30 September 2009
'My back pain was so horrific, I looked as if I had been mugged' | Mail Online
Gill Keighley was walking to the shops when a passer-by came up to her.
‘Are you all right?’ he asked.
Gill reassured him that she was fine but he looked doubtful. ‘Are you sure? You look in so much pain, I thought you’d been mugged.’ It was a defining moment for Gill, a 37-year-old social worker
'My back pain was so horrific, I looked as if I had been mugged' | Mail Online
‘Are you all right?’ he asked.
Gill reassured him that she was fine but he looked doubtful. ‘Are you sure? You look in so much pain, I thought you’d been mugged.’ It was a defining moment for Gill, a 37-year-old social worker
'My back pain was so horrific, I looked as if I had been mugged' | Mail Online
29 September 2009
Axial Biotech's SCOLISCORE AIS Prognostic Test now available in the U.S
24. September 2009 08:52
Axial Biotech, Inc., a company personalizing spine care through the development of molecular diagnostics, announced today that its SCOLISCORE(TM) AIS Prognostic Test is now being made available to spine specialists in the United States. SCOLISCORE is a saliva-based genetic test designed to predict the risk of progression of scoliosis, an abnormal lateral curvature of the spine. Spine surgeons from 40 medical centers throughout the U.S. were introduced to the test and have been defining its clinical use since December 2008. DePuy Spine, Inc. will market the test for Axial and will feature SCOLISCORE at the Scoliosis Research Society (SRS) Annual Meeting taking place this week.
One hundred thousand children are diagnosed with scoliosis every year in the U.S. and must be followed on a consistent, often quarterly basis, to determine and assess disease progression. The SCOLISCORE Test is designed for male and female patients diagnosed with Mild (10-25 degree Cobb Angle) Adolescent Idiopathic Scoliosis (AIS) who are from 9 through 13 years of age, and who are self-reported as Caucasian (North American, South American, European, Eastern European, Middle Eastern, Southwest Asian Descent).
"The SCOLISCORE Test, along with other diagnostic testing and clinical examination, enables the physician to confidently recommend a personalized treatment regimen for each patient at the first sign of the disease," said John Climaco, president and chief executive officer of Axial Biotech. "SCOLISCORE and other tests in our product pipeline have the potential to completely transform treatment paradigms and ultimately to lead to improved and more efficient patient care."
The development of the SCOLISCORE Test required more than six years of development by Axial researchers and involved DNA samples collected from more than 9,500 individuals at more than 100 clinical sites throughout the world. SCOLISCORE utilizes 53 DNA markers found to be linked to the progressive form of scoliosis. To identify these DNA markers from nearly one million potential targets, Axial researchers leveraged its proprietary, world class genealogic database called GenDB, which contains information on more than 30 million ancestors and descendants of the original Utah pioneers. The test has been validated in three studies with approximately 800 patients with AIS.
"Axial is the first mover into molecular testing for spine disorders, representing a near-term opportunity that rivals the market size of diagnostics for breast cancer," added Climaco. "We have broken the code to scoliosis, and we are uncovering the important role genetics play in other spinal disorders. We are applying our research capability to identify genetic links that could potentially expand applications in scoliosis and also serve as a basis for a predictive test for the treatment of those suffering from degenerative disc disease."
Source: http://www.axialbiotech.com
Axial Biotech, Inc., a company personalizing spine care through the development of molecular diagnostics, announced today that its SCOLISCORE(TM) AIS Prognostic Test is now being made available to spine specialists in the United States. SCOLISCORE is a saliva-based genetic test designed to predict the risk of progression of scoliosis, an abnormal lateral curvature of the spine. Spine surgeons from 40 medical centers throughout the U.S. were introduced to the test and have been defining its clinical use since December 2008. DePuy Spine, Inc. will market the test for Axial and will feature SCOLISCORE at the Scoliosis Research Society (SRS) Annual Meeting taking place this week.
One hundred thousand children are diagnosed with scoliosis every year in the U.S. and must be followed on a consistent, often quarterly basis, to determine and assess disease progression. The SCOLISCORE Test is designed for male and female patients diagnosed with Mild (10-25 degree Cobb Angle) Adolescent Idiopathic Scoliosis (AIS) who are from 9 through 13 years of age, and who are self-reported as Caucasian (North American, South American, European, Eastern European, Middle Eastern, Southwest Asian Descent).
"The SCOLISCORE Test, along with other diagnostic testing and clinical examination, enables the physician to confidently recommend a personalized treatment regimen for each patient at the first sign of the disease," said John Climaco, president and chief executive officer of Axial Biotech. "SCOLISCORE and other tests in our product pipeline have the potential to completely transform treatment paradigms and ultimately to lead to improved and more efficient patient care."
The development of the SCOLISCORE Test required more than six years of development by Axial researchers and involved DNA samples collected from more than 9,500 individuals at more than 100 clinical sites throughout the world. SCOLISCORE utilizes 53 DNA markers found to be linked to the progressive form of scoliosis. To identify these DNA markers from nearly one million potential targets, Axial researchers leveraged its proprietary, world class genealogic database called GenDB, which contains information on more than 30 million ancestors and descendants of the original Utah pioneers. The test has been validated in three studies with approximately 800 patients with AIS.
"Axial is the first mover into molecular testing for spine disorders, representing a near-term opportunity that rivals the market size of diagnostics for breast cancer," added Climaco. "We have broken the code to scoliosis, and we are uncovering the important role genetics play in other spinal disorders. We are applying our research capability to identify genetic links that could potentially expand applications in scoliosis and also serve as a basis for a predictive test for the treatment of those suffering from degenerative disc disease."
Source: http://www.axialbiotech.com
28 September 2009
Disabled climber's training aim
Words by Geoff Abbott and Pictures by Steve Ford
Nik Royale climbing mountains close to his home near Llanberis
A rock climbing enthusiast is hoping to become one of the first disabled instructors in the UK.
Nik Royale is in the final stages of a training process which will allow him to instruct at indoor climbing centres.
The 36-year-old, who lives near Llanberis, Gwynedd, has a progressive form of cerebral palsy and needs to use a wheelchair at times.
If successful, he hopes to set up disabled rock climbing clubs "to break down the barriers".
Mr Royale said: "I need the wheelchair because I can't walk all the time and after I've been climbing my legs go all shaky because it puts a lot of pressure on them.
There is a lot of misconception about the sport that it's only suitable for the very fit and very strong... it's open to absolutely everybody and Nik is very passionate about the sport and wants to publicise that fact
Jude Hargreaves, Awesome Walls, on Nik Royale, pictured
"If I pass my assessment I would like to help set up disabled rock climbing clubs because it can help with balance, coordination, physical fitness, stamina and confidence.
"I would like to break down the barriers so people in wheelchairs can actually do it," he said.
He has recently started training at a centre in Liverpool as part of a requirement to climb at three different centres, and said the more challenging facilities had helped him develop.
"Awesome Walls is huge and they're constantly changing their routes," he explained.
"It's very wheelchair-accessible and the staff are friendly and they've made me feel very welcome.
Technical skills
"They've let me train there for free and that includes two friends who can climb with me.
"I've increased my technical skills and I'm climbing a grade higher now."
He is helping at the centre as an assistant instructor and has been a hit with the younger climbers.
The centre's assistant manager, Jude Hargreaves, said people could forget his disability because he was already a "very good climbing instructor".
"He knows his stuff which is essential and we're really pleased to have him on board," said Jude, who has worked at the centre for two years.
"The way it works at the climbing wall is that we like it to be open to absolutely everybody.
"There is a lot of misconception about the sport that it's only suitable for the very fit and very strong.
"That's not the case. It's open to absolutely everybody and Nik is very passionate about the sport and wants to publicise that fact."
27 September 2009
Starting to build up my walking
View Larger Map
I managed to walk there and back which is about 0.4KM which might not sound a great distance, but it is for me as not walked very much at all before I had my operation
Robots Teach Kids How To Walk
BACKGROUND: Cerebral palsy is a condition that causes physical disability in early development. It is caused by damage to the white matter in the motor centers of the developing brain and abnormalities that disrupt the brain's abilities. Brain damage is caused by bleeding and a lack of oxygen to the brain. Perception, cognition, communication and musculoskeletal problems may also occur. Exposure to toxic substances, premature birth, low birth rate, infections during pregnancy and blood type incompatibility are some of the many risk factors for cerebral palsy. There is no cure for cerebral palsy, but treatments used early and regularly can reduce the affects of the disease. Many specialists are examining how brain cells form and make the right connections and are trying to prevent disruption of the normal development of the brain.
SYMPTOMS: Young children with cerebral palsy may not be able to crawl, walk, or sit without support or reach. Development of abnormal muscle tone or uncontrolled movements may occur. Speech problems, mental retardation, seizures, hearing loss and vision problems are also symptoms of cerebral palsy. Experts say if parents see their child develop these symptoms, they should contact their health care provider for testing.
TREATMENTS: Rehabilitation treatment involves physical activity and stretching to accomplish tasks such as walking and sitting unsupported. Occupational therapy helps address and accomplish needs in order to live the most independent life possible. Communication problems can be overcome by speech therapy. Medications such as dopaminergic drugs like Sinernet and Artane, and muscle relaxants can also be prescribed to reduce abnormal movements and help prevent seizures.
THERAPIES: Lokomat therapy uses a robotic device to help a person learn how to walk. The patient is put in a harness over a treadmill and robotic leg harnesses repeat a natural walking motion while strengthening leg muscles. Computers measure the response to the movements and also provide motivational cartoons to give the patients instruction. Before Lokomat, this therapy was done by people manually moving patients' legs. The more traditional method limited the effectiveness and duration of the therapy, but the Lokomat keeps a constant, more long-term pace. Results from a study indicated that there was an improvement in motor function and walking speed after using Lokomat therapy. Children over age 4 with neurological conditions that are evaluated by a physician are eligible for Lokomat therapy.
SYMPTOMS: Young children with cerebral palsy may not be able to crawl, walk, or sit without support or reach. Development of abnormal muscle tone or uncontrolled movements may occur. Speech problems, mental retardation, seizures, hearing loss and vision problems are also symptoms of cerebral palsy. Experts say if parents see their child develop these symptoms, they should contact their health care provider for testing.
TREATMENTS: Rehabilitation treatment involves physical activity and stretching to accomplish tasks such as walking and sitting unsupported. Occupational therapy helps address and accomplish needs in order to live the most independent life possible. Communication problems can be overcome by speech therapy. Medications such as dopaminergic drugs like Sinernet and Artane, and muscle relaxants can also be prescribed to reduce abnormal movements and help prevent seizures.
THERAPIES: Lokomat therapy uses a robotic device to help a person learn how to walk. The patient is put in a harness over a treadmill and robotic leg harnesses repeat a natural walking motion while strengthening leg muscles. Computers measure the response to the movements and also provide motivational cartoons to give the patients instruction. Before Lokomat, this therapy was done by people manually moving patients' legs. The more traditional method limited the effectiveness and duration of the therapy, but the Lokomat keeps a constant, more long-term pace. Results from a study indicated that there was an improvement in motor function and walking speed after using Lokomat therapy. Children over age 4 with neurological conditions that are evaluated by a physician are eligible for Lokomat therapy.
26 September 2009
Amputees get Wii Fit
Amputees are using Nintendo Wii Fit equipment during training sessions as a way of improving their balance and stability.
Every Thursday patients from across the borough meet at Callaghan House in Heywood to go through a tailored exercise programme that improves their strength and stability after having an amputation.
Sharon Wright, Lead Physiotherapist for Amputee Rehabilitation, believes that using the Wii Fit has massive benefits for her patients. She said: “We work with patients for from four months to two years so it’s important that we find new ways of keeping them interested in their exercise and motivated to complete their training.
“After what has been a traumatic experience, the weekly sessions allow our patients to gain back some independence and meet others who know how they feel. Health professionals from the Manchester Disabled Services Centre (MDSC) also attend the sessions so patients don’t have to travel far for appointments, which can be difficult.”
Alan Carouthers, 71, from Rochdale, has been attending the sessions for five months. He said: “I first came with the hope of being able to walk again and started off doing lots of different exercises and physiotherapy. The Wii Fit is great. It is a challenge but using the slalom and football skills games has helped with my balance tremendously and of course it’s great fun.
“It’s really important to come to these sessions because you meet people who understand how you feel but can have a laugh at the same time. It has really built up my confidence and boosted my morale and I’ve been able to make some great friends.”
Heywood, Middleton and Rochdale Community Healthcare in conjunction with Rochdale Amputee Support Group purchased the Wii Fit equipment using a donation from charity Joining Hands for patients to use as part of their weekly exercise rehabilitation programme.
Help and support for amputees and their families can be found through the Greater Manchester Amputee Support Group, which was founded in 2004 by Malcolm Jones, from Rochdale. Malcolm founded the group after becoming an amputee himself and finding he needed more support. He said: “Having an amputation is a traumatic experience so it’s important that people have a support network once they leave hospital to help them and their families adjust.”
The group meets at Rochdale Infirmary on the second Tuesday of every month from 6:30pm in the Rochdale Infirmary outpatients waiting room.
Every Thursday patients from across the borough meet at Callaghan House in Heywood to go through a tailored exercise programme that improves their strength and stability after having an amputation.
Sharon Wright, Lead Physiotherapist for Amputee Rehabilitation, believes that using the Wii Fit has massive benefits for her patients. She said: “We work with patients for from four months to two years so it’s important that we find new ways of keeping them interested in their exercise and motivated to complete their training.
“After what has been a traumatic experience, the weekly sessions allow our patients to gain back some independence and meet others who know how they feel. Health professionals from the Manchester Disabled Services Centre (MDSC) also attend the sessions so patients don’t have to travel far for appointments, which can be difficult.”
Alan Carouthers, 71, from Rochdale, has been attending the sessions for five months. He said: “I first came with the hope of being able to walk again and started off doing lots of different exercises and physiotherapy. The Wii Fit is great. It is a challenge but using the slalom and football skills games has helped with my balance tremendously and of course it’s great fun.
