Parkinson café – a big success!

2009-10-13

– I can’t believe I have met these incredibly prominent researchers. I’m overwhelmed, says Eskil Rundcrantz, diagnosed with Parkinson’s disease two years ago, who drove 100 kilometres to participate.

In an effort to reach out with research news and progress, research network Bagadilico held its first Parkinson café on Monday, October 12th. The idea is for patients and their families to get a chance to meet with and ask questions to researchers.

The visitors had been invited via contacts with patient organizations and it is apparent that there is a great demand for direct contacts with scientists – not a single chair in the room was left empty.

Håkan Widner, professor at the Neurological Clinic at Lund University Hospital, opened with a lecture on how clinical research works. Anders Björklund, professor and chief of Section for Neurobiology at Lund University, informed about a new drug against involuntary movements that will soon be subject to clinical tests.

Professor Håkan Widner shared his knowledge of clinical tests at the Parkinson café.

After that, it was time for coffee, cake and questions. A relative to one of the patients wondered:
– I read a quite optimistic story about stem cell therapy in a magazine. It sounded as if a cure for Parkinson with the aid of stem cells is very close. Is this just science fiction?

– I think that they are in the front line of the truth there. Stem cells are not a cure in that way, rather a way of helping the brain to repair itself. There is a lot of work being done on this, but the solution is still far away, answered Anders Björklund.

Another visitor wondered:
– I get the feeling that patient groups want a standardised treatment against Parkinson’s, but isn’t this hard to achieve?

– Yes, we want to avoid monotherapy and the use of only l-dopa. The younger you are, the larger the risk of developing involuntary movements after treatment with l-dopa. There are benefits of an early combination treatment, so that you don’t put all your eggs in one basket, answered Håkan Widner.

– How many substances do you have right now that you would like to do clinical tests on? a female patient wondered.

Håkan Widner answered:
– Many, but some are “old” substances that are studied again, so the news value isn’t that great. When it comes to new therapies and new drugs, Sweden normally misses out on them since it is relatively expensive to do studies here. They are instead conducted in the Baltic States, Eastern Europe, Hungary and the Czech Republic and the reason is purely economical. But we are positioning ourselves to become attractive for these studies.

Professor Anders Björklund had coffee with Gunnar Sparr.

Sara Riggare of NYP, Network for people of working age with Parkinson, was also at the café to inform about the newly started network.
– We want to help ourselves to find each other and be able to support each other, said Sara Riggare, who had her first symptoms when she was 14 years old.

The questions from patients and relatives never ended and it was apparent that the interest in more Parkinson cafés is very big. Preferably with clear themes and in a meeting place with a microphone and loudspeakers so that everyone can hear better, was the expressed desire from the visitors.

So, more cafés will be organized in the future.

– There is a great value in doing this. And it also stimulates us researchers, especially ones like me, who work in the laboratory and have very little contact with patients. We have an assignment to make the research better known and we are in possession of a lot of “secrets”, as someone here said. Of course, they are not secrets, but we have a lot of information that should be made available to the patients, says Anders Björklund.

Text and photos: Christel Thunell