CARRIER Robotic Wheelchair Can Ascend Stairs On Its Own
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Showing posts with label wheelchairs. Show all posts
Showing posts with label wheelchairs. Show all posts
29 September 2009
25 September 2009
Bride won't show up at wedding, but she will be everywhere
By Burt Constable | Daily Herald Columnist
The banquet hall for Annie Hopkins' wedding reception is rented for Oct. 3. A jazz trio will set the mood for the elegant, reception dinner of steak, chicken and a vegetarian option. The wedding band rocks, and the army of guests is ready to cut loose after eating. And the open bar, don't forget the open bar. As an added bonus, Annie's 25th birthday is just three days later.
It promises to be like one of those other weddings where Annie had the time of her life. The Batavia woman always had great fun at weddings, right up until the day she died.
"Annie loved weddings so much, she wanted to have one instead of a funeral," explains her big brother, Stephen Hopkins, 26, who has orchestrated this wedding celebration for his sister, who suffered from spinal muscular atrophy and died Jan. 20 of complications during a medical treatment.
A wedding bash for a dead woman who wasn't even engaged is unusual.
"That's why I think out of the 400 people we thought might show up, we'll only have 250," says her brother, who goes by Stevie. "They just don't get it. That's fine. I'm down with being unique."
He gets that attitude from his little sis, says Stevie, who also shares the spinal muscular atrophy that put them both in wheelchairs.
"It doesn't stop us from doing everything we want to do," says Stevie, giving Annie credit for blazing that trail. "She was an awesome, awesome girl."
Living up to her brother's description of her as a "disability advocate and socialite," Annie had great hair, makeup and fashion sense. She sported eight or nine tattoos. And when doctors or nurses noted piercings such as the one in her nose, she sometimes flashed them a peek at two more piercings they might not have expected on someone in a wheelchair.
"Annie was a beautiful, vibrant woman with an unmatched sense of humor," says Katie Arnold, 23, who became best friends with her neighbor when they were little tykes. "She taught me so much about independence, acceptance of others, and always striving to do the best for yourself, your body, your friends, family and community."
With more than 2,000 people who attended her wake, Annie's friends can't fit into one column.
"Annie Hopkins was calculatedly reckless in how she chose to live, always pushing the boundaries of her disabilities," e-mails Aaron Mlot, 31, of Downers Grove, who became a friend after volunteering with the Muscular Dystrophy Association. "While this at times worried her family and friends, she never hesitated to test her limits, especially when it came to giving to others. Annie was everything a person hopes to be as a family, friend and community member. She was generous, courageous and empathetic, and she lived how people all wish to live. Annie embodied the very best spirit that humankind has to offer one another and the world."
The daughter of Stephen and Leslie Hopkins, Annie graduated from Batavia High School and, despite having lots and lots of fun with her brother and a host of friends in college, got a bachelor's degree in community health and a master's degree in disability studies and human development from the University of Illinois at Urbana-Champaign. She was a community-access consultant for the university's Disability Resource Center, a regular at the pride parade and other events supporting people with disabilities, was working on her doctoral degree and formed her own company called 3E Love, www.3elove.com, which stands for her call to "Embrace diversity. Educate your community. Empower each other. Love life."
Annie designed and trademarked the company logo of a wheelchair sitting on a heart, and had that image tattooed on her back.
"I got her wheelchair-heart symbol tattooed right after she got hers. She was SO much fun," e-mails 20-year-old Viki Peer of Chicago, who started as Annie's personal assistant and became a great friend.
"I'd say more than 150 people have that tattoo now," notes Stevie, who is one of them. Annie's Facebook writings and videos, such as the ones of her putting on makeup or spending several minutes zipping around in her wheelchair as she uses a slotted kitchen spoon to retrieve her dropped cell phone, are funny, touching and inspiring.
"In addition to grieving the loss of Annie these past few months, I am constantly reminding myself how amazing it is that I did have her in my life and I will always have her in my life," writes Christine Scully, 26, a friend, roommate and assistant for Annie. "Annie called herself 'Everywhere Annie,' and she really is everywhere, even in death."
Friends say Annie's spirit will be at the wedding reception, which is open to the public and doubles as a fundraiser for the Anne Hopkins Foundation, which awards scholarships to students working for people with disabilities. Visit the Web sites www.annehopkinsfoundation.org and www.annieswedding.org for more information.
"Annie didn't care that she couldn't walk. She was upset she couldn't dance," Stevie wrote in a blog on the day Annie died. "Here is to hoping she's dancing now."
Watch videos of Annie Hopkins at www.youtube.com/user/annemariehopkins
The banquet hall for Annie Hopkins' wedding reception is rented for Oct. 3. A jazz trio will set the mood for the elegant, reception dinner of steak, chicken and a vegetarian option. The wedding band rocks, and the army of guests is ready to cut loose after eating. And the open bar, don't forget the open bar. As an added bonus, Annie's 25th birthday is just three days later.
It promises to be like one of those other weddings where Annie had the time of her life. The Batavia woman always had great fun at weddings, right up until the day she died.
"Annie loved weddings so much, she wanted to have one instead of a funeral," explains her big brother, Stephen Hopkins, 26, who has orchestrated this wedding celebration for his sister, who suffered from spinal muscular atrophy and died Jan. 20 of complications during a medical treatment.
A wedding bash for a dead woman who wasn't even engaged is unusual.
"That's why I think out of the 400 people we thought might show up, we'll only have 250," says her brother, who goes by Stevie. "They just don't get it. That's fine. I'm down with being unique."
He gets that attitude from his little sis, says Stevie, who also shares the spinal muscular atrophy that put them both in wheelchairs.
"It doesn't stop us from doing everything we want to do," says Stevie, giving Annie credit for blazing that trail. "She was an awesome, awesome girl."
Living up to her brother's description of her as a "disability advocate and socialite," Annie had great hair, makeup and fashion sense. She sported eight or nine tattoos. And when doctors or nurses noted piercings such as the one in her nose, she sometimes flashed them a peek at two more piercings they might not have expected on someone in a wheelchair.
"Annie was a beautiful, vibrant woman with an unmatched sense of humor," says Katie Arnold, 23, who became best friends with her neighbor when they were little tykes. "She taught me so much about independence, acceptance of others, and always striving to do the best for yourself, your body, your friends, family and community."
With more than 2,000 people who attended her wake, Annie's friends can't fit into one column.
"Annie Hopkins was calculatedly reckless in how she chose to live, always pushing the boundaries of her disabilities," e-mails Aaron Mlot, 31, of Downers Grove, who became a friend after volunteering with the Muscular Dystrophy Association. "While this at times worried her family and friends, she never hesitated to test her limits, especially when it came to giving to others. Annie was everything a person hopes to be as a family, friend and community member. She was generous, courageous and empathetic, and she lived how people all wish to live. Annie embodied the very best spirit that humankind has to offer one another and the world."
The daughter of Stephen and Leslie Hopkins, Annie graduated from Batavia High School and, despite having lots and lots of fun with her brother and a host of friends in college, got a bachelor's degree in community health and a master's degree in disability studies and human development from the University of Illinois at Urbana-Champaign. She was a community-access consultant for the university's Disability Resource Center, a regular at the pride parade and other events supporting people with disabilities, was working on her doctoral degree and formed her own company called 3E Love, www.3elove.com, which stands for her call to "Embrace diversity. Educate your community. Empower each other. Love life."
Annie designed and trademarked the company logo of a wheelchair sitting on a heart, and had that image tattooed on her back.
"I got her wheelchair-heart symbol tattooed right after she got hers. She was SO much fun," e-mails 20-year-old Viki Peer of Chicago, who started as Annie's personal assistant and became a great friend.
"I'd say more than 150 people have that tattoo now," notes Stevie, who is one of them. Annie's Facebook writings and videos, such as the ones of her putting on makeup or spending several minutes zipping around in her wheelchair as she uses a slotted kitchen spoon to retrieve her dropped cell phone, are funny, touching and inspiring.
"In addition to grieving the loss of Annie these past few months, I am constantly reminding myself how amazing it is that I did have her in my life and I will always have her in my life," writes Christine Scully, 26, a friend, roommate and assistant for Annie. "Annie called herself 'Everywhere Annie,' and she really is everywhere, even in death."
Friends say Annie's spirit will be at the wedding reception, which is open to the public and doubles as a fundraiser for the Anne Hopkins Foundation, which awards scholarships to students working for people with disabilities. Visit the Web sites www.annehopkinsfoundation.org and www.annieswedding.org for more information.
"Annie didn't care that she couldn't walk. She was upset she couldn't dance," Stevie wrote in a blog on the day Annie died. "Here is to hoping she's dancing now."
Watch videos of Annie Hopkins at www.youtube.com/user/annemariehopkins
26 August 2009
Wheelchair delays 'unacceptable'
A report on wheelchair services is due to be completed within weeks
Ministers have been urged to ensure that no-one in Wales has to wait longer than a year for a wheelchair.
Conservatives criticised "unacceptable delays" in providing wheelchairs for children, while Liberal Democrats urged a "minimum standard" for adults.
Health Minister Edwina Hart said she was concerned by the length of time some patients were waiting.
She said a review currently underway might recommend standards for the service across Wales.
Conservative social justice spokesman Mark Isherwood said that "unacceptable delays are leaving disabled and vulnerable people in pain and without the equipment they need to improve their quality of life".
"The health minister herself is on record as saying 'equality of access to all services is key' - we share that sentiment," he said.
"We share the concerns of Disabled Children Matter about the impact of these delays on the well-being of disabled children in Wales.
"Equality means disabled children having the same opportunities as non-disabled children in their daily lives," Mr Isherwood added.
Lib Dems called for a "minimum standard" for adult wheelchair provision, ensuring that no-one would have to wait longer than a year for a wheelchair.
'No recognised standards'
In a statement Ms Hart said: "I am concerned about the length of time some patients are waiting for their assessments and receiving their wheelchairs.
"The provision of wheelchair services falls primarily to the Artificial Limb and Appliance Service (ALAS), which is not an all-Wales service but is based around two centres in Cardiff and Wrexham.
"There are no recognised standards for wheelchair services for adults in Wales, however a review into the provision of wheelchairs and specialist seating is currently under way in Wales, where a possible recommendation may be the establishment of standards for the service across Wales.
"Senior Welsh Assembly Government officials are working with health professionals and other key stakeholders and service users to review the current provision, identify any gaps and consider how it can be improved."
Ms Hart said she would be receiving the report from the review this month.
