So World Parkinsons Day came and went. It was massive...... Failure. If we elect to have these focus dates then surely the charities, health care industry, manufacturers, carers and patients should unite with one clear easy useful message. But no, the day fades with a load of well meaning thoughtful images and videos that have low impact and are supported by family and friends who are already signed up to the cause. This month we have at least two other major illness awareness days and dilute the impact of the previous.
I don't have the answer but surely we could do better?
If we paid Ed Sheering to do one advert we would reach more people in 10 minutes than we do in 10 months. What would we say? Well if it were me I'd say ' if you know someone with Parkinson's disease ask them if you can get them a pint of milk'
Why? Because whilst everyone spends billions trying to find better medical solutions a simple cup of tea and some company is sometimes all we need.
I like the punchy 'keep it simple' & I agree with your observations about the day. I feel at a disadvantage in some ways as I am not yet ready to join a PD group & it is therefore not appropriate for me to criticise what groups in my area do/don't do. I am not aware of any organised activities in this part of the West Midlands: if there were any then they did not get much publicity.
I decided that as an individual my efforts would be better directed at raising awareness of PD rather than fundraising so I had 100 sashes printed in our blue on white 'PARKINSON'S
cure it now'
The wording was kept to 20 letters as this was the cheapest rate. At each presentation I made I 'dressed' members of the audience in sashes as they contributed eg by asking/answering a question or sharing an experience. I was surprised how many people wore sashes by the end of the sessions & by the positive feedback from participants - whether or not they wore a sash!
As I collected them in I asked for the postcode of the recipient as this can provide information for further research & analysis. I still have 100 sashes & requests for over 70 to buy at £5 each.
I know other members of this site have organised small-scale events for similar reasons so perhaps we could all share? By the bye ....a Scottish lady suggested that the sashes would look good at their dances especially Burns' night.
In the UK there is a Parkinson's Awareness Week 20-26th April which is always covered by the media. Lots of branches around the UK are holding events. Wales have a theme of Strictly Parkinson's this year..... .look on the Parkinson's UK web site.
Hi Coleen. I know you might think that what I am about to say is RUBBISH!
But the simple fact of the matter is that there is still NO CURE FOR PD!
However! There is something we can ALL do to make our Pd lives a lot easier!
We should all join together and ENCOURAGE EVERYBODY WITH PD TO DO REGULAR ENERGETIC EXERCISE.
I know there are many who are not in the condition to be able to do meaningful exercise, but the best way we can have an effect on PD is to nurture the NEWLY DIAGNOSED PATIENTS and persuade them to read Dr Norman Doidge's book, "The Brain's Way of Healing". In this book you will see in chapter 2 how fast walking can change the way the brain works.
If we can all do this, then Pd will start to CHANGE FOR THE BETTER!
John I'm the first person I know who said publically there will be no cure. Improvement in treatment to ultimately allow us to live symptom free is my position. I'm simply saying can't we try and do something different ?? I can ask 20 people what did you do for WPD? Zero the same group who threw a bucket of cold water for ALS or who knew of it? Rest my case
Hi Coleen. Do you have Pd? If you do, are you content to accept that the best we can hope for is to be on medication that keeps us symptom free?
Why should we allow this to happen? Do we not realize that medication is fast becoming unaffordable to the majority of people?
It only needs a few people to go against the 'popular' belief that drug companies are looking for a 'cure' for Pd, and that cure is just around the corner. IT ISN'T! And it never will be!
I meet rejection at every turn. I meet a stone wall with every organisation that is funded by the drug companies. They are the ones that we think are on our side, but THEY ARE NOT! How can they be if their funding comes from the drug companies. Just the threat of withdrawing that support is enough to get them to toe the line.
If we are to break free of this we have to take a STAND!
I know that exercise is not popular, but if it is the ONLY THING that will get us free of Pd movement symptoms then surely, we can make up our minds to just DO IT!
