Parkinson’s: A global view


Bob Kuhn

Bob Kuhn and Parky, his WPC 2013 mascot, take a break at the top of Machu Picchu Mountain in Peru

Over the next few issues of e-Parkinson Post, we will feature an interview with each of the Canadian Ambassadors for World Parkinson Congress 2013. The Ambassador’s role is to generate excitement about WPC 2013 in Canada and around the world.

First up is Bob Kuhn, a Vancouver lawyer, writer and speaker, diagnosed with Parkinson’s in 2006 at age 53. Bob recently completed a Round the World trip in 80, well actually 79, days.

Why did you answer the call to become a WPC 2013 Ambassador?

I was moved by WPC 2010 in Glasgow. I found that the relationships I formed there were particularly meaningful. They gave me a real sense of purpose and a better feel for the Parkinson’s disease community, which includes researchers, clinicians, therapists and people of all types who are committed to helping people with Parkinson’s. I had done a fair amount of speaking about Parkinson’s but nothing on an international scale.

Was the Round the World trip your idea?

I had planned to do a Round the World trip for some time; however, I’m not a sightseer, so having a purpose or theme helped define the trip for me. I was interested in meeting people who are part of the Parkinson’s community around the world, especially in some of the developing nations where they don’t have the kind of facilities that we have. I wanted to get a sense of what it’s like for them to have Parkinson’s. What were the differences? What were the similarities? What were their stories? At the same time, promoting WPC 2013 in Montreal was a natural. It came together very well.

The title of the tour was Shake up My World, which had a couple of meanings. The serious meaning was that I expected to experience Parkinson’s in a way that I hadn’t before, outside the context of North American, European or western culture.

We call it the World Parkinson Congress and I guess in one sense it is. However, we don’t get attendance from huge sectors of the world’s population, primarily because of economics but also due to a lack of awareness. I wanted to see what might be possible, in terms of inviting, including and relating to people who otherwise might not come to Montreal.

Where did you visit?

Fifteen countries: Peru, Chile, Argentina, South Africa, Rwanda, Kenya, Ethiopia, Kuwait, India, Thailand, Malaysia, Singapore, Australia, New Zealand and Fiji. These were all places I had never visited before. I met with people with Parkinson’s in all of the countries, except two, Peru and Malaysia.

Which encounters stand out in your mind?

Let me tell you about two.

The first was Rwanda where I went to the country not having any contact set up. I had tried for months to make contact with someone who was part of the Parkinson’s community but nobody knew anyone.  As it happened, I was asked to speak about my trip at a church one Sunday. I explained I was searching for people with Parkinson’s. After the service, a young woman came up to me and said, “My father has Parkinson’s and I would like for you to come and see him.” I had no idea what I was getting into. I said, “Sure, I will, as long as he wants to see me.”

It turned out that the woman’s father was a doctor, 67 years old. He had been diagnosed with Parkinson’s two years prior. After his diagnosis, he quit his practice. He shut down his social engagements, isolated himself from all of his friends and basically retreated to his house to drink alone. He admitted all of this to me. He was very depressed and was not engaging in life at all.

We had a long discussion about the disease. He hadn’t spoken to anybody else about his experience with Parkinson’s since he had been diagnosed. He appreciated having someone there just to listen, someone who had an understanding of what he was going through and how he had been devastated by this disease that had taken away his pride, his professional standing, his sense of purpose.

It made me realize something I experienced on a number of occasions, not just this once, that people feel very alone with this disease. It made me aware that the relationships that develop in the Parkinson’s community are critically important to dealing with the disease, having someone to encourage people, to give them a sense that they are not alone.

I challenged the doctor to see what he could do to form an organization in Rwanda that would maybe alleviate the kind of circumstances he had faced so that he could find a purpose in that and also assist other people. He was a doctor and he didn’t know anybody else who had Parkinson’s. It was really quite ironic.

The other story is quite different but has similar themes.

In Mumbai, India, I met with psychologist Dr. Maria Barretto (Coordinator, Parkinson Disease and Movement Disorder Society in Mumbai). She is a sparkplug in a country of 1.2 billion people. She helped develop the Parkinson’s work in Mumbai by developing groups that can get together for the purposes of therapy of different kinds. She has put together a team of people who are giving their heart and soul to the huge community of people with Parkinson’s, and getting people out of their homes and into groups where they can help support each other.

She gave me an inside look at what it’s like to have Parkinson’s in a developing country where medications are difficult to obtain and then only at high cost, where neurological support is not plentiful and where the culture, itself, works against support groups. People self-isolate not only due to the nature of the disease but also due to a culture that says the family will take care of you. There’s no other support system. People with Parkinson’s tend to stay at home. They’re out of sight and out of mind, so there’s little Parkinson’s awareness.

Most of the developing countries I visited had little public awareness of the disease. I asked dozens of people, “Do you know anybody who has Parkinson’s?” They would say, “No.” Then when I talked to people with Parkinson’s disease, I realized it’s because they don’t circulate. They don’t have celebrity spokespeople who could make Parkinson’s better known.

These encounters helped me see that relationships are a key factor. WPC is about developing relationships. It’s about information and encouragement from a medical and scientific point of view, but it’s also about relationships. It’s about the community, itself, looking at ways to make life better.

Did any of the people you met plan to attend WPC 2013?

Virtually everybody I did meet wanted to attend. I got the sense that they want to be part of the international, global community of Parkinson’s, but the economics often dictate otherwise. That was the biggest impediment. It’s a long way for somebody to fly from India to Montreal, then pay for accommodations and so on. It’s prohibitive for many of them. Quite a few of the people I met didn’t know what World Parkinson Congress was but the ones that did would say, “That’s just too far away and too expensive for me.”

I tried to encourage them by saying, “If you’re willing to come maybe there are other avenues we can explore to find ways to support people from developing nations to attend.” I think they have a tremendous amount to contribute. They can add a whole context that the developed world has, in large part, ignored when it talks about Parkinson’s disease. We talk about it in a context that’s completely different from theirs.

How has the trip changed you?

It has shaken up my world in many different respects. It brought me to a greater realization that relationships are a key factor in developing global awareness of Parkinson’s. You don’t influence a whole society or even a community within a society by ad campaigns. You influence them one person at a time. Just travelling to meet people where they were, and being interested in them and wanting to know what they were dealing with, gave me credibility with them. I became friends with people after a very short time and these are relationships I will continue.

It also changed my perspective about how we might be able to assist people in developing countries by approaching them, listening to them and finding out what their needs are, then assisting them in ways that meet their needs. If we care, we need to listen more.

As well, I think there’s a need for everyday heroes around the globe, people who can be portrayed accurately as coping well, dealing well, thriving even, despite the disease that we share.

What’s next?

I have come back with a truckload of not just memories but also ideas and relationships. It’s taking me longer than I thought to draw even tentative conclusions. I think there are many ways in which western culture needs to consider what it can do for the rest of the world to make the Parkinson’s community more inclusive and truly global. That’s what I want to see – a truly global World Parkinson Congress where we work together as a community that has representatives from the whole world.

What would you like for others to take from your experience?

It comes back to the idea of everyday heroes. People shy away from that as a label but it is a form of being an ambassador. All of us who have Parkinson’s are being watched for how we deal with the disease. We are, in fact, silent mentors, even if we don’t intend to be. We need to be aware of that and do what we can to encourage people with the disease to live well. That’s the personal theme of my blog, Positively Parkinson’s. How can we encourage each other? How can we represent each other in a way that is positive and that gives hope, purpose and significance to a life that has been seriously affected by a debilitating, degenerative, incurable disease?

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