The World Parkinson Congress takes place in Montreal next week. I'm going to it and I'm looking forward to it. Are any other forum inmates going?
I wasn't at the previous event which took place in Glasgow in 2010 but I have heard great things about it. The organisers are expecting around 3500 people from across the world including neurologists, researchers, carers, nurses, campaigners, fund raisers, Dave the Parkinson's worm and, most importantly of all, oodles of PwP.
The congress programme includes a wide range of presentations, discussions and exhibition stands and hundreds of research posters. It is planned to stream some of the presentations on the congress website. I will try to bring a few updates from the congress to the forum assuming I can find Internet access in Canada.
I do hope you have a great time, Elegant Fowl and meet amazing people and hear uplifting news of progress in the fight for a cure or control of this condition.
i look forward to your report of some of the presentations with interest.
I'm at the World Parkinson Congress in Montreal. Today was the first day and was devoted to three streams of presentations. One stream focused on the basics of Parkinson's, another on comparing best practice in interdisciplinary care. I went to the third session which was devoted to some new developments in drug therapies, diagnostic imaging and ways of engaging people with Parkinson's in the process of research.
There was more science content in it than this engineer could absorb so I won't attempt to relate it all. There were some definite highlights of the session.
There was a great description of the search for neuro protective drugs, that is something that will slow or stop the progression of the underlying Parkinson's. The conclusion was that, despite a great deal of effort and some promising candidates, no drug has yet been found that is proven to be neuroprotective. On a more positive note it was said that exercise has huge potential for slowing the pace of the condition.
The discussion on neuro protection raised the need to detect and diagnose Parkinson's at an early stage. There is a great deal of work going on to spot biological or other symptoms that might indicate the existence of Parkinson's.
One of the discussions was devoted to advanced neurological imaging techniques like MRI and PET scans. These may eventually be used to detect the condition but in the short term they have great promise in research projects.
The end of the day featured a summary of the role of people with Parkinson's. The Parkinson's Disease Foundation described their Parkinson's Advocates in Research programme (www.pdf.org/pair) which has much in common with the approach taken by Parkinson's UK to involving PwP in research. The final session of the day featured an impassioned debate on the subject of accelerating the search for a cure and/or better treatments. Much of the argument was about finding more cash but there was a clear need for more PwP to get involved in trials. (There is a list of trials available to people in the UK on the Parkinson's UK website at http://www.parkinsons.org.uk/researchstudies). Several people described how the experience of participating in a trial had helped their understanding of the condition and their ability to deal with it.
It's clear that there is a lot of work going on in the Parkinson's world to improve the lives of people with Parkinson's. More importantly there are initiatives to make research more efficient by sharing data between studies.
The presentations and discussions left me feeling very positive and looking forward to the next three days. Even more encouraging than all that has been the experience of mixing with hundreds of PwP who are engaged in the fight against this condition.
Thanks for the interesting report, VE, and we look forward to more, if you find the time.
I am excited to hear that the 4th World Parkinson's Congress will be held here in Portland, Oregon in 2016! (Sep 19-25, for those who want to mark their calendars now).
Have you heard any mention of 'Exenatide' (brand name Byetta)?
Its mainly for Diabetics but there have been quite a few trials (National Hospital for Neuroscience and Neurosurgery London) that suggest it could be very beneficial as a neuroprotective.
Tx for the report VE/EF, and i look forward to more.
MAOB inhibitors (rasagiline, selegiline) are always said to be neuro-protective; indeed my neuro prescribes them for me specifically for this reason. Were they mentioned?
I feel guilty about my (whole-life) lack of exercise! Was anything specific cited?
keep up the good work, but make sure you enjoy yourself!
The last 24 hours at the WPC have been pretty action packed. Before I summarise the new stuff here are some answers to the questions and comments.
GG - there isn't a session specifically devoted to DAs and OCB effects but the issues have been mentioned in lots of the other sessions. It is accepted that obsessive and compulsive behaviours can occur and that PwPs and their partners, caregivers & professionals all have to be watchful particularly where DAs are in use.
Poker - yes, Exenatide was mentioned. A couple of speakers have highlighted the recently published promising findings from the initial trials which were published earlier this year, and that follow up trials are in the pipeline. There's more on the exenatide story so far on the Parkinson's UK website just search for 'exenatide'
Semele - yes Selegeline & Rasagiline (the MAOB inhibitors) were mentioned as examples of drugs that have been tested for neuroprotective effects. The general consensus seems to be that while there have been some promising findings from trials of MAOB inhibitors, their neuroprotective effect is still debatable and any neuroprotection is likely to be very slight.
