Hi J of Grey Cottage and Semele,
Thanks for your comments. J, it was heartening to hear your optimism and I can only hope that my PD progresses slowly and I can maintain my optimism too. Semele, your comment about giving the gift of PD back made me laugh – if only! – maybe one day but for now I guess it’s more about how we respond to the challenge PD brings.
For me my dx is so recent that I’ve not given much thought to my long-term future, partly because that’s a bit scary to think about and partly as I’m trying to adjust to how things are now. I’ve been unwell for all of this year and looking back I now recognise various symptoms that have been around for the past few years.
I first went to my GP with back pain and decided to mention a few other ailments that were troubling me – which in themselves would never have taken me to the Dr. Amongst other complaints were tiredness and feeling slowed up – things I’d put down to ‘old-age’! After pursuing a couple of blind-alleys including ‘maybe it’s stress’ or medication side-effect a locum GP thought my walking was suggestive of PD and referred me to the movement clinic. When she mentioned PD it was like being slapped on the face with a cricket bat – that wasn’t on my radar for sure! I started reading about PD and realised it was something I knew nothing about. Before then I regarded PD as mostly characterised by tremor. I was being told I had PD but I have no resting tremor. The more I read about PD the more I recognised my own symptoms.
My first visit to the neurologist led to a dx of Parkinsonism and after a positive response to meds this was changed to PD. I was started on Sinemet Plus with increasing dose over several weeks. By the time I was taking 2 (25/100) three times daily things were hugely different. I was moving much more freely and practically skipping down the road. I’d gone from feeling like 80 to 30. The change wasn’t just in movement – my mood improved. I was more optimistic and had more motivation to tackle work and recreational tasks. The downside has been associated feelings of agitation, anxiety and unintentional movement. My legs were constantly moving – if I’d attached a squeeze-box to my knees I’d have played a tune, though it would be more of a non-melodic wail than anything else. When lying down I found myself doing abdominal-crunch type movements.
The dose has been brought down again. This has eased but not resolved the agitation and has resulted in me feeling more slowed-up again. Appointments coming up soon with PD Nurse Specialist and Neurologist so I hope we can make progress in getting the right balance of meds. The point is it is difficult to think about the long term future before things are more settled right now. I suppose it’s about coping with uncertainty. So to answer your question yes I’m apprehensive about my dx and my future – regarding apprehension about posting, yes but posting this ramble may go some way to resolving that.
Thanks again for your welcome to the forum.