Possibly shouldn’t be left unsupervised…

A quick update on my neurology appointment today, but more importantly, the inevitable, embarrassing incident which befell me… I can’t seem to set foot in that hospital without doing something ridiculous. It’s almost a subconscious need to prove that I do have a need to be there, more so, to see a neurologist… a ‘normal’ sane person would never behave like me!!

So after a busy, hot shift at work, much of it spent standing under the workman’s tube to gain maximum comfort from the cool stream of air issuing from within, I finished early to attend my neurology appointment. Now to back track a little, I had spent my shift wearing chub rub shorts under my uniform because of the ridiculous heat and my crazy decision not to wear tights, but had no need for these under my normal clothes afterwards, so I had taken a clean pair of knickers to change into before my appointment. So there I was, dressed in an all-in-one jumpsuit affair which zipped up the back. In hindsight, probably not ideal in any circumstances, but more so for a hospital appointment. I arrived with time to spare and surprised myself by being able to find a parking space no trouble at all! I figured I’d have plenty of time to nip to the loo before my appointment time, gathered my essentials, and headed for the main entrance. As you enter the hospital, there are some public toilets. Seizing my opportunity, I nipped in. At this point, it occurred to me that an all-in-one item of clothing which zips up the back was perhaps not the cleverest decision I’d ever made, particularly as I had no one with me to zip the bloody thing up. Too late! Ablutions complete, I attempted to squeeze all my wobbly bits back into place… something was preventing me from pulling it up… I spun round in an effort to see what the problem was but that just unbalanced me and slammed me clumsily into the wall of the cubicle. The tuts of the people waiting were clearly audible. I tried yanking it but it was totally stuck, just below my midriff, the lace on my nice knickers clearly on show. Red-faced and flustered, and without really any forward planning, I burst out of the cubicle, bra (thank goodness it was a good one!), nice pants and wobbly bits on show, much to the sheer terror of the solitary little old lady who was trying to manoeuvre her mobility walker through the tiny gap between the sinks and the door. I appealed to her good nature and asked her whether she could help with my zip?! She was like Mo Farah leaving those toilets! Not a word nor a backward glance. I mean, under the same circumstances I probably would have done the same if I was her!! So I shuffled back into my sweaty, airless cubicle and had something of a brainwave. If it wouldn’t go up, it would surely go down?! I managed to yank the whole thing off, undo the stuck zip, put it back on and do the zip up! I even made it to my appointment on time… impressive, or what?! Probably more impressive if I’d just done that in the first place…

The appointment itself was a little bit less eventful… thankfully. Do you think there is CCTV in the toilets?! Never mind… My appointment was specifically to discuss my off times and resultant dystonia. A little definition so you know what I’m talking about: Curled, clenched toes or a painful cramped foot are telltale signs of dystonia. Dystonia is a sustained or repetitive muscle twisting, spasm or cramp that can occur at different times of day and in different stages of Parkinson’s disease (PD). For example, dystonia is a common early symptom of young-onset Parkinson’s.

My options are to double the dosage of one medication, increasing the frequency of another medication and starting either gabapentin or pregabalin for the neuropathic pain. So, because I’m only 48 and want to function for a while yet, there has to be an element of ‘grin and bear it’ with the smallest possible tweaks to my medication so I have options for the future. Parkinson’s medication has a limited life span so I don’t want to use it all up now. I have much still to do and when the drugs no longer work, I’m doomed. So, we’re doing the bare minimum to get some effect. This cannot be fixed. Any improvement on the current state of things would be amazing. I’m grateful for the autonomy I’m afforded when it comes to tweaking my medication (to a point). As well as everything I’ve said about the drugs I take, you also have to carefully balance any change in dose with a potential increase in side effects. In this case, compulsive behaviours and dyskinesia. I don’t think we’d notice an increase in my compulsiveness (joke!) but dyskinesia doesn’t sound much fun either!! Another little definition for you: Dyskinesia (involuntary movements) is muscle movements that people with Parkinson’s can’t control. They can include twitches, jerks, twisting or writhing movements. Dyskinesia can affect various parts of the body such as the arms, legs and torso.

So yeah, not the end of the world but not the teeny, tiny miracle I was hoping for either. Definitely a work in progress. And at least there is stuff to try. There’s a rainbow right there! And that little old lady didn’t keel over in fright – double whammy!! Today is a good day!!! I’ll attach some very poor selfies of my attire, after I’d removed my nice bra and soaked my clothes with the ice towel I was wearing in a jaunty fashion… but you get the idea, maybe?! 😳🤦🏻‍♀️😂 Yeah… not great…