“It’s really important to come to these sessions because you meet people who understand how you feel but can have a laugh at the same time. It has really built up my confidence and boosted my morale and I’ve been able to make some great friends.”
Heywood, Middleton and Rochdale Community Healthcare in conjunction with Rochdale Amputee Support Group purchased the Wii Fit equipment using a donation from charity Joining Hands for patients to use as part of their weekly exercise rehabilitation programme.
Help and support for amputees and their families can be found through the Greater Manchester Amputee Support Group, which was founded in 2004 by Malcolm Jones, from Rochdale. Malcolm founded the group after becoming an amputee himself and finding he needed more support. He said: “Having an amputation is a traumatic experience so it’s important that people have a support network once they leave hospital to help them and their families adjust.”
The group meets at Rochdale Infirmary on the second Tuesday of every month from 6:30pm in the Rochdale Infirmary outpatients waiting room.
25 September 2009
What Job Seekers with Disabilities Need to Know
Whether you are entering the workforce for the first time, returning to the job market, or seeking advancement, the challenges of a job search are similar. Your goal is to find the position that best meets your needs. You must be qualified and able to sell yourself as the best applicant for the jobs for which you apply. Here are some tips that can help you in meeting your job search goal.
Have a strong sense of who you are. Know your assets and how to market them to employers. Be as confident as possible that you are the best applicant for the job and reflect that in all communications by voice and in writing.
Follow the current job trends. Take the initiative to maintain cutting edge skills that match changing employer requirements. Take classes that are not only of interest to you, but also bolster your workforce qualifications. Learn another language. Take a computer course. Join job networking groups.
Be prepared to increase your technical computer skills with various software and office equipment. Computer skills and offerings change quickly. Be flexible and ready. This always increases your marketability in the job market.
Conduct online job searches in addition to searches in the classifieds and personal referrals. Visit employer Web pages and key job sites such as:
• CareerPath: http://www.careerpath.com/
• Monster Board: http://www.monster.com/
• CareerMosaic: http://www.careermosaic.com/
• CareerBuilder: http://www.careerbuilder.com/
Consider doing informational interviews with various companies. This not only gets your presence and qualifications before a potential employer, but helps you practice and prepare for varied interview processes and styles. Practice one-on-one as well as panel interviews. You never know which job will require which style of interview.
Keep your resume current and have different copies of it prepared to meet different job objectives. Be ready to customize your resume to reflect the assets you bring to each job. Use key words that can be electronically scanned by potential employers to positions you want. Reflect continuous employment in your skill area and fill in gaps with education and volunteer work whenever possible. Summer employment should support your field of interest. Volunteer in your community or at your house of worship, or obtain temporary jobs if you are currently unemployed. Get out there and stay active to the best of your ability be seen and heard. Select the resume format that minimizes any gaps in employment. Seek the help of a professional resume writer or use a resume writing program to help you highlight your strengths in the best way possible.
Locating a job can be as full time an endeavor as actual employment. Give full attention to all that you do and be mindful of any errors in your information. Errors will knock you out of the running quickly. Keep your employment dates up to date as best you can. Call your previous employers to double check those dates.
It is crucial to have a written personal plan for growth opportunities when you are working. Seeking other opportunities does not stop simply because you are already employed. You are looking to grow in each opportunity you take on. Know what you must do each day to move closer to your goal for a promotion or the next job. Stay focused and motivated.
Maintain and continuously strive to broaden your network. If you are working, network inside the company. Join professional groups. Choose opportunities that match your skills and goals. Request and study annual reports of select companies. Reflect each company’s image in all communications with each company’s representatives. Make good use of your local library. Read trade journals and business publications in your chosen field. Get to know your chosen career track and its emerging trends inside and out.
Develop your personal presence. A pleasant personality is a necessary asset. Your eagerness to adapt and to be a team player is essential. Show flexibility and eagerness to move forward with emerging change. A sense of humor and positive attitude are essential as well.
You should only disclose a disability if you require an accommodation for an interview (such as asking for forms in alternate formats, locating an accessible interview site or if you think you might need an interpreter during the interview). Also when it comes to performing the essential functions of a particular job, you will need to discuss with your employer your accommodation necessities. Your resume and cover letter should focus on the abilities you bring to the job, not on your disability.
Look your best from head to toe. A clean wheelchair, crutches or cane also goes along way to set off your interview outfit. Dress conservatively. Be brief and to the point when answering interview questions. Maintain a demeanor of success and reflect the company image when you respond to the interviewer’s questions. Have full confidence in what you bring to the employer and show how your skills meet the company's specific hiring needs.
Also, be prepared to ask thoughtful questions about the job and the company. Show you are interested in the company by doing research on the company beforehand and never say anything negative. Follow up immediately after your interview with a thank you letter or e-mail transmission. This keeps you in the employer’s mind well after the interview and sets the standard for courteous correspondence and behavior
Have a strong sense of who you are. Know your assets and how to market them to employers. Be as confident as possible that you are the best applicant for the job and reflect that in all communications by voice and in writing.
Follow the current job trends. Take the initiative to maintain cutting edge skills that match changing employer requirements. Take classes that are not only of interest to you, but also bolster your workforce qualifications. Learn another language. Take a computer course. Join job networking groups.
Be prepared to increase your technical computer skills with various software and office equipment. Computer skills and offerings change quickly. Be flexible and ready. This always increases your marketability in the job market.
Conduct online job searches in addition to searches in the classifieds and personal referrals. Visit employer Web pages and key job sites such as:
• CareerPath: http://www.careerpath.com/
• Monster Board: http://www.monster.com/
• CareerMosaic: http://www.careermosaic.com/
• CareerBuilder: http://www.careerbuilder.com/
Consider doing informational interviews with various companies. This not only gets your presence and qualifications before a potential employer, but helps you practice and prepare for varied interview processes and styles. Practice one-on-one as well as panel interviews. You never know which job will require which style of interview.
Keep your resume current and have different copies of it prepared to meet different job objectives. Be ready to customize your resume to reflect the assets you bring to each job. Use key words that can be electronically scanned by potential employers to positions you want. Reflect continuous employment in your skill area and fill in gaps with education and volunteer work whenever possible. Summer employment should support your field of interest. Volunteer in your community or at your house of worship, or obtain temporary jobs if you are currently unemployed. Get out there and stay active to the best of your ability be seen and heard. Select the resume format that minimizes any gaps in employment. Seek the help of a professional resume writer or use a resume writing program to help you highlight your strengths in the best way possible.
Locating a job can be as full time an endeavor as actual employment. Give full attention to all that you do and be mindful of any errors in your information. Errors will knock you out of the running quickly. Keep your employment dates up to date as best you can. Call your previous employers to double check those dates.
It is crucial to have a written personal plan for growth opportunities when you are working. Seeking other opportunities does not stop simply because you are already employed. You are looking to grow in each opportunity you take on. Know what you must do each day to move closer to your goal for a promotion or the next job. Stay focused and motivated.
Maintain and continuously strive to broaden your network. If you are working, network inside the company. Join professional groups. Choose opportunities that match your skills and goals. Request and study annual reports of select companies. Reflect each company’s image in all communications with each company’s representatives. Make good use of your local library. Read trade journals and business publications in your chosen field. Get to know your chosen career track and its emerging trends inside and out.
Develop your personal presence. A pleasant personality is a necessary asset. Your eagerness to adapt and to be a team player is essential. Show flexibility and eagerness to move forward with emerging change. A sense of humor and positive attitude are essential as well.
You should only disclose a disability if you require an accommodation for an interview (such as asking for forms in alternate formats, locating an accessible interview site or if you think you might need an interpreter during the interview). Also when it comes to performing the essential functions of a particular job, you will need to discuss with your employer your accommodation necessities. Your resume and cover letter should focus on the abilities you bring to the job, not on your disability.
Look your best from head to toe. A clean wheelchair, crutches or cane also goes along way to set off your interview outfit. Dress conservatively. Be brief and to the point when answering interview questions. Maintain a demeanor of success and reflect the company image when you respond to the interviewer’s questions. Have full confidence in what you bring to the employer and show how your skills meet the company's specific hiring needs.
Also, be prepared to ask thoughtful questions about the job and the company. Show you are interested in the company by doing research on the company beforehand and never say anything negative. Follow up immediately after your interview with a thank you letter or e-mail transmission. This keeps you in the employer’s mind well after the interview and sets the standard for courteous correspondence and behavior
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
23 September 2009
Following UK soldiers' rehabilitation
The number of British service personnel injured in Afghanistan and receiving specialist treatment will be released on Wednesday.
The BBC has been following the treatment of some of the soldiers in a two-part documentary.
Watch here
Caroline Wyatt reports.
Wounded, BBC One, 23 September at 21:00 and 22:35 BST.
The BBC has been following the treatment of some of the soldiers in a two-part documentary.
Watch here
Caroline Wyatt reports.
Wounded, BBC One, 23 September at 21:00 and 22:35 BST.
22 September 2009
Shops 'breaching disability law'
An investigation for BBC Wales suggests that many shops and other premises could be in breach of the law about access for disabled people.
In 2004, a clause was added to the Disability Discrimination Act, ordering "reasonable adjustments" to premises to make access easier.
Five years on, however, research suggests compliance with the law is patchy
listen here
In 2004, a clause was added to the Disability Discrimination Act, ordering "reasonable adjustments" to premises to make access easier.
Five years on, however, research suggests compliance with the law is patchy
listen here
21 September 2009
Naidex 2010
Join us at Naidex 2010...the UKs largest disability, homecare and rehabilitation event held at the NEC.
Naidex is the ideal opportunity to raise your profile and get your message across to thousands of healthcare professionals and members of public with a disability.
Charities who have already booked a stand include the Disabled Living Foundation, British Polio Fellowship, Canine Partners, Guide Dogs, Health Professions Council, Holidays for All, Mobilise, Motability, Muscular Dystrophy Campaign, National Trust, RNIB, RNID, Treloar Trust, Stroke Association and Vitalise.
This year was the most successful show to date with over 360 exhibitors and 10,978 visitors (ABC audited).
For Naidex 2010 we are growing the show even further and introducing a new Car Zone, Communication Village and Sensory Garden feature.
Over 70% of space has already been booked - so contact us now to find out about availability and book your stand!
Call Charlotte or Dean on 0207 728 4203 or email naidex@emap.com
20 September 2009
New Approach to Treating Cerebral Palsy?
The principles behind neuro-cognitive therapy are two-fold. Firstly that children with developmental difficulties experience problems of sensory perception and need the provision of an appropriate ‘neurological environment' in order to correct these sensory mis-perceptions. Secondly, learning can lead development and no matter how badly affected a child is, if information is presented at the correct level and in the correct manner, any child can learn.
The regime is the brainchild of Andrew Brereton, who himself was the father of a child who suffered profound cerebral palsy and autism. Unfortunately Andrew’s son passed away from a stroke four years ago, but during his life and afterward Andrew has striven to study and become qualified in the areas of child development and cognitive psychology.
During his son’s life Andrew gained the his first degree in psychology and child development, later studying in the department of ‘Human communications sciences’ at the University of Sheffield, where he gained post graduate qualifications in ‘Language and Communication Impairments in Children.
’ Latterly Andrew gained his Msc in cognitive psychology and child development.His son’s problems initially motivated Andrew to study as he became tired of the life of his family being controlled by doctors and therapists, who often did not appear to have much of a clue about treating his son. His aim was to amass the knowledge required to free his family from this control, so that they could question the professionals who were treating his son as equals and regain their independence. However, it soon became apparent to Andrew that his studies would become far more meaningful to him than this simple ambition and he began to nurture ideas about helping other children.Andrew’s quest for knowledge led his family all over the world to various clinics who offered alternative treatments, often against the advice of his son’s medical professionals, some of whom treated the family badly, viewing the families decision to try alternatives as a threat to their competence. Despite the fact that some of the alternative treatments were helpful in helping his son make incredible developmental gains, for instance restoring his vision from being cortically blind, Andrew became disillusioned with many of the proponents of such alternatives after discovering their lack of qualifications in the field. It was at this point that he knew how he must use his own studies to help other children like his son.Andrew launched Snowdrop earlier this year and has been staggered at the response from families who have children like his son. Within just a few short weeks of the launch Snowdrop is treating children from as far afield as the US, South Africa and Indonesia, in addition to treating children in the UK.Andrew has also published two books, one on the subject of cerebral palsy and the other concerning autism, which can be obtained through the Snowdrop website.
The regime is the brainchild of Andrew Brereton, who himself was the father of a child who suffered profound cerebral palsy and autism. Unfortunately Andrew’s son passed away from a stroke four years ago, but during his life and afterward Andrew has striven to study and become qualified in the areas of child development and cognitive psychology.
During his son’s life Andrew gained the his first degree in psychology and child development, later studying in the department of ‘Human communications sciences’ at the University of Sheffield, where he gained post graduate qualifications in ‘Language and Communication Impairments in Children.
’ Latterly Andrew gained his Msc in cognitive psychology and child development.His son’s problems initially motivated Andrew to study as he became tired of the life of his family being controlled by doctors and therapists, who often did not appear to have much of a clue about treating his son. His aim was to amass the knowledge required to free his family from this control, so that they could question the professionals who were treating his son as equals and regain their independence. However, it soon became apparent to Andrew that his studies would become far more meaningful to him than this simple ambition and he began to nurture ideas about helping other children.Andrew’s quest for knowledge led his family all over the world to various clinics who offered alternative treatments, often against the advice of his son’s medical professionals, some of whom treated the family badly, viewing the families decision to try alternatives as a threat to their competence. Despite the fact that some of the alternative treatments were helpful in helping his son make incredible developmental gains, for instance restoring his vision from being cortically blind, Andrew became disillusioned with many of the proponents of such alternatives after discovering their lack of qualifications in the field. It was at this point that he knew how he must use his own studies to help other children like his son.Andrew launched Snowdrop earlier this year and has been staggered at the response from families who have children like his son. Within just a few short weeks of the launch Snowdrop is treating children from as far afield as the US, South Africa and Indonesia, in addition to treating children in the UK.Andrew has also published two books, one on the subject of cerebral palsy and the other concerning autism, which can be obtained through the Snowdrop website.
