Testing times

JON: Now that I am sat here poised to write about the last few weeks, it seems to me we’ve been very busy. We have done a load of stuff, and it might even be said that we have achieved one or two things along the way. So let’s play catch-up and see what I've been doing with myself these past few weeks, when I should have been blogging.

First and foremost, I spent two days in hospital for the last tests before a final decision about fitting me up to the much-mentioned Duodpa pump. The purpose was to rule out a less invasive solution, the apomorphine injection pen, which everyone suspected would give me nasty side effects.

Now, there are good tests (like "fill in this form") and bad tests (like "please bend over so we tap a pint of you spinal fluid"). This latest test was really quite simple, and fell firmly into the category of bad tests. First, my drugs were stopped at 8 pm, so overnight I suffered the joys of going cold turkey. I have to tell you that cold turkey is not nice, really not nice at all. Then at 8 am the next morning, I was tested on the apomorphine, which soon gave me the predicted side effects of nausea and dizziness, without giving anything much in the way of symptom relief. So that was fun too. Eventually, joyfully, I got a massive dose of L-dopa and started to feel halfway human, although I wasn’t fully myself again until the next day.

Anyway, the good news out of my 24 hours in hell is that I am indeed suitable for the pump, have been approved for the pump, and will hopefully have the pump fitted before the end of the year. As far as I’m concerned, it can’t come too soon. OK, it involves a permanent hole in my stomach, a shed load of electronics, and the loss of any remaining shreds of dignity, but it’s preferable to continuing as I am, ruled by the tyranny of pill times and pill cravings, increasingly drunk-looking in my wobbliness, and increasingly worried about falling over hard.

That was the big news. Let me rush you through the rest of our goings-on.

The book Marie has edited “for and by” carers for Parkies has been printed and delivered. You’d have thought that meant she’d finally have time to concentrate utterly on the complex requirements of my well-being, but you’d be wrong. She claims there is now much marketing and promotion work to be done. Excellent though it undoubtedly is, the book is in Danish, so only a few of you will benefit from visiting www.parkinson.dk/publikationer to buy it. And yes, that's us on the cover.

My hospital experience was lightened by the acquisition of a new friend in the bed next to mine, with a shaved head and excellent English. It turned out the close shave was because he’d just had the DBS (deep brain stimulation) operation, which means he now has a couple of electrodes in his brain connected subcutaneously to a little computer on his chest that controls the electrical stimulation. We have only slept together once, but I think we’ll stay in touch. He came down to visit us when the doctors finally let him out – just a brief pit stop before he went off to Thailand, where I expect he is now lounging on some sunny beach, the lucky sod.

Marie and I only got to go as far as Amsterdam, where we joined several hundred other Parkies in the first European Parkinson’s Unity Walk through the centre of town. It was a great day out, we got talking to old and new friends, helped make Parkinson’s visible, and enjoyed the party atmosphere at the end of the walk with speeches, music, and a salsa class which Marie enthusiastically joined. I didn’t, I have more sense than that.

Back in Copenhagen, we attended the annual presentation of research grants from the Danish PD association, during with event Marie chatted for a long time with the Duchess who is patron of the association and was later encouraged through an improvised exhibition folk dance with a random bloke who wanted to demonstrate the healing power of the musical entertainment. (Do I see a pattern forming with all this public dancing? What did I marry?)

Yesterday, Marie had a 5 am start to go up to town to help make a presentation to two Danish MPs about some subtle changes to local disability pension laws which I am happily not to be affected by. More of these political meetings are likely to follow as she hits her old activist stride.

Lastly, I have just had my first outing with my part-time butler. We went to one of my favourite photo-haunts where I spent an age getting the right shot – because I didn’t have to worry about him getting bored and fed up. He’s paid to be bored. I think this relationship can work.