40. Do you promise not to tell…

“You remember this – answer from Never to Always passing through Very Occasionally, Sometimes and Often.”

We’ve done the neurology questionnaire three times now: at the start of the drugs trial, in the middle and now, at the end.  Where did that six months go?  Dr LaMancha knows me so well that his pencil hovers over my answers before I say them. We whip through the questions.  Then there’s that moment when I long for Dr LaMancha to give me a red pen to mark my own paper while he runs through what the answers should have been.  It’s a test and I want to know how I’ve done.  Perhaps I could be put in a league table with the other Parkie patients.

Actually, so many of the questions relate to symptoms I don’t yet have, I often feel slightly apologetic.  Do you find yourself unable to move?  No, sorry.  There’s also a whole section concerned with your perception of other people’s attitudes towards your condition.  Are you embarrassed to tell people about the condition?  Have you told people at work?  Do you feel supported by your colleagues?  Your family?

I’ve always answered these with gay abandon.  Not embarrassed.  Completely out of the closet, PD-wise.  Told all and sundry.  Even blog about it.   (Anonymously, though.  Hmmm.) Having PD is a heck of a shock, to start with.  Why would you not tell the people around you?

Then, part way through Parent Consultations on Thursday night, I realised that this was not the whole truth.  I’d just finished explaining to one of the mums how we teach division, and we were rounding off the interview, when she leaned her head slightly to one side and asked me how I was.  And I thought, does she know?

I gave the usually breezy answer – perfectly true, I really am fine.  But it dawned on me; I’m not that open about my condition.  I haven’t told the parents of the children at school and, of course, I haven’t told the children.  In fact, it’s not just that I haven’t told them, I actually don’t want the parents to know that I have Parkinson’s in case they think this affects my teaching of their child.  I don’t want them to think less of me.

I do realise that this is illogical, captain.  Chances are in a friendly family school like ours, many of the parents know anyway.  We have quite a cross-over between our parent community and school staff.  And the Governors know, and some of those are parents.  They probably don’t give a monkey’s. But there must be somewhere, deep down inside me, a residual embarrassment about having Parkinson’s.

And if I feel like this, working in an incredibly supportive school with a very compassionate boss, how much worse must it be if you are in a place where you are worried about your job.

In the first part of his autobiography, Michael J Fox points out that in America, there is an extra worry about being open about your Parkinson’s:  that is, the possible impact on the medical insurance which is provided by your employer.  If your boss knows that you have a condition which is likely to put a drain on the insurance they provide, then your job is made more precarious.

He goes on to say that this has led to younger, working people keeping quiet about their Parkinson’s.  So it is seen as primarily a condition of the old and – though this shouldn’t be the case – attracts less research funding.  He compares the funding for research into Parkinson’s with the research into conditions which are perceived as being more common among the young: AIDS, for example, or cancer.

So, younger people keep quiet about their Parkinson’s because they are worried about the impact on their jobs; so Parkinson’s is seen as a condition which mainly affects the elderly who don’t have mortgages to pay and families to raise; so less money is put into Parkinson’s research.

Michael J Fox goes on to say that it’s not that he wants Parkinson’s research to have a bigger share of the cake; he wants a bigger cake. We don’t want to take money from cancer research, say.  After all, we might get that too!

While Dr LaMancha and I are waiting for the MRI scanner to be prepared, I ask him about the next step for the drug I am trialling.  He tells me that the initial indications suggest that this drug, Deferiprone, might well have an impact on delaying the progress of Parkinson’s.  The same drug is being trialled in France and their results are looking equally optimistic.  At the moment, there is no drug licensed for use with Parkinson’s which delays the progress: all the current drugs deal with the symptoms.

The next step would be to hold a more extensive trial over a greater range of people and for a longer period.  As someone on the initial trial, I would have the opportunity to take part in this second one.

But.

They haven’t found the money for this second trial.  They hope that it will be funded partly by Imperial College, who part-funded the first, and by one of the Parkinson’s charities – the Cure Parkinson’s Trust – but as yet the funding has not been secured.  There is not Government funding.  Without a further trial, they can’t know for sure that the drug is effective and safe for use and it won’t be licensed.

Dr LaMancha is starting to wonder whether he should be applying for other jobs for when this trial comes to an end in August.  As a very skilled neurologist, he will be in demand.  I asked him roughly how much money he thought they needed for the next stage and he said about a million.  Which is two bungalows in our bit of North London.  Or a third of the cost of Thatcher’s funeral.

On the way home, I felt too weepy to even consider the impulse buying of frocks.  The thought that there might be a drug that helps me to stay well until a cure arrives, and that it might not be further trialled and licensed made me very low.  I was living in the naïve belief that everything possible was being done towards a cure.  But it’s not.

And this is one little trial of one little drug.  If you look on the Parkinson’s sites, there are other trials going on, all over the place, of other little drugs which might help to put a stop to this particular condition.  And they are all desperately trying to find funding.  It strikes me that the curing of Parkinson’s shouldn’t be dependent on Fun Runs and Balloon jumps.  It should come from Government who would then reap the benefits of a much reduced bill for all those very expensive drugs which are currently addressing the symptoms of the disease.  But then I would say that, wouldn’t I.

I hadn’t heard of the Cure Parkinson’s Trust so I googled them once I got home.  And blow me down, they’ve just started an e-petition about this very thing which has got, at the moment, all of 1,845 signatures.  There’s a link to the petition here and another to the Trust’s homepage here.

Every hour of every day, it says on the Parkinson’s UK website, someone in the UK discovers they have Parkinson’s.  Last May, it was me.  But keep that to yourself.

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One response

  1. […] the early part of the year, I participated in a drugs trial.  There’s more about it here and here, if you can be arsed to […]

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