Keep dreaming
I would like to first say, that I’m pleased to announce that The Emotional Struggle is now being sold in the United Kingdom. And while it may only be through an online store, the thought just makes me grin from ear to ear. So I’m now dedicating all my efforts to promoting internationally. I may or may not be be recieving help from a marketing company.
It all comes down to money ,(it almost always does) also you can now find me on Google Books! Exciting stuff huh? I think so… Any how, recently I recieved an instant message from an online friend. She was apperantly reading through some of my blogs, and became a bit steemed with me. I’m not a huge fan of contriversy, but I decided to be apart of the conversation.
Her first comment was directed at the fact that, my blogs seem a bit gloomy. And that she did not understand my darkness. She also is physically challenged and is far worse of than myself. The conversation basicly was one sided, she was telling me her story, and the more that she told me, the more it became clear to me that her problem isn’t so much with me, as it is within herself, her skin and God.
This blog is not an attempt to point a finger at her, but more so a way to bring about a collective message. The message has to do with our dreams. Some of us have just stopped all together, or no longer feel the need. I know I speak of dreaming a lot. Because it’s so vital, how many times through out the Bible does God communicate through dreams?
I’m not talking about dreaming about a new car, or something tangible like that. That’s a desire you can slowly work too. I’m mainly speaking about, dreams that sit somewhere inside us that we can’t possible get to on our own. When you meet Jesus, everything changes. A huge majority of that change is inward, why is it inwardly? Because we live inwardly. Think about it, are hearts pump blood through out our bodies. Cells produce in minutes time, making you, you. If the heart stops, we die.
We are inward out beings, how we feel about ourselves on the inside reflects outwardly in our moods and over all out look. If you think your life is a big dirty trash can full of poop, it will be. If look for the good in all things, chances are the outcome will much brighter. I am an optimist at heart, but that does not mean that bad days will not find me, because it does most of the time. But you keep getting back up. You moving foward no matter what.
Keep dreaming, take more walks. Read some good books. All well be okay.
-Brandon
It all comes down to money ,(it almost always does) also you can now find me on Google Books! Exciting stuff huh? I think so… Any how, recently I recieved an instant message from an online friend. She was apperantly reading through some of my blogs, and became a bit steemed with me. I’m not a huge fan of contriversy, but I decided to be apart of the conversation.
Her first comment was directed at the fact that, my blogs seem a bit gloomy. And that she did not understand my darkness. She also is physically challenged and is far worse of than myself. The conversation basicly was one sided, she was telling me her story, and the more that she told me, the more it became clear to me that her problem isn’t so much with me, as it is within herself, her skin and God.
This blog is not an attempt to point a finger at her, but more so a way to bring about a collective message. The message has to do with our dreams. Some of us have just stopped all together, or no longer feel the need. I know I speak of dreaming a lot. Because it’s so vital, how many times through out the Bible does God communicate through dreams?
I’m not talking about dreaming about a new car, or something tangible like that. That’s a desire you can slowly work too. I’m mainly speaking about, dreams that sit somewhere inside us that we can’t possible get to on our own. When you meet Jesus, everything changes. A huge majority of that change is inward, why is it inwardly? Because we live inwardly. Think about it, are hearts pump blood through out our bodies. Cells produce in minutes time, making you, you. If the heart stops, we die.
We are inward out beings, how we feel about ourselves on the inside reflects outwardly in our moods and over all out look. If you think your life is a big dirty trash can full of poop, it will be. If look for the good in all things, chances are the outcome will much brighter. I am an optimist at heart, but that does not mean that bad days will not find me, because it does most of the time. But you keep getting back up. You moving foward no matter what.
Keep dreaming, take more walks. Read some good books. All well be okay.
-Brandon
Left behind
How many of you with some kind of impairment or challenge have felt left behind because you were not accepted? How many of you wanted to be given a chance to show your talents and abilities to the world around you? And, how many of you wanted to move forward with a positive attitude, but were held back because it was inconvenient for someone else?
What a shame it is that a country so vast, so smart, and so sophisticated turns its back on the talents and needs of the most under-developed population. Not so much the visually, or hearing impaired; but individuals with Cerebral Palsy and other mobility or speech impairments which are either left to solve there own problems, or are locked away in group homes, or forced to be monitored by an army of social workers who want total control of there being. Moreover, we are told time and again that we are incapable and cannot work. We are told to our faces that it’s better for everyone if we just stay at home, aren’t seen, and collect a social security check for the rest of our lives.
How sad is that? How sad is it that a group of people or a government of people will not accept us as human beings. How sad is it that we are put here on this earth, but have to struggle all our lives!
What is wrong with the picture? And, what is wrong with the world? And why do “we” have to suffer? Why?
I can’t live with this injustice, discrimination, and humiliation any more! Why, you might be asking yourself? Because this happened to me. So I’m the first to balk. I’ll be the first to admit the truth. And I’ll be the first to share it honestly and openly with the world so that good change can come from it.
Has this happened to you?
These “experts” have only one set of options. And these options don’t usually include making our lives better. What’s more, is that these options limit rather than increase our control over our own lives. It segregates us from society, and denies us our birth right and equal status as individuals and Americans. We were put on this earth to have the opportunity to develop and make use of whatever talents and brains that God gave us. Just because we were paralyzed does not mean we don’t have sense about us to think, act, or perform a given task, or duty we would love to do. Why shouldn’t we then, be treated or given the same opportunities? Are we so ugly to look at, we have to be locked away in a closet?
Time after time, we do as we are told like good little children, although we get nowhere fast. Once again, we are not taken seriously, and we are disrespected and discounted. This must end! And so must these despicable attitudes from people who make up a world who don’t want anything to do with us or change.
What a shame it is that a country so vast, so smart, and so sophisticated turns its back on the talents and needs of the most under-developed population. Not so much the visually, or hearing impaired; but individuals with Cerebral Palsy and other mobility or speech impairments which are either left to solve there own problems, or are locked away in group homes, or forced to be monitored by an army of social workers who want total control of there being. Moreover, we are told time and again that we are incapable and cannot work. We are told to our faces that it’s better for everyone if we just stay at home, aren’t seen, and collect a social security check for the rest of our lives.
How sad is that? How sad is it that a group of people or a government of people will not accept us as human beings. How sad is it that we are put here on this earth, but have to struggle all our lives!
What is wrong with the picture? And, what is wrong with the world? And why do “we” have to suffer? Why?
I can’t live with this injustice, discrimination, and humiliation any more! Why, you might be asking yourself? Because this happened to me. So I’m the first to balk. I’ll be the first to admit the truth. And I’ll be the first to share it honestly and openly with the world so that good change can come from it.
Has this happened to you?
These “experts” have only one set of options. And these options don’t usually include making our lives better. What’s more, is that these options limit rather than increase our control over our own lives. It segregates us from society, and denies us our birth right and equal status as individuals and Americans. We were put on this earth to have the opportunity to develop and make use of whatever talents and brains that God gave us. Just because we were paralyzed does not mean we don’t have sense about us to think, act, or perform a given task, or duty we would love to do. Why shouldn’t we then, be treated or given the same opportunities? Are we so ugly to look at, we have to be locked away in a closet?
Time after time, we do as we are told like good little children, although we get nowhere fast. Once again, we are not taken seriously, and we are disrespected and discounted. This must end! And so must these despicable attitudes from people who make up a world who don’t want anything to do with us or change.
19 September 2009
DOUBLE WISH
Baby hospice seeks top spot
ZOE’S Place is determined to clinch the double by being top of the table again at the end of this year’s Wish campaign.
And with only five days to go to register it won’t be long until the tokens start mounting up.
Last year the baby hospice in Normanby collected a staggering 143,830 tokens to take home £1,403.62.
“It was the cutting and sticking I remember, we went through a lot of Pritt Sticks, it was all hands on deck,” said fundraiser Sue Fox, who is ready to do it all again and hopefully raise even more money.
Chief executive Mark Guidery said the 2008 Wish funding was used to buy a standing frame to assist youngsters who struggle to stand while they have physiotherapy.
“It’s a very expensive, specialised piece of equipment,” he said. “Without the money from Wish we would have had to sacrifice something else to buy it.”
Mrs Fox said: “We have 55 families that regularly access Zoe’s Place so we need every penny we can get.
“We know it’s difficult at the moment because of the current financial climate, a lot of people find it hard to find that extra pound to give to charity, so something like the Wish appeal is brilliant for us.”
Zoe’s Place is a home from home for babies who have life-limiting illnesses and complex needs.
It offers palliative and respite care for babies and infants from birth to five years old and can take up to six youngsters at any one time.
For the parents who need to take advantage of its services it provides a vital lifeline.
Jenny Landess, 24, of Linthorpe whose son Josh McMahon,has cerebral palsy, said she would be getting all her friends and family to collect tokens for the baby hospice which has done so much for her son.
“Zoe’s Place is absolutely excellent. They are lifesavers. It’s so good to get some respite. It costs £850,000 a year to run so every little helps.” Mike Farrell, 41, of Marton, whose daughter Megan has cerebral palsy, said: “Zoe’s Place is absolutely fantastic especially with Megan. She suffered another seizure a couple of weeks ago while she was at Zoe’s Place and the staff handled it perfectly.
“When you go into a place like this you realise how dedicated and professional the staff are - it’s a place that really deserves as much as we can give them. I would urge people to get behind Zoe’s Place, the more money it gets the better.”
This year the Wish campaign has £30,000 to give away - the more tokens the baby hospice collects the more money it will walk away with.
To support Zoe’s Place send your Wish tokens to: Zoe’s Place Baby Hospice, Crossbeck House, High Street, Normanby, Middlesbrough, TS6 9DA
ZOE’S Place is determined to clinch the double by being top of the table again at the end of this year’s Wish campaign.
And with only five days to go to register it won’t be long until the tokens start mounting up.
Last year the baby hospice in Normanby collected a staggering 143,830 tokens to take home £1,403.62.
“It was the cutting and sticking I remember, we went through a lot of Pritt Sticks, it was all hands on deck,” said fundraiser Sue Fox, who is ready to do it all again and hopefully raise even more money.
Chief executive Mark Guidery said the 2008 Wish funding was used to buy a standing frame to assist youngsters who struggle to stand while they have physiotherapy.
“It’s a very expensive, specialised piece of equipment,” he said. “Without the money from Wish we would have had to sacrifice something else to buy it.”
Mrs Fox said: “We have 55 families that regularly access Zoe’s Place so we need every penny we can get.
“We know it’s difficult at the moment because of the current financial climate, a lot of people find it hard to find that extra pound to give to charity, so something like the Wish appeal is brilliant for us.”
Zoe’s Place is a home from home for babies who have life-limiting illnesses and complex needs.
It offers palliative and respite care for babies and infants from birth to five years old and can take up to six youngsters at any one time.
For the parents who need to take advantage of its services it provides a vital lifeline.
Jenny Landess, 24, of Linthorpe whose son Josh McMahon,has cerebral palsy, said she would be getting all her friends and family to collect tokens for the baby hospice which has done so much for her son.
“Zoe’s Place is absolutely excellent. They are lifesavers. It’s so good to get some respite. It costs £850,000 a year to run so every little helps.” Mike Farrell, 41, of Marton, whose daughter Megan has cerebral palsy, said: “Zoe’s Place is absolutely fantastic especially with Megan. She suffered another seizure a couple of weeks ago while she was at Zoe’s Place and the staff handled it perfectly.
“When you go into a place like this you realise how dedicated and professional the staff are - it’s a place that really deserves as much as we can give them. I would urge people to get behind Zoe’s Place, the more money it gets the better.”
This year the Wish campaign has £30,000 to give away - the more tokens the baby hospice collects the more money it will walk away with.
To support Zoe’s Place send your Wish tokens to: Zoe’s Place Baby Hospice, Crossbeck House, High Street, Normanby, Middlesbrough, TS6 9DA
18 September 2009
When disability is no barrier
ICT applications should consider handicapped users from the start,
Writer: Sasiwimon Boonruang
Nong Oay and Nong Note enjoy taking photos for visitors and editing them with the Photoshop program.
The Mattayom 1 student cannot articulate, but she is able to communicate with teachers and friends with a picture notebook and the Talking Switch speech assistive equipment, which helps her to partake in activities in the classroom.
Beside Nong Kob, at the United Nation building recently, was fellow wheelchair user Nong Oay, who has weak bones due to the inherited disorder of collagen synthesis, and Nong Note, who suffers muscle weakness.
All are students at Srisangwal School who today enjoy using not only the assistive technology, developed by the National Electronics and Computer Technology Centre (Nectec), but also computer programs such as Photoshop.
Visitors and delegates at the "ITU Asia-Pacific Regional Forum on mainstreaming ICT Accessibility for Persons with Disabilities" recently witnessed the students' capabilities in decorating and editing snaps.
"I didn't think I would look so good in the photo, thank you!" said one visitor, chuckling over a picture and inserting a 100-baht banknote into the donation box.
One woman who had Nong Kob take her photo and decorate it with a yellow butterfly was surprised when she received the photo and said even able-bodied adults could not produce such a high quality of work.
"How old are you?" she asked Nong Kob, who answered "11" on the computer screen.
These are technologies that help bridge the gap between people with disabilities (PWDs) and those without.
However, exposure to ICT for PWDs has been limited in some aspects.
Sawang Srisom, officer of Disabled Peoples' International Asia Pacific, noted that technology has progressively developed but there is still a conflict between demand and supply.
It will help, at least in the short term, if the government puts measures in place to enable PWDs to buy equipment at a lower price. In the long term, the state should have a policy for PWD employment.
In the workplace, he said, employers should install technology such as speech synthesis software for the visually impaired, or special mice designed for physically disabled people.
Sawang further encourages the introduction of closed caption or sign language options on television, adding that this would be useful not only to deaf people but also anyone trying to watch TV in a noisy environment.
