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Tag Archives: confidence

Exercise and disability: ‘Now things hurt for the right reasons’

17 Tuesday Sep 2013

Posted by a1000shadesofhurt in Uncategorized

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confidence, Exercise, multiple sclerosis, Self-esteem, symptoms

Exercise and disability: ‘Now things hurt for the right reasons’

It’s hardly surprising that Shana Pezaro started comfort eating. After 20 years of unexplained and debilitating symptoms, she had just been diagnosed with multiple sclerosis. Having built up her own stage-school business, she was now losing the ability to walk and was forced to sell up. Then her marriage fell apart.

“My husband had found my illness and disability very difficult to deal with, but we always thought I was going to get better,” says Pezaro. “Then, when I was finally diagnosed with MS in 2007 and we realised I wouldn’t, he just couldn’t handle it. I used to be a dancer, but my body had changed and he told me he just couldn’t find me attractive anymore. Within a year of my diagnosis, we’d split up.”

It was a relief, she says, when he finally left, but the experience nevertheless dealt a blow to her self-esteem, not helped by the fact she had started to put on weight.

“I went from 12st to 15st in the space of three years. The fatigue was so bad that I didn’t have the strength to cook. I was living on microwave meals and snacks. The steroids and other medications made me incredibly hungry. And of course as my legs got worse I was getting less and less exercise – I could barely walk. I was miserable.”

Weight gain is a serious issue for the disabled community. In a study of 30,000 people published this summer by the University of Texas School of Public Health, 42% of adults with a disability were reported as obese, compared with 29% of those without a disability. Gaining weight not only affects a person’s emotional wellbeing, but can also make mobility even harder and symptoms feel worse. Yet fatigue and pain can make sport participation seem daunting. And although things are improving following the success of the Paralympics, access remains a major barrier. Just 18% of people with a disability or long-term limiting illness participate in sport each week, around half the level of the general population, according to a survey by Sport England.

“You don’t have to eat a lot to put on weight if you’re not moving and your body isn’t burning calories,” says Vanessa Daobri, a gym instructor who specialises in working with people with disabilities. “Disabled people often suffer because they don’t know how to exercise. If the disability is a result of an injury or it’s been a slow onset, they may find it hard to accept that they can’t do a sport in the way they used to, so they feel there’s no point.”

Organisations such as Aspire and the English Federation of Disability Sport run inclusive gyms across the country. But not everyone is lucky enough to be near one, and regular gyms are still lagging behind, says Daobri. “Often the staff get the approach wrong – sometimes it’s just laziness, sometimes it’s ignorance. Health and safety is used as a crutch, too.” Another issue, she says, is that disabled people can feel frightened to be seen going to the gym in case their benefits are cut.

Daobri has Ehlers-Danlos syndrome, a disorder affecting collagen. In 2007 she grew from a size 12 to a size 24 in less than a year. She felt “stuck”, until she joined a wheelchair racing group and the coach asked her if she used the gym.

“I just laughed,” she says. ‘I thought gyms were not for me – they were for other people.” She was shown how to use gym equipment in new ways and quickly became “addicted” to exercise. Now, she has made a career out of helping disabled people find ways to get fit.

“Once someone opened the door for me I realised there was a whole world out there,” she says. “Whatever your disability, there’s a version of a sport for you – you just have to be a bit creative.”

After six months of post-divorce counselling, Pezaro decided she wanted to lose weight. “I got a brilliant new carer who got me eating healthily,” she says. “Then I found out there was an MS treatment centre near me that runs lots of different exercise classes.”

She signed up to a class she has come to describe affectionately as “sadistic PE”. “The instructor is ex-military but also a counsellor and herself has MS. So she completely understands us, but she doesn’t let us get away with anything. We adapt everything to our own personal needs. It’s not your average fitness class – it’s not unusual for people to collapse and have a leg spasm in the middle of their situps, or to suddenly fall off their exercise ball, but we just laugh about it.”

At first Pezaro was unable to do most of the exercises, but she persevered and since starting the class three years ago has lost nearly 4st.

“It’s not been easy,” she says. “It took me 30 months to lose 45 pounds. But I didn’t get demoralised. I knew that over the years it would add up. And the more I’ve exercised the better my fatigue is. I still can’t walk, but I now have less weight to lift when I’m using my frame, or getting on and off the toilet, so everything is easier.”

