I was asked by the editor of our new local paper to write an article fortnightly about living with early on-set PD. He had read my blog, liked it and got in contact.
Crickey, what a challenge, I had never done anything like this before. But I thought I’d give it a go. I have now been writing it for over a year, and I thought my blog readers might be interested in reading them. This is the first one published in November 2017.
If you would like to read them as they happen and you don’t live somewhere that sells the paper. E copies can be purchased on line and zapped into your inbox. Parkinality is a fortnightly column :
www.bishopsstortfordindependent.co.uk
First Parkinality Newspaper Column, The Bishop’s Stortford Independent, published November 2017
You won’t find the word Parkinality in a dictionary. Parkinality = Parkin(son’s) (Person)ality. Parkinson’s affects every single part of every single day – it has become part of my personality.
I was diagnosed with Early Onset Parkinson’s in November 2012, at the age of 44.
I am writing this column to raise awareness of this complicated, confusing condition and to let other people with Parkinson’s know they are not alone. I promise to be honest and transparent. This won’t be a medical manual – that would be dull. I am not medically trained – that would be worrying.
See it more like a romcom; it will be funny in places, in others you may shed a tear. You wouldn’t base your life around it and you certainly wouldn’t look to the leading lady for advice.
I often abbreviate Parkinson’s to PD, as in Parkinson’s Disease (not pole dancing, these are obviously very different, although both require flexibility and a good sense of humour). Even the word ‘disease’ has now been dropped because of it’s negative connotations. However, ‘PD’ sounds better than just ‘P’.
Parkinson’s is a (currently) incurable degenerative neurological condition and, unsurprisingly, could quickly drag me down. Stress and negativity make me feel worse and then symptoms often break through the medication. Putting a positive spin on things makes me feel a bit better and I believe that humour and positivity will encourage awareness and understanding of this condition.
Parkinson’s will be talked about and people will think of it when they want to do some fundraising. The scientists will work harder to find a cure.
When I was first diagnosed five years ago,, I was given the following advice by my Parkinson’s Nurse, ‘You are not ill: you have a condition which needs to be managed’
Although it does not reverse or cure the condition, PD medication is vital for attempting to manage the symptoms.
I currently take 14 tablets a day, that’s 98 a week, and 5,124 in a leap year. As I no longer perform cartwheels, I don’t know if I rattle.
The medication is amazing when it works and unless you are very astute, you may not realise I have PD. If the medication was reliable and managed all the symptoms 24/7, this would just be a diary of everyday life.
However, the meds are unreliable, they go into my stomach but are needed in the brain and sometimes they ‘get a bit lost’ (not a medical phrase).
When the meds switch off, often with no warning, you will definitely know I have PD, as random symptoms break through. It is then I look for other ways of managing the condition.
Since being diagnosed my life has become a bit like a game show where the rules keep changing. When meds switch off, the game show host will select something from the (un)lucky dip of symptoms.
‘Roll up roll up, what shall we hit her with right now … Ooh she’s crossing the road, lets switch off walking … now ‘get out of that’. It’s then I have to start thinking imaginatively and find a way to get moving.
Some readers may think I am making light of a serious disease. Let me make it clear that living with Parkinson’s is ‘insert your preferred expletive’. The symptoms impact on every part of every single day and every single night – yes, PD is 24 hours. Managing it is a serious business. I plan to share the ways I have found to manage this ever changing condition. Being diagnosed with a long term condition, changed my outlook on life, I now do things today, rather than putting them off. Learning new skills and setting new challenges keep my brain active, and I have surprised myself with some of the things I have achieved.
If you are a Neuroscientist, or if your aunt Mabel happens to be one, then please encourage them to find a cure. Although, it is not essential that the person who cures Parkinson’s is you, is called Mabel or is your aunt, they don’t even have to be a Neuroscientist – I am really not fussy.
On behalf of myself and the, approximately, 127,000 people living with Parkinson’s in the UK and the thousands worldwide, we need a cure now.