Furthermore, Shadi Abou-Zahra, W3C web accessibility specialist, said graphical images on the internet are not suitable for sight-impaired people. They might be able to use screen readers for the text but the graphical information can not be output automatically. Video online will become more widely available, but captioning is rare.
If the website cannot be navigated by keyboard, PWDs may use a special mouse to do so. But the majority of websites have not been designed with the principles of accessibility and are therefore difficult for PWDs to use.
In order for the web to become truly accessible to all, it had to be coded properly, said Shadi.
The specialist noted that W3C has developed a technical standard for the web to adopt internationally recognised guidelines.
"The biggest challenge is not technology, but awareness-raising," he said, adding that people who develop websites typically don't consider the requirements of PWDs.
Training the developers, policy makers and decision makers is very important because they have to work together.
The issue of ICT accessibility for PWDs has significantly raised awareness.
Thailand recently hosted the first forum to be staged in the Pacific region.
In the knowledge-driven information age and society, it is timely to design and implement an inclusive ICT policy to provide digital opportunities to PWDs, according to Dr Eun-Ju Kim, head of the ITU Regional Office for Asia and the Pacific.
Citing the World Health Organisation, Kim said 10 percent of the world's population - or about 650 million people - have some form of disability, with the number increasing every year due to various factors such as war, natural disasters, unhealthy living conditions, and the absence of knowledge about disabilities and how to manage them.
In Thailand, there are around 1.9 million PWDs, or 2.9% of the population, many of whom encounter barriers when using ICT products and services.
Dr Eun-Ju Kim says the industry should have more R&D to come up with the right design products and services for disabled people.
ICT accessibility has been practiced to a very limited extent. Existing ICT products and services were not designed with principles of accessibility in mind and are therefore difficult for PWDs to use. The most obvious example is web accessibility.
"It costs dramatically less to implement web accessibility at the design stage than to retrofit it later," said Kim.
"Thus, it is worth emphasising the important roles of not only policy-makers and regulators but also industries, which can contribute not only to appropriate designs but also to affordable ICT products and services for PWD, taking into account the potential markets in the aged society."
The ITU Regional head urged that it is time to present PWDs with digital opportunities through ICT inclusive policy and regulations such as code of conducts in the information society so that assistive technologies, devices and applications specifically designed for PwD can be accessible and affordable to use.
She pointed out the ITU program of "Building the Capacity of Harnessing ICT for Disempowered/Marginalised Communities in Sri Lanka" from which representatives came to Thailand to exchange experiences.
They feel Thailand enjoys far more advanced technology in ICT applications and for PWDs and when they go back to Sri Lanka they can raise awareness of the issue to encourage more and better technology and applications available for their disabled people.
"I want to continue this kind of exchange program in the future as part of this project," said Kim.
"Next year, the program may be carried out with Mongolia and another countries."
Her Royal Highness Princess Maha Chakri Sirindhorn, who Kim said is a leader in the field, and who is also the one of ITU patrons, is supporting ICT in a wide range.
However, she said this is not the end, but just a beginning which still requires a lot of work to ensure equal access for all to ICT.
Kim is encouraging the industry to focus more on research and development to come up with right design products and services for PWDs to help them enjoy as full a life as possible.
Significantly, she said, many developed countries such as Japan and around Europe are seeing a rapid increase in population age, so their ICT industries are adapting to support the socio-economic needs of a growing and ageing demographic, including the different forms of disabilities that accompany the trend, such as the loss or reduction of dexterity and senses.
A decade from now, it is envisioned that these countries will have adapted so that their entire populations should be able to benefit from ICT, regardless of disabilities.
"I want to use this momentum to raise awareness for the industry, operators, and regulators," said Kim, adding that ITU will deliver appropriate training to various stakeholders, including policy makers, regulators and others interested in mainstreaming, developing and implementing ICT accessibility issues for PWDs at national, sub-regional and regional levels, and will continue implementing projects through close collaboration with various partners such as the ICT Ministry, Nectec and the National Telecommunications Commission, and others.
According to Axel Leblois, executive director, Global Initiative for Inclusive ICTs (G3ict), ICT has become a significant factor for economic and social development in all countries around the world. People's ability to use mainstream ICT applications and devices directly affects their ability to fully participate in education, employment, culture and leisure, civic or social activities.
Television, mobile phones, radios, computers, websites and multiple automated digital interfaces are used every day by billions of persons to communicate, access information in their jobs, at school, at home or to interact with government services or e-commerce.
The pervasive usage of ICTs in all aspects of society around the world thus creates a significant risk of exclusion if ICT is not accessible to PWDs.
For Thailand, the government which has ratified the UN CRPD (Convention on the Rights of People with Disabilities) is working on implementation by establishing learning centres nationwide that include assistive technologies such as braille printers and digital talking books for use by the visually impaired. There are also plans to use closed captioning for television programming to promote use by hearing-impaired users.
Writer: Sasiwimon Boonruang
Nong Oay and Nong Note enjoy taking photos for visitors and editing them with the Photoshop program.
The Mattayom 1 student cannot articulate, but she is able to communicate with teachers and friends with a picture notebook and the Talking Switch speech assistive equipment, which helps her to partake in activities in the classroom.
Beside Nong Kob, at the United Nation building recently, was fellow wheelchair user Nong Oay, who has weak bones due to the inherited disorder of collagen synthesis, and Nong Note, who suffers muscle weakness.
All are students at Srisangwal School who today enjoy using not only the assistive technology, developed by the National Electronics and Computer Technology Centre (Nectec), but also computer programs such as Photoshop.
Visitors and delegates at the "ITU Asia-Pacific Regional Forum on mainstreaming ICT Accessibility for Persons with Disabilities" recently witnessed the students' capabilities in decorating and editing snaps.
"I didn't think I would look so good in the photo, thank you!" said one visitor, chuckling over a picture and inserting a 100-baht banknote into the donation box.
One woman who had Nong Kob take her photo and decorate it with a yellow butterfly was surprised when she received the photo and said even able-bodied adults could not produce such a high quality of work.
"How old are you?" she asked Nong Kob, who answered "11" on the computer screen.
These are technologies that help bridge the gap between people with disabilities (PWDs) and those without.
However, exposure to ICT for PWDs has been limited in some aspects.
Sawang Srisom, officer of Disabled Peoples' International Asia Pacific, noted that technology has progressively developed but there is still a conflict between demand and supply.
It will help, at least in the short term, if the government puts measures in place to enable PWDs to buy equipment at a lower price. In the long term, the state should have a policy for PWD employment.
In the workplace, he said, employers should install technology such as speech synthesis software for the visually impaired, or special mice designed for physically disabled people.
Sawang further encourages the introduction of closed caption or sign language options on television, adding that this would be useful not only to deaf people but also anyone trying to watch TV in a noisy environment.
Furthermore, Shadi Abou-Zahra, W3C web accessibility specialist, said graphical images on the internet are not suitable for sight-impaired people. They might be able to use screen readers for the text but the graphical information can not be output automatically. Video online will become more widely available, but captioning is rare.
If the website cannot be navigated by keyboard, PWDs may use a special mouse to do so. But the majority of websites have not been designed with the principles of accessibility and are therefore difficult for PWDs to use.
In order for the web to become truly accessible to all, it had to be coded properly, said Shadi.
The specialist noted that W3C has developed a technical standard for the web to adopt internationally recognised guidelines.
"The biggest challenge is not technology, but awareness-raising," he said, adding that people who develop websites typically don't consider the requirements of PWDs.
Training the developers, policy makers and decision makers is very important because they have to work together.
The issue of ICT accessibility for PWDs has significantly raised awareness.
Thailand recently hosted the first forum to be staged in the Pacific region.
In the knowledge-driven information age and society, it is timely to design and implement an inclusive ICT policy to provide digital opportunities to PWDs, according to Dr Eun-Ju Kim, head of the ITU Regional Office for Asia and the Pacific.
Citing the World Health Organisation, Kim said 10 percent of the world's population - or about 650 million people - have some form of disability, with the number increasing every year due to various factors such as war, natural disasters, unhealthy living conditions, and the absence of knowledge about disabilities and how to manage them.
In Thailand, there are around 1.9 million PWDs, or 2.9% of the population, many of whom encounter barriers when using ICT products and services.
Dr Eun-Ju Kim says the industry should have more R&D to come up with the right design products and services for disabled people.
ICT accessibility has been practiced to a very limited extent. Existing ICT products and services were not designed with principles of accessibility in mind and are therefore difficult for PWDs to use. The most obvious example is web accessibility.
"It costs dramatically less to implement web accessibility at the design stage than to retrofit it later," said Kim.
"Thus, it is worth emphasising the important roles of not only policy-makers and regulators but also industries, which can contribute not only to appropriate designs but also to affordable ICT products and services for PWD, taking into account the potential markets in the aged society."
The ITU Regional head urged that it is time to present PWDs with digital opportunities through ICT inclusive policy and regulations such as code of conducts in the information society so that assistive technologies, devices and applications specifically designed for PwD can be accessible and affordable to use.
She pointed out the ITU program of "Building the Capacity of Harnessing ICT for Disempowered/Marginalised Communities in Sri Lanka" from which representatives came to Thailand to exchange experiences.
They feel Thailand enjoys far more advanced technology in ICT applications and for PWDs and when they go back to Sri Lanka they can raise awareness of the issue to encourage more and better technology and applications available for their disabled people.
"I want to continue this kind of exchange program in the future as part of this project," said Kim.
"Next year, the program may be carried out with Mongolia and another countries."
Her Royal Highness Princess Maha Chakri Sirindhorn, who Kim said is a leader in the field, and who is also the one of ITU patrons, is supporting ICT in a wide range.
However, she said this is not the end, but just a beginning which still requires a lot of work to ensure equal access for all to ICT.
Kim is encouraging the industry to focus more on research and development to come up with right design products and services for PWDs to help them enjoy as full a life as possible.
Significantly, she said, many developed countries such as Japan and around Europe are seeing a rapid increase in population age, so their ICT industries are adapting to support the socio-economic needs of a growing and ageing demographic, including the different forms of disabilities that accompany the trend, such as the loss or reduction of dexterity and senses.
A decade from now, it is envisioned that these countries will have adapted so that their entire populations should be able to benefit from ICT, regardless of disabilities.
"I want to use this momentum to raise awareness for the industry, operators, and regulators," said Kim, adding that ITU will deliver appropriate training to various stakeholders, including policy makers, regulators and others interested in mainstreaming, developing and implementing ICT accessibility issues for PWDs at national, sub-regional and regional levels, and will continue implementing projects through close collaboration with various partners such as the ICT Ministry, Nectec and the National Telecommunications Commission, and others.
According to Axel Leblois, executive director, Global Initiative for Inclusive ICTs (G3ict), ICT has become a significant factor for economic and social development in all countries around the world. People's ability to use mainstream ICT applications and devices directly affects their ability to fully participate in education, employment, culture and leisure, civic or social activities.
Television, mobile phones, radios, computers, websites and multiple automated digital interfaces are used every day by billions of persons to communicate, access information in their jobs, at school, at home or to interact with government services or e-commerce.
The pervasive usage of ICTs in all aspects of society around the world thus creates a significant risk of exclusion if ICT is not accessible to PWDs.
For Thailand, the government which has ratified the UN CRPD (Convention on the Rights of People with Disabilities) is working on implementation by establishing learning centres nationwide that include assistive technologies such as braille printers and digital talking books for use by the visually impaired. There are also plans to use closed captioning for television programming to promote use by hearing-impaired users.
Medikidz comic heroes to help children understand diseases and treatment
Sam Lister
A team of comic-book superheroes living inside the human body is to be used to help children understand complex diseases affecting them or their parents and reduce fear surrounding treatment and side-effects.
A children’s medical publisher is to be launched this week in London, supported by leading paediatricians, celebrities and campaigners including Archbishop Desmond Tutu, to tackle poor understanding of disease among the young.
The project, called Medikidz, will provide a range of comic books explaining diseases such as leukaemia, scoliosis, asthma and epilepsy that affect children, as well as those prevalent in adults, such as breast cancer and depression. A national catering company has ordered 100,000 advance copies of a title on childhood obesity for distribution in UK schools.
The superheroes include characters based on the cardiovascular and gastrointestinal systems, the lungs, brain and skin and bone who take the reader on an adventure explaining their condition and the treatments they are likely to receive. Children will also be able to find out more from a website which will offer social networking to allow young patients to share their experiences.
The project, which will be launched at the Evelina Children’s Hospital at St Thomas’ Hospital on Wednesday, has been set up by two junior doctors frustrated by the lack of child-friendly information available. Backers include the musician Will.i.am from the Black Eyed Peas, Jacqueline Wilson, the children’s author, and Archbishop Tutu, who is due to address the launch.
The comic books are aimed at children between the ages of 8 and 15.
Kim Chilman-Blair, Medikidz founder, said that she had first noticed the problem while training in paediatrics at Otago Medical School in New Zealand. “I was looking after an eight-year old epileptic girl, and trying to explain her condition to her,” she said. “It was very difficult. I went and asked the consultant if there was any material that I could use, and there wasn’t anything. It started me thinking.
“When children fall ill they naturally look to adults for courage, comfort and explanation. In most cases these adults are unprepared and unqualified to deal with these situations and they have no useful information to give to young people to explain what is happening to them.”
Paediatricians said that they agreed that there was a paucity of engaging material for the young, with parents too often told of the problem and left to explain what was going on to their children. They said that being properly informed should be central to a child’s treatment.
Professor Ricky Richardson, a leading paediatrician and government adviser, said: “There is an enormous need to provide appropriate information about disease processes to children in a form they understand. Having this in comic book format and using social networking technology will be enormous step forward.”
Prof Richardson, who sees patients at Great Ormond Street Hospital for Children and Princess Margaret Hospital in Windsor, and is chair of the Medikidz medical advisory board, said.
