Another night of fractured sleep. I wake at 1.30am, 2.30am, 3.30am and 5.45am in great discomfort from my stiff neck, and get up just after 7am. Paracetamol helps.
My wife is feeling the stress of it all at the moment. I’m obviously disturbing her sleep when I awake moaning and groaning. Then she has got to go to work, feeling like she needs another 2 or 3 hours sleep. She worked herself ragged at the weekend organising my birthday party, cleaning the house, preparing the food. And then there’s me to worry about, especially when my DBS causes changes to my behaviour. She’s really stressed at the thought of me being changed, and I don’t seem to be able to reassure her in any way. There are plenty of documented cases online of people becoming impulsive due to side effects from dopamine agonists used to treat Parkinson’s Disease, and she is worried that the impulsive behaviour that I have displayed on a couple of occasions is going to become the norm as my Parkinson’s progresses and my device voltage has to be increased to suppress my symptoms. I think I will have to find some help for her, because she doesn’t feel that she is handling it very well, which in turn is giving me a lot of stress, and stress affects me badly.
My tremor is pretty well controlled at the moment, so I’ll leave the device settings alone and see how things go. I’ve been peeing for Britain this morning (four times in the last hour) and I wonder if that is possibly linked to the higher level of stimulation. I’m not drinking any more than usual. I’ll monitor this. My dyskinesia seems to be getting worse, but it is still manageable. I have found quite a lot of information online about surgery induced dyskinesia, and it appears to manifest itself within the first month following surgery (yep, that fits) and usually disappears of its own accord within 6 months. I did wonder if the DBS stimulation was causing it, but haven’t been able to find any evidence of this online (as yet). I did mention it to Joseph when he re-programmed me last week, but he didn’t make any comment.
The back of my head, where the screws from the frame were tightened, is still scabby and feels bruised and tender. The ones on my forehead were only mildly uncomfortable, and had healed completely within a week. More flesh on the forehead than the back of my head, I suppose.
Hi Ian,
I have read your blog from your op onwards. The way the procedure is carried out seems very different to what I am expecting. My procedure will be done in distinct stages with periods of healing time in between. At the moment I’m very frustrated by the slowness of the NHS machine. It seems referrals to the psyche team weren’t made until my original consultant wrote to them almost 5 months after I saw the registrar who should have referred me.
I’m surprised you have gone straight to dbs without being on medication first, I assume there is a good reason for this. Parkinson’s is such an odd condition. No two people seem to have the same experience with it. I look forward to reading more of your blog and hope you will look at my next installment when I finally have something to write about. Best wishes, Debbie.