Before I begin I need to remind you that this is a personal blog. There is no right or wrong way to deal with this diagnosis. The condition, symptoms and feelings are very individual.
Firstly, my apologies for going back on a promise. I said it wasn’t a ‘Who Dunnit’ and there I was leaving you with a cliffhanger. I remind you of the last six words of the ‘diagnosis day’ blog, describing how my outlook has changed since diagnosis.
‘… in some ways for the better’.
I may have left you wondering how on earth my outlook on life could be anything but negative, after being diagnosed with an incurable degenerative neurological condition.
I promised to be honest, so it would be very wrong if I didn’t mention the feelings, including shock, fear, anger and frustration, which have ebbed and flowed since D Day. However, I am not going to dwell on these at the moment. As promised, I am looking for the positives in a diagnosis which could very quickly drag me down.
So since my diagnosis, I now more than ever :
- Appreciate how wonderful and complex the human body is.
- Appreciate the times when my brain and body are working together as a team.
- Live in the moment.
- Appreciate the kindness of strangers.
- Appreciate wonderful friends – old and new.
- Try new things today, rather than putting them off.
- Challenge myself and push myself to keep going.
- Look for the positives.
I have a Neurologist and PD Nurse who are really supportive and direct me to more support when needed. The best piece of advice I was given in the few weeks after diagnosis was:
- ‘I am not ill, I have a condition which needs to be managed’
In other words, I see the medical professionals a couple of times a year and the rest of the time I am Caretaker Manager of my PD. If only it was as straight forward as the offside rule (which, in case you wondered, I do know). In the same way that the symptoms take over every part of every day, managing the condition is a full time job. Not only with medication, but also, exercise, diet, hydration, sleep and many more whilst all the time trying to remain positive.
In this blog I plan to share the ways I have found to manage this ever changing condition. Although I am positive, this blog may sometimes be difficult to write and read as PD tests me on a daily basis.
PS : not everyone has access to a Parkinson’s Nurse. So if you ever get asked if we want more PD Nurses, please say ‘yes’ and tick that box – thanking you.
PPS : I have had lots of good feedback from people reading the first couple of pages of my blog. However, several younger people have said that the blog is ‘sick’. I hope that I am able to dispel this thought by referring to the quote above ‘I am not ill, I have a condition which needs to be managed’.