I need to learn when to walk away, when not to rise to an argument. I need to learn that just because I do not agree with someone, does not make them worthy of a response. I’m getting myself in such a tizz, and to what end?! Working myself up right before I need to go to sleep. Never a great idea! Someone has posted in one of my Parkinson’s groups asking what to buy someone who has Parkinson’s for Christmas… More specifically, what to buy someone who has Parkinson’s, ‘to keep them mentally occupied’??!!!! I mean, I took exception at the notion that you would buy someone who has Parkinson’s different gifts to someone who is fortunate not to have Parkinson’s. Buy them something they would like, simple! The suggestion that it needs to be Parkinson’s specific only serves to remind you that you have Parkinson’s, when believe me, you absolutely do not need reminding. And then to add insult to injury, this woman thinks we need to be mentally occupied, whatever that even means??!!! So I replied to her post suggesting that she focus on the things that Parkinson’s has not yet robbed the person of, the positives if you like, rather than buying gifts which point out the obvious stuff you have lost. I was told that actually people with Parkinson’s would appreciate a commode, a shower stool, a large print word search or a fiddle blanket. So I got a bit more angry and upset and responded as a person with Parkinson’s… pointing out I still love photography, baking, gardening and writing despite being afflicted and disability aids and fiddle blankets, although useful to some, do not make thoughtful gifts! I was told I was ungrateful and should appreciate how lucky I am. At that point I realised this was an argument I would never win. I was arguing with a woman who does not have Parkinson’s. She will never be able to see things from anything but her own blinkered perspective. She thinks she is doing a nice, thoughtful thing. So I bowed out gracefully and handed all of my devices to Mark and took the dog for a walk, chasing the sunset, in the wrong direction… Woe betide anyone who ever buys me anything to keep me ‘mentally occupied’!! If that’s how you view me, I don’t want your gift!! And as for feeling lucky?!!!
I don’t know what is going on with me at the moment. Nighttime is horrific. I have never experienced anything like the last few nights. Dystonia so severe it leaves me a rocking, weeping mess. When I do sleep I wake up hearing myself ranting and crying out, my leg and foot distorted by intense muscle spasms which do not subside. And the cycle begins again… more rocking and weeping silently as my body contorts. Sleep creeping in fleetingly as each spasm subsides enough to allow me to lie down. But not enough. Never enough. I’ve been sitting here watching my tremor. It’s rearing it’s ugly little head again. No gentle, subtle re-emergence, but full on tremor from the get go. Why when I take all of this medication to banish it, is it back?!

This is what I take before bed. Medication designed to treat my Parkinson’s symptoms and then other medication to treat the side effects of my Parkinson’s medication. None of it works well enough or lasts long enough and yet this is all I have… I’m attending a seminar next week to discuss DBS. At this precise moment I’d consider just about anything if it made a difference. But yeah, I’m supposed to feel lucky…
On a much more positive note, I published a second little book of poetry last week. It wasn’t planned at all and just sort of happened while I was messing about on Mark’s PC one day. Worse things could happen?! I’m still writing and planning to publish a book, but it’s so much more work, and finding the time and motivation to do it at the moment is difficult. Hopefully it will be worth the wait!


















