Pezaro’s confidence has been transformed and now she is enjoying dating again. But perhaps most the important gain has been to her sense of control.

“I really worked myself at last night’s class, and today every muscle in my body hurts,” she says. “But I’m so used to living with pain, it’s kind of nice to know that for once, things are hurting for a good reason.”

• For information and support on multiple sclerosis visit mssociety.org.uk. Aspire’s Instructability programme offers free fitness industry training to disabled people. Visit aspire.org.uk

Stroke survivors and their families left to deal with the emotional impact alone, says report

01 Wednesday May 2013

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology

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anxiety, carers, confidence, Depression, family, relationships, stress, stroke, support

Stroke survivors and their families left to deal with the emotional impact alone, says report

Stroke survivors and their families feel abandoned by health and social services after being left to deal with the emotional impact of stroke alone, a report reveals today.

The report, ‘Feeling Overwhelmed’, published by the Stroke Association, marks the beginning of Stroke Month and details the emotional strain of strokes on survivors and families after they have left the hospital.

More than half of survivors experienced depression and two thirds anxiety, in addition to lack of confidence and fear of recurrent stroke, the association says.

A high percentage of stroke carers are also reported to have experienced depression, stress, anxiety and frustration. Relationships are proven to suffer, with almost three in ten couples separating or considering it following stroke.

Of more than 2,700 people surveyed at the end of last year, 79 per cent claimed to have received no information or advice on how to cope with the emotional consequences of strokes.

Claire Whitehouse, 23, from Bournemouth, suffered a stroke when she was 19. Following her release from hospital, Claire suffered from depression and anxiety which also led to anorexia. She said:  “I wish someone, when I was in hospital, gave me a big leaflet with everyone I’d need to contact and said This is what you’re going to experience and this is the group you need to go to’. We need some information to tell us what’s going on.

“I can push myself to become physically able, but emotionally it’s much harder.”

In response to the findings, the Stroke Association is calling for psychological and emotional support to be as integral to recovery as the physical rehabilitation. It wants information and support to be accessible to everyone, survivors and carers, who have been affected by the illness.

How One Charity Is Tackling Complex Mental Health Problems Using The Simple Power Of Reading

06 Tuesday Nov 2012

Posted by a1000shadesofhurt in Uncategorized

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books, Children, confidence, dementia, literature, mental health issues, MS, physical health, reading, relaxation, symptoms

How One Charity Is Tackling Complex Mental Health Problems Using The Simple Power Of Reading

It is, as one member of the Reader Organisation puts it to me, like watching a dozen tiny miracles.

Sat around a kitchen table in a mental health ward in central London, five patients are munching biscuits and taking turns to read out loud from Great Expectations.

We pause after the scene where Pip meets Miss Havisham sat alone in her cobwebbed bedroom.

Lucy, a London woman in her 30s who looks far older after years battling alcoholism, speaks first.

“It’s like me when I was drinking, that is” she tells the group with a nervous chuckle.

“I couldn’t let go of who I was. Couldn’t move on.”

We pick up the story again until Pip is humiliated by Estella, runs away and kicks a wall in frustration.

Ryan, a Scotsman with big, bunched shoulders says in an intense, slow voice that he felt exactly the same way as Pip that morning talking to his doctor.

“You can feel patronized at every stage in life, especially when you’ve got a mental illness,” he says.

“Doctors, people in shops, your children’s school teachers…” he flares up momentarily, getting angry as he tells the anecdote, then relaxes so we can carry on the story.

Up until this point Jan, a softly-spoken woman in her late 50s who has suffered for years with manic depression has remained politely quiet.

But at the group’s request she takes a turn to read in a beautiful, expressive voice which everyone compliments afterwards. She ends with a smile and begins happily nattering about how much she loves Dickens, before catching herself.

“I can’t believe I just started a conversation!” she says, blushing.

For ten years, the Reader Organisation has been helping some of the most vulnerable people in society feel better by carefully harnessing the power of reading.

In schools, care homes, psychiatric wards and local libraries across the UK, sessions held by one of over 40 trained facilitators provide a haven for troubled kids, elderly people battling dementia and people with a range of mental illness, from depression and schizophrenia to drug addiction.

The format of the sessions is very simple. Taking it in turns to read, the facilitator and the group work through a novel or short story, pausing at key moments to share their thoughts about the story and how it makes them feel. Then they end with a poem.

