Are WE, The People Living with Parkinson’s disease, READY for WPC 2013 in MONTREAL?

Today is the middle of June, 2013. In four months WPC 2013 will be history. Are we the Parkinson’s community across the world, going to waste this opportunity to show the powers of be, the researchers, the scientists and the world that we are all fed up living with this life changing debilitating disease for which there is no cure? Are we going to be complacent and sit back, listen and nod our heads while our bodies shake? Are we going to let the apathy that accompanies this devastating disease win?

I have been busy exercising with a group of PWP at my local recreation centre. Over the past 6 months I have seen some changes in PWP quality of life and I have seen progression of the nasty disease symptoms. I have had a chance to sit in on the local advisory board of my local PD Centre. Everyone in the room except the staff member was 15 plus years older than myself.There were 4 out of 15 people who did not have PD> Any mention of change was shut down as it might offend the Board of directors! I am 53. A two and a half hour meeting ,focused on going forward to help PWP in my community was a complete waste of everyone’s time. Complacent is how I can best describe it. Everyone was afraid of CHANGE. Is this going to happen in Montreal?

The dictionary meaning of CHANGE, ‘it may refer to the process of being different’. YES , we need to bring a  difference to Montreal! We need to change the directions of treatments, of medications, of healthcare methods for People Living With Parkinson’s.

I have been told more than once that Parkinson’s patients are the orphans in the healthcare system. A world renown Movement Disorder Centre of Excellence for Parkinson’s disease treatment in Toronto is being shut down by the Ontario government saying a team approach is too expensive. I will tell you my view point, we are complacent , we are vulnerable and we are apathetic. These characteristics make it easy for governments to shut down funding to the Parkinson’s community.They make it very difficult for PWP to soldier on.

I will refer to my blog on Where is the Movement? Where are we going? I perceive there is little hope of a cure for us in the next 10 years unless we as PWP move on to being activists and create a movement for change. This has to be a global commitment and it has to be powerful. It is time for influence, change and possible cure. We must influence our medical professionals, the scientists, our governments, our agencies and the policy makers. The ‘we’ is US the people living with Parkinson’s disease. Activists seek goals in civil and political spheres. In this case the activists must be PWP.

Yes so there are only 4 months left. As I said before, even under the most difficult circumstances it IS possible to achieve change. We need to go BACK to the BASICS. Activists can become social movements if we work together. We need to honour the contributions of our gifted activists who have been working tirelessly over the years. We in the PD community can learn from others impacted by chronic and debilitating diseases. We need to bring our fellow advocates together to catalyze change. Our voices need to be heard and we must question the status quo.

So what is our plan for WPC 2013? Change is possible but how do we create change? The voices of advocates must be heard and we must question the status quo. Alternatives must be presented that are possible. We need strong leaders to work with governments and federal agencies who produce policies and strategies with clear goals which will hold them accountable. The movement as a whole has to have POWER.

WE MUST inspire people to a level of civil disobedience, PWP MUST GET THE ATTENTION OF THE STAKEHOLDERS IN MONTREAL. WE ARE FIGHTING FOR OUR QUALITY OF LIFE AND OUR FRIENDS WHO HAVE PD ..I think we are motivated enough to get attention. GETTING ATTENTION REQUIRES PEOPLE TO FEEL UNCOMFORTABLE, WE AS PLWP ARE UNCOMFORTABLE EVERY DAY! WE MUST MAKE THE DECISION MAKERS UNCOMFORTABLE, THEY DON’T NEED TO FEEL SAFE, WE MUST CHALLENGE THE STATUS QUO WITH NO COMPLACENCY.

It is now time to get this movement going! I cannot do this by myself. I have some ideas. I need to know who the PLWP who are planning to attend WPC 2013 in Montreal. Email me please. We are all stronger together. Join me, I don’t want to wait any longer.

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I am physiotherapist diagnosed at age 47 with Parkinson's disease. Volunteer in my local community with parkinson specific exercises for PWP. Founder of ParkinGo Wellness Society, www.parkingo.org .Tireless advocate for better quality of lives for people living with PD across the global community.Ambassador for www.parkinsonsmovement.com and a Global Ambassador for WPC2016 Portland Oregon Sept 20-23

Posted in Parkinson's disease, Uncategorized
4 comments on “Are WE, The People Living with Parkinson’s disease, READY for WPC 2013 in MONTREAL?
  1. Thanks Jilly for being the voice crying in the wilderness. Forgive me but what I am seeing are organizations and governments that are too busy competing with one another for perceived power and/or position than to work together for a great cause–a cure for parkinsons.

    The right hand doesn’t know what the left hand is doing–anywhere. If we could only capture the momentum of Manhattan Project era days when the world worked together, day and night, until the atomic bomb was built that ended WWII. A cure can be had quickly but it will take an effort of epic proportions with mankind working in one accord to see it come to fruition.

    I’m behind you 100%.

  2. Maureen Thun says:

    Fabulous job on this article – so proud to be a PWP along side you! I will be there to stand beside you. Xoxo.

  3. You betcha MO , I know you will be there,,I follow in your footsteps with your tireless advocacy for PWP in Ontario and Canada. You are a big force , See you in Montreal. I am counting on you.

  4. Janet Irvine says:

    Hi Jill from another BC resident! We have spoken before. Nice blog! Posting about WPC 2013 Montreal is a great idea. And a “Movement” is definitely long overdue. My PWP husband, who was diagnosed 18 years ago, is planning to attend WPC and I hope to, as well.

    My husband’s case includes the familiar story of a delayed diagnosis. So … in my role as a spouse, I can say that I have been living with Parkinson’s for probably 20+ years (both before and after his diagnosis). My Dad (deceased), was also diagnosed and took Sinemet, after major head injuries due to an auto accident.

    You wrote that you had a chance to sit in on the “advisory board” of your local PD Centre. Was that the Centre in Victoria? Did you attend a meeting of the Board of Directors?

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