Read about how people around the world live with Disability. Here you will read about our highs and lows in life,
28 December 2009
Yoga instructor takes scoliosis to the mat
Published Sunday, Dec. 27, 2009
To see Kim Wagaman on a yoga mat – her supple spine stretched, her limbs angled with apparent aplomb – is to witness a body perfectly aligned and in harmony with itself.
She's a yoga instructor, after all, so such flexibility is a given, right?
Not in her case. Wagaman, 34, who grew up in Carmichael and teaches classes at the Yoga Solution and elsewhere in Sacramento, once was so restricted by scoliosis that she spent most of her teenage years in a neck-high brace.
The curvature made her spine look like a winding country road, veering right in the upper thoracic region, swerving left in the lumbar area. She also had a smaller curve high in her neck and was showing the beginnings of kyphosis, a rounding of the shoulders.
"I made a conscious effort to hide the back of my body," Wagaman recalls. "I'd enter a room at a party and position myself with my back to the wall. There was all this insecurity and denial. And there's this drive to fix the issue."
In Wagaman's case, that drive put her on an unusual path to confronting the condition. Her parents already had ruled out spinal-fusion surgery as too invasive.
So as a junior in high school, Wagaman chose to send the cumbersome "Milwaukee" brace, which she had worn 23 hours a day, to the back of her closet and look for more promising alternatives.
For her, the better way turned out to be yoga. In her early 20s, Wagaman started practicing poses and movements with Jennifer Sadugar, founder of the Yoga Solution in east Sacramento. That led Wagaman to study under Palo Alto-based yoga master Elise Miller, the leading practitioner of yoga for people with scoliosis.
Over time, Wagaman found that tweaks to standard yoga poses – a change of hand positioning, a more pronounced shoulder twist, a deepening of breath – not only eased pain but strengthened muscles around the spine and led to better structural alignment.
The weight bearing down on her left leg no longer is heavier than on her right side. One hip no longer is higher. Wagaman has trained the right side of her rib cage to return to a standard position.
Her spinal curve hasn't gone away, of course, but Wagaman firmly believes her adherence to yoga has delayed further complications and has taken away whatever bodily limitations she had.
Now, with a 500-hour yoga teaching certificate, Wagaman offers Yoga for Scoliosis workshops. (The next four-week series starts Jan. 10 at the Yoga Solution.) A big part of the classes involves mastering variations on classic yoga poses, such as the downward-facing dog, the triangle and the puppy pose. But there also is an emotional component.
"A lot of us have the concept from our society and culture that we're deformed, not right as we are," she says. "We try to work through that. You have to accept that your practice is going to be different than others' in terms of poses and expressions.
"As your awareness becomes more finely tuned, you begin to sense where you are in space, feel more keenly what your body is doing."
Sacramentan Mary Lau, 54, who has had severe scoliosis since high school and suffers from rheumatoid arthritis, says taking Wagaman's classes over the past year has helped both conditions. She says the 51-degree curve in her back has improved by 8 degrees in a recent measurement.
"It really makes a difference," says Lau, a retired scientist with the state Environmental Protection Agency. "I have an S-shaped curve that pinches one of the nerves in the lumbar spine. So a lot of those stretching poses, like the puppy pose, will help my pain. Doing that for a few minutes will give me relief and put pressure off the nerve."
What might surprise some students, Wagaman says, is how subtle changes in the poses can ease pain.
Take the standard puppy pose, a spine-lengthening movement in which one begins on all fours with arms extended to the front and moves the buttocks toward the heels while dropping the forehead toward the mat.
"For scoliosis, I'll have people walk their hands over to the left and then draw the hips back and drop the right side down a little bit and breathe into the left side," Wagaman says.
The standard triangle pose differs more significantly. After spreading the legs, those with right thoracic scoliosis will steady their left arm on a chair and, instead of reaching up with their right arm to stretch, will bring their hand to the rib cage.
"You'll try to draw the ribs in toward the body," Wagaman says.
A downward-facing dog pose has the most subtle change. When arms are extended in mid-pose, you "swivel the right palm out to draw that side of the scapula (shoulder blade) in," Wagaman says. "It's sort of an 'aha' thing. Students with scoliosis will feel a lot more comfortable that way."