Last March, long waits for specialist wheelchairs were criticised as "disgusting" by patients and parents in north Wales.
A total of 53 adults and children were waiting for an assessment to allow them to receive wheelchairs.
One child had been waiting for 20 months and the North Wales NHS Trust said it had cut times and was aiming to ensure no child waited more than a year.
Ministers have been urged to ensure that no-one in Wales has to wait longer than a year for a wheelchair.
Conservatives criticised "unacceptable delays" in providing wheelchairs for children, while Liberal Democrats urged a "minimum standard" for adults.
Health Minister Edwina Hart said she was concerned by the length of time some patients were waiting.
She said a review currently underway might recommend standards for the service across Wales.
Conservative social justice spokesman Mark Isherwood said that "unacceptable delays are leaving disabled and vulnerable people in pain and without the equipment they need to improve their quality of life".
"The health minister herself is on record as saying 'equality of access to all services is key' - we share that sentiment," he said.
"We share the concerns of Disabled Children Matter about the impact of these delays on the well-being of disabled children in Wales.
"Equality means disabled children having the same opportunities as non-disabled children in their daily lives," Mr Isherwood added.
Lib Dems called for a "minimum standard" for adult wheelchair provision, ensuring that no-one would have to wait longer than a year for a wheelchair.
'No recognised standards'
In a statement Ms Hart said: "I am concerned about the length of time some patients are waiting for their assessments and receiving their wheelchairs.
"The provision of wheelchair services falls primarily to the Artificial Limb and Appliance Service (ALAS), which is not an all-Wales service but is based around two centres in Cardiff and Wrexham.
"There are no recognised standards for wheelchair services for adults in Wales, however a review into the provision of wheelchairs and specialist seating is currently under way in Wales, where a possible recommendation may be the establishment of standards for the service across Wales.
"Senior Welsh Assembly Government officials are working with health professionals and other key stakeholders and service users to review the current provision, identify any gaps and consider how it can be improved."
Ms Hart said she would be receiving the report from the review this month.
Last March, long waits for specialist wheelchairs were criticised as "disgusting" by patients and parents in north Wales.
A total of 53 adults and children were waiting for an assessment to allow them to receive wheelchairs.
One child had been waiting for 20 months and the North Wales NHS Trust said it had cut times and was aiming to ensure no child waited more than a year.
25 April 2009
Trying to ensure that people live life to the FULL!
I am not sure what I will contirbute to this blog and even whether I should if I am honest - I am no expert, in fact although having been disabled and using a wheelchair for a number of years, I am now not and don't any more!
Having skirted around the edges of disability, equality, human rights etc for a number of years I am a confirmed advocate for disabled people. so much so I work with and for disabled people every day. When I suddenly became disabled after a car accident it was a fairly rough ride, a huge steep learning curve which a mere mortal cannot hope to understand unless they have been there, done it and actually worn the T Shirt!
It was a turning point in my life, in fact in our lives as a family - one which looking back on I wouldn't change for the world, as it made me what I am, what I have and what I dream for today and for the future. It lost me friends, but it made me more, it lost me part of my life but enriched it 100 fold, it changed my goals which upset the applecart, but hey you rethink and get on with it!
We moved country, we started our own business, we work tirelessly, we have more stress, we learnt a new language, we have more debt that you can ever imagine but we also have amazing job satisfaction! Can't be all bad!
We are trying to change the preconceived ideas, we are trying to change an industry, we are trying to ensure people do live life to the full!
What are we doing - wheelchair accessible holiday accommodation - not so hard you all think - hey its not if you get it right, but how many hotels, rentals, hostels have you been to in your time that aren't right but think they are! Yep - thought so - 99% of disabled travellers have at some stage or another been on a holiday only to find they can't get to the loo, or have a shower, or worse still get in the front door..................complete nightmare...............yet the accommodation said they were accessible, in fact they had a wheelchair logo somewhere on their website, or brochure.
The fact of the matter is that 90% of these places have been designed/converted by a non disabled person, an architect who has read all the rules and regs for turning circles, hand rails, etc but not considered the fact at how bloody difficult it actually is to get in and out of a bath, or if you have a raised loo then one grab rail on one side isn't actually sufficient.
Right I am getting off my soap box now - this subject can go on forever - but we all know what I mean. So onto bigger and better things - we have done it and I truly mean that - we have a website that shows you everything about our apartments, it even has measurements, widths of doors, heights of loos, beds, etc. ALL of our accommodation is accessible, not just a small % I mean ALL of it, we have thought of other barriers, equipment or lack of it, support workers or lack of them, adapted transport or lack of it - all things that are incredibly important to disabled travellers, but so overlooked in the tourist industry. Some people want Tea and Coffee making facilities in their rooms, we talk about hoists and pressure mattresses. I don't sell our place on the wonderful beaches ten mins down the road, my sales patter is all about the bathroom and toilet facilities! You think I am joking - not in a million years!!!! LOL
This is what I mean......one of the tags for the photo of the bathroom is 'enough room to shower a horse' and we mean that, room for the wheelchair, a hoist plus the shower chair and then still room for support workers, etc, etc you get my drift?
I can't get it exactly right for YOU - you is too personal, and people are too individual, what works for one won't for another, etc, etc but generically speaking we have got it right, and we try to ensure that people can get about, are comfortable and have a great time whilst they're here - what more can you ask for?
Having skirted around the edges of disability, equality, human rights etc for a number of years I am a confirmed advocate for disabled people. so much so I work with and for disabled people every day. When I suddenly became disabled after a car accident it was a fairly rough ride, a huge steep learning curve which a mere mortal cannot hope to understand unless they have been there, done it and actually worn the T Shirt!
It was a turning point in my life, in fact in our lives as a family - one which looking back on I wouldn't change for the world, as it made me what I am, what I have and what I dream for today and for the future. It lost me friends, but it made me more, it lost me part of my life but enriched it 100 fold, it changed my goals which upset the applecart, but hey you rethink and get on with it!
We moved country, we started our own business, we work tirelessly, we have more stress, we learnt a new language, we have more debt that you can ever imagine but we also have amazing job satisfaction! Can't be all bad!
We are trying to change the preconceived ideas, we are trying to change an industry, we are trying to ensure people do live life to the full!
What are we doing - wheelchair accessible holiday accommodation - not so hard you all think - hey its not if you get it right, but how many hotels, rentals, hostels have you been to in your time that aren't right but think they are! Yep - thought so - 99% of disabled travellers have at some stage or another been on a holiday only to find they can't get to the loo, or have a shower, or worse still get in the front door..................complete nightmare...............yet the accommodation said they were accessible, in fact they had a wheelchair logo somewhere on their website, or brochure.
The fact of the matter is that 90% of these places have been designed/converted by a non disabled person, an architect who has read all the rules and regs for turning circles, hand rails, etc but not considered the fact at how bloody difficult it actually is to get in and out of a bath, or if you have a raised loo then one grab rail on one side isn't actually sufficient.
Right I am getting off my soap box now - this subject can go on forever - but we all know what I mean. So onto bigger and better things - we have done it and I truly mean that - we have a website that shows you everything about our apartments, it even has measurements, widths of doors, heights of loos, beds, etc. ALL of our accommodation is accessible, not just a small % I mean ALL of it, we have thought of other barriers, equipment or lack of it, support workers or lack of them, adapted transport or lack of it - all things that are incredibly important to disabled travellers, but so overlooked in the tourist industry. Some people want Tea and Coffee making facilities in their rooms, we talk about hoists and pressure mattresses. I don't sell our place on the wonderful beaches ten mins down the road, my sales patter is all about the bathroom and toilet facilities! You think I am joking - not in a million years!!!! LOL
This is what I mean......one of the tags for the photo of the bathroom is 'enough room to shower a horse' and we mean that, room for the wheelchair, a hoist plus the shower chair and then still room for support workers, etc, etc you get my drift?
I can't get it exactly right for YOU - you is too personal, and people are too individual, what works for one won't for another, etc, etc but generically speaking we have got it right, and we try to ensure that people can get about, are comfortable and have a great time whilst they're here - what more can you ask for?
24 April 2009
Asda rolls out new OAP-friendly range of wheelchairs and walking sticks
By Olinka Koster
ASDA is to start selling walking sticks and wheelchairs to cater for Britain's ageing population.
It said becoming the first mainstream retailer to offer mobility aids would help 'eradicate the stigma' around disability.
The new range will include a collapsible wheelchair and fold-up walking stick as well as devices to help remove lids from jars and turn taps.
One step at a time: Asda is to offer a range of living aids including walking sticks and wheelchairs to help 'eradicate the stigma' around disability
The supermarket is also branching into the market for bathroom aids such as shower seats and raised toilet seats.
The move comes after research has shown that pensioners will make up almost a quarter of the population within 23 years.
The aids will also be targeted at younger people with disabilities and those suffering from sports injuries.
Dermot McLaughlin, spokesman for Mobilease, which has collaborated with Asda to offer the range of 15 products, said: 'Until a few years ago no one thought you should be able to buy televisions or mobile phones from supermarkets, but now this is accepted as normal.
'There was a time when pregnancy test kits and condoms were sold under the counter.
'A similar attitude has applied to our business, but all these barriers are about to be taken down. It is about time the things that make life easier are easier to buy.
'The most important thing is that having Mobilease available in Asda will gradually change people's perception of disability and eradicate the unnecessary stigma that has surrounded mobility products.'
The range will be sold in 75 Asda stores from Saturday, and rolled out to more of the chain's 350 stores if it proves popular.
Until now, mobility aids have only been available on prescription through the NHS or social services, independent stores or specialist websites and newspaper or television adverts.
Mr McLaughlin added: 'The mobility and living aids industry has been stuck in the dark ages for decades.
'The very products that are created to make life easier for people have been cursed by a strange irony - they are unnecessarily difficult to access.
'They should be easily available to customers, but the existing government system can be slow and restrictive.'
ASDA is to start selling walking sticks and wheelchairs to cater for Britain's ageing population.
It said becoming the first mainstream retailer to offer mobility aids would help 'eradicate the stigma' around disability.
The new range will include a collapsible wheelchair and fold-up walking stick as well as devices to help remove lids from jars and turn taps.
One step at a time: Asda is to offer a range of living aids including walking sticks and wheelchairs to help 'eradicate the stigma' around disability
The supermarket is also branching into the market for bathroom aids such as shower seats and raised toilet seats.
The move comes after research has shown that pensioners will make up almost a quarter of the population within 23 years.
The aids will also be targeted at younger people with disabilities and those suffering from sports injuries.
