What I am about to say, is not in the way of bragging but just my reality.
It will be 6 years this year on 15/12/26 that I was diagnosed with this pest of a Parkinson’s. I am fortunate that I am what our local Parkinson’s nurse calls, ‘a slow burner’ In other words Parkinson’s may be looking over my shoulder, but I am pretty much in the driver’s seat!
I am fortunate – in a weird way – that both my parents had the condition. Not fortunate for them exactly, but it gave me the tools to recognise what was happening to my body sooner rather than later. I always knew that of all of my family, my three brothers and I, that I would be the one to inherit the family curse of Parkinson’s. Unfortunately, I was absolutely correct.
I am fortunate that I was able to see the warning signs probably a lot earlier in my journey than some. It has given me the opportunity to tick things off my bucket list. Not that I have an actual bucket list, but now that I think of it, maybe I should! A list of things I want to do before I shuffle….. Hmmm….
So, I have been pootling along in life, taking my meds – even sometimes taking them on time – trying to get exercise that I can do that doesn’t make my back or my knee problems worse. Sometimes I even forget I have Parkinson’s as I get on with whatever activity I am engaged in at the time. Yesterday, I had a very busy day . I went to aqua jogging and did 20 lengths and 10 lengths of freestyle as well. Then home for a couple of hours and off to bowls for 9.30am to about 12.00pm, then lunch and playing again from 1.00pm till about 3.00pm or thereabouts. I know it looks like a busy day and it probably is, but I thought I was managing it all pretty well.
Yesterday, though my friend (not!) Parkies came up and bit me! They reminded me that they are ever present, even if I sometimes just get on with my life and don’t feel that Parkinsonian. Yesterday, however, I felt very much like a person with Parkinson’s. I am very aware when I am going to bowls to ensure I have my meds at 12pm, with the earliest perhaps 11am for my mid-day meds. Yesterday though, As we started on the second game of the afternoon, I became aware that I didn’t feel my usual self. Getting up from sitting suddenly required a lot of unexpected effort. Walking caused stiffness and shooting pains of sciatica added to the picture. I suddenly felt really fatigued and walking was an effort, my legs heavy and not wanting to cooperate. Getting on and off the green suddenly felt unsafe and I had to ensure that I got down on the green using a step for stability and safety.
I thought about my day and acknowledged that it was busier than usual and wondered if I might need a medication boost of some sort to help me to manage my busy days. If I am to continue to play bowls, I will need to manage my symptoms especially balance and fatigue and I’m hoping some sort of meds that I can top up with will do the trick. I have left messages for the Parkinson’s Nurse who works for my Neurologist, but so far no response. It is sometimes difficult to know whether to go direct to my Neurologist to ask about my medications or to go via the GP. As I want to sort this quickly, I have made contact with my GP and made an appointment to see him. I still await the Parkinson’s Nurse and hope that she will get back to me soon. Not being able to see or talk to anyone about all this is stressful and not knowing who it is best to contact when it comes to specialised Parkinson’s medications is stressful too.
Hopefully, it will all be settled soon and I can get back to some semblance of normality.
