It’s not just “Shake and Shuffle”

I was out today with my cousin and my 89-year-old uncle. Periodically we like to go trawl around the Op Shops together. Today was a beautiful day and we were enjoying each other’s company. After visiting the first shop we decided it was time for a coffee and a comfort stop. We went to their favourite coffee stop and had a bite to eat, a coffee and used the ‘facilities’.

As we sat down, my cousin remarked on the fact that I had ordered a coffee and also purchased a bottle of coke. So, I told her that I needed the coke to take my medications as I just can’t take them with a hot drink. Also, I advised that when I go out to a cafe or anywhere I am likely to eat, I usually ensure that I have a glass of water or a cold drink of some kind. This is because the smallest crumb can irritate my throat and cause a major coughing fit, which can get out of control. Having the drink on hand means we reduce the risk of this at least a bit.

My cousin said she didn’t realise that one of the symptoms of Parkinson’s was an issue with swallowing. So, we got to talking about other effects of Parkinson’s and I said to her, “People often think it’s just shakes and shuffles”. The motor symptoms that are the things that people notice that are an obvious sign of someone having Parkinson’s. But it is so much more than that!

I had to give up my busy job as a health Social Worker last year because of some of the effects of my Parkinson’s. Physically, apart from needing a knee operation and subsequently a back operation, I was untouched by Parkinson’s in relation to any motor effects. So, I thought that I could go on for years possibly until my mobility was affected. How wrong was I?

I found meetings were starting to get to be very challenging. Keeping up with the amount of information, people talking all at once and various ideas of what to do in scenarios outlined for patients. All these things made it difficult for me to be able to understand what the final decisions were and what my role might be as a consequence. Therefore, I would ask questions that maybe others didn’t need to ask because I had trouble keeping up. I started to have problems with my memory. I wonder now, whether perhaps it was partly a declining memory, but also that I was under a lot of stress and that does tend to affect a person’s memory. All these subtle things others may have noticed the effects – like being annoyed when I asked questions about things other team members had heard and I had not – but did not put it down to my Parkinson’s nor make allowances for it.

I used to use an analogy of a person in a wheelchair at the bottom of a flight of steep steps. You wouldn’t go up to them and say, “Come on then, get up those stairs!” because that would be downright ludicrous! No-one would logically even think of saying that! Yet, for someone with Parkinson’s to be told that people were getting annoyed because I asked too many questions in meetings, showed a distinct lack of understanding of my challenges!

So, just as all of us are individuals, so too are the range of symptoms – of which there are many – and the cocktail of Parkinson’s symptoms, may also be just one of the health issues that affect our bodies.

I choose to tell people what I am challenged by with this condition. Whether they absorb that or not, I can’t control, but I can ensure that I have told them and in doing so offered them the opportunity to understand. That is as much as I can do. As I try to educate those around me on how my own special brand of Parkinson’s messes with me, I also educate myself as I tune in to any new symptoms. There are so many ways it can manifest itself and each brings with it a new joy (NOT!)

I have also done a Podcast on this topic which is available on Spotify, Youtube and other platforms for podcasts. it is simply called “My journey with Parkinson’s” I hope that in putting it in a more public forum that people hear my podcasts and come to realise what a complex condition it is and that it is not a ‘one size fits all’ kind of deal.

I go into more detail on the podcast, but some of my effects are:

• Increased emotionality which can show in my voice ‘getting the wobbles’. I tend not to edit this out too much, as it shows the honest effects of my Parkies and so is an integral part of who I am.
• Increased anxiety.
• Beginnings of memory issues.
• Swallowing issues.
• Softer voice and breathlessness at the end of a long sentence with voice tapering off.
• ‘Gummy throat’ especially in the mornings.
• Tremors, but mostly controlled by medication.
• Slowed processing. Give me too much information at once and I will probably be lucky to remember half of it.

These are just some of the things that easily spring to mind. I’m sure there could be others that I may not be fully aware of.

What does your ‘Parkies Pal’ give you?