Dermot McLaughlin, spokesman for Mobilease, which has collaborated with Asda to offer the range of 15 products, said: 'Until a few years ago no one thought you should be able to buy televisions or mobile phones from supermarkets, but now this is accepted as normal.
'There was a time when pregnancy test kits and condoms were sold under the counter.
'A similar attitude has applied to our business, but all these barriers are about to be taken down. It is about time the things that make life easier are easier to buy.
'The most important thing is that having Mobilease available in Asda will gradually change people's perception of disability and eradicate the unnecessary stigma that has surrounded mobility products.'
The range will be sold in 75 Asda stores from Saturday, and rolled out to more of the chain's 350 stores if it proves popular.
Until now, mobility aids have only been available on prescription through the NHS or social services, independent stores or specialist websites and newspaper or television adverts.
Mr McLaughlin added: 'The mobility and living aids industry has been stuck in the dark ages for decades.
'The very products that are created to make life easier for people have been cursed by a strange irony - they are unnecessarily difficult to access.
'They should be easily available to customers, but the existing government system can be slow and restrictive.'
13 March 2009
Louisiana boy hopes stem cell treatment will help him walk
March 11, 2009 04:26 PM
Kyle Stewart
By Keitha Nelson -
BATON ROUGE, LA (WAFB) - President Barack Obama lifted the ban on federal funding for stem cell research this week, fueling the argument about whether it's a vital medical advancement or murder, but for one seven-year-old Louisiana boy with a brain disorder, stem cell treatment may be his only hope.
Watch Him
On any given day, Kyle Stewart can be found rolling around in his wheelchair. He doesn't let his disability get in the way of being a kid. He fishes, plays baseball, and loves to ride horses. Kyle aspires to be a professional bull rider when he gets older and his mom wants to make sure his dream comes true.
Patricia Stewart and her only child are headed to China for umbilical cord stem cell treatment. Kyle will get stem cells through an IV. "They say that it could help with trunk control," Stewart said. "And his hand movements and his head control." She says the treatment for neurological disorders is not available in the United States, but she thinks it should be. Stem cell research has a number of opponents because in some cases, embryos are destroyed to create the cell lines. Stewart argues that if it helps people, there shouldn't be a big issue. "It's so hard until you're in the position and it's your child," she said. "Then you believe that whatever needs to be done you would do."
Determined to help her son, Stewart and her family have planned fundraisers and benefits, with the hopes that a trip to China and some tiny cells will make a huge difference. "We just hope that maybe something can help, a little change, a little better. We would be completely happy with that," she said.
Kyle is not alone. Connor Corken is a two-year-old boy from Amite who returned from China in August of last year after receiving umbilical cord stem cell treatments. He was blind. Little Connor can now see light, shadows, and movement. If you would like to help Kyle get his treatment in China, click here.
Kyle Stewart
By Keitha Nelson -
BATON ROUGE, LA (WAFB) - President Barack Obama lifted the ban on federal funding for stem cell research this week, fueling the argument about whether it's a vital medical advancement or murder, but for one seven-year-old Louisiana boy with a brain disorder, stem cell treatment may be his only hope.
Watch Him
On any given day, Kyle Stewart can be found rolling around in his wheelchair. He doesn't let his disability get in the way of being a kid. He fishes, plays baseball, and loves to ride horses. Kyle aspires to be a professional bull rider when he gets older and his mom wants to make sure his dream comes true.
Patricia Stewart and her only child are headed to China for umbilical cord stem cell treatment. Kyle will get stem cells through an IV. "They say that it could help with trunk control," Stewart said. "And his hand movements and his head control." She says the treatment for neurological disorders is not available in the United States, but she thinks it should be. Stem cell research has a number of opponents because in some cases, embryos are destroyed to create the cell lines. Stewart argues that if it helps people, there shouldn't be a big issue. "It's so hard until you're in the position and it's your child," she said. "Then you believe that whatever needs to be done you would do."
Determined to help her son, Stewart and her family have planned fundraisers and benefits, with the hopes that a trip to China and some tiny cells will make a huge difference. "We just hope that maybe something can help, a little change, a little better. We would be completely happy with that," she said.
Kyle is not alone. Connor Corken is a two-year-old boy from Amite who returned from China in August of last year after receiving umbilical cord stem cell treatments. He was blind. Little Connor can now see light, shadows, and movement. If you would like to help Kyle get his treatment in China, click here.
28 January 2009
Seven Wheelchairs: A Life beyond Polio
Seven Wheelchairs: A Life beyond Polio was recently
released by The University of Iowa Press.
The memoir is a history -- an American tale -- of my fifty year wheelchair journey after being struck by both bulbar and lumbar poliomyelitis after a vaccine accident in 1959. The Press says Seven Wheelchairs gives "readers the unromantic truth about life in a
wheelchair, he escapes stereotypes about people with disabilities and moves
toward a place where every individual is irreplaceable."
Other reviewers have called Seven Wheelchairs "sardonic and blunt," "a compelling
account," and "powerful and poetic."
We all live different disability stories, I know, but perhaps if you find the memoir worthwhile, you might want to recommend the book to others who are curious about what polio or disability in general.
Of course, the book is also available through Amazon and Barnes & Noble.
Gary Presley http://www.garypresley.com/
SEVEN WHEELCHAIRS: A Life beyond Polio
Fall 2008 University of Iowa Press
released by The University of Iowa Press.
The memoir is a history -- an American tale -- of my fifty year wheelchair journey after being struck by both bulbar and lumbar poliomyelitis after a vaccine accident in 1959. The Press says Seven Wheelchairs gives "readers the unromantic truth about life in a
wheelchair, he escapes stereotypes about people with disabilities and moves
toward a place where every individual is irreplaceable."
Other reviewers have called Seven Wheelchairs "sardonic and blunt," "a compelling
account," and "powerful and poetic."
We all live different disability stories, I know, but perhaps if you find the memoir worthwhile, you might want to recommend the book to others who are curious about what polio or disability in general.
Of course, the book is also available through Amazon and Barnes & Noble.
Gary Presley http://www.garypresley.com/
SEVEN WHEELCHAIRS: A Life beyond Polio
Fall 2008 University of Iowa Press
24 January 2009
We’re in the money but some will go to a charity that supports us so much
DEVOTED dad plans to treat his disabled son and a charity to a slice of his luck after scooping a share of a £25,000 jackpot.
Tom Blair, 67, and his daughter Joanne Blair, 38, shared the money after winning in the People’s Postcode Lottery.
Tom, of Acklam Road, Middlesbrough, has devoted his life to looking after his son Ian, 31, who has cerebral palsy and requires round-the-clock care.
Tom was an analyst in the steel industry but had to give up work 11 years ago, after his wife Norma died of cancer, to become Ian’s carer.
He said: “This win is wonderful. Ian has cerebral palsy and care costs are really high. Though we get grants, it doesn’t cover everything and money is tight. This will make a big difference.
“I was surprised, but not as elated as my daughter because she needed the cash a lot more - she’s now in the black!”
His £12,500 will go towards a new wheelchair-friendly vehicle and alterations to the house where he has lived for 32 years. Tom’s commitments mean that he hasn’t been on holiday in 22 years but thanks to charity Teesside Ability Support Centre (TASC) he gets four days off once a year.
And as a 12-year TASC committee member, Tom plans to give some of the money to the charity that provides social care and life skills learning opportunities for disabled adults like Ian.
Tom said: “They provide an excellent service. It deserves more publicity than it’s getting. They’ve got good staff and I think the facilities are very good.
“But the facilities can always be improved and expanded, which is what we are doing.”
Joanne, who works as a volunteer counsellor with domestic violence support centre My Sister’s Place, said: “My money’s going to pay off debts - it’ll be great to be free of them.”
The winning postcode was TS5 8BE, and 67 other households matched part of it to win cash prizes.
Tom Blair, 67, and his daughter Joanne Blair, 38, shared the money after winning in the People’s Postcode Lottery.
Tom, of Acklam Road, Middlesbrough, has devoted his life to looking after his son Ian, 31, who has cerebral palsy and requires round-the-clock care.
Tom was an analyst in the steel industry but had to give up work 11 years ago, after his wife Norma died of cancer, to become Ian’s carer.
He said: “This win is wonderful. Ian has cerebral palsy and care costs are really high. Though we get grants, it doesn’t cover everything and money is tight. This will make a big difference.
“I was surprised, but not as elated as my daughter because she needed the cash a lot more - she’s now in the black!”
His £12,500 will go towards a new wheelchair-friendly vehicle and alterations to the house where he has lived for 32 years. Tom’s commitments mean that he hasn’t been on holiday in 22 years but thanks to charity Teesside Ability Support Centre (TASC) he gets four days off once a year.
And as a 12-year TASC committee member, Tom plans to give some of the money to the charity that provides social care and life skills learning opportunities for disabled adults like Ian.
Tom said: “They provide an excellent service. It deserves more publicity than it’s getting. They’ve got good staff and I think the facilities are very good.
“But the facilities can always be improved and expanded, which is what we are doing.”
Joanne, who works as a volunteer counsellor with domestic violence support centre My Sister’s Place, said: “My money’s going to pay off debts - it’ll be great to be free of them.”
The winning postcode was TS5 8BE, and 67 other households matched part of it to win cash prizes.
18 January 2009
Wheelchair teen wins access fight - Press & Journal
Bank ordered to pay £6,500 damages and instal lift
Published: 17/01/2009
A DISABLED teenager who took on banking giant Royal Bank of Scotland after it failed to cater for his needs has won a landmark legal challenge.
David Allen, 17, who has muscular dystrophy, brought the legal action after the bank failed to implement wheelchair access at a Sheffield branch.
Yesterday judge John Dowse ruled the bank had breached the Disability Discrimination Act.
In addition to paying £6,500 in damages the bank has until the end of September to instal a platform lift.
The ruling has set a legal precedent which could have implications for other service providers, legal experts said.
The bank claimed it complied with the Disability Rights Commission’s code of practice and it had arranged access to three other branches.
Mr Dowse said: “The bank has made errors in this case causing David considerable embarrassment. It has not covered itself in glory.”
Mr Allen said: “I’m glad justice has been done. I only wanted them to comply with the law and provide disabled access so I could get into my bank like my friends.”
A civil law discrimination specialist, barrister Declan O’Dempsey, said: “Businesses are required under the goods and services provisions of the Disability Discrimination Act to make ‘reasonable adjustments’ to ensure customers can use their services.
“Bigger companies now know it is up to them to anticipate the needs of all their customers.
“They cannot assume that because they have made changes to some premises, their obligations end there.”
