opportunity to have a major impact on the onset of mobility disability symptoms! Most PwP I run into, have no ideal about how PD causes poor posture, about what is going on. Or what one could do for themselves to remediate the problem.
Seems to me it is like the old Pogp Cartoon (I am 73)....'The Enemy is US".
Those of you, who have the information about what is going on, like myself, just happened to run across researching information about PD. That we are not provided such critical knowledge about PD is stunning. Makes one wonder who the Enemy is?
Information.....Striatum (structure in Brain) controls movement through muscles.
Needs supply of dopamine to work, decline in dopamine leads to a weakness mediated by the Striatum of the extensor muscles, but not the flexor muscles.
Joints normally balance each kind equally strong. If flexors stronger will pull down
joint, hence stooped posture.
Solution....from the day you are diagnosed, need to exercise to stretch flexor joint muscles (all the joints) and to exercise to strengthen extensor joint muscles (all of them).every day! Then "use it", Walk 1/2 hour per day. Go to a Physical Therapist for training in exercises.
You make a very good point about PwP needing information ourselves.My own GPs regularly tell me they know very little about PD . There is no one who oversees my complicated medication - the neurologist will only deal with specific PD drugs and would not for example prescribe anti depressants, saying this was the role of my GP, but she, understandably,was intimidated by the number of PD drugs I take - including the MAOI Azilect which terrifies so many- and watned guidance from the nuerologist - who would not give it. It was a similar situation when I developed vertigo. I dread to think where I would be if I had not been able to research this for myself and, because of my professional background, evalaute the information. Unbelievably I now 'tell' my GP what to prescribe as she says I know far more than she does.! What will happen when I am no longer able to make these judgements? I feel so sorry for those PwP who for whatever reason are unable to research for themselves and, crucially, are able to discern the valid from the snake oil. Ill people without proper support are very vulnerable and I fear that many PwP fall into that sad bracket. We need real support, not crazy slogans.
WOW BillDavid, what a great contribution, some very important questions raised. You got me thinking . . . I've joined the local YMCA here in Arizona and I am going to change my daily exercise regimen to focus on extensor muscles. THANKS !
Unfortunately , we have to be the TEACHERS . Trouble I find is that sufferers themselves cannot always explain all their symptoms whn asked . that's Parkinsons for you
I can recognise everything you have said in my husband as far as the joints are concerned .
I've just been on the PUK website forum and I wish I hadn’t. I saw the bears – what on earth is that about? A professional national campaign?? I think not
While there I came across the information that on October 24th last year Ian Duncan Smith in his capacity as Work and Pensions minister (i.e. the minister in charge of turning DLA into PIP and the woeful medical examinations involved) wrote in The Guardian, in respect of entitlement to DLA, that Parkinson's was 'recoverable'. Several members were incensed and posted on the forum and one organised a demo in IDS’s constituency. It also transpired that he would not accept, let alone respond to, any communications about this rubbish he was talking; he will only respond to his own constituents.
PUK was told all this. They appeared not to have known the article had been in the press (what does their press office do??) . Unlike other organisations they did not send any one to the demo; they did not issue a press release. A direct request for them to publicly draw attention to IDS's dangerously wrong beliefs about Parkinson's was met with the following response from one of the PUK forum moderators.
"Thanks for your post. Sorry there isn't a way for you to share your views directly with Iain Duncan-Smith. It must be incredibly frustrating. One way you could raise awareness and get your voice heard would be to share your story with the media. If this is something you'd be interested in, please let me know and I'd be happy to talk through how it all works. […*.]
We are continuing to work hard to highlight the devastating impact of the Government's changes by meeting with Ministers, asking questions in Parliament and getting media coverage. We will keep the pressure until the Government sorts out this shambolic system.
Best wishes,"
Can you imagine this being the Alzheimer’s Society response if IDS had made such a fatuous statement in the national media about Alzheimer’s?? He’d have been roasted! This wasn’t an off the cuff remark – the guy wrote it in The Guardian- the national media!! PUK should have been on his case within minutes of publication, demanding retraction and putting across the right information about Parkinson’s. The lack of initiative would be pretty pathetic in a bunch of 10 year olds – in a national charity it is utterly inexcusable.
How much longer are we going to let them get away with it?
*
I have removed the email address but am happy to supply it if anyone wants to contact the person at PUK who wrote this email.
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