Dateline Glasgow, Scotland: Team Parkinson is represented at the World Parkinson Congress - 10/20/2010

After months of agonizing over whether or not I should go to the World Parkinson Congress in Glasgow, I submitted a proposal to the Congress for a “poster” session on what we do at Team Parkinson.  I wanted people to know how our efforts to raise awareness and funding for research have led to an even more important outcome: helping PD patients and their families take control over this condition and improve the quality of their lives.

Most of us have difficulty in exercising regularly just because ‘we should,’ but given a target and a deadline and a team to train with, most of us can gear up for a specific event.  Team Parkinson has successfully used this philosophy for over 10 years now, and it has provided some spectacular feel-good stories.  I have been given the wonderful gift of partnering with Edna to lead Team P, which has kept me focused on one short –term goal after another.  This has helped me maintain my capabilities of daily living for over 30 years with the disease.  I wanted to go to the World Congress to share my success story with other PWPs.  So, I put together a poster abstract and sent it to the WPC organizing committee.  It was accepted and I was therefore committed to go to Scotland. 

It took me several tries to get my poster into a presentable condition.  My tendency to write everything out in tediously long sentences is not conducive to poster-making.  I needed to shift my normal thinking from paragraphs to bullet points, and at the same time, learn how to construct a poster and photos in Word.  Most people, I found out later, would have done it in Power Point.  Oh well…But eventually, between me and the Kinko’s guy, we got my bullet-pointed, photo-enhanced poster on a piece of three foot by five foot paper, then rolled it up and stuffed it in a tube for transport.  You can probably imagine how awkward it was to hand-carry a 6-inch diameter by 3-foot long tube through the airport and on and off the airplane.

Finally, airline ticket and hotel information in one-hand and poster tube in the other, I left for Glasgow.   It was a long flight to London and an immigration check and change of planes in Heathrow before reaching Glasgow midday on Monday, September 27th.  I was too excited to just stay at the hotel, so I walked and wandered the streets of the city for several hours that afternoon.  I couldn’t set up my poster until after 7:00 PM on Tuesday, so I set out to see if I could play a round of golf – I was in Scotland, after all!  I took a train a few miles east to where the map showed a public course, but discovered that it’s impossible to rent a set of golf clubs at the public or municipal courses in Scotland.  So, I got back on the train headed in the opposite direction and rode it to the end of the line just for some sightseeing.  Altogether, it was a four hour train ride for just a few British Pounds.

That evening was the World Congress Opening Ceremony, and it was spectacular. The speeches, even from the politicians and the sports stars, were fine.  And the two Parkinson’s patients who spoke were fabulous.  Tom Issacs and Bryn Williams impressed the heck out of me with their wit, and their willingness to speak for the entire community of patients worldwide. We were also shown the winning videos from the competition held just prior to the Congress. The two winning clips were by a poet and a dancer.  I was especially impressed by the dancer.  Then we were treated to a stirring Bagpipe concert and piped over to the exhibition hall for the first look at the exhibition.  It was a grand opening for the event, no doubt about it...

Walking back to my hotel from the ceremonies that night, I noticed a couple of young men hanging out on the street corner just a couple of blocks from my hotel, and just a block from the large Strathclyde Police Headquarters, which sat opposite my hotel. I watched as a new luxury –type car pulled up alongside the young men, the driver’s window came down, and a wad of folded money was passed out while a small packet was passed in. It seemed obvious to me that a drug deal had just taken place within sight of the police station.  I thought it a bit strange to be so brazen about it, but I’m not oblivious to the fact that drugs play a major part in society.  After all, where would I be without my four doses of drugs per day?

The next morning I got up, had breakfast, and headed off to the Expo center once more.  I had a long list of seminars and sessions I wanted to attend.  I hardly gave myself any free time at all. There was a light rain most of the day on Wednesday, and I didn’t mind walking back and forth to the hotel and Conference center two or three times that day.  I saw and talked to a great many people during the day.  Quite a few came by the poster even though my “session” was not scheduled for presentation until lunch time the following day.  By the end of the day I was quite tired.  But back at the hotel, no matter how much sleep I may have needed, my eyes simply wouldn’t close. I was suffering from a severe case of jet lag, I suppose.  I was totally dyskinetic and flopping about on the bed from midnight to almost 3 AM. Occasionally I could hear some loud voices from the same corner I‘d noticed the drug deal the day before.  Eventually, I could stay in bed no longer and went down to the lobby to check my e-mail on the rental computer.

Thursday was an even better day for the Conference.  I saw a great many of my friends from the Parkinson’s community in the US, and I made new friends from other parts of the world as well.  My poster was well attended throughout the lunch hour, and it was very nice to have The Davis Phinney Foundation poster just across the cubicle from me, because we drew the same or at least similar audiences. Once again, the actual seminars were excellent throughout the day.