There is no attempt to ‘analyse’ the texts in any academic sense, just to empathize with the characters and debate the plotlines. But then there is no ‘dumbing down’ either – the reading list is resolutely classic, from Shakespeare to Steinbeck to Wordsworth and the Romantics.

The therapeutic benefits are two-fold. First as Jane Davis, the charity’s founder and a former literature tutor, puts it: “there is something about reading aloud, something rhythmical, comforting, childlike and secure that either directly or indirectly addresses that inner weather we all experience. That’s why people love it.”

The second, particularly for people suffering from mental health problems like those I meet in London, is the opportunity to share how they are feeling with others through a form of displacement.

The characters in Great Expectations or Shakespeare or any of the texts the Reader Organisation use function as vessels – or as Dr Kathryn Naylor, an Associate Specialist in Forensic Psychiatry at Ashworth Hospital puts it: “a way of expressing emotions without having to say what’s really upsetting you.”

Naylor treats men who are mentally disordered offenders, and has been using The Reader Organisation as a supplementary exercise with her patients (“it’s not therapy it’s therapeutic” she explains) for many years.

The results, she says, can be amazing.

“We had a man with us in his early 40s with paranoid schizophrenia, who was very suspicious of other people’s motives. He found it very hard to talk to people and had bad social anxiety.

“He started coming to the reading group and just sitting in the corner and listening. This happened for about 3 months, when eventually one day at the end of a session he suddenly said: ‘can I read the next page?’.

“We saw that as an incredible breakthrough, being able to read in front of other people. That was accompanied by him engaging in cognitive behavourial therapy, looking at some of the underlying reasons for his paranoia and mental illness.

“The group brought about real progress for him. He has since left the hospital. Prior to the group he felt he couldn’t even leave the ward.”

The Reader Organisation wasn’t founded with the aim of helping people’s mental health. Instead, it was born out of Jane’s belief that the great works of literature should be accessible to all, no matter their background.

“Books did something for me that helped me have a different kind of life to the one I was heading for,” she explains.

“I had been a 12-year-old run away. Someone who at a young age had been using drugs and drinking a lot. I was disturbed teenager who had a shoddy education, so when I got my degree and even my PHD I still very strongly had a sense of myself as not being properly educated.

To end up as a university lecturer, she says, felt amazing.

“But I couldn’t help thinking that out there in the wide world was someone like me in a bus shelter who needed to find the same things I’d found.”

After 15 years teaching the canon to bored undergraduates mainly from comfortable middle class homes at the University of Liverpool, Jane finally found an opportunity to try out her theory. In 2002, she was given a £500 budget to set up a reading scheme under the university’s new objective of ‘widening participation’. It would prove to be not just a turning point in her life, but go on to change many others.

“It was a one off, 5 week summer project. The idea was take some books I thought was great out of the university and out into places you wouldn’t expect to find a lot of readers. I recruited a lot of the people in that first group through friends who worked in community work. They weren’t very literate, so I just read to them.

“It was fantastic. It was like meeting up with people from my childhood – the ones I used to meet in the pub where I worked – but instead of serving up beer and vodka I was serving up Shakespeare. People loved it and realised that this was what I wanted to do. I did one more year at the university and kept the group up in my own time. Then I handed my notice in.”

The first few years were a struggle as Jane tried to find funding for a project that didn’t give anyone qualifications or get them into work. But it was as she gathered feedback from participants that Jane realised the true potential of her inclusive, accessible approach to sharing literature – not to educate, but to heal.

“We were frantically trying to gather evidence so that at the end of our year we could justify the project continuing. So we began asking the people attending the group: ‘what’s it done for you?’

“The responses were astonishing. People would say: ‘I’ve got MS, and when I come here for two hours a week I seem to get into such a state of relaxation I become unaware of my symptoms’, or ‘I have chronic pain but I forget about it here because I’m so immersed in the reading.’

“We knew that a number of the people attending had serious mental or physical health issues, but these were powerful and surprising moments. As well as giving people the confidence to read Shakespeare, we were making them feel better too.

“A woman said: ‘I’m bipolar and I’ve been bipolar for 30 years and I’ve tried everything to get better, but this is brilliant. It should be available on the NHS.’”

These early responses would send Davis’ project on a whole new trajectory, and change her entire outlook on what the Reader Organisation could achieve.

“I’d never thought of it in those terms before. But if one in four of us have mental health issues, it must really be more like two in one, because they’ll be a lot of people out there like me who have had mental health problems but didn’t bother going to see a doctor about it.