Dr Norman Doidge pointed out that the lack of dopamine in the brain not only makes movement more difficult it also takes away our will to do things to help ourselves. But nothing can take away that 'FEEL GOOD' feeling we get after having done some exercise.
We can all do exercise, even when we don't feel like it and when we feel so exhausted that movement seems impossible! I know! I have been there! And I am not ABNORMAL! I am just an ordinary guy who has been lucky enough to find out that FAST WALKING is able to REVERSE THE MOVEMENT SYMPTOMS of Pd.
I am MEDICATION-FREE! Isn't that worth fighting for?
With respect John this thread has nothing to do with promoting your book or exercise or personal views about drug companies. Perhaps you could share what you or your colleagues did for world Parkinsons day and how it went?
Hi Hikoi. We cross swords at every turn, for which I am sorry. But you ask the question of what I did on World Parkinson's Day. The answer to that is that I did the same on that day as I do on EVERY OTHER DAY. I broadcast the news that THERE IS SOMETHING WE CAN ALL DO TO MAKE OUR LIVES EASIER!
I communicate regularly with hundreds of people all over the world with news articles of things they can all do to make their lives easier. What do you do in this regard?
This constant talk, questioning this or that medication, is just a waste of time and effort, because none of that medication does anything to SLOW DOWN THE PROGRESSION OF PD.
Whereas EXERCISE DOES!
I don't care if I never sell another book, but it is the only way I know to get this knowledge out to patients.
I am planning to go to several countries, across the globe, at my own expense, to SHOW PEOPLE HOW THEY CAN ALL WALK PROPERLY, no matter how badly they walk, as long as the cause of the shuffling and freezing is Pd.
That is how serious I am about helping others!
I will be going to Europe and the USA and Canada to do this. Hopefully, a small admission fee will recover some of the costs involved, but that is a risk I am prepared to take.
I spend my whole life working towards CHANGING PATIENT'S ATTITUDE TOWARDS THE WAY THEY TREAT PARKINSON'S DISEASE!
I do not want to appear to be aggressive on this issue, but how many people can claim to have done as much for PD as I have? I do not charge a cent for what I do! I do not keep a record of all the people I have helped, but it is many. I do not do it for personal glory, I do it because I BELIEVE in what I am doing.
I'm sorry you see it as cross swords. Guess I have heard the same message for over two years and I react to yet more of the same. I think many of your statements are based on wrong assumptions which I have tried to discuss in the past.
I'm grateful that my experience is in total contrast to what you describe and exercise is at the forefront of every treatment for PD where I live, my neuro dept funds gym membership for anyone in the city with PD such is their belief in physical activity. This they have done for many years.
I look forward to hearing how your Europe/America trip goes and will leave this now, this platform is all yours.
Thanks Hokoi. I am not looking to fight with you, or anybody else on this matter.
I can't get it over to you that ALL FORMS OF EXERCISE have not been proven to positively affect the progression of Pd, and therefore any advice given about most forms of exercise, other than fast walking, has no proven positive affect on Pd.
Why are neurologists not giving out the advice to patients to start doing fast walking? It is not my invention. It does not belong to me personally. I get no benefit from people doing fast walking. I want this to be public knowledge for the sake of PATIENTS!
It is amazing how differently we see the world… and John Pepper.
I shall take this opportunity to thank John for his book, his thoughts, his enormous work to control his own symptoms and sharing his experience with us his fellow PWPs.
On my bad days he is an important motivator to make me go on fighting. If he can do it, I can do it!
I was diagnosed 18 years ago, I was 52. Not one neurologist recommended physical activity, on the contrary. There was nothing you could do but hope for a cure or at least slow progression. I never accepted this. I was used to exercise regularly and have never stopped doing so. PD progression has been slow. I am medical doctor. Usually I do not give this information on this kind of media. Experience as a PWP counts here. I just want John to know he has a true fan even among physicians. Sad that you need a PD diagnosis to realize what is good or bad for you.