Comfort and healing, of course, are precisely what Wagaman's scoliosis patients seek.
"This yoga is the best form of pain management I've tried," Lau says.
YOGA FOR SCOLIOSIS
What: Instructor Kim Wagaman will lead a four-week Sunday series on Yoga for Scoliosis
When: 11 a.m.-1 p.m. Jan. 10 to Feb. 7 (no class Jan. 17)
Where: The Yoga Solution, 887 57th St., Sacramento
Cost: $70 by Dec. 30, $80 thereafter
Information: (916) 383-7933
For information on other classes Wagaman teaches: www.yogaquest.wordpress.com.
Wish Book: Giving Brandon a voice
for the Mercury News
Unlike his peers, though, he can't say most of what is on his mind. When he tries, what comes out are moans and grunts, unintelligible to all but close family members and caregivers.
The tall, handsome young man loves gospel music, cell phones, Taco Bell and knit polo shirts that show off his broad shoulders. But the inability to speak is a frustrating fact of life for Hills and his mom, Evelyn Glasper. Having a conversation is a lot of work — still, they both try.
"He'll go and get my purse and it is his way of saying, 'Let's go out!'"Š" says Glasper, a single mother who is on disability for chronic back pain and depression. "People underestimate how much he understands and how much he can communicate. It's just that sometimes I am the only one who can understand him. And it is really frustrating for him."
Born with cerebral palsy, Hills struggles with the most basic tasks. An in-home caregiver must be with him at all times, helping with everything from getting dressed to taking a shower. He can walk, but has problems with balance, so a helping hand often is necessary.
The cozy living room of the family home in East Palo Alto is a virtual photo gallery of Hills and other family members, many of whom live in Evelyn Glasper's home state, Louisiana. Over the mantel is a framed painting of a man stepping off a cliff, into the air above what might be an ocean.
"That image is about blind faith," Evelyn says. "Knowing God is there."
Going to church is one of Hills' favorite outings, she says. He loves to get dressed up and is so fond of it that they go to their own church on Saturdays and with friends to another church on Sundays.
"We've been friends since he was very small," says Jennifer Jackson, Hills' daily caregiver, a neighbor and friend who is often at the house.
Brandon's affection for her is obvious as he gives her a kiss on the cheek and sits by her side as she talks.
"Brandon's 24 and his mom is over 60, so it is important we get a means for him to communicate with other people," Jackson says. "It is every mother's fear that they will leave their children. The more we get Brandon ready to be independent in the world, the more secure his mom would feel. We want to be sure he has the ability to live a good quality of life."
What would make life easier for Hills and his mother is a speech-generating electronic communication device that would allow him to point to scenes and symbols that represent what he wants to say. Donations in increments of $50 will go toward its $3,285 purchase price.
A sturdy tricycle customized for Hills' special needs ($1,369) would help him have more mobility. And gift cards ($25 each) for clothes or music would be much appreciated.
Hills doesn't sit around feeling sorry for himself. He approaches each day with enthusiasm and a grin.
When it is time to leave for his "school" — an adult care center in Menlo Park where he goes weekdays — he's is all smiles, grabbing his navy backpack and heading to the car.
22 December 2009
Comfort zones
Baby Reflex is based on the idea that applying pressure to different areas on the foot can help the body heal itself.
Reflexology, an alternative therapy based on the belief that certain parts of the foot correspond to different parts of the body, has been practised in India, Egypt and China since ancient times. Now a new course designed for babies, Baby Reflex, aims to give parents techniques for dealing with childhood problems such as colic and teething pain.Reflexologists maintain that by applying pressure to different areas on the foot, they can help the body heal itself by unblocking energy pathways.
Sceptics may wonder how pressing on a part of their foot can help their sinus problems, but while they may not be able to prove that it works, practitioners and many of their clients insist that reflexology has helped them, either in terms of relaxation or by alleviating a specific condition. In a paper published in the journal Neuroscience Letters last year, Japanese researchers said that reflexology has a physical effect on the body. Using functional magnetic resonance imaging of the brain, the researchers found that applying pressure to the zones of the foot relating to the eyes, shoulder and small intestine resulted in the stimulation of the corresponding areas of the brain. The researchers also looked at previous neurological studies carried out in relation to acupuncture. “Those results indicated that reflexology had some effects that were not simply sensory stimulation. Our results support that claim,” they said.
