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"An OAP at 18": The Parkinson's Disease Society
A friend in need is a friend indeed. There is no need to be alone these days as there is always someone, somewhere. The Parkinson's Disease Society is the sufferer's best friend.
Thc Parkinson's Disease Society was founded in 1969 because sufferers and their families wanted to find out more about the disease, the problems that arose and the treatment that was available. They have their own research centre where doctors are constantly researching the disease, looking for clues as to how it begins and also looking for a cure. About four years ago the Brain Bank was opened and requests for brains were sent out. They require a constant supply of brains to help their research. Brains are requested from those who suffer from the disease and from those who do not. Both Peter and I carry donor cards donating our brains to the Brain Bank. I feel this is very important and hope that my brain may one day help to find a cause and a cure.
The Parkinson's Disease Society provides a great deal of support to both the sufferer and their families. Any problem, big or small, they will do their utmost to help you with or put you in touch with someone who can. They have local branches throughout the country which offer more localised help and have their own ways of raising money. Like all charities The Parkinson's Disease Society relies on donations and fund raising to keep it operating.
One such fund raiser was my daughter, Ashleigh, and her friend Pauline. In December 1983 Ashleigh decided she wanted to raise some money for Parkinson's Disease. So they put together a Christmas concert. They wrote, produced and starred in the concert together with my son Stuart and five other young children, aged between three and thirteen. They charged ten pence for admission and during the interval they provided tea, coffee, juice and cakes and biscuits, which they had made themselves. No charge was made for refreshments but a donation box was placed in the centre of the table. The concert was brilliant, the acting and the singing were very good and they made all their costumes themselves from old clothes and cardboard. They raised a grand total of £13. I was so proud of her, of them all.
It is unusual for young people to have Parkinson's Disease and I had great difficulty finding other young sufferers whom I could contact. However, about four years ago Mary Baker took on the role of Welfare Director in the society and straight away things began to happen.
Mary soon found out that there were more young sufferers who, like me, thought they were on their own. As the majority of people in the local branches are over fifty, it was decided that the young ones needed a meeting of their own. and so the Young Think Tank was formed. Because there are only a few of us spread all over Britain the Think Tank is now held once a year. Every year the number of young sufferers increases, and after I placed an advert in a Scottish newspaper about young people with Parkinson's Disease I made contact with eleven more sufferers. So it appears that there are a lot more.
Various subjects are discussed at these meetings and experts speak to us and are on hand to help us. At the second meeting someone gave a talk on the behaviour of children whose parents have Parkinson's Disease. My daughter wrote an essay about her feelings which was read out and reduced a couple of women to tears. So have the tissues ready.
My Mum
I suppose after fifteen years you just get used to the fact that you have a disabled parent. I could not imagine my Mum any other way, than the way she is now. I do know that she gradually becomes worse, but I have watched this since I was about two years old when she had her first symptoms.
The first symptoms were that her foot would tighten up and turn over and inwards, making it impossible for her to walk on it. I remember that we used to have hopping races if this happened in the street, so as to stop people staring at her. I think she used to get really embarrassed, but then she could usually hide the fact that there was anything wrong with her, but now there is no way of hiding the fact that she has Parkinson's Disease.
Although she laughs and jokes about herself a lot and her uncontrollable movements, I know deep down that it must really hurt her not to be able to do things with her family that normal people take for granted. I hurt a lot sometimes, too, when I see her struggle and fall, knowing that she could injure herself badly at any time. A few months ago, she was shuffling around in the kitchen when she fell and hit her head on the back door which is made of glass, and even now it seems a miracle that she never went through it.
Now that I am older and understand more of what Parkinson's Disease is, I realise how much my Dad has also gone through. It is not only the disabled person that suffers and it has made me love and respect him even more. There are a lot of men who wouldn't stay with their wives and children with such reponsibility, as he has. Only a few years after they married he had to dress her, bath her and sometimes toilet her at her bad times, and knowing her pride has all gone, you can see in his face at times the pain he is feeling.
I also understand my little brother's feelings. I don't think he can remember her at the beginning. He does help her a lot, especially since I started a new job which meant having to live away from home. He gets deeply upset when kids at school make fun of his Mum. So, I know he hurts inside too.
It used to embarrass me, to push her in the street in her wheelchair. I did not want my friends to see me. But then I realised that this was MY MUM and I am not going to shut her away, she is no different from anyone else. My Mum has nothing to be ashamed of.
I know there is no cure for Parkinson's Disease and know that she will get worse and I am prepared for this. I sometimes look at my friends's mothers and wonder what she would be like or what she would be doing today if she were healthy. But no matter how bad she gets, I will always love her and she will always be MY MUM.
The young people at these meetings decided that they wanted to have their own magazine and also to be recognised as a group within the society. And so last year saw the birth of the Young Alert Parkinson's Partners & Relatives, YAPP&RS. We have our own magazine which appears six times a year, but we do still belong to the Parkinson's Disease Society. There have been several small seminars in various locations in order to keep communications going amongst old and new sufferers.
My contribution to the YAPP&RS is an 'Ideas To Help' column in which I inform other sufferers of any gadgets or home made ways of dealing with problems that Parkinson's Disease brings. The ideas come through the post from others or from myself. After having the disease for so many years Peter and I have found a few ways of dealing with some difficulties, such as using s swivel chair on castors to help me to get in and out of the table. Along with help from the Occupational Therapist, I have plenty of ideas and suggestions to write about.
My son, Stuart, has also taken an interest in YAPP&RS. He has just designed the first poster which, he has been told, should soon be on display at hospitals and health centres. Now he has been asked to design a T-shirt.
The Parkinson's Disease Society does a very good job and someone is always available to help you or even just to talk. They are definitely a very good friend to have. Their address is 22 Upper Woburn Place, London WC1H 0RA.
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