At the moment no treatments have been proven to slow the development of Parkinson's but there's plenty of hope that some of the treatments being developed and tested now could.
In the meantime, exercise seems like our best bet but there's no hard and fast rules about what kind works best. There are people here advocating and demonstrating many different regimes but the best advice seems to be find something you enjoy and do that.
Finally - Sheryll - Its great to know that we have a forum member in Portland, Oregon where WPC2016 will take place.
Last night featured the official opening ceremony of the WPC. There is a fine description of that event written by my friend Jenny. Read it at :http://bit.ly/182pFMf
The highlight of the night for me was the result of the video competition. From well over 100 short films entered the organisers shortlisted 12. The winner was a beautiful animation by Andy McDowell from New Zealand. Watch it here http://www.youtube.com/watch?v=3nI17vFWYaQ
There were lots of different sessions today covering different subjects. I chose to attend a session about sex and one on memory.
The sexual issues session was a very matter of fact discussion about a topic that is important to most, if not all, of us. The speakers observed that many people are uncomfortable talking openly about sex even in a medical situation. This coyness can affect PwP, their partners and/or healthcare professionals. The same people might be quite happy to talk about other bodily functions. The speakers, drawing on clinical experience in Holland and Israel described the ways that Parkinson's can affect sexual functions and the various things that can be done to help. There were no miracle breakthroughs on offer but the strong advice was to talk openly with your partner, focus on intimacy rather than sexual athleticism and to take advice from healthcare professionals if you are unhappy. All that is generally good advice for people whether they have Parkinsons or not.
There was clear advice for healthcare professionals not to dodge the discussion if a PwP or partner asks for sexual advice.
The session included discussion of hypersexuality in Parkinson's people and how it can be recognised and addressed.
The session on How Parkinson's affects Attention and Memory was a classic example of the WPC at its best. Three speakers from the UK (David Burn), Canada (Connie Marras) and Australia (Margarita Makoutonina) combined to describe the basic science of attention and memory issues in PwP followed by ways of measuring these issues in a clinical setting and finally some practical advice on how to deal with these issues. This session was videoed and it is planned to make it available on the WPCwebsite. That means you will soon be able to watch it yourself and wont have to rely on my summary.
It was a very interesting session which emphasised that cognitive issues in Parkinson's are real, are very complex, hard to measure objectively and are worthy of greater research.
I hope this gives a flavour of what is going on here
Thank you for taking the time to report back to us. Hopefully more than one of us will be able to attend in 2016.
Wonderful to hear that Brian Grant's Power Forward video (where he and five other PwP climbed Mt St Helens) won first place. He is doing so much to raise awareness over here.
The World Parkinson Congress is huge. There are around 3300 people here and it feels like around 1000 of them are living with Parkinson's. The core of the event is an array of scientific presentations and listening to them is like drinking from a fire hose. There are exhibition stands from all the most important support and research organisations (including, of course, Parkinson's UK).
I've been to big conferences before but nothing like this. I have never experienced such a big group of friends. The presentations summarise recent developments in research, treatments and ways of living well with Parkinson's and they give great cause for hope.
The stories and experiences of the people at the congress give even greater cause for hope.
Viewing is free but you have to register your name and email address to do so. For some reason you have to register separately for each day.
The videos are well made and clear and they include the slides used by the speakers. There is a great deal of fine material there. To save you some time here are some reccomendations based on my experience
Wednesday : Parallel session 2 : How Parkinson's affects attention and memory
Thursday : Plenary session : Non Motor manifestations of Parkinson's
Friday : Plenary : New views on the management of Parkinson's. Unfortunately the video omits Professor Roger Barkers outstanding presentation on cell and gene therapies. It does include a quirky and entertaining view on the power of the Patient from 'e-Patient Dave' Dave deBronkart.
Friday : Special Lecture : Living positively. This session features ultra runner Alex Flynn, astronaut Richard Clifford and Dr Soania Mathur who each spoke about the effects of diagnosis on their lives.
Just my highlights will keep you busy for 7 hours - enjoy!!
for those with smartphones and tablets there is a fantastic app which contains all the papers, posters, powerpoints and lots more.
It will take me until the next conference to read all the items of interest to me from this one. Must have been tough to decide what to see and what to miss.
