Positivity with Parkinson’s

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News stories showed fifty-four-year-old Mark Worsfold was arrested at the 2012 Olympic games for his suspicious behaviour, in that he was not smiling and expressly showing that he was enjoying himself and because of ‘his manner, his state of dress and his proximity to the course’.

Tremors? Slow movement? Blanked expression? ‘Shifty’ behaviour?

Whilst these could be the signs of drunkenness, drug abuse or a suspicious characters, are you aware these are some of the most common symptoms of Parkinson’s Disease?

Parkinson’s Disease is a progressive neurological condition which affects around one in every 500 people. That equates to around 127,000 people in the UK. Parkinson’s is caused by a lack of a chemical called dopamine, because some of the cells in their brain have died. Without this, many people find their movements slow, as the loss of these nerve cells in the brain causes the symptoms of Parkinson’s to occur. Parkinson’s Disease does not only have the obvious physical symptoms, such as slowness, tremors, rigidity and seemingly blanked facial expression, but also causes tiredness, pains and depression among other things which can impact on the daily lives of those suffering from it. While there has been progress in medical care, there is yet to be a cure for Parkinson’s and the disease is one which progressively worsens for the individual over time. A huge lack of awareness over the symptoms of the disease, and its impact on lives, is something which in itself poses as a challenge for those living with Parkinson’s.

But it’s the new year afterall. Where is the positivity? New year, new challenges, new determination and new positivity.

A few days into the New Year, I posted my own story of the impact of knowing someone with Parkinson’s Disease by sharing (for the first time on social media) a Justgiving fundraising page for my Dad. Around 10 years ago, my Dad was diagnosed with Parkinson’s. This May, he will be cycling the 81 mile ‘Etape Caledonia’ for the sixth time.

I thought initially that I could ignore it and pretend nothing would change and that it would not affect my family and daily life… thought that if I told people that I had Parkinson’s, that I would be, sympathetically perhaps, cast aside by the wider world’ (from his Justgiving page)

It took a lot of time for my Dad, and our family, to come to terms with the realities of his Parkinson’s and the future realities which we would all face from it, and for so long it was an ‘elephant in the corner’, known about but never discussed. But overwhelmingly, I remember my Dad telling me he didn’t want us to treat him differently, or act like he couldn’t do things anymore, and that he was still the same person, ‘just a bit slower’. He couldn’t have been more right about this, as 10 years on, he still is one of the most determined and capable people I know and never fails to amaze us with his ambitions. He is positive in the face of his struggles and has learnt (more than ever) to live life to the fullest.

One of the crucial things to come from this all is to learn that being open and honest and understanding of illnesses which have such an impact on a persons life hopefully means that other people do not have to face stereotypes and misunderstandings in the same ways. People with Parkinson’s have enough of a struggle without having to suffer through the stereotypes, stares and assumptions of their disease being associated with such negativity as alcoholism and drug abuse.

This year my Dad has taken his challenge is one step further. In April he will be turning 60, and ever determined, over the course of this year he has challenged himself with fundraising £60,000 for Parkinson’s UK.

‘My fundraising target is very ambitious, but if it is achieved it would fund cutting edge research for a full year and fund a Parkinson’s nurse for a day a week for a year.’

He has many plays for trying to raise this funding, but his biggest event will be the Etape cycle. I don’t know about you, but even in the face of my ever hopeful new years’ fitness resolution, I cannot image ever being able to complete an 81mile uphill cycle.

My Dad’s story is just one of thousands, and there are so many people out there who struggle through things such as Parkinson’s and other diseases like it without a platform to discuss it so openly. Parkinson’s may slow movements, but it does not impact on a person’s personality.

If you would like to find out more information, ways to get involved, help raise awareness or funding, please have a look at the Parkinson’s UK website: https://www.parkinsons.org.uk/

or in more detail about my Dad’s own experience and fundraising challenge: https://www.justgiving.com/fundraising/Marc-van-Grieken1?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=Marc-van-Grieken1&utm_campaign=pfp-share

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Lottie van Grieken

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