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Hi. I’m Louise. After more than five years of experiencing significant symptoms, I was diagnosed with multi focal dystonia recently.
For me, it all started with a slightly weary right arm 15 years ago. As this didn’t present me with any practical difficulties, I ignored it. Come 2009, and I started having difficulties writing. From that point, and in rapid succession, I developed a painfully twisted left thigh, an inability to type, swallowing difficulties, a shaking face, weak arms, and – worst of all a ‘collapsing’ torso, as the twisting and turning of muscles on my left side leaves me unable to sit unsupported for more than a minute or two. For a number of years, my head has involuntarily occasionally moved itself to the left. It’s frequency is lately increasing and becoming a bit painful (unless I give it a spell by looking over my left shoulder for a while).
While hellish at first, I soon realised how lucky I was to have been born in an age with automatic cars (I had driven a manual), voice-activated software, a Thermomix for the kitchen (I cut my hands a lot before its purchase), and the capacity to work anywhere that has come with the Internet.
I’ve recently started work two days per week. I go in to the office, and work in a recliner and operate my phone and computer via a headset.
I’ve lately been working hard at normalising my life as much as possible. This requires a LOT of rest. Packed in pillows in my recliner with my arms supported, my muscles soon stop their evil twisting. The less they twist, the less tired I get.
I take Neurontin, Valium (at night), Norflex, Sifrol, Amantadine (for fatigue), and Movicol, Colese and Coloxyl (as I’m unable to digest much solid food.)
Well, that’s me! I’m looking forward to others coming forward and telling their story.