Big heading tonight!
I am sure there are many differing opinions on the topic of telling those in our lives about our diagnosis. We all do what feels right for us and I acknowledge that what is right for me, is perhaps not right for everyone. Recognising that we as individuals have different thoughts and experiences of telling others about our diagnosis is important.
First the ‘Why’
Why for me is so that I can feel comfortable with people around me, in every sphere of my life. I am open and honest with everyone about my diagnosis and pretty much I am an open book. I never want people to look at me displaying symptoms and wonder what is happening to me. I would rather they know and I can speak about being ‘a little twitchy’ than have those around me wonder what is going on.
Now for the ‘Who’
Basically, I would tell friends, colleagues, neighbours – not all of them, I’m not putting out a neighbourhood bulletin – but those I spend time with. When I went to the Bowling Club with my Aunt last week, I told those ladies that as well as having had a total knee replacement, I also had Parkinson’s. As I have a bit of trouble getting down to bowl, that quick conversation meant that they would understand why. Family of course know everything.
And the ‘What’ and ‘Not’
I will tell people that I am in the early stages and that medication is helping to keep symptoms under control. I share with others I spend time with that my processing of information is slower and I need to write things down to ensure they are not missed. The ‘not’ in this case is information that is too private and intimate that I would not share with anyone, Parkies or no Parkies.
The ‘Where’ – the penultimate category (managed to slip my favourite word in here, finally!)
That’s an easy one. Everywhere. Whether it’s in a work environment, sport or basically anywhere where I feel people may understand me better, I will let people know that I have ‘early stage Parkinson’s’. I feel it is important to talk about my Parkinson’s so that it is an opportunity to see someone with Parkinson’s that is still active and doing and enjoying life. I’m not quite the ‘poster girl’ for Parkies, but I hope that by being open and showing that a person with Parkies can have a good life is important. It is important to me that part of being open is that in some small way I might help to educate people that Parkies is not just about tremors and a shuffling gate.
Finally, ‘Just ask!’
I have found that it is rare for anyone to ask me how I am and how I am getting on with my Parkies. I had hoped that by being open, people would get to know how Parkies affects me. I try to tell people what I can about my progression and what it looks like, but asking questions can be helpful too!
When we were on our UK Trip, our nephew and I were sitting quietly together and he turned to me and asked how my Parkies was getting on. I was so pleased that he asked and cared enough to do so. We had a bit of a chat and it was nice to know that he was someone I could share about my Parkies and that he showed he cared enough for me to do so.
So, my individual journey is just that. My individual journey. Not anyone elses. We are all unique in how we present, how we progress and how we deal with things.
I hope that by sharing my journey with those who read my Blog, that I can help others to think about how their Parkies affects them and often those who care about them.
Parkies is not just part of my life, it is an integral part. It focusses me on what is important in life. It makes me a better more considerate person and makes loving my family and them loving me so important.
There is one thing I don’t think I will ever change. That is wanting to share – in a time and space that is comfortable for me – so that hopefully by sharing my story this will help others along the way.
My journey with Parkinsons 