Jenny Lee is a chartered physiotherapist and reflexologist who spent more than 15 years working with UK doctors and children with asthma. One study, funded by Prince Charles’s Foundation for Integrated Medicine, monitored 47 asthmatic children who were given a weekly session of reflexology. “Not only was their asthma reduced, but we found some interesting side effects,” Lee says. “One was that their sleep improved. Their morning peak-flow reading [lung function test] was miles higher than usual. We also found that the children started joining in with their family’s interests and were nicer to their parents; they were bonding much more with their family.”
Spurred on by these results, Lee launched Baby Reflex in 2006. There are now Baby Reflex therapists working in Australia, Ireland, Spain, France, Turkey, Japan and the UAE.Lee says one of the advantages of reflexology over other alternative treatments such as acupuncture is that it is not painful. “Reflexology is something babies enjoy and is entirely pleasurable. It has a wonderful effect on babies. It calms and relaxes them. It’s not an ‘either/or’ with massage; they are great complementary treatments.”
According to Lee, Baby Reflex not only helps parents bond with their children, but it can also help with childhood issues such as colic, reflux and ear congestion. It also boosts the immune system. Shirley Ali trained with Lee and is now teaching Baby Reflex to small classes at The Club in Abu Dhabi. Ali is a trained aromatherapist, beauty therapist, masseuse and Reiki master and has been practising reflexology in the UK and in the UAE for more than 20 years.
Each course of classes lasts three weeks and is suitable for babies aged one month to two years. “The idea is to make it bite-sized,” Ali says, “because when you are a new mother you can’t take in as much information, and it’s not fair to keep the baby there too long.”Parents learn the reflexology techniques by practising on each other’s feet before trying the movements on their babies. “Baby reflexology works in the same way as reflexology for adults, but you have to take into account the size of the baby’s foot and the pressure you can apply,” Ali says.
Jane Miller, a Briton who has lived in Abu Dhabi for three years, has just finished a Baby Reflex course with Ali and has been using her new skills on her 10-week-old baby, Alice. Miller enrolled in the course in the hope that reflexology might help Alice’s colic, but says she knew at the very least that Alice would benefit from the relaxation aspect of the sessions. “Having experienced reflexology and knowing how lovely and relaxing it was, I wanted to do the same for Alice,” Miller says. She continues to use reflexology on Alice now that the course has finished, but there are some practical challenges. “Her feet are so small and she constantly pulls them away from me. She has tiny feet and I feel very clumsy doing it.”
Despite this, Miller thinks the reflexology may have had an effect. “She is definitely much more settled now and the colic is better. Whether this is coincidence because she is simply maturing, I don’t know, but I enjoy doing it and it’s another tool in the box.”In the first week of Ali’s course, parents are taught how to use reflexology to assist their baby’s feeding and digestion. Ali holds up diagrams of a baby’s feet with the relevant zones marked on them. Ali says one of the most helpful areas of the foot for parents to become familiar with is the calming zone just under the pad of the big toe. “Just use the knuckle of your little finger to apply a small amount of pressure, brushing down this area,” she says. Parents are also taught how to manipulate the areas relating to reflux and colic relief.
In week two, Ali explains how to help babies sleep or calm down. As well as the big toe calming zone, parents are taught the relax stroke down the inner arch of the foot from toe to heel. The final week covers general well-being. Parents learn the strokes for relieving teething pain, sinus pain, blocked ears and even insect stings. “The thing about baby reflexology is that it is portable, much more so than baby massage where you need to lie your baby down in the warmth,” Ali says. “You can do it while they are sitting in the trolley at the supermarket. If the baby is agitated or crying, you can just take their shoe off and press on the area relating to calming.”
The treatment time is brief. Ali recommends limiting each session to five minutes and not doing more than three sessions in 24 hours. Laura Dempsey, another of Ali’s students, agrees that the ease with which you can do reflexology is appealing. She has just returned from a trip home to the UK with her 15-week-old son, Hugo. “It was really useful in the plane,” says Dempsey, who lives in Abu Dhabi with her husband and two other children, aged three and two. “I did the calming one on the flight and he didn’t cry too much. It’s better than resorting to chemical medication.”
