96. First, catch your Parkie…

Last Friday, ActorLaddie and I went to a conference organised by the Cure Parkinson’s Trust Conference. The theme was ‘Curing Parkinson’s’, which sounds a pretty good idea to me. Half a dozen experts came from across the globe to explain what is going on at the moment in the way of research.

It was inspirational.

I learnt:

  1. That I am, after all, brave enough (with Actor Laddie by my side) to face people whose condition has progressed further than mine. Next time, I hope to be less nervous.
  1. That Parkinson’s should not be really be called a disease as this implies that there is only one type of Parkinson’s. It is more like a syndrome or spectrum ranging from a subtle tremor to a severe difficulty with body control, memory and so on. PD is progressive but there is not one linear path.
  1. That this range of symptoms presents a particular challenge to the researcher.   It could be that negative results in a trial indicate not that the drug doesn’t work but that it was being tested on the wrong sort of patient. The analogy was made with cancer: if a drug for prostate cancer was tried on someone with breast cancer, it would appear not to work. Trials need careful targeting.
  1. That some drugs are likely only to work if given early on in the condition. The analogy was made with putting fertiliser on a dying lawn. If you do it when there is sufficient grass (or in our case dopamine), then the lawn will respond. If you wait till all the grass has died, then the fertiliser won’t make any difference. Again, this has implications for careful targeting in drugs trials.
  1. That the above can cause difficulties with the funding of trials. Drugs trials are hideously expensive and the ‘Big Pharma’ companies are less likely to fund something which has had unpromising early results, as was the case with a GDNF trial recently. The argument was made that the drug may simply have been given to the wrong people at the wrong time. This doesn’t mean that it doesn’t have potential to do great things.
  1. That no-one knows what causes PD. A small percentage of people have a genetic strain but most cases seem to be random. It is probable that some environmental factor triggers it but probably ten or twenty years before the condition becomes evident. So maybe it was the Banda fluid that has done for all us teachers. Or maybe not.
  1. That smoking and coffee drinking means you are less likely to get PD but no-one talks about the smoking bit!
  1. That there have been very exciting results from the testing of the diabetes drug Exenatide on Parkies. It is much cheaper and easier to ‘repurpose’ a drug which is already being used for another condition than to develop one from scratch. More extensive trials will start soon. There is hope; there really is hope!
  1. That, as they are now responsible for their drugs budgets, GPs are going to need a lot of persuasion to prescribe newer drugs because of the expense. At the moment, some GPs won’t prescribe Rasagiline, which might delay the progression of the disease. These GPs argue that they only have money for on things that are definite, and not maybes.
  2. That a major study was undertaken which involving looking at everyone who had a diagnosis or possible diagnosis of PD in Cambridgeshire over two years and then tracking how the condition progressed. That 20% of these people were still doing very well ten years after diagnosis.
  3. That 40% of the people died within those ten years. However, as most people are very elderly at diagnosis, statistically the percentage of people dying is what you would expect in the normal run of things. In other words, you do, in fact, die with Parkinson’s rather than of Parkinson’s. I only wish we had been told this when I was diagnosed; instead of being told that it would shorten my life expectancy.
  4. That Helen Matthews and the rest of the Cure Parkinson’s people are lovely and organise a very slick conference with darn fine canapés.
  5. That American professors really do wear bow-ties.
  6. And that Tom Isaacs is just as funny and inspirational in real life as he is in his book. He was good enough to sign my copy of “Shake Well” and said that things look very optimistic for new Parkies. I hope the amazing work done by both Parkinson’s charities is also able to help him personally. It seems most unfair if I were to escape by climbing on his shoulders.

If I don’t speak to you before, have a good Easter. Hey nonny no, and may all your buns be hot and very very cross.

If you are not already signed up to GiveAsYouLive to help fund Parkinson’s research, please please do. It’s easy, it costs nothing and it will bring a cure nearer. Here’s the link: http://www.giveasyoulive.com/invite/R9Uvawk1jXFKlO7BZYb0qg7ajEam


3 responses

  1. Dear Jellywoman, (I now know who you are!)
    Thank you for this accurate and upbeat summary of the meeting on Friday. I am glad you were not affected by people in a more advanced state of disrepair than you – having said that, you looked brand spanking new to me. It took me a while to grow accustomed to seeing people with more advanced Parkinson’s than me but, once you have accepted that everyone is different, then you don’t have to think of it as crystal ball gazing. Now I am very conscious of other people looking at me in the same way, and particularly on days like Friday, when I was not so much quivering like a jelly but quaking enough to have seizmologists assessing me on the Richter scale.
    As for climbing on my shoulders, nothing would give me greater pleasure than to see the work of The Cure Parkinson’s Trust reverse any symptoms you may have (and once again I could not see any!) My life is completely fulfilled from reading blog posts like the one above. This may sound holier than thou, but The Cure Parkinson’s Trust is the most rewarding job I have ever had!
    Looking forward to meeting you again.

  2. […] up and asked if he would mind signing my copy of his book. I have it beside me now, as I write.   My blog about this conference concluded: “I hope the amazing work done by both Parkinson’s charities is also able to help him […]

  3. […] was very moved that he’d taken the trouble to comment and it really gives a sense of the man. Here’s the blog – scroll down to the very end for the comment. I’ll see you the other side of Thursday’s […]

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