“Now I don’t think of ‘healthy’ and ‘unhealthy’ as two separate states, I think they’re on a continuum. I realised that what was true for me as young adult – that I love reading because it makes me feel great – could be true for anyone with a little help.”

If this all sounds rather anecdotal, there is a weight of academic evidence to support The Reader Organisation’s claims too.

A study carried out by the University of Liverpool in 2011 looked at the long term affects of participating in Get Into Reading, The Reader Organisation’s flagship program, on older people living with dementia.

They found that regular attendance was effective at improving the memory and concentration of patients, and had a positive long term impact on reducing symptoms such as delusion, anxiety and irritability. It concluded: “the Get Into Reading model should be extended to all care homes.”

Today, the Reader Organisation has just celebrated its tenth anniversary. It now runs 100 weekly reading group in its original home of Wirral alone, and has teams set up in ten different boroughs of London and areas of South Wales, Belfast, Durham and Glasgow – as well as sister projects in Denmark and Australia.

Speaking to anyone involved, from the nurses and volunteers who facilitate the groups to the readers themselves, what comes through is the overwhelming potential everyone feels the scheme has.

“There are a lot of areas of life where what we do could work,” Jane tells me when I ask about the future.

“The army for example. Veterans. People with post-traumatic stress – why not?”

Give it another ten years, and perhaps we’ll no longer see reading as simply as a source of pleasure or a route to education but a way to tackle diseases of both the body and mind.

To learn more about The Reader Organisation check out their website.

The Untold Story of Childhood Sight Loss

20 Thursday Sep 2012

Posted by a1000shadesofhurt in Visual Impairment

≈ 1 Comment

Tags

anxiety, blindness, Children, confidence, Depression, loneliness, sight loss, support, visually impaired, young people

The Untold Story of Childhood Sight Loss

People often ask me what the worst thing about being blind is. My response to them is that you’d be forgiven for thinking that it is not being able to see. But actually there is an untold story when it comes to the dark reality of sight loss, particularly childhood sight loss.

I am the chief executive of a charity called The Royal London Society for Blind People and we work with blind young people every day. They tell us that it is not the lack of full sight that is the problem, but the lack of confidence, resilience, friends and hope for the future.

If one was to talk to blind young people, you will find that by the age of six they are already beginning to limit their horizons. By the time they are 19 they are telling us that they are lonely, their parents do too much for them, they don’t know how to be cool, and that they are extremely worried about their future.

The stats speak for themselves: 40% of blind and partially sighted young people don’t have any local friends to play with, and 80% say that they have little hope for what life holds. We believe a quarter of blind children under the age of 12 are depressed.

One young teen called Lee* spoke to us about his experiences. Lee was the only visually impaired person at his high school and for a long time he was lonely and depressed because he couldn’t go out and do the same things as his sighted friends.

Since joining one of RLSB’s Social & Peer Groups, Lee is much happier and more confident about what he can achieve. And in his own words: “I don’t feel so alone”.

Lee was lucky to get the help and support he needed. But what happens if blind young people do not get the right support? We need to look at how their adult counter-parts are fairing:

    • 66% of registered blind and partially sighted people of working age are not in employment
    • Two thirds live on the poverty line
  • More than 30% will live with clinical depression and a further 30% will live with severe anxiety

This is not the aspiration that any mum or dad has for their child.

It’s time to face up to the fact that this is the real problem that faces blind young people today. Despite the continued investment that has gone into supporting blind and partially sighted young people and their families, very little has changed in terms of their life chances despite our best efforts.

It’s deplorable that this is still the case in 21st century Britain, which is why we have launched The Untold Story awareness campaign. The campaign is asking the public to reconsider what they think the challenges around childhood sight loss are. Adverts on the London Underground and played out on Classic FM tell what we know to be the real story about a blind young person’s experience of growing up.

We are asking the public for their support in helping us to tell the untold story. All they need to do is copy and paste #ICanSeeLee and I’m sharing his story: http://www.rlsb.org.uk/lee to their Facebook status and Twitter feed.

By sharing the message we hope that the issue will be bought to the attention of tens of thousands of people who in turn can support RLSB and help us bring about real change through life changing interventions, such as our peer groups.

This campaign is about telling the country that as a society we are failing young blind and partially sighted people and it’s time to change the record. That it’s a time for a life without limits for blind young people.

*Name has been changed

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