My new normal: Recharging my battery, being reunited with my orange frog and playing Scrabble with a missing tile

Being diagnosed with Parkinson’s changed me in lots of ways. At the time, I never thought I would feel ‘normal’ again, but it’s surprising how quickly we can adapt sometimes. What’s ‘normal’ anyway? I guess in this context, it’s what feels normal to each of us as individuals.

Prior to my Deep Brain Stimulation (DBS) surgery earlier this year, it was ‘normal’ for me to struggle with pretty much everything which involved me moving my right hand / arm, most of the time. I was used to feeling ‘ok’ at best, and mostly worse, because that was ‘normal’ for me. I couldn’t remember feeling ‘well’.

Six months after my surgery, now that my body is more or less healed, I now know what it is like to feel ‘well’ again as I adjust to my ‘new normal‘…

My ‘new normal’: the good, the bad and the constant beeping…

Most of my ‘new normal’ is amazing! Only two tablets every morning instead of 10-12 throughout the day. No more dyskinesia! If you’ve read my previous blogs, you will know just how much this means to me. I can move reasonably well throughout the day, instead of my old peaks and troughs cycle. I also have a lot more energy, and enthusiasm instead of feeling shattered all of the time and feeling apathetic. Basically, my ‘new normal’ is a huge improvement in my quality of life.

However, there are a few things which DBS cannot help with, in fact it can make them worse. Speech is one of those things. I am finding it more difficult to speak clearly and I find myself mumbling and stammering at times. I also find myself coughing when I eat and having some swallowing issues. But I am grateful that I have started seeing a Speech and Language Therapist to help with both of these issues. It probably means my ‘new normal’ will involve a change in diet to avoid certain foods which are harder to swallow, and learning techniques to help with my speech.

Recharging my battery

Charlie with my DBS charger

Part of my ‘new normal’ which I never thought I would say, is that I have to recharge my battery (literally). Although I don’t actually ‘plug myself in’ (as I had previously imagined). I plug the charger in to charge for a few hours. Then I place the charger on my chest (where the stimulator is implanted) to ‘charge myself’. It’s been a bit temperamental to say the least. When it’s not in the right place – which happens frequently – it constantly beeps at me, and I have to say the beeping can be quite frustrating. I guess it will all take time to get used to it. Despite this, I am so very grateful for my ‘new normal’.

Being reunited with Charlie, my orange frog

I was recently reunited with Charlie, my orange frog. Charlie is a soft toy and was given to me in 2002, by a dear friend who has since sadly passed away. Charlie sat on my desk at work every day (and even moved offices with me) for 18 years, right up until the first lockdown in March 2020. It all happened so suddenly, I started working from home thinking it would only be for a few weeks, and haven’t worked in the office since then. Charlie was stuffed in a drawer in my old office and I was reunited with him when sorting out my office stuff recently.

I can’t believe I literally just abandoned something which had been there for so many years. Although sentimental to me, he is only a soft toy. But to me, he represents something more – happy memories of old times, the way things used to be – something which changed in an instant, as I (and the rest of the world) began another ‘new normal’ of the new world of Covid 19.

Although things will never be the same again, having Charlie back on my desk as I continue to work from home, reminds me that even if things are different, I still have a lot to be grateful for.

Life is like a game of Scrabble…

Charlie picks a blank tile out of the Scrabble bag

Life is like a game of Scrabble… You never know what tiles you are going to get on your next turn.

For years, our Scrabble set had a blank tile missing. We just got used to playing without that second blank tile. The game didn’t seem to be adversely affected by it. We just played our best given the tiles we had. And yet, having that second blank tile can change the whole game. In life, we don’t get to choose if we have a long term condition, such as Parkinson’s, just like we don’t get to choose which tiles we pick out of the Scrabble bag. But we do get to choose how we use those tiles and how we play the game with them. And those choices can make all the difference.

Just like in Scrabble, where the tiles you pick out of the bag at each turn can change the course of the game, we just don’t know what each day will bring. Life as we know it, can change in an instant, which is why, no matter what the future may bring, it is so important to live in the moment, and to be grateful for every moment. We have to play the best game that we can with whatever tiles we have at that moment. Tomorrow is a new day, and anything could happen. I hope that whatever the future brings, I am able to be grateful for and enjoy the good times, and be strong and resilient enough to cope with any challenges which may come my way.

I wish you all a Merry Christmas and a Happy and Healthy New Year!

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