Dempsey, like Miller, was drawn to the course partly as a result of her positive experiences with reflexology treatments. “I had reflexology with Shirley when I was pregnant with Hugo,” she says. “I had a bad back, but the reflexology cleared it for the rest of my pregnancy. Reflexology is good for making you feel in balance. I came out feeling less heavy and more aligned.”She decided to try it on her baby. “I thought if I enjoy it, maybe he will, and maybe there is something in it. It’s a nice social time, too, to meet other mums with kids of similar ages and similar problems.”
Lee hopes to launch a new course for toddlers soon. “Once they are more mobile, we work on their hands,” she says. “We focus on different parts of the body using different nursery rhymes.” The apparent benefits of reflexology on young children continue to be shown. One Baby Reflex therapist in Ireland has noted improvements in children with cerebral palsy who have weekly reflexology sessions, and has started working with physiotherapists to develop this. As Lee says: “The research is only the beginning.”
For more information visit the www.babyreflex.co.uk or e-mail infoshirleypurly@hotmail.com.
14 December 2009
03 December 2009
An Update in Bi-Polar Weather
I hope that you all are well today. Nebraska is crazy, this morning while I was eating with my Dad. We both saw snow flurries. Now as I look out my office window, the sun is out. This is some serious bi-polar weather. But it’s okay.
Eventually, I will be recording some video blogs. Just to make things a bit more personal, being the artist that I am. They must be quality. The past several days I’ve recieved a handful of emails from mothers that have a child with Cerebral Palsy. It’s been an honor to share my experiences with my condition, and at the same time, be there to offer hope.
It’s been two years since The Emotional Struggle was first released to the general public. Honestly, it still feels like yesterday. And it also feels like I’ve only just started to scratch the tip of the iceburge. More and more teens are flocking to it. More bands are starting to read it. And the midst of everything, I’m on the second chapter of my new book. The writing process has be some what nerve wracking.
I’m well aware that I’m very critical of myself of myself. So I’m doing what I did with my first book, I’m letting it all out, holding nothing back. Sharing my experiences in life and being a single male. So far it’s been very healing, I’ve felt a lot of release in writing these pages. But it’s just the start of what I think will be a wonderful work of art.
Please keep buying my first book, give it as a gift to anyone you feel might gain something from reading it!
-Brandon
Intensive, Progressive Physical Therapist Exercise Program Plus Educationreduces Disability And Improves Patient Function After Back Surgery
Low back pain continues to be the most prevalent musculoskeletal problem, and one cause is lumbar disk herniation accompanied by sciatica - with many cases resulting in lumbar diskectomy. Up to 35 percent of patients continue to have pain and impaired function after surgery, which may be related to the type of postoperative care that they receive.
"An important goal of physical therapy interventions is to resolve functional deficits associated with low back pain," said physical therapist and lead researcher Kornelia Kulig, PT, PhD, associate professor of clinical physical therapy in the Division of Biokinesiology and Physical Therapy at the University of Southern California in Los Angeles. "There is strong evidence that intensive exercise is effective in restoring functional status in patients who have undergone lumbar diskectomy. The exercise intervention in our study consisted of an intensive, graded strength and endurance training program targeting the trunk and lower-extremity musculature."
In this study, 98 participants who had undergone a single-level microdiskectomy were randomly allocated to receive education only or exercise and education. The education-only group received one session of back care education 4-6 weeks after surgery. The education and exercise group received one back care education session followed by a 12-week USC Spine Exercise Program initiated 2-3 days after the education session. The exercise program consisted of back extensor strength (force-generating capacity) and endurance training as well as mat and upright therapeutic exercises. The back extensor strength and endurance training portion was designed to load the back extensor muscles in a graded manner by varying the time and angle at which the trunk was held against gravity, using a variable-angle Roman chair.
The goal of the program was for participants to be able to maintain a horizontal body position for 180 seconds. The purpose of the mat and upright therapeutic exercise portion of the program was to progressively and dynamically develop strength, endurance, and control of movement by the trunk and lower-extremity musculature.