“It moves the focus away from parents to children. The psychology of the relationship between parents and children can complicate things, because parents will naturally protect their children and may not pass on information to them. But in fact that child can gain much more from properly understanding where they are and what’s happening to them.”
Dr Chilman-Blair and Kate James, the company’s co-founder, said that the focus would also be on developing countries, with titles covering major paediatric diseases such as HIV/Aids and tuberculosis. Every book, which is designed by a former Marvel comic book writer, is subject to clinical peer review by paediatricians and specialist nurses.
Archbishop Tutu, a campaigner for health and human rights who has been particularly vocal in support of controlling TB and HIV, is known to be a keen supporter of the venture. He is scheduled to address the launch of the programme. He said: “It is extremely important that they feel reassured, informed and included during the diagnosis and treatment process, and this initiative should be supported for helping to achieve this,” he said.
A team of comic-book superheroes living inside the human body is to be used to help children understand complex diseases affecting them or their parents and reduce fear surrounding treatment and side-effects.
A children’s medical publisher is to be launched this week in London, supported by leading paediatricians, celebrities and campaigners including Archbishop Desmond Tutu, to tackle poor understanding of disease among the young.
The project, called Medikidz, will provide a range of comic books explaining diseases such as leukaemia, scoliosis, asthma and epilepsy that affect children, as well as those prevalent in adults, such as breast cancer and depression. A national catering company has ordered 100,000 advance copies of a title on childhood obesity for distribution in UK schools.
The superheroes include characters based on the cardiovascular and gastrointestinal systems, the lungs, brain and skin and bone who take the reader on an adventure explaining their condition and the treatments they are likely to receive. Children will also be able to find out more from a website which will offer social networking to allow young patients to share their experiences.
The project, which will be launched at the Evelina Children’s Hospital at St Thomas’ Hospital on Wednesday, has been set up by two junior doctors frustrated by the lack of child-friendly information available. Backers include the musician Will.i.am from the Black Eyed Peas, Jacqueline Wilson, the children’s author, and Archbishop Tutu, who is due to address the launch.
The comic books are aimed at children between the ages of 8 and 15.
Kim Chilman-Blair, Medikidz founder, said that she had first noticed the problem while training in paediatrics at Otago Medical School in New Zealand. “I was looking after an eight-year old epileptic girl, and trying to explain her condition to her,” she said. “It was very difficult. I went and asked the consultant if there was any material that I could use, and there wasn’t anything. It started me thinking.
“When children fall ill they naturally look to adults for courage, comfort and explanation. In most cases these adults are unprepared and unqualified to deal with these situations and they have no useful information to give to young people to explain what is happening to them.”
Paediatricians said that they agreed that there was a paucity of engaging material for the young, with parents too often told of the problem and left to explain what was going on to their children. They said that being properly informed should be central to a child’s treatment.
Professor Ricky Richardson, a leading paediatrician and government adviser, said: “There is an enormous need to provide appropriate information about disease processes to children in a form they understand. Having this in comic book format and using social networking technology will be enormous step forward.”
Prof Richardson, who sees patients at Great Ormond Street Hospital for Children and Princess Margaret Hospital in Windsor, and is chair of the Medikidz medical advisory board, said.
“It moves the focus away from parents to children. The psychology of the relationship between parents and children can complicate things, because parents will naturally protect their children and may not pass on information to them. But in fact that child can gain much more from properly understanding where they are and what’s happening to them.”
Dr Chilman-Blair and Kate James, the company’s co-founder, said that the focus would also be on developing countries, with titles covering major paediatric diseases such as HIV/Aids and tuberculosis. Every book, which is designed by a former Marvel comic book writer, is subject to clinical peer review by paediatricians and specialist nurses.
Archbishop Tutu, a campaigner for health and human rights who has been particularly vocal in support of controlling TB and HIV, is known to be a keen supporter of the venture. He is scheduled to address the launch of the programme. He said: “It is extremely important that they feel reassured, informed and included during the diagnosis and treatment process, and this initiative should be supported for helping to achieve this,” he said.
16 September 2009
Going Home believe it or not
Friday morning came and the nurses came to sort my bed out so I asked them if I was allowed to go in the shower, I had had a good night and was feeling great, the nurse said yes it's fine we will get some waterproof dressings and then you can go in. The nurse helped me but it was lovely just being back to me doing things and I thought to myself I wonder if I would be allowed home, although didn't say anything. After the shower I got my clothes on rather than my pjamas and sat in my wheelchair to have breakfast. Mum then called me to see how I was doing and said I had just been in the shower and managed fine.
Once everything in my room had beensorted I got out of my chair and went for a walk into the ward and to speak to the Sister on duty to see what the likelyhood was that I would be allowed home, she didn't see why not but it would be up to the man himself, and that he would be coming to see me at some point in the day. I knew with it being friday, he would have clinic and therefore could be around lunchtime.
I decided to go back to my room and get in my chair so that I could get around easier and go to the shops. The Dr who had been looking after me came to see me briefly to make sure everything was fine and it was. I then spend the rest of the time whizzing around in my chair.
It is sod's law that when you are waiting too see someone they never come, but the minute you go out they arrive. This is exactly what happened I had gone off the ward for a few minutes and Mr Papastefanou had been too see me and I missed him, or so I thought because as I was heading back he was coming towards me so we stopped and had a long discussion about how I was and how things would be over next few months etc. He asked if I had any questions so I asked would I be allowed to go home now ? if your not happy then I would stay over the weekend etc, but no he was as happy as I was, the x-ray looked good, and I had done everything he had asked me to do, so off you go with my blessing.
It was really an emotional moment for both of us, because he was leaving the country and going home to greece to work, but we both left on a very happy moment, and Mr Papastefanou, if you are reading this I would like to thank you for everything you have done for me, and I will keep my fighting spirit I promise!!!!!!!!
Safe Journey
Once everything in my room had beensorted I got out of my chair and went for a walk into the ward and to speak to the Sister on duty to see what the likelyhood was that I would be allowed home, she didn't see why not but it would be up to the man himself, and that he would be coming to see me at some point in the day. I knew with it being friday, he would have clinic and therefore could be around lunchtime.
I decided to go back to my room and get in my chair so that I could get around easier and go to the shops. The Dr who had been looking after me came to see me briefly to make sure everything was fine and it was. I then spend the rest of the time whizzing around in my chair.
It is sod's law that when you are waiting too see someone they never come, but the minute you go out they arrive. This is exactly what happened I had gone off the ward for a few minutes and Mr Papastefanou had been too see me and I missed him, or so I thought because as I was heading back he was coming towards me so we stopped and had a long discussion about how I was and how things would be over next few months etc. He asked if I had any questions so I asked would I be allowed to go home now ? if your not happy then I would stay over the weekend etc, but no he was as happy as I was, the x-ray looked good, and I had done everything he had asked me to do, so off you go with my blessing.
It was really an emotional moment for both of us, because he was leaving the country and going home to greece to work, but we both left on a very happy moment, and Mr Papastefanou, if you are reading this I would like to thank you for everything you have done for me, and I will keep my fighting spirit I promise!!!!!!!!
Safe Journey
14 September 2009
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13 September 2009
Getting up the following day
Well after a bit of a unsettled night all seemed ok I was able to get washed and ready, the Mr Papastefanou came to see me as promised to see how I was doing and also to arrange for me to go and have an x-ray during the day. I said that I was feeling good and happy to get up with the Physio's when they came around. Luckily I didn't have to wait long after before they came. I explained to the Physio that I had my own way of getting out of bed, and that I would try it and if I struggled then I would use there way, and she was happy with that, so I rolled into action being careful not to pull my stomach too much because it was sore. I then said that I hadnt walked too far since October last year, but wanted to see how far we got. As soon as I stood up it was a odd feeling, although I knew that I was going to be ok walking some. Off we went into the ward and I manged slowly to get to the nurses station, and the Physio said well your safe for home as far as im concerned. I thought she was joking but it seemed not.
Anyway her assitant brought my chair and it was nice to sit down, albeit a little painful, but as soon as I got settled I was free and back in my wheels, so I could move around the ward and go off the ward with permission if I wanted too, but I didnt stray too far, because I knew it was coffee time soon and I was waiting for x-ray. Coffee came and I enjoyed it because the lady gave me some biscuits and on talking to her, we realised that she was the tea lady on ward 44 at Middlesbrougfh General when I got my back done 6 years ago, and she remembered me.
After lunch I saw the porter and I knew I was going for my x-ray, he asked me if I would prefer to get on the trolley here or down in the department. I said here, so the nurse who had been looking after me came and helped me onto the trolley and we left my chair outside the room for when I came back. I remember as I was getting on to the trolley my head went back and the nurse said you do everything with that head, because she knew that I kind of move myself with my head sometimes, but she also knew that if I didnt control it back and it fell back it can cause extensor spasms so she quickly supported me and helped me move better onto the trolley. The reason she knew about the spasms was because she also looked after me during first back surgery. We were off it sort of felt good as not left the ward since Tuesday and although it had only been 2 days I had forgot what my surroundings were like.
The x-ray didn't take long although I was quite tired by this point and I couldn't wait to get back to the ward so that I could go to bed. When we got back to the ward the nurse on duty could see that I was tired and uncomfortable, and gave me the choice of my wheelchair or going to bed, "bed please I have had enough for today", so they got a pat-slide and moved me into my bed and it was heaven, just to lay down, and wait for family to visit
Anyway her assitant brought my chair and it was nice to sit down, albeit a little painful, but as soon as I got settled I was free and back in my wheels, so I could move around the ward and go off the ward with permission if I wanted too, but I didnt stray too far, because I knew it was coffee time soon and I was waiting for x-ray. Coffee came and I enjoyed it because the lady gave me some biscuits and on talking to her, we realised that she was the tea lady on ward 44 at Middlesbrougfh General when I got my back done 6 years ago, and she remembered me.
After lunch I saw the porter and I knew I was going for my x-ray, he asked me if I would prefer to get on the trolley here or down in the department. I said here, so the nurse who had been looking after me came and helped me onto the trolley and we left my chair outside the room for when I came back. I remember as I was getting on to the trolley my head went back and the nurse said you do everything with that head, because she knew that I kind of move myself with my head sometimes, but she also knew that if I didnt control it back and it fell back it can cause extensor spasms so she quickly supported me and helped me move better onto the trolley. The reason she knew about the spasms was because she also looked after me during first back surgery. We were off it sort of felt good as not left the ward since Tuesday and although it had only been 2 days I had forgot what my surroundings were like.
The x-ray didn't take long although I was quite tired by this point and I couldn't wait to get back to the ward so that I could go to bed. When we got back to the ward the nurse on duty could see that I was tired and uncomfortable, and gave me the choice of my wheelchair or going to bed, "bed please I have had enough for today", so they got a pat-slide and moved me into my bed and it was heaven, just to lay down, and wait for family to visit
12 September 2009
The morning of the surgery
The following morning I was up early and into the shower and then ready and waiting with my very fetching gown and green socks on for Mr Papastefanou so that we could have final discussions and to sign the consent form. The porter was waiting in the wings and I remember asking after the operation, when would I be able to get out of bed. The answer was later this afternoon if I so wished, I thought you cant be serious, but it was as serious as it got. I thought well if thats the case im ready if you are.
We were off and as I was nearing the holding room before being taken to the anesthetic room, the nerves started to niggle a bit, I dont know why because I am used to it after all the operations I have had, but there you go, I suppose you cant win them all. I entered the anesthetic room and after discussions about pain relief on waking I was sent off too sleep
The next thing I remember is waking up on my side in the recovery room, shaking from head to foot with cold, which then set off muscle spasms in my legs, the staff were making me as comfortable and as warm as possible with a heated blanket, to stop the shakes. I remember looking towards the door and my consultant was coming towards me and at that moment I knew that everything was going to be ok as I reached out for his hand, he smiled and stayed for a few minutes, before scrubbing up for the next operation.
After he went I remember laying there a bit longer and the pain was getting worse and I remember saying to the nurses, please can I be turned onto my back as its the only way to reduce the spasms, they said wait while we speak to him in theatre, phew the reply was that I was allowed to be turned and that he would see me in a few hours. the team of staff came and slowly turned me and take the hat device off me replacing them with blankets.
I cant remember the exact time I was back in my room, but I know it was in the afternoon about 3pm I know I had missed lunch, so my thoughts were I have been in there a while. The nurses on the ward all seemed to jump into action and it wasnt long before I was settled and sleeping it off, the nurse spoke to Mum and told her I was back and asleep, so she knew I was back safely.
I think it was about 4 and true to his word he came to see me and to check how I was doing, we talked for a while and I remember him saying if you want to get up later its fine with me, rest now I replied I will stay in bed till the morning and get up with the physiotherapist. He said thats fine with me you go at your own pace and I will check on you in the morning. I then went back to sleep for a bit happy in the knowledge that everything went ok. One thing that I was also pleased about was although I didnt feel that great in recovey I didnt have any morphine, because they know that it makes me so ill and sick for days. As a result I knew that I was going to be up and about soon. When I woke the nurse asked me what I would like to eat, I said im I ok to eat now "yes" ok I will have the pork with mushrooms casserole and roast potatoes with veg and although it was a bit hard with the drips in my hand I quite enjoyed it. After that I felt well enough to ring Mum myself and I knew that once she spoke to me she would be more settled and know that I was ok
We were off and as I was nearing the holding room before being taken to the anesthetic room, the nerves started to niggle a bit, I dont know why because I am used to it after all the operations I have had, but there you go, I suppose you cant win them all. I entered the anesthetic room and after discussions about pain relief on waking I was sent off too sleep
The next thing I remember is waking up on my side in the recovery room, shaking from head to foot with cold, which then set off muscle spasms in my legs, the staff were making me as comfortable and as warm as possible with a heated blanket, to stop the shakes. I remember looking towards the door and my consultant was coming towards me and at that moment I knew that everything was going to be ok as I reached out for his hand, he smiled and stayed for a few minutes, before scrubbing up for the next operation.