You are right, even now in 2015 neurologists often avoid emphasising the importance of using those bones and muscles.
John, is Europe on your travelling agenda? Let us know about your plans.
Hi Vadehavet. Yes I plan to come to Sweden , hopefully in July. I am going to Canada in September. My plans are not yet complete and would welcome any requests that I could possibly fit in. Please contact me on my website - reverseparkinsons.net.
I think we may agree on many things including the absolute importance of exercise. I expect that 18 yrs ago at your diagnosis this was not recognised but I believe it is universally recognised and accepted now hence the multitude of pd exercise organisations. I do have difficulty accepting that a person with no response to levadopa medication has idiopathic parkinsons.
You and John Pepper obviously have had discussions before. I seldom read or write here so my knowledge about your disagreement is scarce. To make this short. I am sure that John Pepper has PD, he has all the symptoms. He is not cured, as he himself has mentioned again and again. I suppose you read the books of John Pepper and Norman Doidge. I see John Pepper as a person who has managed to control his symptoms. He gives us the opportunity to try his way of getting better, and we refuse and sometimes attack him.
PD is a terrible disease. Too serious to manage alone, sharing is necessary. Why not share it with people who sometimes give you hope and motivation to go on fighting?
I think what some users on this forum are trying to say is.
All exercise and no change of subject makes John a dull boy.
Lets have a bit more variety. Your life history must have lots of interesting things in it that you could tell us about. that are relevant to PD of course
Since you enthusiasm leads you to tell us about the exercise thing so often, I have stopped reading as much as usual of your posts. as I expect little departure from the usual theme. Come on John suprise us
Thanks Pete. I don't mean to be such a bore, but Pd is a very serious subject and I am passionate about trying to persuade others to try something they might not feel like doing.
I had an email yesterday from a lady who was very badly affected by freezing. She had had DBS and that hadn't helped. I met her at the meeting where Dr Norman Doidge addressed a Pd support group in Cape Town.
This lady could hardly be heard and she was desperate for help. I held her arm and spoke to her and told her that she really was able to walk properly if she just followed what I was about to tell her.
Cutting a long story short; she did walk with me, very fast as well, all around that hall. I did not see her for several months after that, but when I did, she was even worse than when I had first met her. I showed her again how well she had walked previously. She then started to believe that this was really true. Since then she has practiced and practiced.
She left Cape Town two years ago and now lives in Norway. This email arrived out of the blue, telling me that she had just walked around a 3,2 kilometre lake with her partner, in less than an hour! She has done this four times now, each time a little faster.
I get quite a few letters like that now, from people who have turned their lives around! You can see from this that this has made me very keen to help even more people.
I apologize for my behavior and will try to forget my enthusiasm and be a little lighter in future.
John, I know your heart is in the right place and you care about others and your motivation is not to profit from the sale of book and you are trying to spread the gospel of exercise according to John which you believe in. But you must be able to see that changing the subject or taking over an existing string is detrimental to the cause and terribly frustrating for the originator. Once a week or two just start your own string .
Hi GymBag. I am an old man, who does not understand exactly how these things work. I get these responses and articles sent to me and I respond, thinking that this is what it is all about. I have posed many questions about my Pd history and the way I have gone about dealing with Pd. But I can't keep posing the same articles.
I am passionate about exercise and what it has achieved for me. I am also passionate about what medication does that is so BAD for patients and how serious the SIDE EFFECTS are.
This does not make me very popular with the medical profession or the pharmaceutical industry. However I am on OUR SIDE not theirs.
I go to regular SUPPORT GROUP meetings all over my country to preach this message and to show people how easy it is to walk properly by getting used to using their conscious brains to control that movement.
You will not believe how incredible this is! But do you know what? Very few of those patients, who have been shown how to do this, then carry on practicing what they have just learned!
It is amazing to me that very few of us is REALLY INTERESTED IN DOING ANYTHING TO HELP OURSELVES!
They would rather continue to take the pills, even though they don't do them any real lasting good!