John Wadham, of the Equality and Human Rights Commission, said: “David could have settled for a behind-the-scenes sum of money but he stood by his principles and his tenacity will mean a great number of disabled people will benefit.”
A spokeswoman for the bank said: “RBS strongly disagrees with the court's judgment and will accordingly be pursuing its right of appeal.”
Published: 17/01/2009
A DISABLED teenager who took on banking giant Royal Bank of Scotland after it failed to cater for his needs has won a landmark legal challenge.
David Allen, 17, who has muscular dystrophy, brought the legal action after the bank failed to implement wheelchair access at a Sheffield branch.
Yesterday judge John Dowse ruled the bank had breached the Disability Discrimination Act.
In addition to paying £6,500 in damages the bank has until the end of September to instal a platform lift.
The ruling has set a legal precedent which could have implications for other service providers, legal experts said.
The bank claimed it complied with the Disability Rights Commission’s code of practice and it had arranged access to three other branches.
Mr Dowse said: “The bank has made errors in this case causing David considerable embarrassment. It has not covered itself in glory.”
Mr Allen said: “I’m glad justice has been done. I only wanted them to comply with the law and provide disabled access so I could get into my bank like my friends.”
A civil law discrimination specialist, barrister Declan O’Dempsey, said: “Businesses are required under the goods and services provisions of the Disability Discrimination Act to make ‘reasonable adjustments’ to ensure customers can use their services.
“Bigger companies now know it is up to them to anticipate the needs of all their customers.
“They cannot assume that because they have made changes to some premises, their obligations end there.”
John Wadham, of the Equality and Human Rights Commission, said: “David could have settled for a behind-the-scenes sum of money but he stood by his principles and his tenacity will mean a great number of disabled people will benefit.”
A spokeswoman for the bank said: “RBS strongly disagrees with the court's judgment and will accordingly be pursuing its right of appeal.”
10 January 2009
Family travel: 'Can we take our disabled son to Florida?'
Q. We have three young children, one of whom is six and severely disabled. We want to go to Florida next year, but have no idea of the mechanics of taking our disabled son on a flight. He won't be able to sit still in an aeroplane seat for more than a few minutes, and is too unmanageable to sit on our knees. Normally, he travels in a slightly larger than normal car seat (which we will need to take with us anyway for use in the hire car), but what will we do with it and his wheelchair on the plane? Are some airlines better than others at dealing with this kind of thing? And there is one further complication: our son has a cochlear implant. Can we avoid taking him through any electronic- scanning devices? J Thatcher, Nottinghamshire
A. Even though travelling with a disability has become easier, it still requires a lot of forward planning, and is not without its hurdles.
Tackling the flights first: you need to establish a dialogue with the airline early on. British Airways (0844 493 0787; ba.com) and Virgin Atlantic (08705 747 747; virgin-atlantic.com) both fly from London to Miami and Orlando, and have comprehensive disability guidelines; Virgin even has a dedicated number: 0870 990 8350.
An experienced and understanding travel agent could also be a useful ally, since he or she will know the procedures (and aviation jargon) for looking after disabled travellers.
The airline needs to know the details of your son's condition, and that you will be taking a wheelchair, so that the appropriate preparation can be made on board the aircraft, and cabin crew are aware of your family's needs.
If you are taking a battery-operated wheelchair, you must inform the airline 48 hours in advance of the weight, dimensions and battery type. If you can take the wheelchair on board, it won't count towards your carry-on limit. Under the Dangerous Goods Act, battery-operated wheelchairs must be stored in the hold. If the battery is spillable, it must be removed, unless the chair is to be stored upright during the flight.
In relation to the car seat, BA rules say that if parents wish to bring their own on board, it must be securable by the normal aircraft single lap strap. The seat must also face the same way as the passenger seat, and not exceed the width of the plane seat. The dimensions vary with each airline, but an economy seat typically measures 17in-20in. Check with the airline when you are booking to ensure that the car seat fits the plane seat.
Wheelchairs set off metal detectors at airport security, so both your son and the chair will have to be hand searched; you have the right to request that he is searched in private.
The metal-detector archways used for security checks produce magnetic fields that can cause speech processors to become corrupted. To prevent damage to your son's cochlear implant, it is advisable to remove the processor and turn it off before passing through any such apparatus. The processor must be X-rayed, which can be done safely as long as it is turned off. It is also advisable to carry your son's ID card and the equipent's user manual, to show to security staff on request.
For much more information and advice, see the excellent website flying-with -disability.org. You may well conclude, though, that it will be considerably less stressful to enlist help in organising your first trip, so consider a specialist operator such as Disability Travel (020-8731 2111; disabilitytravel.co. uk). It organises tailor-made trips, including to the All-Star Music Resort in Disney World, Florida (pictured left). These take into consideration everything from flights to accommodation. Prices depend on specific needs. Access Travel (01942 888 844; access-travel. co.uk) also offers tailor-made holidays to Florida.
Send family travel queries toThe Independent Parent, Travel Desk, 'The Independent', 191 Marsh Wall, London E14 9RS; or email crusoe@independent. co.uk
A. Even though travelling with a disability has become easier, it still requires a lot of forward planning, and is not without its hurdles.
Tackling the flights first: you need to establish a dialogue with the airline early on. British Airways (0844 493 0787; ba.com) and Virgin Atlantic (08705 747 747; virgin-atlantic.com) both fly from London to Miami and Orlando, and have comprehensive disability guidelines; Virgin even has a dedicated number: 0870 990 8350.
An experienced and understanding travel agent could also be a useful ally, since he or she will know the procedures (and aviation jargon) for looking after disabled travellers.
The airline needs to know the details of your son's condition, and that you will be taking a wheelchair, so that the appropriate preparation can be made on board the aircraft, and cabin crew are aware of your family's needs.
If you are taking a battery-operated wheelchair, you must inform the airline 48 hours in advance of the weight, dimensions and battery type. If you can take the wheelchair on board, it won't count towards your carry-on limit. Under the Dangerous Goods Act, battery-operated wheelchairs must be stored in the hold. If the battery is spillable, it must be removed, unless the chair is to be stored upright during the flight.
In relation to the car seat, BA rules say that if parents wish to bring their own on board, it must be securable by the normal aircraft single lap strap. The seat must also face the same way as the passenger seat, and not exceed the width of the plane seat. The dimensions vary with each airline, but an economy seat typically measures 17in-20in. Check with the airline when you are booking to ensure that the car seat fits the plane seat.
Wheelchairs set off metal detectors at airport security, so both your son and the chair will have to be hand searched; you have the right to request that he is searched in private.
The metal-detector archways used for security checks produce magnetic fields that can cause speech processors to become corrupted. To prevent damage to your son's cochlear implant, it is advisable to remove the processor and turn it off before passing through any such apparatus. The processor must be X-rayed, which can be done safely as long as it is turned off. It is also advisable to carry your son's ID card and the equipent's user manual, to show to security staff on request.
For much more information and advice, see the excellent website flying-with -disability.org. You may well conclude, though, that it will be considerably less stressful to enlist help in organising your first trip, so consider a specialist operator such as Disability Travel (020-8731 2111; disabilitytravel.co. uk). It organises tailor-made trips, including to the All-Star Music Resort in Disney World, Florida (pictured left). These take into consideration everything from flights to accommodation. Prices depend on specific needs. Access Travel (01942 888 844; access-travel. co.uk) also offers tailor-made holidays to Florida.
Send family travel queries toThe Independent Parent, Travel Desk, 'The Independent', 191 Marsh Wall, London E14 9RS; or email crusoe@independent. co.uk
07 January 2009
Simple torso-rotating exercise can help patients with scoliosis
Wellington, Jan 5 : A simple torso-rotating exercise can significantly improve the condition of people with scoliosis, where the spine curves in an S or C shape, according a Kiwi researcher.
David Woodbridge, an Auckland physiotherapist, says that repeating the simple back-strengthening exercises can make a major difference to the lives of those suffering from the inherited condition.
It is believed that if a mother has scoliosis as a teenager, her daughters have a one in four chance of developing it as a teen, reports the NZPA
In scoliosis, the spine is curves by more than 10 degrees. While sometimes the curving stops naturally, but at times it continues to progress and the curve reaches about 30 degrees.
Currently, the patients are fitted with a brace, which may stop the curve getting worse.
If the curve reaches 40 to 45-degree range patients often have to undergo an operation to have steel rods inserted along their spine.
Woodbridge insists that a simple torso-rotating exercise treatment stops the curve getting worse, and can correct patients' spines before they reach that 40-degree range.
During the study, 95 per cent of their patients with curves under 40 degrees stopped getting worse, and in many cases improved.
One spine straightened out an amazing 43 degrees to almost perfect.
Woodbridge said that the exercise could also help alleviate the pain of the condition in older people, but might not be able to improve it permanently.
David Woodbridge, an Auckland physiotherapist, says that repeating the simple back-strengthening exercises can make a major difference to the lives of those suffering from the inherited condition.
It is believed that if a mother has scoliosis as a teenager, her daughters have a one in four chance of developing it as a teen, reports the NZPA
In scoliosis, the spine is curves by more than 10 degrees. While sometimes the curving stops naturally, but at times it continues to progress and the curve reaches about 30 degrees.
Currently, the patients are fitted with a brace, which may stop the curve getting worse.
If the curve reaches 40 to 45-degree range patients often have to undergo an operation to have steel rods inserted along their spine.
Woodbridge insists that a simple torso-rotating exercise treatment stops the curve getting worse, and can correct patients' spines before they reach that 40-degree range.
During the study, 95 per cent of their patients with curves under 40 degrees stopped getting worse, and in many cases improved.
One spine straightened out an amazing 43 degrees to almost perfect.
Woodbridge said that the exercise could also help alleviate the pain of the condition in older people, but might not be able to improve it permanently.
15 October 2008
Blow for parents as NHS refuses to pay for son’s specialist walker
£1,800 equipment would have given disabled five-year-old a new lease of life, say couple
By Ryan Crighton
A north-east couple have been left “devastated” after NHS Grampian refused to fund a specialist walker which has given their disabled son a new lease of life.
Five-year-old Alfie Arthur, who is a pupil at Anna Ritchie School’s nursery in Peterhead, was diagnosed with severe cerebral palsy when he was just a few months old.
The Ardallie youngster is unable to speak, walk, stand, feed himself or do any of the daily tasks that others take for granted.
A section of his brain stopped developing in the womb and he was left with very low muscle tone and body control.
