Is Sharing Caring?
Being a nurse for more than 20 years, I’ve across many difficult situations, met plenty of amazing people, cried with them, laughed with them but never thought, not even once myself, that I’d become a patient or receive a chronic non-curable diagnosis. My concept about life has been changed on 25th September 2019, the day I have been told “Tincy, you have Moderate Early onset Parkinson’s disease.”
2019 June 3rd - I went to my GP as my right footsteps sound was louder than my left one. Eventhough I had noticed it few times whilst walking through the quite hospital corridor, I felt silly to go to GP . But when my colleagues pointed out the same issue I have decided I should not regret.
As expected after the initial investigations (blood tests, ECG, MRI) the wait for the Neurologist appointment. Prior to the appointment itself I have self diagnosed I have Parkinson’s but was not willing to accept. Nurses are the difficult patients. Everyone including me says I have given a hard time to the Neurologist as well. Finally on 25th September after a DAT Scan study The neurologist concluded and I was left with only one choice Accept, Adapt , Cope and Live with it (Of course work with it too).
Several times I’ve come across with people that say I have this diagnosis or so and so has some long term illness, but don't tell anyone because she doesn't like everyone to know. I always thought what is the problem behind that? But, then I realised how hard it is to share because I don't want to hear all the sympathy. I don't want anyone to think am incapable of work.
But soon I realised to be supported at work, at home, the news should be delivered. Sharing the news to colleagues is easy because they know what is Parkinson’s and the all acts and limits. Sharing with my husband is difficult but I managed without much troubles but we decided to not to tell our boys who were 7 and 11 at that time .
As the time goes on, only close colleagues know about my diagnosis. I was not happy to share with others, I continued my hibernation during the pandemic. Towards the end of March 2021 I looked through the Parkinson’s UK website to know what's their plan for World Parkinson's Day. Whilst scrolling around I came across with the “Get it on Time” campaign and the 2019 report. That opened my eyes! I have realised being a nurse with Parkinson’s I have a calling and duty towards the Parkinson's community, a real purpose behind my diagnosis. So that moment I decided to come out of my hibernation. I wanted to make a difference.
2021 April 11th - I joined the Parkinson’s UK forum , wrote the first poem of my life , joined team Parkinson’s and eventually shared my story with The Parkinson’s magazine of Parkinson’s UK. But all this time my boys were unaware. One time when I received the Parkinson’s magazine, after reading, I left it on the table. The intention was to get the boys to read through it and understand something about Parkinson’s. But the first question was whether “You or dad have Parkinson’s? Why are we receiving this magazine?”
A good opportunity to share but I didn't have the confidence, so I told them for information I’m receiving the magazine. Later, along with my colleague, I decided to create a presentation to raise awareness among our colleagues about “Get it on Time.” So I asked the boys to help me prepare the slides, the main purpose to fill their brain with Parkinson’s information. That really worked. They learned many things through the slide preparation. I thought to tell them during 2021 summer holidays, but I kept on loosing the confidence. Made many dates but none been successful. I shared with my fellow Parkinson’s group mates. They have given their experience and support but nothing has worked for me.
2022 March 10th - I tested positive for Covid with Omicron variant. Isolating at home. Poorly for the first few days. Then, whilst resting in my room, I could hear a conversation from downstairs. My little boy is asking dad “why are you reading about Parkinson’s?” Dad replied “why can't I? Because your Mum has Parkinson's.” I could hear his little feet running as fast as he could to me. Fractions of minutes later he was in my room, without giving me time to prepare he asked “Dad said you have Parkinson’s? Is that right?”
After taking a deep breath I said yes, that's right. He stared at me. . Then next question, “Show me your hand. Keep it straight.” He wanted to check for tremors, so I stretched out my arm and showed him. Luckily my hand was steady. Then I showed him the article published in Parkinson’s magazine about me. He didn't have the patience to read that. I knew he wanted to give me a hug but as I was in isolation he ran downstairs as fast as with his little feet again, this time to his big brother, and told him “do you know that Mum had Parkinson’s?” and he took the article from Google and both of them read it together. I was like oh my God , a big heavy stone has gone out from my heart. I felt relieved.
The following days I realised the saying sharing is caring. I have been overwhelmed by their support. “Mum so you need any help?” or “What can I do for you?” etc. My little one even reminded me to do things because “you may run out of time as we don't know how the disease progressess.” Then I learned kids are an easy category to share the news. They listen , accept and get on with it.
Living well with Parkinson’s is not easy. I believe to live well Parkinson’s You have to be a PARKINSON.
Be Positive, Active , Resilient, Kind to yourself, Insightful, Nurturing, Self-Confident, Optimistic and Noble. Parkinson’s Disease is unique but we are together in this.