Destination Glasgow

Terje Raa &  Leif Poulsen (Denmark)

Terje Raa speaks with 2nd World Parkinson Congress delegate Leif Poulsen at the WPC Glasgow September 2010

Mary Baker, EPDA patron, has just mounted the podium at the 2nd World Parkinson Congress (WPC) in Glasgow, when the door opens and Leif, a Parkinson’s colleague of mine from Denmark, enters, Mrs Baker walks to the edge of the stage, exchanges a few words and shows Leif a seat, then begins, "It's so nice to have friends from all over the world come here!".

They met in Copenhagen last summer at the 30th anniversary celebrations of the Danish Parkinson’s Association - a two-part event – morning session for experts and professionals; then after lunch - the more entertaining part. Ordinary members were recommended to go for the afternoon, but Leif went for the whole package. He commented in hindsight, "That recommendation was ill-advised. My English is not too good, but I wanted to meet the specialists anyway, hear them speak, get a feel for who they are, and be updated about research. And it did inspire me to go to Glasgow, didn't it?"

Leif always makes his own choices, often to the level of exhaustion. He was a carpenter until back problems forced a career change and he trained as an occupational therapist, working with psychiatric patients. At one point he felt that he had lost control, got increasingly tired and was diagnosed as depressive - it took neurologists years to diagnose an advanced stage of Parkinson's. That was four years ago; and Leif is in his early sixties.

As one of four winners of the Parkinson’s Disease Foundation quilt project, which in Denmark was run as a competition, Leif’s mark had been made in Glasgow long before he arrived. There at the WPC, his quilt panel was to be united with twelve others, which was another reason he wanted to travel there and be a part of the final creative process. "Mine is actually a photo transferred onto canvas" he says, a self-portrait that conveys how Parkinson's makes him feel inside. One gets the impression that he is locked up and trying to break out - no wonder his expectations are high.

Getting ready

"How do you prepare for your trip, Leif?" His printer helps him, spitting out hundreds of pages about the conference and Parkinson’s and he seeks the help of family and friends and finds a reasonably priced air ticket. Getting a room is somewhat more difficult - he ends up with two nights at a youth hostel, three in an expensive hotel and the last night in a cheaper one.

The security guards at Copenhagen Airport apparently don’t like the idea of Leif leaving the country - even his socks and t-shirt have to be removed. He cannot dress alone so, in danger of missing his plane, he has to negotiate with the police for help. A few hours later, Leif finds himself sitting frozen on the front steps of a youth hostel, unable to move.

Leif is soon on his feet again, heading for the SECC, the Scottish Exhibition and Conference Centre, which is hosting the WPC. He gets himself a white badge at the registration desk, indicating that he is a non-medical delegate, so has access to all the sessions and the non-medical exhibits, posters and creativity area. To his regret though, the medical exhibition stands are out of his reach.

A smart black shoulder bag includes a programme; the practical information he needs and a pocket for his water bottle. The welcome meal in a paper bag is, however, nothing to write home about. But the opening ceremony compensates for that. 

Exercise

One message is repeated endlessly - the importance of exercising and movement. Exercise is no cure or prevention, but does enhance quality of life by reducing stiffness, balance problems and keeping muscles strong and resistant. Leif knows all about that - at various points in his life he has been active in running, archery, rowing, Nordic walking, swimming, cycling and trekking.

Leif has ideas about openness too - he can talk for hours on end, but not with medical companies. If all companies were allowed to be open with the information they have, then maybe the key to Parkinson's might appear. Leif does however see an example of openness in one project - the Internet based PatientsLikeMe group. Its members share patient information collected through questionnaires, a process that makes them conscious and critical, and suggests that treatments are often given on a random basis.

One comprehensive programme needs Leif's attention now though - it has a certain, easy to remember, built-in logic: Hot Topics first thing in the morning, followed by morning plenary and during the day various workshops and special sessions which are open to everybody, space permitting. All that walking and talking brings Leif to the Rest and Regeneration Room, hosted by the College of Holistic Medicine of Scotland.

Leif watches videos - part of a competition - until his eyes are tired and wet. A lady ballet dancer, Pamela Quinn, uses her allotted three and a half minutes to present her hopes and goals. Rather longer is the Stakeholder Dialogue - "When will the system give me the treatment I need?"- Tom Isaacs ( Cure Parkinson’s Trust) argues for more rapid access to new treatments. Leif makes immediate plans to stage that dialogue in Denmark and has already decided who the Danish participants shall be.

Quilt for the future

"I found my quilt panel!” Plus hundreds of others of course, - 600 in all. It moves and fascinates Leif to see his ‘self’ included in a transatlantic quilt, which simply must be displayed in Denmark too, for a period at least. He will certainly succeed, for Leif has the will, and readily persuades others. It's not just a quilt, but a constant reminder of Parkinson’s, the beauty of which will bring us all goodwill and support. It also demonstrates what a fighting spirit can achieve.

To his own surprise, Leif is recognised at the congress - he did say a few words in the Speakers’ Room about his own condition - but people appear to have seen him on TV. He has almost forgotten that TV crews followed him a few times, asking him for some comments. It was perhaps shown on the night he got lost, when a bunch of young people eventually showed him the right direction to go. He started feeling a bit lonely after that.

What motivated Leif was the interdisciplinary character of WPC – it involved people living with Parkinson’s, their families, carers, physicians and scientists, with the medical companies on the sidelines.

Leif heads home loaded with a bagful of documentation he has collected, although this goes astray and when it arrives after a few days, I ask him when we might have cure for Parkinson's. "Not scheduled!” I must add that Leif has a realistic as well as a provocative side; he already has Montreal 2013 on his horizon. In the meantime the World Parkinson Congress (WPC) will keep Leif and the rest of us busy over the next three years, collecting one million signatures for the new Global Parkinson's Pledge.

Terje Raa and Leif Poulsen
November, 2010