Testing on all outcome measures began 4-6 weeks after surgery, prior to intervention, and was repeated for comparison after the 12-week program. Participants showed improvement in their ability to engage in activities of daily living as well as performance on the Repeated Sit-to-Stand Test, the 50-Foot Walk Test, and the 5-Minute Walk Test. In addition, some participants opted out of their allocated intervention group to pursue physical therapy care outside of the study, but agreed to remain in the study. This allowed researchers to include a third group. The three-group analysis still showed greater improvement in activities of daily living scores, 5-minute walk distance, and 50-foot walk time in the exercise and education group.
"These results suggest greater effectiveness of the current exercise program in reducing disability and improving walking performance than that expected from usual physical therapy," remarked Kulig. "An intensive 12-week strength and endurance training program of the trunk and lower-extremity musculature is safe and results in a greater reduction in disability and a greater increase in walking performance immediately following the intervention."
This study was funded by a grant from the Foundation for Physical Therapy.
Source: Jennifer Rondon
American Physical Therapy Association
Report shows CIMT may improve arm use in children with hemiplegic cerebral palsy
Hemiplegic cerebral palsy affects one arm and leg on the same side of the body. CIMT forces the use of the affected side, specifically the upper extremity, by gently restraining the unaffected side in a mitt, sling, or cast. The patient then practices moving the affected arm for varying durations of time and intensity. Previous studies showed support for the use of CIMT to improve the frequency of use of the affected arm for children with hemiplegia. In most studies, positive effects were demonstrated 6 to 8 months after intervention.
"Although previous studies reveal a marked increase in function of the affected limb, there is a strong need for more rigorous studies to determine what constitutes an adequate dose of CIMT for pediatric patients with hemiplegia," said physical therapist Linda Fetters, PT, PhD, FAPTA, the holder of the Sykes Family Chair in Pediatric Physical Therapy, Health and Development in the Division of Biokinesiology and Physical Therapy, and a professor in the Department of Pediatrics at the Keck School of Medicine at the University of Southern California.
This systematic review specifically focused on research involving children younger than 18 years of age, as the central nervous system in these young children is still in the early stages of development. One of the theories behind the success of CIMT in children is that the developing brain has the capacity to reorganize learning.
"What we don't yet know is the impact of prolonged restraint on a child's developing nervous system," said first author Hsiang-han Huang, MS, OT, a ScD student in the Department of Physical Therapy and Athletic Training at Boston University. "Depending on the stage of development during which CIMT is applied, its potential impact may differ."
Physical therapists are highly-educated, licensed health care professionals who can help patients reduce pain and improve or restore mobility -- in many cases without expensive surgery or the side effects of prescription medications. APTA represents approximately 76,000 physical therapists, physical therapist assistants, and students of physical therapy nationwide. Its purpose is to improve the health and quality of life of individuals through the advancement of physical therapist practice, education, and research. In most states, patients can make an appointment directly with a physical therapist, without a physician referral. Learn more about conditions physical therapists can treat and find a physical therapist in your area at www.moveforwardpt.com.
01 December 2009
Mother hails Blind School's help as son wins design
Nine-year-old Ben Wilson lost his sight and was severely brain damaged after a 16-hour fit as a six-month-old baby.
Over the years his parents Jenny and Neil wondered what quality of life he would have, but said the past three months at the city's Royal Blind School had turned his fortunes around.
The pinnacle of this so far was when he won a Christmas card competition run by Edinburgh South MP Nigel Griffiths, who will send it to the likes of US president Barack Obama, former leader Bill Clinton and Nelson Mandela.
Ben, who lives at the Newington school during the week and returns home to north Tyneside at weekends, may have the potential to gain some independence thanks to the work of the school.
Jenny, 39, said: "We tried for a good while to get him into the school, and I have to say the amazing reputation it has is dead right. Even though he has only been there for a few months, the difference is there to be seen."
Doctors said when Mrs Wilson awoke randomly eight years ago she might well have prevented the cot death of Ben.
She woke at 5am and carried him downstairs, and then the seizure happened.
"Call it mother's instinct if you will," she added. "I knew something was wrong.
"In hospital we were basically told his brain was like a scrambled egg, and anything he was able to do was a bonus. But since he's been in Edinburgh he has learned so much. He can help me with washing dishes. He is in a wheelchair but one day we hope he can get a powered one which would give him some more independence."
Although the benefits for his wellbeing of being at the school are clear, Mrs Wilson added that it could at times be difficult for her and her accountant husband, 43.