Yes I can, Exercise hurts, and some people are too far into PD to be able to do it and many must have their medication or they will be paralyzed. I admire your devotion and determination. Do your work old man . Spread the gospel according to John.
colleen, sometimes I feel you have become very bitter of having parkinsons. By making little of our efforts to spread the word about PD by describing it as a failure is very dismissive. I for one feel proud that myself and a fellow parkinsonian may have educated a number of people regarding this disease with our efforts. No, true we didn't find a cure but we had over 2600 people across the world listen to us and I wouldn't say they all have the illness. so on average we may have at least a third of that number possibly gaining more knowledge and respect for the disease and in order to help find a cure will donate a few coins which will hopefully contribute for future research and when the time comes that they find a cure we can feel we contributed in some small way. Please stay positive everyone and keep chipping away, we have what we have, its hard work, its frustrating and soul destroying but unless you stay focused, cheerful and helpful to others in this world you may start to slide down a slippery slope. I for one am not going there so ill continue to stay as upbeat as possible, accept my illness, live with it , remain me for as long as I can and continue to support the cause.......
You totally misunderstand me. Which is so often my problem. Funny I think of myself as a good communicator it weighs on me when I get things wrong. I'm simply tying to say if our collectiveness were more aligned with one simple actioned based message we would have greater impact.
I think some problems may occur where the worlds of paid versus volunteer workers meet.
Big paid boss man - this bunch of amateurs won't all do as they're told I'm going to have to work around rather than with them.
Upstart volunteer - That big paid boss man has got as many people skills as a box of frogs. I'm gonna do what I want else go and do such 'n' such instead.
Ideally you want a "big" personality who commands the respect of most and who can drag all workers along in a wave of enthusiasm.
Enthusiasm is key but it still has to be built upon the foundations of good practice.
John, please try to contribute on message rather than steer it the exercise way each time. This is not about a cure vs exercise but about informing the public. Perhaps you could get some April 11th runs and walks going next year in your county. That way you could add to the message.
I think Colleen has a good point. The Parkinson's UK theme for Parkinson's awareness week in Britain is Up Your Friendly. Well, firstly, nobody I've spoken to knows what that means, surely the first rule of a good slogan. Secondly it makes me feel like a girl guide going round asking people to be nice.
I did ask what Parkinson's UK was doing for April 11th and the answer was getting ready for our awareness. week.
So, like many branches we have our own theme for the week (I'm still me) but would love to join in with an international groundswell of awareness raising, in-your-face activities and stunts next year. Parkinson's UK can join me if they wish!
we could try and have one main universal theme etc etc as you suggest but what do you hope to gain. The main importance has already been identified and that is the urgent need to find a cure. what we have to do now in whatever way we are able is to promote the need of funding towards research. I fall in the 'making people aware' dept as i'm no good at the actual 'doing' as in sponsored events or organising functions. but that's ok as long as i'm contributing something. I've come upon masses of people all over the world doing whatever they can within their community to aid research for PD and other diseases and thats only fair that each disease gets recognition. I don't really understand what more you hope will happen by doing what you suggest and how much more you will gain. I'd imagine if you could see how much money was collected across the world for PD research this month and how many people were better informed about the disease you would change your view on it being a failure. I know we all have our own opinion and maybe I have misunderstood but I felt l quite deflated after reading your post ........
My book went up on Amazon on the 11th, "If I Can Climb Mt. Kilimanjaro, Why Can't I Brush My Teeth? Courage, Tenacity and Love Meet Parkinson's Disease" by Nan Little. Hopefully this one person's point of view will help educate others and provide a sense of "Whew! I'm not alone!" for other PwPs. If you read it, please let me know what you think.
It's wrong to think that there is no cure. There is a new technique that allows researches to inject faulty alpha syncleuin factors in research rats through the sciatic nerve. It migrates up into the brain and produces pd. This is a huge improvement over previous surgical infusion allowing drug developments that could not only stop the degradation but reverse it. It is reason for HOPE!
