World Parkinson Congress, February 22-26, 2006

Thanks to grants from Orion Pharma and GlaxoSmithKline, Clonmel Healthcare and one anonymous donor, two representatives of the PAI travelled to Washington, DC, for this congress, the first ever such event. Held in the Washington Convention Center, and attended by scientists and researchers (many well recognised names - Fahn, Calne, Stocchi, Rascol, Jankovic, Olanow, Montgomery, Lang...), advocacy groups, doctors, patients, the total came to 3,161 registrants from more than 50 countries. More than 1,800 registrants were medical professionals, with 1,100 being people with Parkinson's and caregivers.

As you can imagine, the logistics for this conference were mind-boggling, but the bus from the hotel to the conference centre came when it should, delivered us to the centre, where the program manager, Eli Pollard, had managed to put a well-timetabled set of lectures, talks and workshops together. Once we had established where things were, we generally separated so we could each take in a talk or workshop.

One comment: There is so much research going on that it seemed to me like a beacon of hope - Elias Zerhouni, M.D., National Institute of Health (NIH) said that they were “ working speedily towards a cure”, and that “restoring lost function, even curing Parkinson’s disease, are very realistic goals”. Michael J Fox asked, looking at the research progress so far, “does anyone in this room think we have come far enough, fast enough?”...We have made tremendous progress in research but it hasn’t translated” into real improvement - “I’m not tying my tie any faster”! Mary Baker, Chairman of the EPDA, really touched a nerve with the audience when she said that Parkinson’s resulted in “a loss of control”, which is something we “cannot understand until we lose it”. Prof. Oliver Sachs, whose trial of levodopa inspired the film “Awakenings”, said: ” The neurologists and the researchers know about the nervous system but you know how to live with it day by day...Our patients are our teachers - or they should be!”

These Made an Impression on me:

• Dopaminergic therapy has been the one of choice for the past forty years, “which made the side effects of treatment the typical symptoms”. The non-dopaminergic symptoms were not looked at. Prof. Peter Jenner went on to explain that Parkinson’s was not just confined to one area in the brain but was a “brain stem disease”.
  
  Non-dopaminergic approaches to treatment include glutamate antagonists and cannabenoids. Many of the connections within the basal ganglia use GABA as the primary chemical, but few researchers are investigating this compound. Istradefylline, an adonesine receptor antagonist (A2) that improves parkinsonian signs in animal models without increasing dyskinesia*. Its distribution in a rat brain is heavily concentrated in the basal ganglia and striatum, the right target areas.
  
  He said that non-dopaminergic approaches will in the future include multiple targets, alleviation of the side effects of present treatments, and treatment of the non-motor components. “A2 antagonists can be effective against a range of toxic insults”.
  
  
• “While 30,000 Parkinson’s patients have received DBS, only one to two percent of those who could benefit are actually getting the surgery, said Prof. Andreas Lozano.
  
  
• Anders Bjorkland, M.D., Ph.D., who is working to improve the methods by which nerve growth factors are delivered to the brain said that “GDNF boosts function of residual dopamine neurons, and protects these cells from the degenerative process . We hope that short-term delivery of GDNF will be sufficient for sustained effects.”
  
  
• "There are only three things Parkinson's hasn't kidnapped from me: my sense of humor, my spirit, and my sense of worth," said the UK's Tom Isaacs. "I want to be able to say I used to have Parkinson's disease." "I live a strange double life," said 37-year-old Tom Isaacs, who was diagnosed with Parkinson's disease (PD) ten years ago, "I am both Dr. Jekyll and Mr. Hyde."
  
  Dr. Jekyll is confident and outgoing (medication working), but without medication, it is as if he is "trapped in a washing machine on the spin cycle," or, alternatively, "locked in a fridge, trapped in my own body." Tom got a well deserved sustained round of applause after his talk despite the early hour.
  
  Tom introduced us to some of the GDNF action group during the course of the conference, including some of those who had been on the second, unsuccessful GDNF trial.

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Some of the other attractions:

The poster displays were comprehensive and interesting, and especially helpful because you could take printed copies away with you. Some of the more interesting ones:

• Intensive exercise apparently is now back in fashion after some studies were done that indicated that, contrary to popularily held opinion, Parkinson's patients DO derive benefit from sustained exercise, in particular, treadmill training.
• Tai Chi is supposed to help with all round fitness and balance.
• There was some favourable reporting on an exercise program developed by John Argue and available on DVD (www.parkinsonsexercise.com). I had a later communication from an American health professional about this DVD and the exercise program, and she was fulsome in her praise.
• A study done in the Netherlands at Leiden University Medical Centre, Radboud University Nijmegen Medical Centre, Dutch Institute of Allied Health Care and the Centre for Evidence Bases Physiotherapy had the following key recommendations:
  Treatment recommendations based on evidence from controlled trials:
  1 Cueing strategies to improve gait, e.g., rhythmical, auditory and visual cues;
  2. Cognitive movement strategies to improve transfers, e.g. turining in bed;
  3. Specific exercises to improve balance, and
  4. Training of joint mobility and muscle power to improve physical capacity.

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The gadgets that caught our eye:

• LaserCane™ projects a bright red line across your path. “The laser beam is a safe, obstacle-free visual cue, which can enable Parkinson’s patients and others to break “freezing” episodes and increase stride length,” says the manufacturer. To activate the laser light beam press down on the cane, and there is also an On/Off switch near the top of the cane. It is lightweight, height-adjustable, and powered by two small batteries!
  
  We were very impressed with the cane. If a line on the ground assists you in breaking a freeze then this may be for you! It’s not cheap, but worth it providing it works for you. $180 for the cane, $550+ for the walker. (Prices approximate).
  
  Available in the UK at Attainability Ltd. Email attainability@dsl.pipex.com
  USA website: www.ustep.com Email: walkers@ustep.com
  
  
• An elderly gentleman zipped and zoomed around the exhibition centre and to and from various lectures. A better way of attracting attention to his mode of transportation could not be found! It was light, fitted through narrow spaces, and for a person around the house, shopping etc. it would seem ideal. Other models seen on the manufacturer’s website included one for golfers, one for more challenging terrain, and the Segway HT gets the equivalent mileage of 450 miles per gallon!
  
  You stand on it; it balances itself. Control it via the handlebars. Cost: $3,995
  
  www.capitalsegway.com
  
  
• A man with Parkinson’s developed the NextStep® ...It's a walking aid designed to help its user avoid freezing. This unit slides over the end of your cane, comes in a variety of colours, and is battery operated, and priced at approximately $250-300. The idea is simple but very effective! You may have read a tip in a recent edition of this newsletter (curtain wire inserted through hole drilled near the tip of a walking stick) - well, this is the real thing - it even comes with a light so you can see where the arm is at night!
  
  www.icanstep.com
  

And the only real downer:

None of the videos in the Powerpoint presentations ran, except for one speaker's videos. She had the foresight to have two of the AV personnel there with her to set them up in her presentation!

More to be added!

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