1am, 2am, 3am, 4.30am, 6am, 8am, awake and shaking. On with the power, out of bed.
Downstairs and I start to get a cooked breakfast together, but my wife intervenes and makes me sit down. We are going over to see my mum and brother today and my wife doesn’t want me to tire myself out. I sit and assess my symptoms. Pretty strong tremor on my left side, mostly in the leg. Moderate tremor on my right hand side, mostly in my arm. Some dyskinesia. Some dystonia. My benchmark is my signature. If I sign my name and it actually looks like my signature should, then I’m pretty happy. My signature looks good, all things considered.
My wife heads off to work. My friends and I head off to Stalham to visit my mum, who also has Parkinson’s, and my brother, who doesn’t. My mum is concerned that my tremor has come back, but I explain that I’m experimenting with the settings on my neurostimulator and she accepts that. We were hoping to go for a little cruise on the Broads, but it’s really windy and quite chilly so we decide to give this a miss and take mum for a drink in the Sutton Staithe pub instead. A pint and a packet of crisps go down a treat, and the alcohol relaxes me and improves my tremor.
We drop my mum off, and head back to Southrepps, where I have my arm twisted (honestly!) and we pop into the Vernon Arms for another pint (well 2, actually) and to book a table for dinner tomorrow night. My tremor calms down a little more, and my friends notice and comment. Alcohol may not be the solution, but it’s a pretty good tool in the meantime. Dyskinesia is getting a little stronger, though – not enough to be really troublesome, just enough to remind me it’s not going away just yet.
Bedtime, and I crank it up by another 0.1v (to 1.9v) on the right, and then turn it off for the night.