After he went I remember laying there a bit longer and the pain was getting worse and I remember saying to the nurses, please can I be turned onto my back as its the only way to reduce the spasms, they said wait while we speak to him in theatre, phew the reply was that I was allowed to be turned and that he would see me in a few hours. the team of staff came and slowly turned me and take the hat device off me replacing them with blankets.
I cant remember the exact time I was back in my room, but I know it was in the afternoon about 3pm I know I had missed lunch, so my thoughts were I have been in there a while. The nurses on the ward all seemed to jump into action and it wasnt long before I was settled and sleeping it off, the nurse spoke to Mum and told her I was back and asleep, so she knew I was back safely.
I think it was about 4 and true to his word he came to see me and to check how I was doing, we talked for a while and I remember him saying if you want to get up later its fine with me, rest now I replied I will stay in bed till the morning and get up with the physiotherapist. He said thats fine with me you go at your own pace and I will check on you in the morning. I then went back to sleep for a bit happy in the knowledge that everything went ok. One thing that I was also pleased about was although I didnt feel that great in recovey I didnt have any morphine, because they know that it makes me so ill and sick for days. As a result I knew that I was going to be up and about soon. When I woke the nurse asked me what I would like to eat, I said im I ok to eat now "yes" ok I will have the pork with mushrooms casserole and roast potatoes with veg and although it was a bit hard with the drips in my hand I quite enjoyed it. After that I felt well enough to ring Mum myself and I knew that once she spoke to me she would be more settled and know that I was ok
Artificial Disc Replaement Surgery
Well its a while since I have given you all an update on how my life is going, and thats because you may remember that I posted a bit ago that I was waiting for more spine surgery, well I have had the surgery and im back home safe, sound and doing well.
I went for my pre assessment and long discussions with my Spine Consultant Mr Papastefanou and we agreed to go ahead with the operation on the 19th August. The day was set and I had 2 weeks to get my head around what was going to be happening.
The 18th came and I made my way to the hospital to get admitted to the ward and complete the medical assesments that you usual go through the day before surgery. I have to admit that I was starting to feel a bit nervous, but not as nervous as I was going to be the next day. All the assesments went well and I have to say I was really impressed with my room, I got a room to myself so that I had plenty of space for my wheelchair and I had ensuite facilites so it felt like a hotel room. I was also impressed with the meals, in all the times I have been in hospitals I am never liked the meals and not really eaten much.
I went for my pre assessment and long discussions with my Spine Consultant Mr Papastefanou and we agreed to go ahead with the operation on the 19th August. The day was set and I had 2 weeks to get my head around what was going to be happening.
The 18th came and I made my way to the hospital to get admitted to the ward and complete the medical assesments that you usual go through the day before surgery. I have to admit that I was starting to feel a bit nervous, but not as nervous as I was going to be the next day. All the assesments went well and I have to say I was really impressed with my room, I got a room to myself so that I had plenty of space for my wheelchair and I had ensuite facilites so it felt like a hotel room. I was also impressed with the meals, in all the times I have been in hospitals I am never liked the meals and not really eaten much.
07 September 2009
Disabled sailor defies odds to complete solo voyage around Britain
• First quadriplegic female to accomplish feat
• Boat's direction controlled by blowing through straws
Caroline Davies The Guardian,
Paralysed from the neck down, Hilary Lister used advanced technology allowing her to steer and control the sails by sucking and blowing through plastic straws.
Having battled the elements, exhaustion and the severe limitations of her own body, Hilary Lister, 37, sailed into Dover and the record books today as the first female quadriplegic to sail solo around Britain.
The Oxford-educated biochemist, who suffers from a rare, progressive neurological disorder that has left her paralysed from the neck down, completed the final leg of a marathon voyage undertaken in a series of 40 day-long sails.
Using advanced technology allowing her to steer and control the sails by sucking and blowing through plastic straws, she sailed alone with a support team only helping her into and out of her boat, Me Too. After being briefly becalmed in the Channel last night, she finally crossed the finishing line to cheering crowds at 6.45pm.
"It's a privilege to be back in Dover," she said from her boat at the quayside. "The killer was when the wind died just east of the entrance to the harbour but unbelievably it picked up just as I sailed in."
She said the highlight of her challenge was seeing marine wildlife at close quarters. "Just seeing whales 35ft long fully breached out of the water was incredible," she said. "Two of them jumped like dolphins, it was amazing."
Lister, from Canterbury, Kent, suffers from reflex sympathetic dystrophy and can only move her head, eyes and mouth. Tempted in her darkest moments to end the physical pain she suffers daily and the frustration at being imprisoned in her body, she has said "sailing saved my life".
"I'm so relieved to be home but looking forward to the next challenge," she said before a bottle of celebratory champagne was opened. "One thing I've learnt is that you can't predict the future, we couldn't even predict tomorrow's weather so I'm not ruling anything out or anything in."
In 2005 she made history by becoming the first quadriplegic to sail solo across the Channel. Her voyage around Britain began in Dover in June last year when she sailed the length of the south coast. But she was forced to halt the attempt at Newlyn, Cornwall, last August due to weather and technical difficulties.
Plans to resume in Plymouth in early May were delayed after she suffered breathing difficulties while preparing. She was taken to hospital and placed under observation, but eventually set off at dawn on 21 May.
Since then she has attempted to sail on four days each week. The series of sails took her along the east coast of Ireland, and then down the east coast of Scotland and England. "In terms of experiences … we had some incredible receptions from people who had waited hours to watch us come in," she said as she arrived in Ramsgate ahead of the final 15-mile leg to Dover.
She added: "I'm probably fitter than when I left and almost certainly in better health. Sailing makes me happy, it gives me a reason to get up in the morning – but at the same time I am absolutely kippered."
She experienced the first signs of disease as shooting pains in her legs as a teenager. Determined to be a biochemist, she pressed on to study at Jesus College, Oxford.
But the disease did eventually deprive her of an academic career, as well as a secondary career as a clarinet teacher.
By the time she married her husband, Clifford, in 1999 she had begun to lose the use of her hands and arms.
Confined to her house and a wheelchair, she was introduced to sailing by a friend in 2003.
Her "sip and puff" system uses three straws that are connected to sensitive pressure switches to change the boat's direction, control the sails and the boom.
She hopes to have raised £30,000 from her voyage for her charity, Hilary's Dream Trust, which assists disabled and disadvantaged adults who want to sail.
Sip and puff control
This is the first time the "sip and puff" system had been tested in such challenging conditions, according to Lister's team. Her boat, Me Too, is an Artemis 20: a six-metre carbon fibre keelboat, designed by Rogers Yacht Design under commission by Chichester-based Vizual Marine.
She controls the boat using the "sip and puff" system, developed by Steve Alvey of Calgary, Canada.
The system uses three straws which are connected to sensitive pressure switches. A computer is mounted in front of Hilary.
A gentle sip on one straw will cause the boat to go to starboard, while a puff will take the boat to port. The second straw controls the winch motor for both sails in a similar fashion. The third straw allows her to control her Raymarine autopilot, to trim one sail relative to the other and raise or lower the height of the boom.
• Boat's direction controlled by blowing through straws
Caroline Davies The Guardian,
Paralysed from the neck down, Hilary Lister used advanced technology allowing her to steer and control the sails by sucking and blowing through plastic straws.
Having battled the elements, exhaustion and the severe limitations of her own body, Hilary Lister, 37, sailed into Dover and the record books today as the first female quadriplegic to sail solo around Britain.
The Oxford-educated biochemist, who suffers from a rare, progressive neurological disorder that has left her paralysed from the neck down, completed the final leg of a marathon voyage undertaken in a series of 40 day-long sails.
Using advanced technology allowing her to steer and control the sails by sucking and blowing through plastic straws, she sailed alone with a support team only helping her into and out of her boat, Me Too. After being briefly becalmed in the Channel last night, she finally crossed the finishing line to cheering crowds at 6.45pm.
"It's a privilege to be back in Dover," she said from her boat at the quayside. "The killer was when the wind died just east of the entrance to the harbour but unbelievably it picked up just as I sailed in."
She said the highlight of her challenge was seeing marine wildlife at close quarters. "Just seeing whales 35ft long fully breached out of the water was incredible," she said. "Two of them jumped like dolphins, it was amazing."
Lister, from Canterbury, Kent, suffers from reflex sympathetic dystrophy and can only move her head, eyes and mouth. Tempted in her darkest moments to end the physical pain she suffers daily and the frustration at being imprisoned in her body, she has said "sailing saved my life".
"I'm so relieved to be home but looking forward to the next challenge," she said before a bottle of celebratory champagne was opened. "One thing I've learnt is that you can't predict the future, we couldn't even predict tomorrow's weather so I'm not ruling anything out or anything in."
In 2005 she made history by becoming the first quadriplegic to sail solo across the Channel. Her voyage around Britain began in Dover in June last year when she sailed the length of the south coast. But she was forced to halt the attempt at Newlyn, Cornwall, last August due to weather and technical difficulties.
Plans to resume in Plymouth in early May were delayed after she suffered breathing difficulties while preparing. She was taken to hospital and placed under observation, but eventually set off at dawn on 21 May.
Since then she has attempted to sail on four days each week. The series of sails took her along the east coast of Ireland, and then down the east coast of Scotland and England. "In terms of experiences … we had some incredible receptions from people who had waited hours to watch us come in," she said as she arrived in Ramsgate ahead of the final 15-mile leg to Dover.
She added: "I'm probably fitter than when I left and almost certainly in better health. Sailing makes me happy, it gives me a reason to get up in the morning – but at the same time I am absolutely kippered."
She experienced the first signs of disease as shooting pains in her legs as a teenager. Determined to be a biochemist, she pressed on to study at Jesus College, Oxford.
But the disease did eventually deprive her of an academic career, as well as a secondary career as a clarinet teacher.
By the time she married her husband, Clifford, in 1999 she had begun to lose the use of her hands and arms.
Confined to her house and a wheelchair, she was introduced to sailing by a friend in 2003.
Her "sip and puff" system uses three straws that are connected to sensitive pressure switches to change the boat's direction, control the sails and the boom.
She hopes to have raised £30,000 from her voyage for her charity, Hilary's Dream Trust, which assists disabled and disadvantaged adults who want to sail.
Sip and puff control
This is the first time the "sip and puff" system had been tested in such challenging conditions, according to Lister's team. Her boat, Me Too, is an Artemis 20: a six-metre carbon fibre keelboat, designed by Rogers Yacht Design under commission by Chichester-based Vizual Marine.
She controls the boat using the "sip and puff" system, developed by Steve Alvey of Calgary, Canada.
The system uses three straws which are connected to sensitive pressure switches. A computer is mounted in front of Hilary.
A gentle sip on one straw will cause the boat to go to starboard, while a puff will take the boat to port. The second straw controls the winch motor for both sails in a similar fashion. The third straw allows her to control her Raymarine autopilot, to trim one sail relative to the other and raise or lower the height of the boom.
Free wheeling
UD helps a 3-year-old with cerebral palsy get around -- while giving other kids hope
By RACHEL KIPP
The News Journal
It was late afternoon, close to dinnertime, and Julianne Harp was ready to leave the playground for home. But when Harp walked toward the exit, her 3-year-old son, Will, headed in the opposite direction, toward the sandbox.
"It's so nice to see him able to do typical age-appropriate behavior -- that outweighs your frustration at him for not listening," Harp said.
Harp clearly welcomes Will's little acts of defiance. Since he was born, there haven't been many times she has had to run after her preschooler.
Will has cerebral palsy and the neurological disorder has left him without much control of his arms and legs. Most of the time, he relies on adults to carry him or to push his stroller. Oftentimes, he sits on the sidelines while classmates at the University of Delaware's Early Learning Center race each other on tricycles.
But this summer is different. For the first time in his young life, Will is joining the chase.
With a turn of a joystick, Will zips around in a power chair custom-made by researchers at the University of Delaware. Using the chair, the brown-haired preschooler can travel in a pack of his classmates from the sandbox to the swingset and back. He no longer has to yell for friends to come to him, or bring up the rear because he had to wait for an adult's help. The research team taught him to drive, and they've been a constant presence over the past several months, watching how Will reacts to his newfound independence.
Will is at the center of a study of power mobility in young children. Researchers wondered if babies could use power chairs to move around obstacles. Now they are looking not just at mobility but at how the freedom of movement affects a child's ability to make friends and interact with the world.
"He's never been reprimanded, he's never acted out. He's the perfect student in class -- and it's horrible," said Cole Galloway, an associate professor at UD and one of the lead researchers. "There's a window right now at his age and if we don't get him mobile and social ... he's the perfect elementary school kid. He's the hidden kid."
Other researchers have conducted studies that involve children using robotic devices, but this work is unique because of the young age of the children and because it looks at the role mobility plays in developing a child's social skills and personality. Researchers hope their work could lead to young children whose immobility now hinders their social development to learning socialization skills to enable them to make friends so they are not behind their peers when they enter school.
The team at UD believes that starting young is essential because by the time a child enters kindergarten, there are fewer opportunities for unstructured play. Children don't usually start using power chairs until early elementary school; as toddlers and preschoolers, they often rely on adults to carry them from place to place. UD researchers are worried that, by age 6 or 7, children without mobility have already fallen behind in terms of learning to take risks and initiate the spontaneous interaction that is often so key to making friends.
"Will has developed tremendous focus and attention. What this helps him to do is engage in more cooperative play and to navigate his world," said Laura Morris, associate director of the Early Learning Center. "There are very few 3- and 4-year-olds who don't challenge the world in some way. That's how a child learns to take risks, how they learn to push limits and how they learn to get what they want through lots of different strategies. Will hasn't had the same kind of early opportunities to do that."
Taking it to the next level
When Galloway's team began studying power mobility in children, their work was confined to the lab and the Early Learning Center gym. There, researchers observed babies from 4 months to 15 months old as they drove power chairs with robotic brains and sensors to help them avoid walls and bumps.
To take the study to the next level, however, they had to introduce the obstacles of daily life.
"It's immensely different to be using this technology in a real community," Galloway said. "Now it's not just about the technology, it's about Will."
