Spirit (and maps!)
Guess where I’m sitting while writing this? Maps to me are like catnip!
Off to London for a rearranged Neurology appointment. I’ve made a list of questions to make sure that I don’t forget anything (increasingly common unless it’s written down 🤪). Wonder if they’ll change my meds because the disease is continuing its inevitable progression. Hopefully they’ll be able to help with the increasing stiffness down my left hand side, as well as some speech therapy as I’m definitely getting quieter (silver lining for the family, I think!).
Last weekend I was honoured to receive the “Spirit” award from Portsmouth Triathletes at their annual party.
This award nomination is (and I quote): “Spirit Award of the Year – Tell us who you think has shown, spirit, heart, determination within the Club or in support of the Tribe, and why?”
I’ve seen some of the kind comments from those who voted for me and they moved me to tears, so thanks to everyone who supported me. The Tri club have been a fantastic bunch of fellow nutters since I joined them and they have certainly given me a boost. I’ll never stop trying (even if it means moving sideways) to fight this pucking disease, and to raise as much awareness as I can.
There was a survey recently which found that 57% of people think Parkinson’s treatments halt the disease. Unfortunately nothing does, the disease progression cannot be halted – at the moment. So raising awareness is important to remove the misconceptions.
In January Nuero Heroes are attempting “Stand Up to Parkinson’s” with the goal of 145000 sit to stands to inspire those with PD (or connected) to exercise and raise awareness about the disease. Why 145,000? That’s the number of people in the UK with the disease.
Visit 5. London bound
eautiful sunrise at my favourite time of year. I’m off to London again to the UCLH Research Facility to collect the next batch of drugs (along with a blood test, weight measurement and questionnaires etc). Visit 5 (out of 10) and the time is flying by. We’re in week 36 out of 96 and, without wishing my life away, I’m already looking at what research is coming along in future to see if I can take part.
I’m noticing more and more the little things that have to be adapted: doing the ironing takes longer when your left arm doesn’t do as requested; buttering toast has to be done with the “wrong hand”; buttoning a shirt takes a while longer as I wrestle with fingers that move like sloths.
Sitting on the train is slightly uncomfortable as the evil thumbs wielded during my massage left quite a bit of bruising (well it feels like it anyway!) but my back and hips feel so much better than they have done in weeks so I’m hoping that the end is in sight for my back pain and I’ll be able to get a bit fitter for the Portsmouth Marathon just before Christmas (sorry, was I supposed to be taking it easy?)