What’s the worst thing that could happen?

When you look into Parkinson’s on ‘Dr Google’ there are so many ways that this condition can affect us. It is mind boggling how many things can happen. There is pain, there are tremors, mobility and balance issues and of course cognitive effects.

Of all the things that come with it, there is one thing that scares me the most. I am all about words! I have always written poetry and it has come to the fore more in recent times, it seems almost that Parkinson’s has gifted me a heightened ability to be able to write poetry. I have written more in recent months than I have written in years. It has become so important to express myself with words, either in the form of poetry or this blog.

So, with all the ways Parkinson’s can manifest itself, the one thing that scares me the most is cognitive decline. My words are so important to me. They are the expression of my inner self. They are how I process my thoughts and feelings. They are a release. A therapeutic tool that helps me in making sense of my world and working through things. If I were to lose my ability to express myself through my words, both in my blog and in my poetry I would be absolutely devastated.

Over the last week or so, I have found that I have struggled a couple of times to find my words when I am speaking to people. I was part of a Zoom meeting and had to introduce myself as a trustee of a Trust I am part of. I started by saying, ‘Hi, I’m Sue and I am a Trustee of the Canterbury West Coast….’ then I couldn’t remember the rest! I then had to say, ‘I’m sorry, busy day…. but you guys know the rest..’ or something like that! It was embarrassing and I used my being flustered by being late to join the Zoom and being tired from a busy day as an excuse, but what if it is something more?

After work today I had a bit of a catchup at a local bar with some of my Social Work colleagues. I was the first one to arrive. Because I needed to drive home I knew that I wanted to ask for a non-alcoholic drink to quench my thirst – and I always order the same thing – plus just one glass of red wine to sip slowly as we chatted.

I went to the bar, thinking I was ready to order and as the bar person turned towards me and asked what I wanted to drink, I looked at her and said, ‘I’m sorry, I am having trouble remembering the name of the drink I want.’ It didn’t take me long before I remembered and asked for a lemon lime and bitters. But it was long enough! The name of the drink completely eluded me at first. It caught me by surprise and I was quite thrown by the fact that I could not remember the name of a drink that I always have when I go out to drink with my Social Work friends.

Is this the beginning of the slippery slope towards cognitive decline? Oh, I most sincerely hope not! To lose my cognitive capacity, my memory, to have muddled thinking and not be able to remember or write anything meaningful in my blog or to be able to write poetry, would be devastating.

Maybe it’s just that I am still recovering from pneumonia and not firing on all cylinders yet. Hopefully, it is just a bit of a glitch and I will be clear thinking again soon. I certainly hope so!

Published by kiwipommysue

I work in health and have been with the same supportive team for over 7 years. They are all aware of my diagnosis and this helps tremendously especially while I get used to the idea of my diagnosis. My parents both had Parkinsons, so I guess my odds were higher than most.

7 thoughts on “What’s the worst thing that could happen?

  1. This is uncanny. It mirrors my own fears exactly.
    I was an English teacher, with postgraduate qualifications in linguistics. There’s a famous quote “The limits of my language are the limits of my world. “ The idea of losing the ability to communicate effectively really scares me.


    1. It’s nice to know someone understands isn’t it! Losing my abilities with language and writing really scares me more than the other ‘stuff’ that goes with this condition.


      1. I’m in Australia, mid sixties, diagnosed last year. It took years to get a diagnosis, though…. I was treated for fibromyalgia and was referred to a rheumatologist and exercise physiologist and a cardiologist for the random muscle pain and spasms first.


      2. Crikey that’s a bit of a journey for you. I was lucky I suppose to get an answer pretty quickly. I will be 62 in March. I am a Social Worker living in Christchurch New Zealand


      3. Plenty of work for you in Christchurch, I’m guessing, with all the after effects of that terrible earthquake. 😢
        We had to skip visiting Christchurch after it happened and spent our time in Akaroa instead. Hopefully we will be back to visit soon. We love NZ, amazing landscapes, friendly people, sense of humour. Always punches well above its weight. For the size of the population, so many outstanding scientists, creatives, etc.


      4. I worked for The Salvation Army during the earthquakes, so I lived it and worked amongst it, so total immersion really! It has certainly been a lesson in resilience and what you can cope with that you never could have imagined. Christchurch is getting back to it’s vibrant self. There is a thriving bar, cafe and night scene with some amazing restaurants and bars. Well worth a visit.


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