"We knew he had to go there," she said. "He was getting very frustrated with life and this has helped. He is calmer and happier, every night there is something to do at the school which is something I couldn't do as a mother of two other children.
"But it can be hard, when we speak to him or the school and hear what he has been doing we sometimes think we would have liked to have done that with him, or seen him do it."
Mr Griffiths, who met and congratulated Ben on Saturday, said: "The school is among the best of its kind in the world, and that is said by people from around the world. Whenever I go there I am asked deeper, more challenging questions by the pupils than I get from those at George Watson's or Heriot's."
"The work they do is terrific, and the result of Ben's design going to 6,000 people around the world who are on my Christmas card list, including Gordon Brown and Barack Obama, is testament to what can be achieved."
Research Breaks New Ground For People With Epilepsy
Pioneering research undertaken at the University of Sheffield has revealed that linguistic observations can help doctors differentiate between two of the most common causes of blackouts.
The news comes within National Epilepsy Month, which aims to raise awareness about epilepsy and promote tolerance and overall understanding of the condition.
The sociolinguistic study at the University, breaks completely new ground. Led by Markus Reuber, senior clinical lecturer and honorary consultant in the Academic Neurology Unit at the University of Sheffield, this is the first time conversation analysis has been shown to be capable of making a contribution to the differential diagnosis of superficially similar disorders.
The correct treatment of seizure disorders like epilepsy crucially depends on getting the diagnosis right. The three commonest causes of blackouts (epilepsy, fainting and non-epileptic attack disorder) require very different treatments. Whilst it is relatively easy to distinguish between epilepsy and fainting, it is very difficult to differentiate between epilepsy and non-epileptic attacks (NEA). Prior to this study, misdiagnosis frequencies of between 5 per cent and 50 per cent have been reported.
Epileptic seizures occur due to self-limited activity of neurons in the brain, characterised by recurrent epileptic seizures, while NEA are episodes of loss of control not associated with electrical discharges in the brain. Instead, NEA occur in response to distressing situations, sensations, emotions, thoughts or memories when alternative coping mechanisms are inadequate or have been overwhelmed. The treatment of choice for epilepsy involves antiepileptic drugs, while the first line treatment of NEA would be psychotherapy.
Researchers at the University independently analysed twenty first 30-minute doctor-patient encounters and focused on how patients with epilepsy and NEA talked to their doctor about their seizures, rather than what symptoms they mentioned. In these patients, the correct diagnosis had been proven by the simultaneous video and brainwave recording of a typical seizure. The study concentrated on aspects of the consultation which might otherwise be considered redundant by the doctor, such as the patient's willingness to volunteer information about their seizure experience, evidence of hesitation and reformulations of the information they were sharing with the doctor. These features proved very different between patients with epilepsy and NEA.
The findings showed that the patients with epilepsy tend to volunteer detailed first person accounts of seizures. In contrast, patients with NEA tend to resist focusing on individual seizure episodes and only provided seizure descriptions after repeated prompting by the doctor.
As a result, Markus Reuber and his team were able to correctly distinguish non-epileptic from epileptic seizures in 17 out of 20 cases, just by analysing the linguistic content of the transcript. It is now hoped that the groundbreaking research will allow patients to be more accurately diagnosed, as prior to this study, only 40 per cent of the patients investigated carried the correct diagnosis and received appropriate treatment.
Markus Reuber, senior clinical lecturer and honorary consultant in the Academic Neurology Unit at the University of Sheffield, said: "Neurologists see patients with epilepsy and non-epileptic attacks every week. The differentiation of epileptic and non-epileptic attacks is one of the most challenging tasks in the neurology outpatient clinic.
"This work does not only help neurologists with this difficult problem but also enables them to understand patients and their seizure experiences much better. I apply the insights I have gained from this research in my daily practice."
Dr Chiara M. Monzoni, linguist and post-doctoral research associate from the Academic Neurology Unit at the University of Sheffield, said: "Doctor-patient interaction has always been investigated through conversation analysis in order to understand how activities like decision making, diagnosis delivery or advice of treatment are actualized in interaction, in order for doctors to improve their daily practice.
"This study instead demonstrates that conversation analysis can help doctors in diagnostic processes which might be particularly challenging. It could be applied also to other difficult conditions as: anxiety/depression, headache/migraines, pain and amnesia so is particularly groundbreaking."