He also suffers from scoliosis of the spine, which means he has to wear a back brace to support and strengthen his spine.
His parents, Gary and Colette Arthur, of South Hawkhillock, found a ray of hope during the summer when Alfie stepped into a specialist walker for the first time – allowing him to strengthen the muscles in his legs and spine as well as giving him improved mobility.
It even helped him play football and splash in puddles with his sisters, Lauren, 11, and Georgia, 7.
However, NHS Grampian has told the family that it does not have the funds to pay for Alfie to get the £1,800 walker full-time, so the family have decided to raise the money for it themselves.
An NHS Grampian spokesman said last night new devices came on to the market all the time, and not all were proven to be clinically useful to patients.
He added: “We see hundreds of people in the course of a year and clearly need to be convinced that such equipment would benefit patients.”
Last night Mrs Arthur said the family were not angry at the decision by NHS Grampian, “because that won’t change it”.
“We as a family were devastated,” she said.
“We would happily trade in all his other equipment for this as he’s gained so much from it. So, we have decided to raise the money for it ourselves.
“However, at the same time as needing to raise money for a walker, Alfie is going to be moving up to a wheelchair which means that we also need to find funds for a deposit on a mobility car and for renovations to our home to accommodate a wheelchair. This is where our friends and family stepped in and offered to help and raise funds.
“As Alfie loves music so much, it was decided he would approve of a ceilidh – this then developed into a Burns night and ceilidh complete with guest speakers, pipes and Highland dancers.”
The Burns night and ceilidh is being held at the Station Hotel , Ellon, on Saturday, January 24.
For more information, to book tickets or to donate a raffle prize for the event, contact either Kirstie Moar on 01358 711324 or themoars@btinternet.com, or Mrs Arthur on 01358 711385.
Anyone who is unable to attend the event, but would still like to support the cause, can donate by debit or credit card at the website www.giftshare.com/alfie
By Ryan Crighton
A north-east couple have been left “devastated” after NHS Grampian refused to fund a specialist walker which has given their disabled son a new lease of life.
Five-year-old Alfie Arthur, who is a pupil at Anna Ritchie School’s nursery in Peterhead, was diagnosed with severe cerebral palsy when he was just a few months old.
The Ardallie youngster is unable to speak, walk, stand, feed himself or do any of the daily tasks that others take for granted.
A section of his brain stopped developing in the womb and he was left with very low muscle tone and body control.
He also suffers from scoliosis of the spine, which means he has to wear a back brace to support and strengthen his spine.
His parents, Gary and Colette Arthur, of South Hawkhillock, found a ray of hope during the summer when Alfie stepped into a specialist walker for the first time – allowing him to strengthen the muscles in his legs and spine as well as giving him improved mobility.
It even helped him play football and splash in puddles with his sisters, Lauren, 11, and Georgia, 7.
However, NHS Grampian has told the family that it does not have the funds to pay for Alfie to get the £1,800 walker full-time, so the family have decided to raise the money for it themselves.
An NHS Grampian spokesman said last night new devices came on to the market all the time, and not all were proven to be clinically useful to patients.
He added: “We see hundreds of people in the course of a year and clearly need to be convinced that such equipment would benefit patients.”
Last night Mrs Arthur said the family were not angry at the decision by NHS Grampian, “because that won’t change it”.
“We as a family were devastated,” she said.
“We would happily trade in all his other equipment for this as he’s gained so much from it. So, we have decided to raise the money for it ourselves.
“However, at the same time as needing to raise money for a walker, Alfie is going to be moving up to a wheelchair which means that we also need to find funds for a deposit on a mobility car and for renovations to our home to accommodate a wheelchair. This is where our friends and family stepped in and offered to help and raise funds.
“As Alfie loves music so much, it was decided he would approve of a ceilidh – this then developed into a Burns night and ceilidh complete with guest speakers, pipes and Highland dancers.”
The Burns night and ceilidh is being held at the Station Hotel , Ellon, on Saturday, January 24.
For more information, to book tickets or to donate a raffle prize for the event, contact either Kirstie Moar on 01358 711324 or themoars@btinternet.com, or Mrs Arthur on 01358 711385.
Anyone who is unable to attend the event, but would still like to support the cause, can donate by debit or credit card at the website www.giftshare.com/alfie
21 September 2008
Many patients pay for wheelchairs
People with muscle disease are denied health and social care services because they live in Wales, it is claimed.
The Muscular Dystrophy Campaign said its survey showed no specialist care co-ordinator for the 3,000 people with muscle diseases in Wales.
It also said 40% must pay for their own wheelchairs, while such services are readily available in England.
The Welsh Assembly Government said Health Minister Edwina Hart would "carefully consider" its findings.
The charity is calling for an urgent review of services across Wales.
The survey specifically highlighted the lack of a care co-ordinator in Wales as a major cause for concern.
Elsewhere in the UK, care co-ordinators act as the first point of call for muscle disease patients, giving them advice and guidance to help find specialist support.
"For some families in Wales access to specialist care can be a matter of life or death" Philip Butcher, Muscular Dystrophy Campaign
A third of Welsh patients also have no access to a specialist neuromuscular consultant and 40% of them have no access to a physiotherapist or feel that they do not receive enough physiotherapy.
The 22 local health boards in Wales were also asked to provide information about their services for people with neuromuscular conditions and found that the majority do not support specialist clinics for adults or children.
Muscular Dystrophy Campaign chief executive Philip Butcher said: "For some families in Wales access to specialist care can be a matter of life or death.
"Their plight is made worse by the considerable delays and variations in the provision of essential equipment and barriers to living independently.
'Complex and confusing'
"It is clear that health and social care services are patchy, complex and confusing.
ONE WOMAN'S STORY
Mother-of-two Shawneena Laker, 46, from Four Crosses, Powys, who was diagnosed with muscular dystrophy 14 years ago, said: "My condition started to deteriorate about six months and I got to the stage where I was falling over.
"I tried to find out about getting a wheelchair but no-one could help me. I was told to go to the Red Cross and they said they could borrow me one for a while but that was no good.
"In the end we had to go to Argos in Shrewsbury and buy one for £250 but I know for a fact that if I lived down the road in Pant in England I would have got one for free.
"I think it's totally disgusting. I don't expect to be given something for nothing but this is a terminal illness and my body is breaking down in front of me and I need more help.
"I think there's a real stigma attached to muscle disease and there's just no help available here in Wales."
"The report shows that three out of four people in Wales are missing out on the vital help of a care co-ordinator, whose role is to support and guide them through the system.
"We are calling on the local NHS commissioners and local authorities to urgently establish additional posts in Wales.
"I do know that Edwina Hart is taking this matter seriously and she has shown a clear commitment to improving standards of care for families in Wales."
On top of a general lack of health services, the survey also found 75% of families faced financial hardship as a result of muscle disease, with many having to pay for their own wheelchair.
Improve services
The results come three years after the Government's National Service Framework for Long-Term Conditions, which pledged to improve quality of life and independence for people living with chronic conditions.
An assembly government spokersperson said the health minister would consider the survery findings, but added: "However, the independent review of neuroscience services, which Mrs Hart commissioned, will outline proposals on how to improve services across Wales.
"This is along with the ongoing work relating to children and young people's specialist services and the work about to start on neuromuscular diseases.
"She expects that people should see improvements as a result."
Muscle diseases weaken and waste muscles and can be inherited or acquired and affect people of all ages, backgrounds and nationalities.
There are currently no cures available to people with these kinds of conditions.
Edwina Hart will meet families affected by muscle disease at the Muscular Dystrophy Campaign's conference in Swansea on 13 October.
RELATED INTERNET LINKS
Muscular Dystrophy Campaign
NHS Wales
Welsh Assembly Government
The Muscular Dystrophy Campaign said its survey showed no specialist care co-ordinator for the 3,000 people with muscle diseases in Wales.
It also said 40% must pay for their own wheelchairs, while such services are readily available in England.
The Welsh Assembly Government said Health Minister Edwina Hart would "carefully consider" its findings.
The charity is calling for an urgent review of services across Wales.
The survey specifically highlighted the lack of a care co-ordinator in Wales as a major cause for concern.
Elsewhere in the UK, care co-ordinators act as the first point of call for muscle disease patients, giving them advice and guidance to help find specialist support.
"For some families in Wales access to specialist care can be a matter of life or death" Philip Butcher, Muscular Dystrophy Campaign
A third of Welsh patients also have no access to a specialist neuromuscular consultant and 40% of them have no access to a physiotherapist or feel that they do not receive enough physiotherapy.
The 22 local health boards in Wales were also asked to provide information about their services for people with neuromuscular conditions and found that the majority do not support specialist clinics for adults or children.
Muscular Dystrophy Campaign chief executive Philip Butcher said: "For some families in Wales access to specialist care can be a matter of life or death.
"Their plight is made worse by the considerable delays and variations in the provision of essential equipment and barriers to living independently.
'Complex and confusing'
"It is clear that health and social care services are patchy, complex and confusing.
ONE WOMAN'S STORY
Mother-of-two Shawneena Laker, 46, from Four Crosses, Powys, who was diagnosed with muscular dystrophy 14 years ago, said: "My condition started to deteriorate about six months and I got to the stage where I was falling over.
"I tried to find out about getting a wheelchair but no-one could help me. I was told to go to the Red Cross and they said they could borrow me one for a while but that was no good.
"In the end we had to go to Argos in Shrewsbury and buy one for £250 but I know for a fact that if I lived down the road in Pant in England I would have got one for free.
"I think it's totally disgusting. I don't expect to be given something for nothing but this is a terminal illness and my body is breaking down in front of me and I need more help.
"I think there's a real stigma attached to muscle disease and there's just no help available here in Wales."
"The report shows that three out of four people in Wales are missing out on the vital help of a care co-ordinator, whose role is to support and guide them through the system.
"We are calling on the local NHS commissioners and local authorities to urgently establish additional posts in Wales.
"I do know that Edwina Hart is taking this matter seriously and she has shown a clear commitment to improving standards of care for families in Wales."
On top of a general lack of health services, the survey also found 75% of families faced financial hardship as a result of muscle disease, with many having to pay for their own wheelchair.
Improve services
The results come three years after the Government's National Service Framework for Long-Term Conditions, which pledged to improve quality of life and independence for people living with chronic conditions.
An assembly government spokersperson said the health minister would consider the survery findings, but added: "However, the independent review of neuroscience services, which Mrs Hart commissioned, will outline proposals on how to improve services across Wales.
"This is along with the ongoing work relating to children and young people's specialist services and the work about to start on neuromuscular diseases.
