I’m out of bed, dressed and sitting downstairs with a nice fresh brew when the alarm on my phone reminds me that it’s time to call the NHNN and try to get to speak to someone (anyone) about my device programming and its likely impact on my dyskinesia. I get straight through to one of the team’s secretaries, which is encouraging, but am told that nobody is available to talk to me. I agree to leave a message for someone to call me, and the secretary remembers my name as she writes it down – “Didn’t you call earlier in the week?” she asked. “Yes, I did”. “And nobody’s called you back?”. “Nope!”. “Okay, I’ll leave them a message”. And that was that.
It’s 1.30pm as I write this, and nobody has called me back. I didn’t hold out much hope, to be honest. I know how busy they are, and the person who is there in front of them is inevitably going to have first call on their time. It is very frustrating, though.
My motivation remains low today. It’s difficult to explain how I feel. I have so many things that I want to do, and yet no drive to do so. The dog is my lifeline, because I have to take her out, and sometimes it’s the only thing that gets me off my backside and out of the house. She seems to sense my mood, and doesn’t hassle me. She waits patiently for me to get around to walking her – she knows I’ll do it eventually! It never ceases to amaze me how empathetic dogs are – how they seem to read your moods and your body language. Sometimes she appears to know what I’m about to do before I do!
My tremor seems a little better today. It’s still there, obviously, but less troublesome than yesterday. The dystonia in my right foot is no better, no worse – manageable! I’m tempted to increase the voltage on my left side a notch – although the left side tremor is stable and not too much of a problem, it would be nice if I could reduce it further still without triggering the dyskinesia in my neck again. Maybe tomorrow…
When I logged into Twitter this morning, I noticed the name of one of the neurologists on the DBS team at the NHNN come up on my feed. I decided that I would tweet him about my predicament if I didn’t receive a call from one of the specialist nurses by close of business today – perhaps he could advise me, or suggest someone else that I could talk to.
I was just about to leave the house to take the dog for a walk, when the phone rang. It was one of the specialist nurse team, and she was able to reassure me that they would very likely be able to “program round” my dyskinsia problem, so that cheered me up immensely. I made an appointment to go for a tune up on the 28th of June, so that’s not too far away!
Dog walked, dishwasher loaded and switched on, supermarket visited, dinner prepared and eaten, beer poured. Time to sit down and finish my blog for the day, and then book train tickets for the 28th!