I am a Writer for ‘Parkinson’s Road’ global support community.
One of my cousins lives in the north of England. She is a kind person and she has taken a keen interest in learning about Parkinson’s, since my diagnosis last year. She has offered many a kind word, from the other end of the phone, and she has witnessed some of the worst of my symptoms first hand, during her visits. Her name is Debbie and she has been, I know, horrified that I have this disease.
Here we both are a couple of years ago:
Our Great Aunt, Phyllis, had Parkinson’s. Unlike Debbie, I was lucky enough to get to visit our Great Aunt, in my childhood. She was our maternal Grandfather’s sister; one of a number of siblings. She had an amazing laugh; rather like that of English comedy actress, Joan Sims. If you’ve ever heard Joan Sims laugh in the famed ‘Carry On…’ comedy film series, you will by now have a smile on your face at the memory of her contagious laughter; as I have when remembering our Great Aunt’s laugh.
I had known our Great Aunt was ill, back then. It was in my early teens that I became aware of the name Parkinson’s, as being the cause of her ill health and increasing disability. It never once occurred to me that I would one day follow in her footsteps. If only I had known. Goodness, what a lot of questions I would have asked her and what a discussion we would have had. Yet, from all of the science I read, a familial, genetic cause for Parkinson’s seems largely to be dismissed in all but around 10% of cases.
“It is estimated that up to 10% of cases of Parkinson’s, so 10 in every 100 people with Parkinson’s, may be inherited. This means there may be genetic factors that significantly increase the risk of developing Parkinson’s within members of a family.
Most people have what is called ‘idiopathic Parkinson’s’, meaning that there is no known cause and no clear genetic cause. Research is being carried out on the role of genes in idiopathic Parkinson’s, and whether there are any genes that increase your risk of developing the condition but do not have a major effect on your family’s risk of developing it.” – Parkinson’s UK.
In my view, this percentage is likely to increase in the future. Diagnostic methods are improving and greater consideration is being given to the non-motor symptoms that have often, previously, been discounted as an indicator of the disease.
When I was diagnosed, last year, I decided to do some fund raising each year, towards raising a target sum of £10,000 for Parkinson’s UK. This charity had been very helpful to me as a source of information in the years of being monitored and tested prior to being diagnosed. Indeed, it continues to be so even now.
Knowing that I am fund raising, my cousin set about a secret plan. I came to learn of this when, on January 1st 2018, Debbie paid £170 to the ‘Just Giving’ fund raising page that I had set up for my fund raising activities. With ‘Just Giving’ the money paid in goes directly to the charity. I was shocked at the size of the donation and so I telephoned Debbie to see if she had intended to donate £17.00 and had made an error with the decimal point! It was not an error and Debbie explained why.
Secret Fund Raising:
Unbeknown to me, Debbie had set up a fund raising table at her workplace. Here, Debbie set out, on various days, cakes, biscuits and home made treats. She had created an ‘Honesty Box’ so that if a person walked by the table and took a treat, they would leave a suitable donation in the Honesty Box. Well, that it how this simple and lovely idea by my very kind cousin generated £170. Debbie’s snack hungry, generous colleagues from her workplace at Ineos in Hartlepool had raised £170 simply by enjoying snacks and treats!
Here are some photos, taken by Debbie:
This proved such an effective way to raise money for charity and my fund raising page climbed a big step closer to the fund raising target as a result.
A heartfelt thank you to my wonderful, kind and amazing cousin, Debbie. Lots of love to you Debbie. What you did means so much to me. xxx
Also a huge thank you to Debbie’s colleagues at Ineos in Hartlepool, for giving so generously. Your donation will help Parkinson’s UK to train new volunteers and provide a valuable resource to people with Parkinson’s and their families. xxx
(C) Dean Parsons. March 2018.