Wakefield artist with Parkinson’s disease pleads with MPs to take action on disability struggle
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These are just three of the ways Parkinson’s disease can affect someone’s life.
An artist, writer and former teacher from Newmillerdam has addressed MPs in Westminster about the struggles faced by people with the condition.
Jan Sargeant was diagnosed with the condition in 2016.
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Hide AdAs a representative for charity Parkinson’s UK she spoke to the Minister for Disabled People Tom Pursglove as well as MPs Peter Dowd and Peter Aldous about the ways that disabled people are disadvantaged.
She said: “We focused on immediacies of energy costs and food prices and how they affect people with Parkinson's.
“Basically if you're disabled it costs you money that other people don't have to find.
“You're more affected by things like the cold. And it's not just people with Parkinson’s – people with other disabilities are others affected in different ways.
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Hide Ad"I know of people who are choosing to go to bed at 7pm because that's the only way they can keep warm.”
Jan said the issue of energy cost was pertinent because the day she met with MPs – Monday February 27 – was the day that energy regulator Ofgem reduced the amount energy companies could charge while average household bills were set to rise to £3,000 a year.
Jan said: "We covered the way these anxieties add to what can already be very severe symptoms of Parkinson's.
"People think it is just shuffling old people with tremors and it's not - there are more than 40 symptoms including acute anxiety and depression.
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Hide Ad"And the impact on mental health caused by added stresses and strain while being able to afford to eat healthily can lead to longer term demands on social and medical services.”
But Jan said she was optimistic that MPs had listened to her account and hoped changes would be made.
She said: “Whether they will do anything about it is down to the government.
"But the minister said issues would be raised with government departments
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Hide Ad“He said would make sure those messages were disseminated across government.
"I suggested they reintroduce disability champions or advocates in government departments so that kind of thinking could be built in at planning stages rather than the end.
“He said they were looking at that and some of the issues around accessing support available to make sure more and more people were aware of what was available out there.”
It wasn’t an easy journey given the way the illness affects Jan’s day-to-day life.
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Hide AdShe said: “It's not something I would do lightly. I also find London difficult, it's busy and noisy, my tremor was terrible but the journey was worth it because they did listen, take a lot of notes and their summing up statements suggested they had taken on board the key points, which was reassuring.
“Another reason it seemed worthwhile was I was the only one with Parkinson's there and I was there to represent the voice of people with Parkinson's across the UK and that is an incredible honour to be asked by Parkinson's UK.”
The charity says anyone can get the disease, young or old.
In the UK, around 145,000 people are already living with the condition.
Every hour, two more people are diagnosed, which is the same as 18,000 people every year.
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Hide AdJan said carers are the vital and underappreciated aspect in the background of people with disabilities.
She said: "You do, as a person with Parkinson's, rely more and more on a partner or spouse.
"My husband is 76. He has become my full time carer and I require him increasingly.
"He does so much and yet carers are very often the invisible people in this. And a lot of them don't get paid.
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Hide Ad“He's on a pension and doesn't get anything toward it but we can't manage without our carers.”
Jan runs a support group for people affected by the illness that has more than 2,000 members.
Parkinson’s UK says 37 people alive today will be diagnosed with the condition in their lifetime.
Jan started painting in 2018, following her diagnosis, and is represented internationally by a gallery in New York.
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Hide AdShe added: “They don't sell very much but it is something I find helps.
"I can't move physically well – I can't do exercise classes but the creative side of things really helps me.”
But she faces further challenges with her eyesight after being diagnosed with giant cell arteritis (GCA) – an inflammation of the artery lining that can cause vision problems – last August.
She said: “My husband says I’m greedy and Parkinson’s wasn’t enough!”
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Hide AdJan set up Lakeside Arts Group on Facebook in October 2021, which now has more than 600 members including many from Yorkshire.
Its aim is to encourage new and emerging artists working in a broad number areas, including photography,sculpture, music, poetry, crafts as well as painting.
Jan described it as “a community of artists who support each other.”
Before she was forced to retire as a result of her symptoms she worked in education.
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Hide AdShe was a teacher then a deputy head, followed by lead advisor for school improvement in North Yorkshire secondary schools, and from 2012 worked at Leeds Trinity University, training teachers.
She held the role of principal lecturer and was responsible for post graduate secondary teacher training courses.
She said: “I absolutely loved that job.
"I tried to keep going but it was impossible. I didn't have the stamina to do it. I took early retirement but it wasn't much of a choice.”
In other activities to battle against the hold the disease is trying to take, she is about to have a book about a miserable man from County Durham published.
It is titled Alan's Lesswilling Chronicles: Monologues of an Unhappy Man.
You can donate at www.parkinsons.org.uk.