Ok ok ok / so people didn't like my post about World PD day being a wash out. Fine I give in, I don't deliberately write posts to be depressing or to seemingly undermine hope. I simply wrote what I feel, and I still feel.
As I said in one reply for me nothing short of the ALS ice bucket and the impact that had, should do, and to be an example of how to get things right.
I've had PD as far as I know for 13 years. I still work, drive and play drums and table tennis.
For 7 years I was a PD ambassador, I have spoken to 12,000 people during that time about the condition and about patient needs. I have represented patients at a Neurology Summit in Florence; Been on TV and BBC radio for PD. I was editor of the young persons magazine for PUK for 12 months. This is not to me me me me me but to be clear I am truly trying and doing my best. I am over sensitive of course I do have PD
I do my bit. I am not negative. I am supportive.
I don't have the answer I said that. I simply said i don't think we've got it right.
Ok ok ok / so people didn't like my post about World PD day being a wash out. Fine I give in, I don't deliberately write posts to be depressing or to seemingly undermine hope. I simply wrote what I feel, and I still feel.
As I said in one reply for me nothing short of the ALS ice bucket and the impact that had, should do, and to be an example of how to get things right.
I've had PD as far as I know for 13 years. I still work, drive and play drums and table tennis.
For 7 years I was a PD ambassador, I have spoken to 12,000 people during that time about the condition and about patient needs. I have represented patients at a Neurology Summit in Florence; Been on TV and BBC radio for PD. I was editor of the young persons magazine for PUK for 12 months. This is not to me me me me me but to be clear I am truly trying and doing my best. I am over sensitive of course I do have PD
I do my bit. I am not negative. I am supportive.
I don't have the answer I said that. I simply said i don't think we've got it right.
no worries colleen..of course we're all on the same side. you seem to have had a lot more involvement then I so I bow to your experience. Maybe we could demand a little more involvement as you say from health providers, pharmaceutical providers etc possibly later this year, maybe see can the date be moved to some other time so it doesn't conflict with other illnesses and gather a few ideas from others on this site. between us we might come up with a brainwave. we'll all have to think
long and hard.....not an easy thing with PD....!!!
James Parkinson's Birthday, 11th APRIL, seems a good anchor for this Awareness Raising, but we need to start now if we are to make a change.
I have a feeling that people living with Parkinson's are just people though. Cultural, religious and historical barriers are all working against the occasion becoming unified. Add fundraising into the mix and it becomes even more territorial.
So, nobody mention fundraising, let's get the awareness juices flowing. Who's going to start a new positive strand and collect example of what has work well in the past and are simple enough for all people to take part in?
Hello H-H. The dilemma seems to be having too many targets at once. To raise lots of money for research into finding cause and cure - we need to emphasise how bad PD can get. That is difficult to do when you also have to consider the effect of that sort of publicity on newly diagnosed PWP. Raising funds for specialist careworkers for immediate needs is another competing aspect, and the promotion of excercise etc is yet another. And then there is the issue of public understanding and tolerance ...
One thing at a time maybe. Better put the kettle on.
I agree I think you are absolutely right. Too much emphasis is given to a cure. all I want is to take a little less levadopa be more mobile and enjoy life more. I'm with jon on exercise, what i need is a bully to take me to the gym at 8am (i drive but not at that time), make sure I do 30 mins of fast walking on the treadmill (so i don't fall over) and other exercise. take me home again. So when PUK say up your friendly they should direct people a bit more to find out how they can show their friendship and if you can't find a friend to do it for you to dedicate more funding to hire personal trainers. What I will get for free (in the UK at least thanks to our labour party founded NHS which I will be eternally grateful and never fail to VOTE LABOUR for) is DBS but have a nagging concern that it would be cheaper and more effective to have a trainer for 4/5 hrs a week.
sorry for the politics but i think this election is an important one for pwps.
