In December 2021 I heard that an exciting clinical trial for progressive MS was enrolling participants again. ATA188 was the work of Professor Michael Pender at the University of Queensland, a study I’d been following for years. In fact I’d enquired about taking part in the Phase 1 trial about 12 years ago, but it…
Category: MS and life
An interesting time to launch a book
Who could have known, back in December when I started the immune-suppressant Ocrevus treatment for my MS, that a pandemic was brewing? I’ve been feeling particularly exposed and even asked people at my March book launch (more on that later) to refrain from the usually obligatory hugs at the occasion. But now, a month later,…
In the line of fire
1.30 am, New Year’s Eve. The FiresNearMe text: Put your plan into action. I hear a vehicle down on the road, coming in from the forest. Then another. Soon, a constant stream. 2 am. We’re backing down the driveway, in two cars. I have the dogs, food for them, water, my walker, and the Mechanic…
Fuelling the fire
Thanks for your kind enquiries—my initial Ocrevus infusions are done, and nothing to report, no adverse reactions. As for any benefits, I won’t know until March. But something new—our neighbour’s bees have been descending en masse onto our birdbath, the shallow one. It must be the only accessible water source within range. They mostly cluster…
My two buses
Hilary Mantel, on winning Bookers for her consecutive novels Wolf Hall and Bring Up the Bodies, compared it to waiting for a bus: ‘You wait 20 years for a Booker prize and then two come along at once.’ Two major events, years in the build-up, are culminating for me in the next couple of months.
Puzzling
It was my dirty secret for a while. Then I mentioned it to a friend … who confessed to a similar habit. And slowly they came out of the woodwork—other addicts. Or aficionados. In any case, many friends and neighbours with a predilection for jigsaw puzzles.
When the carer can’t care
Did I say ‘carer’? The Mechanic balks at that word. ‘I’m a husband,’ he says. ‘Caring’s just part of the job description, isn’t it?’ Anyway, roles were reversed last week. He woke up on Tuesday with a stiff calf muscle. He’d done an eighty kilometre ride the day before and thought he’d try some gentle…
Denial
Someone from the National Disability Insurance Scheme rang a couple of months ago. ‘Good news!’ she said. ‘Funding for your wheelchair has been approved!’ Well, great. Please forgive me for my mixed response to this news. There are days when I notice myself casting envious looks at people in wheelchairs. Pushing my wheelie walker around…
It’s official—our health business model is sick
I love Radio National in the summer. They give their regular presenters a break and play reruns of the most popular shows and segments of the year. A kind of annual ‘RN Greatest Hits’. So last Saturday we heard on Ockham’s Razor—home of snappy, topical, sciencey talks—an account by cancer researcher Dr Fiona Simpson of…
The joke
I told my GP a joke the other day. It was only a short joke, one of the few I know by heart. She pressed her hands to her cheeks and stared at me. Dr G is a broadminded, competent, compassionate doctor. She’s quite easy-going. I arrived at one appointment to find her wearing shorts…