Will's family got involved in the research on the advice of Tracy Stoner, his physical therapist. Crawling, walking and getting in and out of different positions have always been a challenge for him, and Stoner thought he might be motivated if given the power to easily move on his own.
"He puts out so much energy when he's trying to walk; he's working so hard that he's just dripping with sweat trying to get where he's going," Stoner said. "I know he's working his little heart out. And one of the other reasons I saw Will as being a candidate for power mobility is if I have to work so hard to get 50 feet to a toy I want, if I'm so exhausted by the time I get there, I don't want to play anymore. It's sort of negative reinforcement: I won't move because it takes so much energy, and I hate walking because it's taking so much energy."
Will started working with the UD researchers when he was 2 1/2. First, he learned to drive what the team calls his rocket chair. Although the chair is one of the smallest power chairs available, it was too bulky for the classroom. Will could use it only in the Early Learning Center gym or outside on the playground.
In July, however, Will started using UD2, a power chair about the same height as his classmates' tricycles. A green and blue booster seat with a tray is attached to the robot, which has indoor/outdoor wheels and a wireless joystick. It has a robotic brain and sensors that researchers covered with a red foam swimming noodle because Will is adept enough to avoid obstacles on his own.
"It took him three months to learn to drive when he started," said Christina Ragonesi, a UD graduate student working on her doctorate in biomechanics and movement science who taught Will to drive the power chair. "The coolest part of the training was when he learned to drive away. I'd say it was time to leave the gym and he would drive away from me. It showed Will was learning to make his own decisions."
Learning to drive
Before Will began using UD2, researchers filmed him during class to see what his life was like without the power chair. It was business as usual at the Early Learning Center, a day care facility that does double duty as a living laboratory.
"He would just sit, he had to rely on teachers to move him from Point A to Point B," Ragonesi said. "He couldn't really make his own decisions unless he called a teacher over."
The power chair is only one of the devices that Will uses to get around. The researchers, his physical therapist and his parents agree that he needs to spend time each day using technology like a gait trainer that gives him the support he needs to walk.
"He needs both. He can't just have all the power and he needs to learn standing and he needs to use the gait trainer," Stoner said. "He needs to have options for both so he has time to learn and time to explore and time to walk and transition within tight spaces. Right now, no matter how small the robot is, there are places where it can't go so he needs to learn to walk."
When the researchers started training Will, they thought he would "just take off," after learning to drive the chair, Galloway said. That didn't happen. Soon after he started using the device, a group of classmates started a game of hide-and-seek. Will was "it," but after counting to 10 while the other children found hiding places, he didn't move.
"Just because Will understood how to drive in the halls didn't mean he knew how to use his mobility to play a game like hide-and-seek. He could tell you the rules of hide-and-seek but he couldn't use his mobility to interact and know that if I'm going to come seek you, I have to use the power chair to do that," Galloway said. "Even though he knew how to drive, even with the robot in class, it's taking some intervention for him to learn how to go and follow a group to a next activity."
Gradually, Will is getting used to the new circumstances. Recently, he donned a policeman's costume and drove around the classroom pretending his chair was a cruiser. He figured out the chair had enough bulk to push the classroom bookshelves along the floor. The little boy's classmates helped out by moving chairs or toys out of the way of the power chair.
While using UD2 on the playground last week, he was initially more interested in handing Ragonesi shovelfuls of sand from his pail and drawing on his tray table with sidewalk chalk than moving around.
"What color is this?" Ragonesi asked as she helped him draw a star on the tray with lilac-colored chalk.
"Purple," Will replied.
Then Will decided he wanted to drive under the playset. He careened toward the slide. His friends, twins Alexis and Arianna Mayle, ran over. Will shared the sand pail with the girls and the three wandered away together chattering, as Ragonesi shouted after Will to stay off the grass.
"I like to see this," Ragonesi said. "He never used to initiate anything."
The team studied Will's use of the power chair for 19 days. They filmed him for two hours a day and documented how many minutes he spent at each activity and how many minutes he spent interacting with other children and adults. A computer inside the chair provided raw data about Will's movements. Last week, the team was preparing to take the power chair away for three days to see how Will reacted to losing the mobility.
"If he cries and asks for it, we're going to give it to him the minute he cries," Ragonesi said. "After this week, we'll give him the robot from now on. We'll step out of the picture."
Selling the chair
Typically, children with physical disabilities don't start using manual wheelchairs or power chairs until they're about 2 years old, said Dr. Timothy J. Brei, a developmental pediatrician at the Riley Hospital for Children in Indianapolis and medical director for the Spina Bifida Association, an advocacy group. Brei said most children start out using manual chairs.
"Power mobility is very expensive and you want to make sure you give it to someone who can really effectively use it," Brei said.
Although many in the medical community believe that mobility has some bearing on other aspects of a child's development, Brei isn't aware of any studies that document the connection.
"A child at preschool age is learning about who they are separate from their parents and they're learning social skills, interacting with their peers, playing or turn taking," Brei said. "But are they also learning something about who they are and their own sense of self-competence or self-worth or self-esteem? I think that may be as valuable as any just flat-out ability to navigate their environment or cognitive learning or social skills learning."
For the UD researchers to move forward with their work, they need to get power chairs into the lives of other children with physical disabilities.
Galloway gets a call about every two weeks from families who read about his work and want to get their children involved. But the team needs additional funding to expand. Ideally, they hope to form partnerships within the business world and commercialize the power chairs.
UD2 was developed by Sunil Agrawal, a mechanical engineering professor. His group ordered the pieces of the chair, assembled it and then wrote a software program so the device could be used for power mobility. The challenge they face is developing commercially available chairs that have the same technology as Will's but can be sold at a relatively low cost. Each robot costs between $15,000 and $20,000; the researchers want to develop a chair that could be purchased for $1,000 to $2,000.
The team submitted a grant proposal to the National Institutes of Health that would fund the production of 16 power chairs -- half would be similar to Will's and the other half would be tweaked so the researchers could study add-ons. If several dozen families living in Delaware or across the country started using the chairs, Galloway said, their experiences using the devices in different environments would help the researchers continue to perfect the technology and explore mobility's connection to social development.
"We want you to see UD3 in local grocery stores, in churches and synagogues, in ballparks," Galloway said. "That's in line with our research. That's what pushes us to the next level. This kind of project, it's not just research, it's advocacy, it's policy."
The research is also focused on early education, Galloway said. By the time Will is in elementary school, he said, sitting quiet and still becomes an asset rather than something adults discourage. If the little boy doesn't venture out of his comfort zone now, he may never learn to.
Expressing himself
The adults in Will's life say he's an easygoing, "go-with-the-flow" type. But that's not necessarily good.
"He's got to be the bad boy," Galloway explained. "Luckily, he has administrators and classroom teachers who understand that they need to work for the whole range of behaviors, that a tantrum is part of normal development."
"The other piece is trying to be very careful not to turn Will into something he's not," Morris said. "This is about giving him opportunities to explore his world and being able to step back and see how he does that."
Will uses the power chairs only at school. When he wants something at his home in Newark, the little boy uses a tactic he calls "being a caterpillar:" He army crawls to get what he wants. Galloway helped his parents secure a power chair for a recent family trip to Disney World, and it was often Will who announced, "I know how to do it!" and figured out how to maneuver the device through doorways or tight spaces.
"I don't know if it's the chair or it's his age, but he's starting to express himself more," Harp said. "He'll say, 'I want that,' or 'You stole my toy.' He's much more vocal about what he wants and what he doesn't. On the downside, because he can move from one place to another, his attention span, for one thing, has become less."
While on the playground with Ragonesi last week, Will urged, "Let's go!" when she paused to talk to another adult. Without being prompted, he turned back to retrieve a forgotten sand pail. Paul Urbaniak, another of Will's classmates, grabbed the chair's joystick and Will inched a few feet forward. The little boy didn't appear to mind, but Will's teachers reminded both boys that Paul needs to ask permission before operating Will's chair.
Lately, the researchers and Will's teachers are starting to talk about how to react if Will begins using the chair to break the rules.
"We call him the 13th kid. There are 13 kids in his class, but if he's not mobile, there are 12," Galloway said. "You give him mobility and the teachers say, 'Oh no, you just gave us a new kid.' "
--------------------------------------------------------------------------------
By RACHEL KIPP
The News Journal
It was late afternoon, close to dinnertime, and Julianne Harp was ready to leave the playground for home. But when Harp walked toward the exit, her 3-year-old son, Will, headed in the opposite direction, toward the sandbox.
"It's so nice to see him able to do typical age-appropriate behavior -- that outweighs your frustration at him for not listening," Harp said.
Harp clearly welcomes Will's little acts of defiance. Since he was born, there haven't been many times she has had to run after her preschooler.
Will has cerebral palsy and the neurological disorder has left him without much control of his arms and legs. Most of the time, he relies on adults to carry him or to push his stroller. Oftentimes, he sits on the sidelines while classmates at the University of Delaware's Early Learning Center race each other on tricycles.
But this summer is different. For the first time in his young life, Will is joining the chase.
With a turn of a joystick, Will zips around in a power chair custom-made by researchers at the University of Delaware. Using the chair, the brown-haired preschooler can travel in a pack of his classmates from the sandbox to the swingset and back. He no longer has to yell for friends to come to him, or bring up the rear because he had to wait for an adult's help. The research team taught him to drive, and they've been a constant presence over the past several months, watching how Will reacts to his newfound independence.
Will is at the center of a study of power mobility in young children. Researchers wondered if babies could use power chairs to move around obstacles. Now they are looking not just at mobility but at how the freedom of movement affects a child's ability to make friends and interact with the world.
"He's never been reprimanded, he's never acted out. He's the perfect student in class -- and it's horrible," said Cole Galloway, an associate professor at UD and one of the lead researchers. "There's a window right now at his age and if we don't get him mobile and social ... he's the perfect elementary school kid. He's the hidden kid."
Other researchers have conducted studies that involve children using robotic devices, but this work is unique because of the young age of the children and because it looks at the role mobility plays in developing a child's social skills and personality. Researchers hope their work could lead to young children whose immobility now hinders their social development to learning socialization skills to enable them to make friends so they are not behind their peers when they enter school.
The team at UD believes that starting young is essential because by the time a child enters kindergarten, there are fewer opportunities for unstructured play. Children don't usually start using power chairs until early elementary school; as toddlers and preschoolers, they often rely on adults to carry them from place to place. UD researchers are worried that, by age 6 or 7, children without mobility have already fallen behind in terms of learning to take risks and initiate the spontaneous interaction that is often so key to making friends.
"Will has developed tremendous focus and attention. What this helps him to do is engage in more cooperative play and to navigate his world," said Laura Morris, associate director of the Early Learning Center. "There are very few 3- and 4-year-olds who don't challenge the world in some way. That's how a child learns to take risks, how they learn to push limits and how they learn to get what they want through lots of different strategies. Will hasn't had the same kind of early opportunities to do that."
Taking it to the next level
When Galloway's team began studying power mobility in children, their work was confined to the lab and the Early Learning Center gym. There, researchers observed babies from 4 months to 15 months old as they drove power chairs with robotic brains and sensors to help them avoid walls and bumps.
To take the study to the next level, however, they had to introduce the obstacles of daily life.
"It's immensely different to be using this technology in a real community," Galloway said. "Now it's not just about the technology, it's about Will."
Will's family got involved in the research on the advice of Tracy Stoner, his physical therapist. Crawling, walking and getting in and out of different positions have always been a challenge for him, and Stoner thought he might be motivated if given the power to easily move on his own.
"He puts out so much energy when he's trying to walk; he's working so hard that he's just dripping with sweat trying to get where he's going," Stoner said. "I know he's working his little heart out. And one of the other reasons I saw Will as being a candidate for power mobility is if I have to work so hard to get 50 feet to a toy I want, if I'm so exhausted by the time I get there, I don't want to play anymore. It's sort of negative reinforcement: I won't move because it takes so much energy, and I hate walking because it's taking so much energy."
Will started working with the UD researchers when he was 2 1/2. First, he learned to drive what the team calls his rocket chair. Although the chair is one of the smallest power chairs available, it was too bulky for the classroom. Will could use it only in the Early Learning Center gym or outside on the playground.
In July, however, Will started using UD2, a power chair about the same height as his classmates' tricycles. A green and blue booster seat with a tray is attached to the robot, which has indoor/outdoor wheels and a wireless joystick. It has a robotic brain and sensors that researchers covered with a red foam swimming noodle because Will is adept enough to avoid obstacles on his own.
"It took him three months to learn to drive when he started," said Christina Ragonesi, a UD graduate student working on her doctorate in biomechanics and movement science who taught Will to drive the power chair. "The coolest part of the training was when he learned to drive away. I'd say it was time to leave the gym and he would drive away from me. It showed Will was learning to make his own decisions."
Learning to drive
Before Will began using UD2, researchers filmed him during class to see what his life was like without the power chair. It was business as usual at the Early Learning Center, a day care facility that does double duty as a living laboratory.
"He would just sit, he had to rely on teachers to move him from Point A to Point B," Ragonesi said. "He couldn't really make his own decisions unless he called a teacher over."
The power chair is only one of the devices that Will uses to get around. The researchers, his physical therapist and his parents agree that he needs to spend time each day using technology like a gait trainer that gives him the support he needs to walk.
"He needs both. He can't just have all the power and he needs to learn standing and he needs to use the gait trainer," Stoner said. "He needs to have options for both so he has time to learn and time to explore and time to walk and transition within tight spaces. Right now, no matter how small the robot is, there are places where it can't go so he needs to learn to walk."
When the researchers started training Will, they thought he would "just take off," after learning to drive the chair, Galloway said. That didn't happen. Soon after he started using the device, a group of classmates started a game of hide-and-seek. Will was "it," but after counting to 10 while the other children found hiding places, he didn't move.
"Just because Will understood how to drive in the halls didn't mean he knew how to use his mobility to play a game like hide-and-seek. He could tell you the rules of hide-and-seek but he couldn't use his mobility to interact and know that if I'm going to come seek you, I have to use the power chair to do that," Galloway said. "Even though he knew how to drive, even with the robot in class, it's taking some intervention for him to learn how to go and follow a group to a next activity."