"She expects that people should see improvements as a result."
Muscle diseases weaken and waste muscles and can be inherited or acquired and affect people of all ages, backgrounds and nationalities.
There are currently no cures available to people with these kinds of conditions.
Edwina Hart will meet families affected by muscle disease at the Muscular Dystrophy Campaign's conference in Swansea on 13 October.
RELATED INTERNET LINKS
Muscular Dystrophy Campaign
NHS Wales
Welsh Assembly Government
09 September 2008
Challenge Air Events Give Disabled Individuals Free Flights
Challenge Air Events Give Disabled Individuals Free Flights
Children and adults with disabilities, including Cerebral Palsy, as well as individuals with certain types of cancer, such as mesothelioma, have the opportunity to take flight with the Challenge Air program, which provides free flights for children and adults & their families. Other constraints include that of breathing in which case children would require nebulizers.
The program operates in about 16 different U.S. cities, and an event costs about $13,000. Generally, local businesses sponsor the event. Challenge Air has been providing flights for the last 16 years and recruits volunteer pilots to give plane rides.
Children and adults with Cerebral Palsy experience various degrees of learning disabilities and may be at a heightened risk of developing certain health problems, including heart defects and ear infections.
None of that matters, however, when a disabled child is up in the air at a Challenge Air event.
Founder Rick Amber believed that “every disabled person should see the world from a different view…out of their wheelchairs and crutches and from the sky.” Amber, who lost the use of his legs while serving in the United States Navy, was passionate about providing disabled individuals with new and unforgettable life experiences. Amber passed away in 1997, but his wish is carried on by the staff at Challenge Air.
To contact Challenge Air, please visit www.challengeair.com.
Children and adults with disabilities, including Cerebral Palsy, as well as individuals with certain types of cancer, such as mesothelioma, have the opportunity to take flight with the Challenge Air program, which provides free flights for children and adults & their families. Other constraints include that of breathing in which case children would require nebulizers.
The program operates in about 16 different U.S. cities, and an event costs about $13,000. Generally, local businesses sponsor the event. Challenge Air has been providing flights for the last 16 years and recruits volunteer pilots to give plane rides.
Children and adults with Cerebral Palsy experience various degrees of learning disabilities and may be at a heightened risk of developing certain health problems, including heart defects and ear infections.
None of that matters, however, when a disabled child is up in the air at a Challenge Air event.
Founder Rick Amber believed that “every disabled person should see the world from a different view…out of their wheelchairs and crutches and from the sky.” Amber, who lost the use of his legs while serving in the United States Navy, was passionate about providing disabled individuals with new and unforgettable life experiences. Amber passed away in 1997, but his wish is carried on by the staff at Challenge Air.
To contact Challenge Air, please visit www.challengeair.com.
31 August 2008
Portable Wheelchair Helps Improve Quality Of Life
by Jeff Glasser
A portable wheelchair may vastly improve a person’s quality of life, in the important role that mobility plays in the lives of many of those with physical handicaps. Allowing them to get out and about with the need for someone else to move them around, a portable wheelchair can give them the independence they need and desire to help them live with more freedom. Nearly every government building and places of business with the passage of the American Disability Act, have made wheelchair access a requirement and is offering the benefits to those unable to walk on their own.
In the not-so-distant past, wheelchairs were large and bulky, restricting their use to the person’s home or medical facility in which they were confined. Their freedom to move about was restricted by the size of these unwieldy contraptions and being able to get out of the confines of their home was vastly limited. With the introduction of the portable wheelchair, their freedom to enjoy a better life was increased.
Many of the folding models can be stored in the trunk of most vehicles and are light enough for the average person to lift. The handicapped person can use their wheelchair to get into a vehicle and again when they arrive at their destination. Most major companies also offer the free use of their own portable wheelchair, ending the need for many to take their own with them.
Helping The Handicapped Improve Their Mobility
With the use of a portable wheelchair, many patients find that getting in and out of their own home more like a barrier to the outside world. Even those with a ramp on their homes to get outside may be stymied in using their portable wheelchair at their location. If they use a van, listing it in and out of the cargo area can be a weighty proposition unless the vehicle is equipped with a portable wheelchair ramp.
Their ability to be used in more than one vehicle is one of many advantages of these devices. Some vehicles are equipped with permanent ramps to allow portable wheelchair users to get in and out of their own vehicles, but if they must ride with someone else, they may not have that option. The use of a portable wheelchair will remain restricted to areas in which they can be operated with ease, but in today’s handicapped-friendly environment, their use is becoming more readily accepted.
About the Author:
In the crucial role that getting around plays in the lives of many of those with physical handicaps, a Portable Wheelchair may vastly enhance a person’s quality of life. Browse http://www.wheelchairs.jsgenterprises.com for more articles.
A portable wheelchair may vastly improve a person’s quality of life, in the important role that mobility plays in the lives of many of those with physical handicaps. Allowing them to get out and about with the need for someone else to move them around, a portable wheelchair can give them the independence they need and desire to help them live with more freedom. Nearly every government building and places of business with the passage of the American Disability Act, have made wheelchair access a requirement and is offering the benefits to those unable to walk on their own.
In the not-so-distant past, wheelchairs were large and bulky, restricting their use to the person’s home or medical facility in which they were confined. Their freedom to move about was restricted by the size of these unwieldy contraptions and being able to get out of the confines of their home was vastly limited. With the introduction of the portable wheelchair, their freedom to enjoy a better life was increased.
Many of the folding models can be stored in the trunk of most vehicles and are light enough for the average person to lift. The handicapped person can use their wheelchair to get into a vehicle and again when they arrive at their destination. Most major companies also offer the free use of their own portable wheelchair, ending the need for many to take their own with them.
Helping The Handicapped Improve Their Mobility
With the use of a portable wheelchair, many patients find that getting in and out of their own home more like a barrier to the outside world. Even those with a ramp on their homes to get outside may be stymied in using their portable wheelchair at their location. If they use a van, listing it in and out of the cargo area can be a weighty proposition unless the vehicle is equipped with a portable wheelchair ramp.
Their ability to be used in more than one vehicle is one of many advantages of these devices. Some vehicles are equipped with permanent ramps to allow portable wheelchair users to get in and out of their own vehicles, but if they must ride with someone else, they may not have that option. The use of a portable wheelchair will remain restricted to areas in which they can be operated with ease, but in today’s handicapped-friendly environment, their use is becoming more readily accepted.
About the Author:
In the crucial role that getting around plays in the lives of many of those with physical handicaps, a Portable Wheelchair may vastly enhance a person’s quality of life. Browse http://www.wheelchairs.jsgenterprises.com for more articles.
22 August 2008
Natalie Bartley: Men climb Kilimanjaro in wheelchairs
By Natalie Bartley
Climbing Mount Kilimanjaro, the largest mountain in Africa, is not easy under the best circumstances.
In June, four climbers from Idaho - two of them using special wheelchairs designed for off-road travel - took on the famed 19,340-foot mountain.
Tom McCurdy of Pocatello uses a wheelchair because of an injury sustained in the Army in 1987, when an armored military vehicle trapped him against a wall. The incident resulted in paralysis below the waist. It hasn't stopped him from enjoying sports and outdoor challenges. He's been to Mount Everest in Nepal, holds the Pocatello Marathon's wheelchair record and won a 400-meter bronze metal at the Pan American Games.
McCurdy's 14-year-old son, Sage, and Idaho State University graduate Kyle Packer, of Effingham, Ill., also took part in the Mount Kilimanjaro climb in Tanzania.
Packer has cerebral palsy. He used a wheelchair for the climb and "walked" on his knees using rubberized kneepads whenever he was in camp.
Packer and McCurdy are members of ISU's Cooperative Wilderness Handicapped Outdoor Group (CW HOGS). In 1998, the two made it to the 17,600-foot elevation base camp on Mount Everest, joining CW HOG founder Tom Whitaker. Whitaker was the first disabled person to make his way to the top of the world's highest peak, located at 29,035 feet.
An outcome of the Everest adventure was Packer and McCurdy's goal to climb Kilimanjaro, one of the most popular mountain climbing destinations in the world.
Dana Olson-Elle, director of ISU's Outdoor AdventureCenter, joined the group on the Kilimanjaro climb. "The thing that I appreciate most is their drive and wanting to go and do activities that are challenging to any individual. They do not let their challenges keep them from living their dreams," she said.
The four Idahoans hooked up with outfitter Adventures Within Reach, which coordinated the trip through an African outfitter.
Only six wheelchair users have gone up the mountain since 2003, the first time someone ascended in a wheelchair.
"I was not out to make a world record or make a statement," said McCurdy. "For me, it was being part of a trip and introducing my son to adventure travel."
Though the mountain is not a technical climb, ascending Kilimanjaro is considered a strenuous journey along rocky trails at high altitude.
During the seven-day trip, the Idahoans took the Rongai route on the mountain's north side and descended on the south side. The group trekked through five major ecological zones.
McCurdy and Packer rolled themselves uphill assisted by porters and guides. There was no way to keep the wheelchairs - which have wide wheels on each side and a volleyball-like front tire - from rolling backward, so the porters and climbers spent lots of energy fighting gravity.
Near the summit, the group opted to camp above Kibo huts. The huts, at 15,416 feet, typically serve as the launching point for climbers on the final climb to the summit. Camping above Kibo huts meant that the porters were not acclimatized to staying overnight at the higher altitude beyond the huts before the final ascent to the peak.
Thinner air, combined with pushing wheelchairs up the mountain, added to the physical nature of the porters' climbs and some had symptoms of altitude sickness.
"It was amazing to see their drive and willingness to push on," Olson-Elle said.
An Idaho climber also was feeling ill the morning of the summit climb, so the group decided not to urge the guides and porters farther up the mountain. Instead, they selected Sage McCurdy to make the trek to the summit with a guide.
Sage made it to Gillman's Point at 18,630 feet on Kibo, one of the three extinct volcanoes on Mount Kilimanjaro. He said the highlight of the climb was "the view at the top and the accomplishment of being there."
Climbing big mountains is a journey as well as a destination. Experiences beyond the climbing add to the trip. The Idaho group enjoyed meeting climbers from all over the world.
"The challenge of the situation was exciting," Tom McCurdy said. "Every moment is fresh and every moment is challenging." He enjoyed negotiating the terrain, putting people's ideas together to generate a solution and working through language barriers.
Dealing with the altitude, keeping clean, avoiding illness and staying healthy were the additional challenges confronting the climbers.
