8. Shakes and drugs and rock n roll

Imagine.  Young Mildred is rising five and about to start big school.  You’re pretty confident about this parenting lark now; and anyway even Marks’s won’t take her back this late in the day.

You’ve tidied up for the pre-school visit, just stuffing the last bit of junk into young Mildred’s bedroom when the bell goes.  She peers shyly from behind your legs as you open the door.

“Look, Mildred,” you say cheerily, “it’s your new teacher, Mrs …?”

“Jellywoman,” I chirp.  “And this is my Nursery Nurse, Miss Sugarsprinkles.  I’m sorry, we’re a trifle early.”

We head for the lounge and I plonk myself on the sofa, very boring with all my files and forms. Miss Sugarsprinkles, however, quickly wins over Mildred and is dragged off to see her My Little Pony duvet cover.

I’ve talked about the starting routines; you’ve shared Mildred’s fear of clowns; I’ve reassured you that all the clowns in Education have long since been promoted out of the classroom.  I have one last question for you, pen at the ready to jot down your answer.

“How do you want us to teach Mildred to read?”  You blink a couple of times.

“What would you suggest?” you ask.

I push my glasses back a little. “Well, essentially there are three main approaches.  There’s phonics, of course, which is the current method of choice; you could go for synthetic or analytical phonics.  I suggest you read Jim Rose’s report before you decide.  Then there’s the whole word approach which is the foundation of multiple reading schemes.  Here’s a leaflet with some web-links which explain this more fully.  And, of course, there’s the apprenticeship model – sometimes known as real books.  You might want to read some of Michael Rosen’s work on this.  Mind you,” I add as I lean forward confidentially, “some parents choose to put off teaching their children to read at first.  Everyone is different you see and I wouldn’t want to pressure you.  Have a think about it and let me know what you decide.”

So saying, I gather up Miss Sugarsprinkles and we sail off to our next visit.

“Enough of the extended metaphor, Jellywoman,” I hear you cry.  “Get on with it, before Michael Gove hears you and decides that Parental Choice of Reading Method would be a Good Thing and you have to impale yourself on your own mortar board.”

Fair point.

The day after my diagnosis, Dr Cameron sat frowning at the neurologist’s letter.  “Hmm, Sinemet,” he said. “Surely you don’t want to start on this yet.”

Why wouldn’t I?  I had an incurable disease that was killing off my brain cells.  Pling, there went another one.  My shoulder hurt.  My hand trembled.  I was very tired.  I was very depressed.  Let me at that Sinemet!

“You shouldn’t start medication too early,” Dr Cameron said, reprovingly.  “They’ll tell you the same at the Royal Free.  It becomes less effective over time, you know.  The sooner you start it, the sooner it will stop working.  And there can be very nasty side-effects.  Of course, if you really want it, I’ll write a prescription.  Let me know.”

“Why have you been prescribed Sinemet?” said the woman on the other end of a help-line.  “Most people don’t start on it for years.  It does become less effective, you know.  And it can have very nasty side-effects.  Why weren’t you prescribed a dopamine agonist?”

A dopa-what?

“Your symptoms are quite mild compared to most people I see,” said the Parkinson’s nurse.  “I shouldn’t think you want to start on Sinemet yet.  It does become less effective, you know.  Not to mention the very nasty side effects.  I can write and tell your consultant you don’t want to start on medication yet, if you want.”

One of the very hardest things about the summer just gone (apart from Mum’s cancer and Dad’s exploding eyeball, that is
– sign up now for our Christmas round-robin letter: a barrel of laughs from start to finish!); one of the very hardest things was feeling that I had to make a decision about the medication without the expertise to do so.  If the effects of Sinemet wear off, did that mean that taking it now would condemn me to a miserable retirement?  The implication was that I should man-up; there were people getting through this with worse symptoms than me on now’t but a mug of green tea.

On the other hand, I did feel awful.  Bloomin’ awful.  And I had a job to do and an ActorLaddie to love.  Did I really have to grind through a painful present for the sake of a possibly bearable old age?

I am sorry to say that this was not my finest hour.  I am not the stuff from which Empires are built, it seems.  For two weeks, I took to the sofa with a box set of Miranda and couldn’t even manage a small bowl of ActorLaddie’s soup.

The quiet company of FellowKnitter sitting by me, sewing (yes, I know – she’s a woman of many talents); multiple texts from DearHeart when I wasn’t up to speaking; the patient love of ActorLaddie  – these kept me afloat.

And then I spoke to Linda, a volunteer nurse on the Parkinson’s UK helpline.  That’s her real name, by the way, so if you see her around PUK HQ, please tell her she saved my life.

She listened to me, quietly.  She recapped to make sure she understood my situation. She corrected some of things I’d been told, to bring them in line with current medical thinking.  She gave me hope by talking about the progress towards a cure.  And then, bless her, she drew on her expertise and told me what to do.

That conversation was my turning point.  My first consultation at The Royal Free three months later confirmed her advice.  They have made me the Jellywoman I am today: happily on Sinemet, with no side effects, coping with a tricksy job and eating soup like there’s no tomorrow.

If you’re still worried about Mildred, by the way, just tell the teacher to use her professional expertise.  Believe me, no-one will have said that to her before, and you’ll instantly become her favourite parent.

4 responses

  1. I am really enjoying reading your blog, and the mentions of ActorLaddie!

    1. Cheers, Ken. A.L. sends regards. X

  2. Helping me with that article – thank you


    1. Thanks Mike. I see from your blog that I’m almost exactly two years ahead of you with the PD. All the best. JW

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