Living with Parkinson’s: Memorable Moments

The theme of this year’s Parkinson’s Awareness Week (11-17 April 2021) is mental health in Parkinson’s. So I thought I would share a few memorable moments which have impacted on my mental health…

The letter – I was diagnosed with Parkinson’s in October 2013. I remember the day, a few months later, when I received the letter. It was a Saturday in December and I was packing for a few days away with my best friend, when it arrived. I knew I had Parkinson’s – my consultant had already diagnosed me and I had started on medication. And although it hadn’t been easy, I thought I was doing ok. But when I read the letter which said the DAT scan confirmed that I had Parkinson’s, I burst into tears and sobbed uncontrollablly. Somehow seeing it in black and white just got to me. Some months afterwards I realised that it takes time to accept a Parkinson’s diagnosis.

Sharing my story at work – For World Parkinson’s Day in April 2017, I wrote a blog about my reality of living with Parkinson’s. I shared this at a staff meeting at work before asking for support for a fundraising event in aid of Parkinson’s UK. I was so touched and overwhelmed by the positive response I received. Public speaking is not one of my strengths, and I felt really proud of myself for getting my message across and so grateful that I was able to in some small way raise a bit of awareness about Young Onset Parkinson’s in my corner of the world.

A dreadful dyskinesia day – My dyskinesia had started at the beginning of 2019, but it had been fairly mild, not too troublesome – more of an irritation that I just put up with. One day in June, I experienced what I call ‘bad dyskinesia’ for the first time. It was memorable for all the wrong reasons. I felt like I had completely lost control over my arm and I was desperate for it to just stop moving. I wondered if it would ever stop. It was absolutely exhausting. That was probably one of my lowest points. Eventually it wore off and I was so relieved that I almost welcomed the fact that I could barely move my arm. If there’s one thing I find almost unbearable about my condition, it’s having a bad dyskinesia day. It really is horrible.

Difficult days
I have been struggling more over the last few years. In autumn 2019, I was still struggling with dyskinesia and ‘off’ times. I was trying yet another new medication to try and help with the dyskinesia, but I couldn’t tell if it was working – each day was a blur of barely being able to move or moving uncontrollably with only short periods of functioning ‘normally’. I decided to track my daily cycle – recording every hour whether I was ‘on’ or ‘off’ or experiencing dyskinesia and how bad the ‘off’ periods and dyskinesia were. This helped me to realise that my new medication wasn’t having the desired effect. Looking at my cycle on paper I realised that I was hardly getting any ‘on’ time each day. I was so fed up with the constant struggling, and feeling exhausted all the time. Difficult days indeed.

Hope for the future
Having pretty much exhausted all medication options, last year I started the assessment process for Deep Brain Stimulation surgery (DBS). Although it’s not a cure, if successful it would allow me to reduce my medication and say goodbye to dyskinesia (hooray!) giving me a much better quality of life. This has given me real hope for a better future. The day I had my MRI scan – the first of three assessments to see if I would be suitable, I was on tender hooks and worried I wouldn’t be able to lie still enough for the scan. I was also afraid I might be told, DBS wasn’t an option for me. I was immensely relieved when the surgeon told me the scan was ok. Even though I knew I still had two more assessments to go, I was full of excitement to have passed the first step. It gave me so much hope. Hope in some thing that actually is a real possibility and not just wishful thinking on my part. After struggling for so long and thinking ‘this is as good as it gets’ in terms of my Parkinson’s, it really lifted my spirits.

I am grateful that I managed to get the other assessments done before the second lockdown, and even more grateful to have received a letter to say that I am suitable for DBS.

Understandably, my surgery has been delayed due to the second wave of COVID-19 in the UK. But I remain hopeful that I will be able to add DBS to my memorable moments at some point in the future

More information about Parkinson’s is available from the following UK charities:

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One Comment Add yours

  1. Kerry says:

    Your blogs are so interesting and inspiring and I certainly identify with so much. I could do with advice on how to set up blog for Parkies poems if you could point me in the right direction.
    Keep positive, we can beat this

    Like

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