Sage is proud of his dad. "He is a very strong man, both physically and mentally. He is smart and determined but is always looking out for other people," Sage said.
The Idaho team is already rethinking their wheelchair selection for future mountain climbing adventures. Packer is striving to raise funds for another ascent of Kilimanjaro.
Natalie Bartley is a freelance outdoors writer. Her column runs Thursdays in Idaho Outdoors. Natalie can be contacted by e-mail: natbartley@earthlink.net
Climbing Mount Kilimanjaro, the largest mountain in Africa, is not easy under the best circumstances.
In June, four climbers from Idaho - two of them using special wheelchairs designed for off-road travel - took on the famed 19,340-foot mountain.
Tom McCurdy of Pocatello uses a wheelchair because of an injury sustained in the Army in 1987, when an armored military vehicle trapped him against a wall. The incident resulted in paralysis below the waist. It hasn't stopped him from enjoying sports and outdoor challenges. He's been to Mount Everest in Nepal, holds the Pocatello Marathon's wheelchair record and won a 400-meter bronze metal at the Pan American Games.
McCurdy's 14-year-old son, Sage, and Idaho State University graduate Kyle Packer, of Effingham, Ill., also took part in the Mount Kilimanjaro climb in Tanzania.
Packer has cerebral palsy. He used a wheelchair for the climb and "walked" on his knees using rubberized kneepads whenever he was in camp.
Packer and McCurdy are members of ISU's Cooperative Wilderness Handicapped Outdoor Group (CW HOGS). In 1998, the two made it to the 17,600-foot elevation base camp on Mount Everest, joining CW HOG founder Tom Whitaker. Whitaker was the first disabled person to make his way to the top of the world's highest peak, located at 29,035 feet.
An outcome of the Everest adventure was Packer and McCurdy's goal to climb Kilimanjaro, one of the most popular mountain climbing destinations in the world.
Dana Olson-Elle, director of ISU's Outdoor AdventureCenter, joined the group on the Kilimanjaro climb. "The thing that I appreciate most is their drive and wanting to go and do activities that are challenging to any individual. They do not let their challenges keep them from living their dreams," she said.
The four Idahoans hooked up with outfitter Adventures Within Reach, which coordinated the trip through an African outfitter.
Only six wheelchair users have gone up the mountain since 2003, the first time someone ascended in a wheelchair.
"I was not out to make a world record or make a statement," said McCurdy. "For me, it was being part of a trip and introducing my son to adventure travel."
Though the mountain is not a technical climb, ascending Kilimanjaro is considered a strenuous journey along rocky trails at high altitude.
During the seven-day trip, the Idahoans took the Rongai route on the mountain's north side and descended on the south side. The group trekked through five major ecological zones.
McCurdy and Packer rolled themselves uphill assisted by porters and guides. There was no way to keep the wheelchairs - which have wide wheels on each side and a volleyball-like front tire - from rolling backward, so the porters and climbers spent lots of energy fighting gravity.
Near the summit, the group opted to camp above Kibo huts. The huts, at 15,416 feet, typically serve as the launching point for climbers on the final climb to the summit. Camping above Kibo huts meant that the porters were not acclimatized to staying overnight at the higher altitude beyond the huts before the final ascent to the peak.
Thinner air, combined with pushing wheelchairs up the mountain, added to the physical nature of the porters' climbs and some had symptoms of altitude sickness.
"It was amazing to see their drive and willingness to push on," Olson-Elle said.
An Idaho climber also was feeling ill the morning of the summit climb, so the group decided not to urge the guides and porters farther up the mountain. Instead, they selected Sage McCurdy to make the trek to the summit with a guide.
Sage made it to Gillman's Point at 18,630 feet on Kibo, one of the three extinct volcanoes on Mount Kilimanjaro. He said the highlight of the climb was "the view at the top and the accomplishment of being there."
Climbing big mountains is a journey as well as a destination. Experiences beyond the climbing add to the trip. The Idaho group enjoyed meeting climbers from all over the world.
"The challenge of the situation was exciting," Tom McCurdy said. "Every moment is fresh and every moment is challenging." He enjoyed negotiating the terrain, putting people's ideas together to generate a solution and working through language barriers.
Dealing with the altitude, keeping clean, avoiding illness and staying healthy were the additional challenges confronting the climbers.
Sage is proud of his dad. "He is a very strong man, both physically and mentally. He is smart and determined but is always looking out for other people," Sage said.
The Idaho team is already rethinking their wheelchair selection for future mountain climbing adventures. Packer is striving to raise funds for another ascent of Kilimanjaro.
Natalie Bartley is a freelance outdoors writer. Her column runs Thursdays in Idaho Outdoors. Natalie can be contacted by e-mail: natbartley@earthlink.net
17 August 2008
Kid Connection ready for action
After months of planning and construction, the Shelbyville Parks and Recreation Department and the Blue River Community Foundation are ready to open the Kid Connection playground in Kennedy Park.
A ribbon-cutting ceremony at 5 p.m. on Wednesday will mark the official opening, and the public is invited to see what the new play area has to offer.
Although all the children in the community will be able to use the new recreation area, this playground was planned specifically to meet the needs of disabled children. Children and adults confined to wheelchairs - or simply those with mobility limitations - were virtually barred from most of the playgrounds in Shelbyville because it was too difficult to get to the play equipment, and much of the equipment was geared only to children without disabilities.
Wednesday's ribbon-cutting ceremony is open to anyone who chooses to attend, but invitations have been sent to Shares Inc., Especially Kidz and the Blue River Special Education Cooperative so as many people with disabilities as possible will hear about the new playground and attend the celebration.
As executive director of the Blue River Community Foundation, Susan Furgeson's attention was caught in February 2007 when she heard about a $160,000 grant through the Kellogg Foundation to provide funds for improving access for people with disabilities to the city's parks systems. The BRCF needed to partner with a recreation provider before pursuing the grant, and the director of Shelbyville Parks and Recreation, Karen Martin, was excited about the idea from the beginning.
In October 2007, Furgeson was notified that Shelbyville had received the grant - then the hard work really began.
Everyone plays
Furgeson and Martin began working on a design for the playground that would focus on activities that disabled children and adults could enjoy, but the Kellogg Foundation quickly told them that the park must utilize "universal design."
"This was a learning process for all of us," Furgeson said. "We were thinking only about a playground for disabled children, but the Kellogg Foundation wanted a playground where kids of all ability levels could play together side-by-side."
Knowing that the concept of universal design was difficult for its grantees to understand, the Kellogg Foundation put them in touch with experts in the field. Jennifer Skulsky, a consultant with the National Center on Accessibility in Bloomington, met with the committee of community partners working on the playground design and explained how the area could appeal to all children.
Modifying the plans for the playground to include activities for children of all ability levels increased the cost of the project to $174,366, but Furgeson said it was worth it to make the playground practical for all children and adults, not just disabled ones.
She noted that sometimes disabled adults want the option of taking their children or grandchildren to the park, and Kid Connection will make that possible.
Soft landings
Some of the parks use pea gravel or mulch around the play equipment and leading up to it, but these surfaces made it very difficult to run a wheelchair. The surface under and around the Kid Connection equipment is called poured-in-place, and it is a soft rubber and urethane component that is mixed and applied on-site.
Made out of recycled tires, the surface at Kennedy Park Kid Connection is tinted green and even looks like grass from a distance. Wheelchairs can move across it easily, and if children or adults fall on the springy surface, the impact is considerably softened compared to asphalt or concrete.
The brightly colored playground equipment is guaranteed to pull the attention of children and adults of all abilities, and cement sidewalks lead from the paved parking lot so that access is guaranteed. The two towers at Kid Connection can be reached by a ramp or stairs, and most of the equipment could be enjoyed by children of any ability.
The Sway Fun swing, for example, is large enough to accommodate several wheelchairs, but children without disabilities also can sit on benches and appreciate the swinging motion.
There are even several large puzzles written in Braille that people with limited eyesight can read, but children without vision problems can read them also.
Getting the grant
To receive the $160,000, the Kellogg Foundation required grantees to come up with a match of $125,000 with $50,000 placed into an endowment fund to provide funds for future accessibility upgrades to the city's parks. The Shelbyville Parks Department committed $30,000 to the project and Shares Inc. and its subsidiary, WAP Inc., donated $15,000 each. The Shelbyville Rotary Club gave $8,000, the Beaty/C-Tech Fund, which is held at the BRCF, awarded the Kid Connection a $2,500 grant, and Makuta Technics gave $1,000. The BRCF donated donated $35,000 for a 1:2 match, which meant that for every $2 donated, the foundation donated an additional $1 up to the total $35,000.
Furgeson said on Thursday that only $15,000 more is needed to complete the match that Kellogg requires. She said that if businesses, organizations or individuals want to make a donation, they should contact her at the foundation at (317) 392-7955 or brf@blueriverfoundation.com or Martin at (317) 392-5128.
15 August 2008
Disabled access protest at cinema
An Odeon spokeswoman said they were looking at alternative sites
Protesters gathered outside a cinema after a disabled teenage girl had to crawl up stairs because she could not take her wheelchair in.
Amy Clements, 15, who has spina bifida, organised the protest outside Hereford's Odeon after her experience.
The protesters were calling for wheelchair access to be improved at the Commercial Road cinema.
However, Odeon said it was not possible to adapt the present building but they were looking for another site.
Amy said she was left feeling "embarrassed" when she was left crawling up the stairs when she went to see the St Trinian's film with three friends.
She said: "My friends went down to see where I could go and they opened a side door, but only found a big hall with stairs.
"My friend offered to carry me up there so I could get up there, but I was scared she was going to drop me, so I crawled up there.
"It was very hard because it was a hard floor. It was embarrassing for me."
More than 20 people took part in the protest on Thursday morning.
'Segregate people'
Jim Lawes, president of Hereford's Access for All scheme, said they had been campaigning "for years" to get the cinema to improve disabled access.
He said: "Just because a kid is in a wheelchair shouldn't mean they can't enjoy the same things as others.
"They should not segregate people in this way."
A spokeswoman for the Odeon cinema said they had been looking into the issue.
In a statement, she said: "The existing arrangements at the Odeon Hereford have been thoroughly reviewed to examine the various options available to provide wheelchair access to the cinema auditorium.
"Unfortunately, after the review Odeon regrets that it is not feasible at present to include the facilities to provide access for people in wheelchairs at this particular cinema.
"As a result of this, Odeon is looking at an alternative site in Hereford and is currently in active dialogue with developers and further information and timings will be issued in due course."
Protesters gathered outside a cinema after a disabled teenage girl had to crawl up stairs because she could not take her wheelchair in.
