The 2nd World Parkinson’s Congress, by Chris

Posted: October 12, 2010By: Chris Boughton

Patients, carers, clinicians, neurologists, therapists, pharmaceutical companies, researchers, scientists and equipment suppliers, from 23 countries, all met up for four days last week at the 2nd World Parkinson’s Congress (WPC) in Glasgow. This event was last held four years ago in Washington DC and the next one is in three years’ time in Montreal, so this was a rare opportunity for me to experience such an event so close to home. Sadly Parkinson’s disease (PD) did not play ball with me and as much as I tried, I was unable to go. However, several of my close PD friends did attend for the full four days and consequently I am not short of feedback on the event; in fact I have had so much that I almost feel like I did go. Around 3,000 people attended, with an estimate that about a third of these were patients and carers, a similar proportion to the Washington Congress in 2006. All the exchanges that I have had over the last few days, relating to the Glasgow Congress, seem to revolve around how inspirational the whole event was and a strong message of hope for a cure in the foreseeable future. There are about 120,000 people currently diagnosed with PD in the UK and less than 1% of those attended the WPC. Considering the location and cost of staying for the four days and the need for many patients to be accompanied by a carer, it is not surprising that such a tiny percentage attended. However, hopefully all those who did attend, whether patients or PD professionals, will do their bit to filter down that ‘hope’ message to as many other patients and carers as possible. Inspiration will probably only come from being there, but hope can be shared with those who were not.

For most sufferers of PD their daily life revolves around managing various aspects of their illness, such as getting the best combination and timing of medication to optimise their motor responses and minimise their off periods (wearing off). Many other aspects of daily management also play a part, including diet, therapies, lifestyle, exercise, distraction and practical aids. However, these are all tangibles, whereas hope is much more intangible and certainly far less out of our control. It sounds like the WPC was a huge success so let’s believe that this message of hope filters down to the 99% of PD sufferers in the UK, and elsewhere, who were not able to attend the Congress.

It all had me pondering on how I would personally define a cure! Currently there is no medication available that is approved by either NICE or the FDA as being ‘condition-modifying’ for PD; nothing currently slows our rate of decline. But a cure can be graded on several levels:

  • Something that slows our rate of decline.
  • Something that stops our decline (neuroprotective).
  • Something that reverses the brain cell destruction (neuroregenerative).
  • Something to stop PD occurring in the first place (prevention rather than cure).

The feedback from the Congress suggested that there is a lot of promising research in all these areas and that the more that everyone involved in PD pulls together, the sooner a condition-modifying treatment will be found and made available.

How a PD patient may personally prioritise the different aspects of a cure probably depends on what stage their illness is at. But I think most of us would be more than happy just to see something that slowed the rate at which our dopamine producing brain cells are dying….well, as a wonderful starting point anyway.

Chris
8th October 2010

Chris Boughton

Chris Boughton

I was diagnosed with Parkinson’s disease (PD) in February 2004 at the age of 51 having experienced undiagnosed symptoms for at least 4 years prior to that. My wife and I have five adult children and three grandchildren. We are fortunate in that we live in a lovely rural part of the east of England, with King’s Forest situated nearby for my much needed, therapeutic dog walks. I spent most of my working life involved in electronic, mechanical manufacturing management within the Worldwide Broadcasting industry and I am extremely lucky to have travelled extensively through my work. Since I was diagnosed I have dedicated much of my time to researching all aspects of PD and trying to both support others with this illness and raise the profile of PD. As well as writing a blog on this website, I administer an internet patient forum for people with PD which I set up in September 2008 and it currently has over 150 members. I also administer the forum’s Facebook, Friends Reunited and Twitter pages. My younger son recently ran in a half marathon race to raise funds for the Cure Parkinson’s Trust. I am currently studying for a BA (Hons) in English and History as a mature student.

View all posts by this author

Helpful information about adjusting to life with Parkinson's

See more, hear more and share more on our social page