Just when I thought perhaps I had been forgotten about again, lost in our underfunded and overstretched, albeit indispensable, healthcare system, I found a letter on my doormat with the referral I had been waiting for.
My lovely PD nurse who I finally met with in August had passed my details on to the neurophysiotherapy team at my local hospital; I had jumped at the chance of being assessed, although – to be perfectly honest – I wasn’t really sure what it would involve. On asking some fellow people with Parkinson’s whether they had any experience of it (so as to gain a bit of insight) it transpired that some have regular sessions and others have never even heard of it before, much like I hadn’t, or, rather, hadn’t known that it was a service at my disposal. Such is the individuality of Parkinson’s: not only does every single patient experience the condition itself differently, but each patient receives different drug therapies, advice and referrals to ancillary services, it seems, depending on the individual perspective and practice of their treating physician. At times I wonder whether there shouldn’t be certain systems in place across the country to ensure that every patient systematically gets to see a PD nurse, for example, but I think we all know it’s really not that straightforward when it comes to NHS resources. I for one, in any case, am very grateful for the care I do get.
Neurophysiotherapy is basically what it says it is. If we split the word in two, we can deduce that:
- Neuro: relating to nerves or the nervous system
- Physiotherapy: the treatment of disease or injury by physical methods (such as exercise) rather than by drug therapy or surgical intervention
I’m always at my most symptomatic when I have hospital appointments. There’s something about sitting in a hospital waiting room that triggers every single motor symptom going. It was unsurprising, though, given the time of yesterday’s appointment; my morning dose of meds had well and truly worn off. Unlike when this happens at appointments with my specialist consultant, however – where being symptomatic seems to instantly correlate with increasing drug dosages (which is certainly not always a bad thing, just something I’m keen to put off for a while longer) – I think there was some benefit to attending this appointment at my ‘worst’, so to speak. It really gave the physiotherapist a good idea of the extent of my illness, and what we can consequently do to prolong my physical well-being, as well as giving me a big reality check of where I am right now in terms of mobility.
An introductory chat about my background and medications, etc., swiftly moved on to a physical strength assessment, involving the usual pushing, pulling, stretching and, of course, walking exercises. Idiopathic Parkinson’s tends to be unilateral (one-sided), rather than bilateral (two-sided), at least until the more advanced stages, so it was unsurprising to learn that my left side is noticeably weaker than my right, given that it is my affected side. Five years ago, the only symptom I was experiencing was a tiny tremor in my left little finger. Yesterday, my left arm was a deadweight, my left hand for the most part clasped in a fist, squashed under my left thigh to stifle the obvious tremor being emitted every time I was asked to move it. My left leg is now weaker, also with a light tremor, and my gait is also affected; my balance is far from perfect, though I explained I usually have my kids’ buggy as a prop when out and about, which I rely on more than I realise when walking. When asked whether I ever fall over, my honest answer was that I don’t, but I do occasionally trip, though whether or not I can attribute that to having Parkinson’s is unclear given how uneven much of the cobbled paving is in the town in which I live. But then, on walking towards the mirror, I had moment. A horrible moment of realisation. When I’m not walking with the buggy, I sometimes shuffle. A little shuffle, but a shuffle all the same. And that’s why I trip.
And then the tears came. There’s something about appointments you know you needed, with lovely, helpful, caring staff, and moments of realisation like that, that open the flood gates. For just a few moments, that’s all. But do you know what? I needed it. I’ve always held an element of doubt about my diagnosis in the back of my mind, joking, even, with the consultant that he might have got it wrong. But yesterday I think I finally accepted it. Five years on. Crazy. I’m progressing, which was always going to happen. But I needed this. I need to embrace this realisation and start doing everything I can to improve my self-care so that I can live my best me for as long as possible.
I actually left the appointment feeling really positive. Instead of going home, I went to the leisure centre to enquire about memberships, and came across a staff member who recognised me – it’s hard not to be noticed when you’ve got… no, not Parkinson’s… two very energetic (read: noisy) and, if I do say so myself, attractive, children who attend swimming lessons at the same place, and was given a free 7-day pass. I haven’t mentioned my Parkinson’s yet, but I’m hoping to get some advice on exercises to complement those given to me to practise by the physio, which I duly brought home and intend to complete.
I learned a lot yesterday. Acceptance is crucial. Our disease advances, but we progress.