Amy Clements, 15, who has spina bifida, organised the protest outside Hereford's Odeon after her experience.
The protesters were calling for wheelchair access to be improved at the Commercial Road cinema.
However, Odeon said it was not possible to adapt the present building but they were looking for another site.
Amy said she was left feeling "embarrassed" when she was left crawling up the stairs when she went to see the St Trinian's film with three friends.
She said: "My friends went down to see where I could go and they opened a side door, but only found a big hall with stairs.
"My friend offered to carry me up there so I could get up there, but I was scared she was going to drop me, so I crawled up there.
"It was very hard because it was a hard floor. It was embarrassing for me."
More than 20 people took part in the protest on Thursday morning.
'Segregate people'
Jim Lawes, president of Hereford's Access for All scheme, said they had been campaigning "for years" to get the cinema to improve disabled access.
He said: "Just because a kid is in a wheelchair shouldn't mean they can't enjoy the same things as others.
"They should not segregate people in this way."
A spokeswoman for the Odeon cinema said they had been looking into the issue.
In a statement, she said: "The existing arrangements at the Odeon Hereford have been thoroughly reviewed to examine the various options available to provide wheelchair access to the cinema auditorium.
"Unfortunately, after the review Odeon regrets that it is not feasible at present to include the facilities to provide access for people in wheelchairs at this particular cinema.
"As a result of this, Odeon is looking at an alternative site in Hereford and is currently in active dialogue with developers and further information and timings will be issued in due course."
Shopmobility you are a great service!!!!
Well yesterday Mum and I had our first shopping trip together for a long time, we decided that while I was on holiday this week we would try and go to Middlesbrough shopping. The only concern was that Mum cant push her chair very well, so I decide that I would ring Shopmobility up to see if they still did the volunteering side to help people with there shopping, and wow I was in luck!!! So I booked one of there volunteers in advance ready for our shopping trip. I then rang one of my good friends who have a wheelchair accessible taxi and we were off for the day!!!!
It was a little bit hair raising when we got to the car park because we had to go up the ramp and we just to say got under, I thought it was going to get stuck, anyway my friend said oh don’t worry we can go back as a convertible its fine!!!!. We managed to off load ok and headed for the shopmobility shop and I could tell on Mum’s face she felt as though she was free!!! This to me is something to treasure considering what she has gone through. We went into the shop to register with them and wait for the volunteer to arrive and then we were off!! Just as we were going to go out he dashed back to get a bag to go on the back of the chair. I saw mum smile and she said oooo that’s big, plenty of room for the bags!!! , so we were off into the mall and straight into the shops, Mum getting pushed and me whizzing along in my powerchair it was great because we didn’t have to worry about getting stuck or anything, and it was a reassuring feeling that we had someone with us, and I could see mum was relaxed, because the volunteer was really careful and we all had a great laugh and spend loads.
We went to MacDonald’s for dinner and although its big I thought it was a bit of a mistake because it was really busy, but we managed all the same Mum and I found a table and he went and queued for the food and we all sat together and had chat. Then Mum got her second wind so to speak and we were off again. By the time we got back to Shopmobility we had completely filled the bag and more and we had had a great time, and something that we will be doing again soon, now we know we can.
It was a little bit hair raising when we got to the car park because we had to go up the ramp and we just to say got under, I thought it was going to get stuck, anyway my friend said oh don’t worry we can go back as a convertible its fine!!!!. We managed to off load ok and headed for the shopmobility shop and I could tell on Mum’s face she felt as though she was free!!! This to me is something to treasure considering what she has gone through. We went into the shop to register with them and wait for the volunteer to arrive and then we were off!! Just as we were going to go out he dashed back to get a bag to go on the back of the chair. I saw mum smile and she said oooo that’s big, plenty of room for the bags!!! , so we were off into the mall and straight into the shops, Mum getting pushed and me whizzing along in my powerchair it was great because we didn’t have to worry about getting stuck or anything, and it was a reassuring feeling that we had someone with us, and I could see mum was relaxed, because the volunteer was really careful and we all had a great laugh and spend loads.
We went to MacDonald’s for dinner and although its big I thought it was a bit of a mistake because it was really busy, but we managed all the same Mum and I found a table and he went and queued for the food and we all sat together and had chat. Then Mum got her second wind so to speak and we were off again. By the time we got back to Shopmobility we had completely filled the bag and more and we had had a great time, and something that we will be doing again soon, now we know we can.
11 August 2008
Taxis for disabled on the way
A DEDICATED taxi service for the disabled could be on the way if its backers can raise BD100,000 they need to get it off the ground.It is the brainchild of Bahrain Mobility International (BMI), which has already launched a first-of-its kind wheelchair repair service.
The organisation is now seeking backers for its subsidised taxi project, which would also cater to the country's blind.
It is now seeking sponsors to help it buy seven buses and cars, as well as pay salaries and other overheads.
"The disabled are really suffering because they don't have transport," said BMI vice-president Adel Sultan.
"If they get a job and can't drive they need to employ someone, so this service will make it easy for them.
"It is difficult for them to go in regular taxis so we will have specialised buses for wheelchair users."
He said the service would initially be aimed at those needing transport to work and hospital appointments, but in future could be extended into a 24-hour taxi service for the disabled.
"All this is a dream that is now coming into reality," said Mr Sultan.
"Since we started the golf tournament fundraiser three years ago we have been able to provide our services without struggling like before and this has given us the chance to think about other needs and services for the disabled.
"So for the first time we are now making a planning and development section in BMI."
Among the projects that BMI hopes will make a difference to Bahrain's disabled is the wheelchair repair workshop, located at its premises in Isa Town.
Thousands of disabled people across the country are expected to benefit from the new venture, which is the first of its kind in the country.
Workshop
The workshop also repairs motorised beds and has been made possible thanks to donations of BD7,000 from the Social Development Ministry and BD3,000 from the Bahrain Round Table.
The donations cover equipment, stock, running costs and salaries of a technician and a supervisor for one year, but it is expected to cost about BD5,000 to run the workshop annually.
Customers will be provided with a hired wheelchair while they are waiting and workshop staff can also give advice on buying and using a wheelchair.
Mr Sultan said the disabled and the elderly had been struggling for years because there wasn't a suitable wheelchair repair facility in Bahrain.
"They go to the shop they bought the wheelchair from and the trader doesn't have the parts and doesn't care about repairing it because it will not profit him much," he said.
"They are forced to go to a bicycle shop, but most companies don't supply parts - especially for powered wheelchairs.
"But now they can come to our workshop and we will only charge them the cost of the parts."
He said BMI had been working on the repair facility project for three years and was happy it was finally up and running.
"I was pushing for this because I know the suffering of wheelchair users, many of them call me up and say they have a flat tyre and can't go outside," said Mr Sultan.
"The wheelchair is an extension of their body. I use a calibre (a metal rod that stabilises the leg) and if something happens to it I can't walk.
"It's the same for the wheelchair user, if they have a problem they feel they are not independent.
"Everyone is very happy because at last they have somewhere to go."
BMI has a long-term plan to provide mobile repair services for wheelchair users who are unable to visit the workshop.
More than 6,000 disabled people are registered at the Social Development Ministry and more than 2,000 elderly use wheelchairs.
BMI is now compiling a database of wheelchair users in Bahrain and hopes the workshop will help them collect statistics.
It is also planning a project in October to provide the deaf and disabled with driving lessons.
That initiative is being sponsored by the ministry, which is providing BD30,000 to run the project for year.
"We will provide the driving instructor free of charge, we will have one for the deaf and one for those with physical disabilities," said Mr Sultan.
The organisation is now seeking backers for its subsidised taxi project, which would also cater to the country's blind.
It is now seeking sponsors to help it buy seven buses and cars, as well as pay salaries and other overheads.
"The disabled are really suffering because they don't have transport," said BMI vice-president Adel Sultan.
"If they get a job and can't drive they need to employ someone, so this service will make it easy for them.
"It is difficult for them to go in regular taxis so we will have specialised buses for wheelchair users."
He said the service would initially be aimed at those needing transport to work and hospital appointments, but in future could be extended into a 24-hour taxi service for the disabled.
"All this is a dream that is now coming into reality," said Mr Sultan.
"Since we started the golf tournament fundraiser three years ago we have been able to provide our services without struggling like before and this has given us the chance to think about other needs and services for the disabled.
"So for the first time we are now making a planning and development section in BMI."
Among the projects that BMI hopes will make a difference to Bahrain's disabled is the wheelchair repair workshop, located at its premises in Isa Town.
Thousands of disabled people across the country are expected to benefit from the new venture, which is the first of its kind in the country.
Workshop
The workshop also repairs motorised beds and has been made possible thanks to donations of BD7,000 from the Social Development Ministry and BD3,000 from the Bahrain Round Table.
The donations cover equipment, stock, running costs and salaries of a technician and a supervisor for one year, but it is expected to cost about BD5,000 to run the workshop annually.
Customers will be provided with a hired wheelchair while they are waiting and workshop staff can also give advice on buying and using a wheelchair.
Mr Sultan said the disabled and the elderly had been struggling for years because there wasn't a suitable wheelchair repair facility in Bahrain.
"They go to the shop they bought the wheelchair from and the trader doesn't have the parts and doesn't care about repairing it because it will not profit him much," he said.
"They are forced to go to a bicycle shop, but most companies don't supply parts - especially for powered wheelchairs.
"But now they can come to our workshop and we will only charge them the cost of the parts."
He said BMI had been working on the repair facility project for three years and was happy it was finally up and running.
"I was pushing for this because I know the suffering of wheelchair users, many of them call me up and say they have a flat tyre and can't go outside," said Mr Sultan.
"The wheelchair is an extension of their body. I use a calibre (a metal rod that stabilises the leg) and if something happens to it I can't walk.
"It's the same for the wheelchair user, if they have a problem they feel they are not independent.
"Everyone is very happy because at last they have somewhere to go."
BMI has a long-term plan to provide mobile repair services for wheelchair users who are unable to visit the workshop.
More than 6,000 disabled people are registered at the Social Development Ministry and more than 2,000 elderly use wheelchairs.
BMI is now compiling a database of wheelchair users in Bahrain and hopes the workshop will help them collect statistics.
It is also planning a project in October to provide the deaf and disabled with driving lessons.
That initiative is being sponsored by the ministry, which is providing BD30,000 to run the project for year.
"We will provide the driving instructor free of charge, we will have one for the deaf and one for those with physical disabilities," said Mr Sultan.
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