41-year-old Clare works as a Parkinson’s nurse. It’s a condition she has first-hand experience of as she was diagnosed with Parkinson’s aged 30. Here, she shares her story.
I first noticed something was wrong when I developed a tremor in my right hand. It became a real nuisance. Sometimes when I went to do a task, people would ask me if I was nervous because I was shaking. I also felt like I had lost my centre of gravity, which made walking a little more difficult. I was referred to a neurologist who gave me some medication to try. By my follow-up appointment, my symptoms had improved and it was then I was told I had Parkinson’s.
I was 30 at the time and had a two-year old. It didn’t sink in. I couldn’t believe it and had no idea how I was going to tell my husband and family. I kept quiet for some time about my diagnosis only telling my close family and friends. It wasn’t because I was embarrassed, I just wanted to be myself. I wanted to be Clare.
Purpose and focus
I have continued working as a nurse – my job gives me a sense of purpose and focus. There was a time when some aspects of my job, such as the varying shift patterns, became a little difficult to manage. I found the fluctuation in shifts could make taking my medication on time harder to do. This started to take its toll. I felt for the first time that my ability to manage my Parkinson’s was being compromised. I spoke with my managers, which was really difficult for me to do – I had never asked for help before, because I hadn’t needed it.
It took quite a long time and a lot of determination to find a solution that would meet both my needs and the hospital where I work. 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.
I can’t really put into words how proud I am to be working as a Parkinson’s nurse – I feel very, very privileged.
When I saw the job advertised for a Parkinson’s nurse, 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 I am to be working as a Parkinson’s nurse – I feel very, very privileged.
When patients come to see me in the clinic, it’s very much their time to talk about their issues and concerns. I give 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, I completely appreciate where they are coming from – I fully understand their worries and often share them.
I don’t dwell on what could be. I get on with my life, carry on regardless. I wouldn’t change that – for me, it is so important to live your life the best way you can.
One of the issues I feel really strongly about is changing the public’s perception of Parkinson’s. For example, when I tell people I have Parkinson’s they often reply, ‘You’re too young.’ In summer 2018, I set up a working age group for people with Parkinson’s in Sheffield and Humber where I live. At our first meeting, we ate pizza and talked for hours. We had lots of things in common. Raising awareness is really important and change will only happen if we all work together.
Right now, I 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’ and I can sometimes feel anxious. My medication is working well. I’m not on any wonder drugs, but I certainly believe my positive outlook and being surrounded by great people has got me through the tough times.
I have achieved so much since my diagnosis. I don’t dwell on what could be. I get on with my life, carry on regardless. I wouldn’t change that – for me, it is so important to live your life the best way you can. I also want to continue having a positive impact on the patients I see during their own Parkinson’s journey. If I can do that, I am left feeling very lucky.