Gradually, Will is getting used to the new circumstances. Recently, he donned a policeman's costume and drove around the classroom pretending his chair was a cruiser. He figured out the chair had enough bulk to push the classroom bookshelves along the floor. The little boy's classmates helped out by moving chairs or toys out of the way of the power chair.
While using UD2 on the playground last week, he was initially more interested in handing Ragonesi shovelfuls of sand from his pail and drawing on his tray table with sidewalk chalk than moving around.
"What color is this?" Ragonesi asked as she helped him draw a star on the tray with lilac-colored chalk.
"Purple," Will replied.
Then Will decided he wanted to drive under the playset. He careened toward the slide. His friends, twins Alexis and Arianna Mayle, ran over. Will shared the sand pail with the girls and the three wandered away together chattering, as Ragonesi shouted after Will to stay off the grass.
"I like to see this," Ragonesi said. "He never used to initiate anything."
The team studied Will's use of the power chair for 19 days. They filmed him for two hours a day and documented how many minutes he spent at each activity and how many minutes he spent interacting with other children and adults. A computer inside the chair provided raw data about Will's movements. Last week, the team was preparing to take the power chair away for three days to see how Will reacted to losing the mobility.
"If he cries and asks for it, we're going to give it to him the minute he cries," Ragonesi said. "After this week, we'll give him the robot from now on. We'll step out of the picture."
Selling the chair
Typically, children with physical disabilities don't start using manual wheelchairs or power chairs until they're about 2 years old, said Dr. Timothy J. Brei, a developmental pediatrician at the Riley Hospital for Children in Indianapolis and medical director for the Spina Bifida Association, an advocacy group. Brei said most children start out using manual chairs.
"Power mobility is very expensive and you want to make sure you give it to someone who can really effectively use it," Brei said.
Although many in the medical community believe that mobility has some bearing on other aspects of a child's development, Brei isn't aware of any studies that document the connection.
"A child at preschool age is learning about who they are separate from their parents and they're learning social skills, interacting with their peers, playing or turn taking," Brei said. "But are they also learning something about who they are and their own sense of self-competence or self-worth or self-esteem? I think that may be as valuable as any just flat-out ability to navigate their environment or cognitive learning or social skills learning."
For the UD researchers to move forward with their work, they need to get power chairs into the lives of other children with physical disabilities.
Galloway gets a call about every two weeks from families who read about his work and want to get their children involved. But the team needs additional funding to expand. Ideally, they hope to form partnerships within the business world and commercialize the power chairs.
UD2 was developed by Sunil Agrawal, a mechanical engineering professor. His group ordered the pieces of the chair, assembled it and then wrote a software program so the device could be used for power mobility. The challenge they face is developing commercially available chairs that have the same technology as Will's but can be sold at a relatively low cost. Each robot costs between $15,000 and $20,000; the researchers want to develop a chair that could be purchased for $1,000 to $2,000.
The team submitted a grant proposal to the National Institutes of Health that would fund the production of 16 power chairs -- half would be similar to Will's and the other half would be tweaked so the researchers could study add-ons. If several dozen families living in Delaware or across the country started using the chairs, Galloway said, their experiences using the devices in different environments would help the researchers continue to perfect the technology and explore mobility's connection to social development.
"We want you to see UD3 in local grocery stores, in churches and synagogues, in ballparks," Galloway said. "That's in line with our research. That's what pushes us to the next level. This kind of project, it's not just research, it's advocacy, it's policy."
The research is also focused on early education, Galloway said. By the time Will is in elementary school, he said, sitting quiet and still becomes an asset rather than something adults discourage. If the little boy doesn't venture out of his comfort zone now, he may never learn to.
Expressing himself
The adults in Will's life say he's an easygoing, "go-with-the-flow" type. But that's not necessarily good.
"He's got to be the bad boy," Galloway explained. "Luckily, he has administrators and classroom teachers who understand that they need to work for the whole range of behaviors, that a tantrum is part of normal development."
"The other piece is trying to be very careful not to turn Will into something he's not," Morris said. "This is about giving him opportunities to explore his world and being able to step back and see how he does that."
Will uses the power chairs only at school. When he wants something at his home in Newark, the little boy uses a tactic he calls "being a caterpillar:" He army crawls to get what he wants. Galloway helped his parents secure a power chair for a recent family trip to Disney World, and it was often Will who announced, "I know how to do it!" and figured out how to maneuver the device through doorways or tight spaces.
"I don't know if it's the chair or it's his age, but he's starting to express himself more," Harp said. "He'll say, 'I want that,' or 'You stole my toy.' He's much more vocal about what he wants and what he doesn't. On the downside, because he can move from one place to another, his attention span, for one thing, has become less."
While on the playground with Ragonesi last week, Will urged, "Let's go!" when she paused to talk to another adult. Without being prompted, he turned back to retrieve a forgotten sand pail. Paul Urbaniak, another of Will's classmates, grabbed the chair's joystick and Will inched a few feet forward. The little boy didn't appear to mind, but Will's teachers reminded both boys that Paul needs to ask permission before operating Will's chair.
Lately, the researchers and Will's teachers are starting to talk about how to react if Will begins using the chair to break the rules.
"We call him the 13th kid. There are 13 kids in his class, but if he's not mobile, there are 12," Galloway said. "You give him mobility and the teachers say, 'Oh no, you just gave us a new kid.' "
--------------------------------------------------------------------------------
05 September 2009
New stretching technique debuts in valley
Active Isolated Stretching has had impact across nation
Stretching has long been considered an important part of maintaining a limber and healthy body. However, most men and women, whether they are pro athletes or an average exerciser, neglect stretching. In addition, how one should stretch is a constantly changing issue.
Working thousands of hours to develop a foolproof stretching method, Aaron Mattes, a registered kinesiotherapist and a licensed massage therapist, created Active Isolated Stretching, or AIS.
"I heard about Aaron through a friend of mine who had tennis elbow," said Sun Valley resident Kiril Sokoloff. "I was told Koby Bryant goes to Aaron after every game for four hours."
Sokoloff said Mattes is an extraordinary physical therapist and has a passion for healing. Mattes' method is used by professional and top athletes, and has been adopted by physical therapists and trainers at Zenergy at Thunder Spring.
"It is active isolated stretching, which is very focused on breathing," said AIS-certified therapist Winston Purkiss. "It is a short stretch hold of no more than two seconds. This is the most effective stretching method ever introduced to me."
Purkiss said Mattes is based in Florida and his AIS method came to Sun Valley because of Sokoloff.
"The method has received a research grant by the National Institutes of Health," said Purkiss. "My wife had a stroke and was unable to use her right arm. Sokoloff flew her to Florida to meet Aaron and she was able to drink from a glass. It is not a miracle cure, but it is a method that continues to be effective."
The AIS method is about movement. Mattes created stretches for people to do alone and with a therapist. The AIS method is in a book for $35 available at Mattes' Web site, stretchingusa.com. In addition, Mattes has a variety of inexpensive materials and stretching apparatus available on the Web site.
"You feel more energy through this method of stretching because of the oxygen going through the body to the tissues,; Purkiss said.; AIS helps Parkinson's disease patients, people who are wheelchair bound, stroke patients, people with bunion problems, people with cerebral palsy and those who have had replacement surgery for hips and knees."
Sokoloff is working on bringing Mattes to Sun Valley next June to expose more people to AIS and to do a full training seminar presented by Zenergy.
Lots of people in the valley do a lot of running, biking and a great deal of exercise and need to stretch properly," Sokoloff said. "My wife is pregnant, and she has been doing AIS and has not had any pain. We plan to have work done on our baby too. I believe in AIS. Young children can advance mentally and physically with stretching."
Valley resident Pat Schott, 45, is a full-time painter and avid cyclist. He said he was suffering from back pain and hamstring issues and was almost crippled when he ran into AIS therapist Diane Calvero. Calvero gave Schott AIS sessions at Zenergy, which sold him on the benefits of stretching.
Schott enjoys cyclocross racing and mountain biking; during cyclocross season he is racing every weekend. He said he is up and down ladders all day and the combination of his job and cycling does not do well for the body.
"It's the same breathing as yoga but different," Schott said. "AIS is quick and the results are immediate. I highly recommend AIS."
Appointments for AIS sessions can by made at Zenergy. They cost $85 for members and $100 for non-members. To make an appointment, call Personal Services Manager Mollie Holt at 725-0595, ext. 124.
Stretching has long been considered an important part of maintaining a limber and healthy body. However, most men and women, whether they are pro athletes or an average exerciser, neglect stretching. In addition, how one should stretch is a constantly changing issue.
Working thousands of hours to develop a foolproof stretching method, Aaron Mattes, a registered kinesiotherapist and a licensed massage therapist, created Active Isolated Stretching, or AIS.
"I heard about Aaron through a friend of mine who had tennis elbow," said Sun Valley resident Kiril Sokoloff. "I was told Koby Bryant goes to Aaron after every game for four hours."
Sokoloff said Mattes is an extraordinary physical therapist and has a passion for healing. Mattes' method is used by professional and top athletes, and has been adopted by physical therapists and trainers at Zenergy at Thunder Spring.
"It is active isolated stretching, which is very focused on breathing," said AIS-certified therapist Winston Purkiss. "It is a short stretch hold of no more than two seconds. This is the most effective stretching method ever introduced to me."
Purkiss said Mattes is based in Florida and his AIS method came to Sun Valley because of Sokoloff.
"The method has received a research grant by the National Institutes of Health," said Purkiss. "My wife had a stroke and was unable to use her right arm. Sokoloff flew her to Florida to meet Aaron and she was able to drink from a glass. It is not a miracle cure, but it is a method that continues to be effective."
The AIS method is about movement. Mattes created stretches for people to do alone and with a therapist. The AIS method is in a book for $35 available at Mattes' Web site, stretchingusa.com. In addition, Mattes has a variety of inexpensive materials and stretching apparatus available on the Web site.
"You feel more energy through this method of stretching because of the oxygen going through the body to the tissues,; Purkiss said.; AIS helps Parkinson's disease patients, people who are wheelchair bound, stroke patients, people with bunion problems, people with cerebral palsy and those who have had replacement surgery for hips and knees."
Sokoloff is working on bringing Mattes to Sun Valley next June to expose more people to AIS and to do a full training seminar presented by Zenergy.
Lots of people in the valley do a lot of running, biking and a great deal of exercise and need to stretch properly," Sokoloff said. "My wife is pregnant, and she has been doing AIS and has not had any pain. We plan to have work done on our baby too. I believe in AIS. Young children can advance mentally and physically with stretching."
Valley resident Pat Schott, 45, is a full-time painter and avid cyclist. He said he was suffering from back pain and hamstring issues and was almost crippled when he ran into AIS therapist Diane Calvero. Calvero gave Schott AIS sessions at Zenergy, which sold him on the benefits of stretching.
Schott enjoys cyclocross racing and mountain biking; during cyclocross season he is racing every weekend. He said he is up and down ladders all day and the combination of his job and cycling does not do well for the body.
"It's the same breathing as yoga but different," Schott said. "AIS is quick and the results are immediate. I highly recommend AIS."
Appointments for AIS sessions can by made at Zenergy. They cost $85 for members and $100 for non-members. To make an appointment, call Personal Services Manager Mollie Holt at 725-0595, ext. 124.
04 September 2009
He couldn't sit, now will walk
BANGALORE: Prateek (12) had developed a progressive sideward bending of the spine, and found it difficult to sit or walk.
A cerebral palsy patient, Prateek was diagnosed with neuromuscular scoliosis (sideward bending of the spine) of 100 degrees. He needed a galveston (spino-pelvic) fusion surgery, but as it is a rare surgery, involving high risk and expertise, the boy had to wait for two years for the right facility and surgeon. Finally, Manipal Hospital came to his rescue.
The surgery done by a team headed by Dr S Vidyadhara, consultant spine surgeon, lasted for eight hours. He was given six units of blood.
Now, two days after the operation, Prateek can sit straight. His post-operative radiograph shows all implants are in good position.
According to Dr Vidyadhara, cerebral palsy is quite common and affects one in a thousand children born of normal deliveries. It is the result of hypoxic damage to the brain during labour that causes muscular paralysis and results in neuro-muscular scoliosis.
Prateek's case was challenging because of the severity of the curve -- it was 100 degrees and rigid. Also, a side of the pelvis got lifted up on one side and due to which he lost balance while sitting. All this had to be corrected. He also faced risk of paraplegia (impairment in motor or sensory function of the lower extremities). The other challenges were increased surgical time and risk of blood loss, the doctor said.
Prateek can now move both his legs, and will be able to use a walker in two-three days once the operative pain is reasonably reduced.
A cerebral palsy patient, Prateek was diagnosed with neuromuscular scoliosis (sideward bending of the spine) of 100 degrees. He needed a galveston (spino-pelvic) fusion surgery, but as it is a rare surgery, involving high risk and expertise, the boy had to wait for two years for the right facility and surgeon. Finally, Manipal Hospital came to his rescue.
The surgery done by a team headed by Dr S Vidyadhara, consultant spine surgeon, lasted for eight hours. He was given six units of blood.
Now, two days after the operation, Prateek can sit straight. His post-operative radiograph shows all implants are in good position.
According to Dr Vidyadhara, cerebral palsy is quite common and affects one in a thousand children born of normal deliveries. It is the result of hypoxic damage to the brain during labour that causes muscular paralysis and results in neuro-muscular scoliosis.
Prateek's case was challenging because of the severity of the curve -- it was 100 degrees and rigid. Also, a side of the pelvis got lifted up on one side and due to which he lost balance while sitting. All this had to be corrected. He also faced risk of paraplegia (impairment in motor or sensory function of the lower extremities). The other challenges were increased surgical time and risk of blood loss, the doctor said.
Prateek can now move both his legs, and will be able to use a walker in two-three days once the operative pain is reasonably reduced.
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