200 years too long

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Image courtesy boardgamegeek.com

For weeks I’ve been struggling to write a piece that won’t be read as a depressing chronicle of living with Parkinson’s or as a condemnation against some in the PD world who repeatedly mask the impact of this disease with cheery affirmations. In particular, this April – Parkinson’s Awareness month -has oft times been more exasperating than usual as there has been an almost celebratory tone to mark the 200 year anniversary of the discovery of the disease.

I’ve produced a few drafts but nothing that I considered quite good enough.Too negative. Too grumpy. Too disgruntled. I couldn’t see how any of these would contribute or move things forward in a positive way.

Then, quite by chance, I received a copy of a blog from Jon Stamford in the UK.  Jon is a long-time advocate and researcher in the Parkinson’s community and our paths first crossed when, as editor of the UK-based publication On The Move, he published one of my articles – A Lesson for the Teacher.

Jon has consented to me sharing this insightful piece that I hope serves as a call to action in the Parkinson’s community. Please read it and share! If you’d like to read more by Jon, check out his website at http://www.jonstamford.com.

200 Years Too Long

Each year at about this time, we talk about Parkinson’s Awareness Day, Week, Month or what have you. And each year we hear the usual talking heads telling us that lots is already being done to make the Parky world a happy place. We should pipe down and be grateful.

That’s drivel. Complacent drivel.

That’s why I am slightly puzzled by the commemoration of the Parkinson’s Disease Bicentennial. In case you are unaware (and if you are, where have you been hiding?), let’s be clear what exactly that is. Parkinson’s disease as we now know it was first described by James Parkinson in 1817 in his “Essay on the Shaking Palsy” although it didn’t acquire the Parkinson’s moniker until some years later when Jean Martin Charcot generously ascribed preeminence on the condition to Parkinson.

Today especially, throughout the globe, neurological associations, patient groups, and charities are falling over themselves with invited lectures, symposia, conferences, monographs, webinars and publications marking this Bicentennial. The whole jamboree has the air of a celebration.

But what precisely are we celebrating? Surely not the fact that this condition has been recognised for two centuries yet still has no cure. Indeed, until 50 years ago, there were barely any symptomatic treatments.

To my mind, this is less a cause for celebration than for collective mourning. We, the Parkinson’s community, should not be proud that a neurological condition has been known for 200 years yet has no cure. This is a damning indictment not a ringing endorsement.

That we have no cure is a collective failure. It’s all too easy to place responsibility at the feet of the research scientists or of the drug companies. But this would be wrong. We patients must bear our share of the responsibility. Clinical trials fail for a number of reasons. Sometimes poor experimental design is responsible. Sometimes inappropriate statistical analyses are to blame. But as often as not, trials fail because of inadequate recruiting. And that one is down to us, the patients.

Our failure to find a cure – and let’s be clear, this is a failure – is the collective responsibility of the entire Parkinson’s community, from doctor to patient and from scientist to caregiver. We have all failed in some way to advance the field as far as we should have.

We have failed also to raise awareness of Parkinson’s in political and governmental circles. Hansard has recorded all the business of the Houses of Parliament for the last 200 years and, during that time, Parkinson’s as a health issue has not been discussed once in the Commons until this year.

On 6 March this year, Nick Thomas-Symonds, MP for Torfaen, raised the issue of Young Onset Parkinson’s Disease in an adjournment debate in the House of Commons, largely at the instigation of Spotlight YOPD, a charity founded to cater for the interests of younger Parkinson’s patients who feel largely neglected by the country’s major Parkinson’s charity. It’s hard to believe that this year is the first in 200 that Parkinson’s has been discussed at a parliamentary level. Hard to believe but sadly true.

We need to work harder to cure this illness. Parkinson’s will not go away until the entire community from caregivers and partners to pharmaceutical multinationals and research scientists pull together. Everybody has a part to play and, until we all play those parts, we will not see an end to this condition.

11 April 2017 is a day when scientists, physicians and drug companies will doubtless congratulate themselves on the progress they have made over the last two centuries. And, don’t get me wrong, we have made progress. But the truth is that we have not made the progress we want and need. Every year around a quarter of a million people with Parkinson’s die. And they die because we don’t have a cure for this illness. So 11 April 2017 is not a day to celebrate Parkinson’s disease. It’s a day for us to look at ourselves in the mirror, reflect on the human calamity of Parkinson’s and to renew our vows to beat this illness once and for all.

Jon Stamford

 

 

 

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4 thoughts on “200 years too long”

  1. Hello fellow English speakers with PD,
    I certainly wish I could share or supporrt the gentleman’s essay, but it sounds much too peevish and ungrateful for my tastes. And what possible difference would it make if PD had been mentioned in the House of Commons? Is that how you Brits mark progress? Like “Oh Nigel, we’re saved now that the MP from Feversham put in a word on PD.”
    No straw dog arguments for me, thanks. For instance, the gentleman’s point that 200 years is a long time to wait for a cure is bordering on the absurd. Has any neurological disorder ever been “cured’? Do we know how to prevent Alzhiemer’s or MS?
    If we want a heroic spokesperson to rally us, we have only to turn to Emma and her 365 video blog project. Now there’s courage, there’s a scrapper of the “fight them on the beaches” type. See even on of her vlogs and see who long you continue this whining and moaning aboout science somehow neglecting our disease.
    I will append Emma’s URL after I send this so as not to lose my way in cyberspace.

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  2. Hi Rob,

    Thanks for sharing this article. It is very frustrating. 200 hundred years is a long time to not see a cure. It is a difficult fight, and one cannot imagine what you and the Parkinson’s community has been going through. I have seen you through some tough stages and struggles throughout the years. A tough disease that should have a cure.

    Stay strong my friend. Easy for me to say I know, but you are an inspiration. Your determination and your strong will carry you through. You have a supportive family and you are needed. Stay positive my friend.

    Margarita

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  3. I’m only a year and a half into PD and I wonder about the effectiveness of so many separate organizations researching and fundraising around PD. Surely there must be much duplication of effort. Surely a single coordinating body could steam-line research and speed up progress towards a cure? Here in Vancouver we have the Pacific Parkinson’s Research Centre but Nation-wide there’s The Michael J Fox Foundation. Who to support? Who to look to for leadership?

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