I was 30 when I first noticed something was wrong.
Working as a nurse and raising a two-year-old, I developed a tremor in my right hand that became a real nuisance, to the point where people would ask me if I was nervous performing tasks because they could see me shaking. I also felt like I had lost my centre of gravity, which made walking more difficult.
I was referred to a neurologist, who gave me some medication to try. By my follow-up appointment, I was very reassured that my symptoms had reduced. This should have been a good thing, but it only helped to confirm a diagnosis – I had Parkinson’s.
The news didn’t sink in. I couldn’t believe it, and had no idea how I was going to tell my husband and family. So I kept quiet for some time about my diagnosis, only telling my close family and friends – not because I was embarrassed, but because I just wanted to be ‘Clare’, not ‘Clare with Parkinson’s’.
My job as a nurse gave me a sense of purpose and focus, so I kept working – although some aspects, such as the varying shift patterns, became difficult to manage. I found the fluctuation in shifts could make taking my medication on time harder to do, which started to take its toll. For the first time, my ability to manage my Parkinson’s was being compromised.
“I can’t really put into words how proud and privileged I am to be part of a dedicated team who support people with Parkinson’s.”
I had spoken about it with my managers but with the fear of asking for help comes the fear of being judged. It wasn’t that I couldn’t do my job, I just needed help to continue doing it to the best of my ability. I wanted to maintain as normal a life as possible at work and outside of it. As a nurse, mum and wife things aren’t normally about you – and this was certainly about me.
After a long time, and a lot of determination, we found a solution that would meet all our needs. I’d worked hard throughout my nursing career and I was pleased that I wouldn’t have to compromise between a job I loved and managing my long-term condition. The adjustments meant I was able to manage both effectively and for me, this balance is so important.
When I saw the job advertised for a Parkinson’s nurse in 2019, it was my friends and family who encouraged me to apply. First and foremost, I’m a nurse with the professional requirements needed to do the job, but I also have the added empathy that comes with living with Parkinson’s.
I can’t really put into words how proud and privileged I am to be part of a dedicated team who support people with Parkinson’s. I value the time I have with my patients, giving guidance and support as their clinical nurse specialist, not as someone with Parkinson’s. I don’t ever make judgments about their decision-making because one thing Parkinson’s has taught me, both personally and professionally, is that one size does not fit all. The main difference is that I completely appreciate where they are coming from. I fully understand their worries – and often share them.
“While I’m not on any wonder drugs, I know my positive outlook and being surrounded by great people has got me through the tough times.”
I feel really strongly about changing the public’s perception of Parkinson’s. When I tell people I have Parkinson’s they often reply, ‘You’re too young.’ But the truth is, anyone can get Parkinson’s, young or old. That is why I set up a working age group for people with Parkinson’s in Sheffield and Humber, where, at least before the pandemic, we met, ate pizza and talked for hours about the things we all had in common. Raising awareness is really important and change will only happen if we all work together.
As for my own condition right now, I still have a mild tremor in my right hand. I have some issues when I walk. Occasionally I have dystonia in my toes when I’m ‘off’ – my muscles become tighter and shorter than normal, making them stiff and painful to the point it literally makes my toes curl. I also experience mild, occasional anxiety. While I’m not on any wonder drugs, I know my positive outlook and being surrounded by great people has got me through the tough times.
I think that’s why I have achieved so much since my diagnosis – I don’t dwell on what could be, I get on with my life and carry on regardless. For me, it is so important to live your life the best way you can – that way I can continue having a positive impact on the patients I see during their own Parkinson’s journey. And if I can do that, I am left feeling very lucky.
It will be twelve years since my diagnosis. This journey is the hardest one I have travelled but I’m lucky I don’t have to travel it alone.
Clare continues to support the charity Parkinson’s UK. To find out more about Parkinson’s, visit parkinsons.org.uk
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