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I copy news articles pertaining to research, news and information for Parkinson's disease, Dementia, the Brain, Depression and Parkinson's with Dystonia. I also post about Fundraising for Parkinson's disease and events. I try to be up-to-date as possible. I have Parkinson's
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Sunday, May 14, 2017

WATCH: Calls to support kids affected by Parkinson's

May 14, 2017

A Cornwall schoolgirl has told Pirate FM what it is like to have a mum with Parkinson's.
It comes as a campaign is launched to get more support for youngsters who have parents affected by the disease.
A film has been made to highlight the struggles of primary school-aged children who are thought to be living with a parent who has the condition, or a similar 'hidden disability'.
Eight-year-old Amy Fearn, from Launceston, said: "It's really hard because mum can't do much, so I can't go to clubs in the night and stuff like that.
"She can't take me places and we have to do stuff when she goes to bed - and she takes lots of tablets.
"It's sad and it's really hard... obviously, we have to do some more stuff for her because she gets tired and then we have to work out our own stuff.
"It's really sad because it's like we've got a mum with illness".
Campaigners say, as a relatively newly recognised phenomenon, there is little or nothing to support to help kids or to inform the professionals who interact with them.
The condition is not exclusive to the elderly, but experts believe as parents have children later in life so the risk of developing the disease while their children are still quite young increases.
Now a group of people with Parkinson's in the South West, who are members of the Peninsula Parkinson's Excellence Network (PenPEN), have worked with Parkinson's UK and Parkinson's experts and researchers at Plymouth University to produce the first information resource for teachers and professionals who interact with young children.
Lyn Fearn, who is mum to Amy, and also to 12-year-old Mael, said: "I went to a PenPEN meeting and the discussions were very much about the disease and older people.
"I thought 'what has this got to do with me?' and actually asked that question.
"The conversation then moved to my family's emotional and psychological experience: how Mael was taking responsibility for my welfare and how that was affecting his time at school; how Amy found it hard because I couldn't do with her the things other parents could do; and how teachers, doctors and other professionals just didn't understand our situation.
"I thought it was important that my children, and children like them, should have a voice and support. This is where our project has come from".
The film, called "Listen to my Thoughts", follows the experiences of Jess, a primary school pupil whose mum has Parkinson's.
It shows some of what she has to deal with at home and at school, and indicates the mutual benefits when she, her parents and her teacher communicate and understand the enormous impact Parkinson's has on life at home.
The film includes quotes from Mael and Amy about their experiences, and an interview with Helen Young, a teacher at Lewannick Community Primary School in Launceston.
Helen speaks of her experience of teaching children who are affected by living with a parent with Parkinson's and explains how teachers and other professionals can help.
She said: "If you know that there's a child within your remit who has any relative suffering with Parkinson's disease, it's just good to let them know that you are there should they need you or want to talk to you.
"As a teacher, you might be one of the few people that that child can access for information or for support, just to use as a sounding-board or a listening ear, and you need to make sure you are available should that occur".
Watch the film here:

Parkinson's is a degenerative neurological condition, for which there currently is no cure.
Main symptoms of the condition are tremor, slowness of movement and rigidity.
It is estimated that one person in every 500 has Parkinson's, about 127,000 people in the UK, and most people who get Parkinson's are aged 50 or over - but younger people can get it too.

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