Hi Hikoi. I assume you mean any refference, anywhere? The one I always refer back to is the one in Dr Beth Fisher's report to the 1st World Parkinson's Conference held in Washington DC.
Firstly I am not a person with Parkinson's (Ex-carer).
I have been Intrigued by every-ones comments and really agree with most, Especially Colleens.
I have helped run a Unity Walk in Luxemburg with the EPDA. I have met with Parkinson's Ireland/Move4Parkinson's.
I met up with Pan (Parkinson Action Network) in Washington 4 weeks ago and spoke to a Congressman called Bilikaris who has set up a Caucus in there Congress do discuss Parkinson's funding and research.
I went to a symposium in Virginia.
I am in New York about to go to the apda head office,later to meet Rock Steady Boxing in Brooklyn.
Tomorrow a meeting with MJFF and a visit to THE PDF head office.
Meeting the chap behind My Angel,My Hero project Friday.
Parkinson's Unity Walk in Central Park on Saturday.
Yesterday I wore a Move4Parkinson's T-Shirt around New York shopping sight seeing etc..
Every American said "you here for the Unity Walk", doubtless numbers !!!
I think it is OUTRAGEOUS that PUK did nothing for World Parkinson's Day !!! No-one will complain to them though,not in writing.
They will say something over the phone or in an email. What good is that !!!
Colleen is right in that World PD day and awareness week/month only covers those already reached.
As some-one said go to the PUK Website :- Not read it in the local paper (an example).
I have sent out numerous emails to the Parkinson's Nurses in the UK about running a PD Awareness stall in jun/jul/aug/sep to my amazement one emailed back saying pd awareness is this week as though no other awareness in the rest of the year matters !!
In the UK awareness week is always placed around the London Marathon happening on the Sunday of that week,so it is relying on the London Marathon.
Awareness means just that, but to the general public NOT those already in the know !!
Awareness is also a year long process NOT JUST ONE WEEK OR MONTH IN A YEAR.
EVERY-ONE in the circuit of PD will say great things and I praise the lady with the sash idea etc :- But the reach needs to go further to the general public.
Colleen is right in what she says, but maybe the thinking should be to "change" what we do.
Example :- All the branch and volunteer support workers with-in PUK should wear a PUK T-shirt when they do there work :- a year full of t-shirts advertising PD in the uk.
Cost = 0
We must remember that those promoting PD might have PD so what they can do may be small but is VERY IMPORTANT !!
All those PROMOTING PD ARE BRANCH VOLUNTEERS ? WHERE ARE THE PAID WORKERS OF THESE CHARITIES ?
Across my travels on speaking to people "what is world pd day ?"
I ran a campaign on facebook and this forum saying wear a pd t-shirt on world pd day where ever you live in the world on the 11th April.
All of you that have written comments :- What awareness do you do in the rest of the year ?
Can you remember what PUK's Campaign was to years ago ? Three years ago ?
On my travels I am asked shed loads of questions from drugs/nurses/what other people do/ideas to run etc..
Not country wide but Globally we will be better off !
I really like your last sentence. I would change it by making KEEPS plural... KEEPS.
PARKINSONS KEEPS IT SIMPLE. this entirely changes the meaning. Rather than be instructive on how the "message should be delivered..." this is all about WHAT PARKINSONS IS (to the person who has it). Life changing. It refocuses you, its forever. Life is not forever. Nothing should be made overly complex. Keep focused on today. Get through. Make the most of it. Get the task done, don't elaborate. Get up the steps or through the door.
What people need to know most is not how you die or when, but how you live. What its like to have Parkinsons. From the inside out. This "simple" phrase does it, in a noble way.
If we could just keep an idea or suggestion string on subject and thoroughly discuss that subject pros and cons and experiences without deviation to other subjects and long standing disagreements we might actually accomplish something. We should all be cognizant of the fact that it takes effort and some openness to start a string and subject and many here are silent and seldom if ever contribute, plus we all have different styles and different experiences and symptom severity.
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