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:
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.
8th October 2010
You are now leaving the Wearing Off website, moving to an external website independently operated and not managed by Orion. Orion assumes no responsibility for these sites.
If you do not wish to leave this site, click Cancel. Click Continue to leave the site.