This disease is popularly known as the ‘Disease is the gift that keeps on taking’…but one thing you can say for sure is that it is not boring. Whatever you plan for, this disease has other plans….fairly constantly.
For someone who is a bit of a control freak (my wife and kids would add their choice of less than positive words at this point), this is not easy to cope with. It is also not easy for the same family and friends as they constantly have their attention distracted by your latest and greatest drama. This last point is a serious one – it is not easy to have a regular illness/rubbish day in a house where someone has PD (this is directed to me) – and it is important that as Parkinson’s patients we acknowledge that occasionally we can squash the very genuine needs of others by the size and constant attention on our problem.
The drama doesn’t always come from PD directly. It can be the reaction by it to stresses in life which has been a real issue lately and then there are the side effects of the treatments themselves.
Yesterday, was in the latter category, was just one of the many seemingly normal days completely turned on its head by Parkinson’s.
However careful users of the Vyalev / Produadopa pump are, there are risks of infection. It is the probably the main ‘cost’ it seems of receiving what in so many ways is a truly incredible treatment that has transformed my life. This is a broader discussion which is not the topic for this blog.
A minor infection following the procedure of removing a cannula (which I do every other day) was being treated by oral antibiotics morphed into a giant lump (not the technical term) of what is called ‘Cellulitis’ – a new term to me – basically a lump of very hard, hot, painful, red mass just below the surface of the skin – in my case it was measured at 15cm by 7cm.
To cut a long story short – because this is just by way of an example – it was spotted quickly by the doctor, I was admitted to ER and within 2 hours of arriving had a diagnosis and was put on an IV for antibiotics and thankfully released to ‘home hospital’ for up to 7 days whereby medical teams come to the house 3 to 4 times a day to administer an IV and check on me. Thankfully whilst still very much there the lump is definitely smaller this morning.
Parkinson’s with or without medicine, with or without a pump or other treatment is by definition a constant moving train of dopamine levels reducing due to the progression of the disease versus counter measures designed to increase their levels which can at times be too low or too high, neither of which is good, no matter if the intervention is by pump, pill or natural means. It is by definition an unstable rollercoaster.
So the good news…..it is not boring, it keeps you on your toes and you learn to become more agile and flexible.
I have also learned a few other things which are worth mentioning which are positive.
The ability to even try to pretend to be a control freak is rendered pretty much impossible with Parkinson’s so it is something I have to try to learn to move away from and get better at managing/influencing a situation which is constantly evolving. This is something I should have done a long time ago – so PD is proving a useful catalyst.
I saw first hand the absolute amazing service so many people in the medical professional world put into helping people like me – the GP, the clinics medical team, the ER which was flawless down to the volunteers who hand out coffee/tea/soup/meals to waiting patients, the home hospital team and so many others. We are genuinely surrounded by really good people and yesterday they did an awesome job for me (and millions of others). It is good to see that in my case yesterday at least, the universal health care system that I contribute to is working very very well.
The same goes to my amazing wife who had to put up with a grumpy husband for the day. The normal husband is bad enough, yesterday’s was a bit more annoying… so Happy Valentines to you 🙂
Even at the darkest times there are plenty of things to make the time still special and more importantly normal. I can cite 10+ examples from yesterday but the one that oddly the two that stand out for me is seeing my daughter walk through a physics question with me in the evening with genuine pleasure and such absence of anything PD related. The other one is the rather silly effort I made of hiding my tiny glass of whisky (richly deserved) in the kitchen when the home visit doctor phoned to say he was parking outside. I have no smell of course so I completely forgot that he would be able to actually just smell it.
As much as I would like a bit of boring please, I imagine the next burst of energy is just around the corner, so I’d better get ready 🙂
Not necessarily life in the fast lane – but life in the topsy turvy world of PD