That evening there was a dinner for all the people involved in developing the Congress from the international organizations.  Robin Elliott of the Parkinson Disease Foundation in the US was the host of the affair.  After Robin’s presentation and a dinner upstairs in the Science Museum, there was a free-flowing social hour or two.  As I worked my way through the gathering, I found Greg Wasson and John Silk, my friend from Parkinson’s New South Wales, talking with Tom Issacs, one of the featured speakers from the opening ceremonies..  I wormed my way into the conversation.  Here were three of the guys I admire most in the world of Parkinson’s disease and I wanted to share the moment with them.  The four of us were talking with such animation that our dyskinesia began to escalate beyond its normal level. We began writhing like we were the snakes on the head of Medusa.  It must have been comical to anyone who didn’t understand PD.

After the close of the social hour, I once again walked back to my hotel.  This time it was late, after 11PM, when I started out from the Science Center, and I had stretched my drugs too far and I was not only dyskinetic, but my left foot was cramping up from dystonia as well.   So I hobbled slowly along with my heavy bag of books and the normal ½ hour trip turned into more than an hour.  It was after midnight when I reached the corner where I’d seen the drug deal earlier.  This time there was a crowd of perhaps 20-25 young toughs, including at least a couple of young women.  As I crept along the street, heavily burdened by the dystonia and the books, one of the young men called out to me, “Hey you, old man. What are you doing out here? You old bastard… Yeah, I‘m talking to you.”

I kept my head down and continued to walk.

I wanted to turn around and confront that young bully…I hate bullies... But I thought to myself: I must really look like a tired old fool to you– an old man with Parkinson’s disease – but inside I’m still alive and full of life!.  You just don’t have a clue.

So once again, I kept my head down and kept on walking back to my hotel. 

Nothing had really happened, of course.  There was no harm done.  No one was injured.  But the injustice of it all!   I wanted to tell him how wrong he was, how glorious life is, how much fun I’m having, and how my quality of life is so rich, in spite of Parkinson’s or aging, or anything else. Still, I did wonder why the police let this go on night after night. So, in the morning I walked over to the Strathclyde Police Station and reported the incident.  The policeman on duty, a Siekh with his bearded face and turbaned head above his policeman’s uniform, was polite, but uninterested in actually writing anything down. 

“Well,” he said, “There’s nobody there now is there? So there’s no one I can talk to about giving you a hard time is there?  So maybe next time you’ll take a taxi back to the hotel and save yourself the trouble of such a long walk.” It was not a very satisfying response.

The conference on Friday was another great day of seminars and discussions with people interested in Team Parkinson.  One of the Parkinson’s patients from the local area named David Gray stopped by the poster. He said he was also a runner, and had done a few marathons.

“How many?” I asked.

“Several.” he answered.

“So what’s your best time?”

“About 2:30,” he said.

I gasped! “You mean two hours and thirty minutes?”

“Yeah.”

Oh my God, I thought. This man’s a world class athlete.

“So how long have you had PD?”

“I was diagnosed in 2002.”

“And when did you run your last marathon?”

‘Well, the last race I ran was a 100-miler in Vermont in 2006.”

“You ran a 100 mile race four years after your diagnosis?”

“Yeah, but I almost died…not from PD… From kidney failure.”

Oh…My… God! I’ve really got to hear this man’s story.

“So how do you like Scotland? “he asked.

“Well, I think I’d like it better if I could get a round of golf in. It might make up for last night’s little upset.”

“What’s that?” he asked. So I told him about the taunting I had experienced from the young man on the street corner.  He was very apologetic and asked what he could do to give Scotland a better name.
I said, “If you can find me a set of golf clubs to rent and help me get a tee-time on a Scottish golf course, all will be forgiven.” 

“I’ll see what I can do,” he said with a smile, and walked away.  An hour or two later he returned with a piece of paper with the tee-time and location for a round of golf on Saturday…”10:43 at Troon’, one of Scotland’s most famous golf destinations.

“I’ll be by your hotel at 8:30 tomorrow to pick you up.”

The conference was over that night. It had been a truly great event, and I think Team Parkinson was well represented and gained some international visibility.  I was glad I came and happy that the poster had been a success.

On Saturday morning, as promised, David Gray stopped at my hotel with his friend Paul, and we drove out to Troon where we met up with his other friend, Garry; and I played probably the best game of gold in my life. It was certainly the most fun I’ve ever had on a golf course.  It was the perfect ending to a wonderful experience.

A few days later, I received the following e-mail:

01__Name: David Gray
07__Comments: Hi John

I hope you had a worthwhile and enjoyable trip to Scotland. I had a great day at the golf as did Paul and Garry. They were very impressed with your game, but have insisted if there is ever a rematch they would have to look closely at your handicap. I have spoken to Aileen about running the L A marathon, she has not yet agreed but there are encouraging signs. I have started marathon training so hopefully things will work out. Fingers crossed I will see you in LA in the spring.

Davie