Self-Management in Brain Drilling
There was a moment when my husband (MB) and I looked at each other. He sighed and said, I know you are going to choose DBS surgery. And I looked at …
Reflections From the Land of Dystonia
To Hide or Not from Ugly Reality
I’ve lost count of the number of governance meetings whose silent aims are performative. The data are typically very clear – maybe it’s slow …
Copy / Paste Drug Rage
As I psyche myself up for the first post DBS round of Botulinum toxin (using the term BOT to avoid any branding) treatment for my cervical dystonia …
Let’s Get Digital (sung like an 80s Olivia Newton-John)
Guys – I’m wildly embarrassed for us in drug development. If your days are like mine, the letters A and I are sprinkled like fairy dust. But the …
Scream-At-The-Mountain Day
Scream-at-the-Mountain-Day (SATMD) is an annual ski tradition. It involves searching for ski gear recklessly abandoned in cupboards, squeezing yowling …
Finding My Way in The Land of Dystonia
Sometimes life flips us upside down and leaves us gasping, wondering how we will ever be the same. The simple truth, the hard truth, the painful …