Source
University of Sheffield
--------------------------------------------------------------------------------
Article URL: http://www.medicalnewstoday.com/articles/172397.php
Something special (and loud) about wheelchair rugby
Canwest News Service
Some call it murderball, but to 15-year-old Nathan Bragg, it's a chance to showcase his athleticism while playing a full-contact sport in his wheelchair.
"For me, one of the things I absolutely love about [wheelchair] rugby is the contact," Bragg said. "I've never had the opportunity to do that before I started playing."
"The hits are pretty loud, usually quite a loud clang of metal. I've gone over a few times, but I just get up afterwards."
Still Bragg, who has cerebral palsy, said it's not as dangerous as it seems. His teammates, some of whom are quadriplegic, try to convince Bragg's mother Sheena of the sport's safety by asking, "What's the worst that can happen, I break my neck?"
Bragg started playing wheelchair rugby two years ago after being introduced to the sport at the BC Wheelchair Sports Association's junior sports camp.
Each summer, the association runs one-week day camps — some in partnership with the Easter Seals — in the Lower Mainland, Squamish, the Okanagan Valley and on Vancouver Island.
Children get to try their hand at tennis, curling, rugby, track and field, dodgeball, sledge hockey, floor hockey and basketball.
The Vancouver Sun Children's Fund provides 30 per cent of the camps' budget every year, which helps buy new equipment, rent facilities and subsidize transportation to get the youth to camp and back.
"It's really critical. Without that funding we wouldn't be able to ship chairs around the province, rent the facility and pay for the transportation," said program manager Kevin Bowie.
"[Sports] gives [children] a well-round, well-balanced lifestyle. We really try to give them all the same opportunities that an able-bodied child has," he said.
"They get to play with kids who have different disabilities, so they become a little bit more self-aware and a little bit more self-confident."
There was special inspiration for camp participants this summer with visits from Paralympic hopefuls like Darryl Neighbour, a member of Canada's national curling team.
As for Bragg, it wasn't until a wheelchair basketball team played at his school four years ago that he realized he could be playing competitive sports and winning trophies just like the other children in his class. So he joined the camp.
"Sports are my big passion," he said. "I could name every single team in every major sports league since I was nine years old, but I could never play any actual sports."
After developing his own athletic abilities over the past four years, Bragg is looking to take a leadership role at camp next summer.
"There's some kids I see now and I think, 'That guy is just like me when I was 10 or 11,'" Bragg said. "I could see . . . that he would get frustrated at the same things that I would get frustrated at and I thought I should give back and help other people like me."
When he's not smashing and crashing into his rugby teammates, Bragg spends his time on the basketball court doing circles around other athletes.
Bragg, who lives in Maple Ridge, is on the B.C. Provincial Junior Team and is focused on snagging a spot in the Canada Games being held in Halifax in 2011. And maybe even future Paralympics.
rtebrake@vancouversun.com
30 November 2009
The Types of Neurological Conditions and Physiotherapy Used
There are many neurological conditions and physiotherapy can help many of them.
Alzheimer’s disease takes away the declining years of many older people.
It is surprising to note that it can occur in people 40 years old or younger.
ALS or Lou Gehrig’s disease is a disease that robs the brain and spinal cord of the ability to move.
Both of these are neurological diseases that can be helped by physiotherapy.
MS, another of the neurological conditions that affects the brain and spinal cord, can lead to a long, slow decline.
Parkinson’s disease is another of the neurological conditions of the brain.
This one can cause shaking and loss of coordination, and problems moving and walking.
Physiotherapy offers some relief to these patients.
Guillain Barre Syndrome is one of the types of neurological conditions that affect the brain and spinal cord too.
It is a case of the person’s own immune system attacking outside these areas.
It can be severe enough to require emergency hospitalization. Physiotherapy offers help with regaining strength and adapting to life with the disease.
Neurological conditions that are autoimmune diseases are difficult to treat.
Myasthenia Gravis is one such illness. It causes muscular weakness because of a lack of communication between nerves and muscles.
Like other neurological conditions, it can be very debilitating. A great amount of physiotherapy is needed to help Myasthenia Gravis patients to live with their neurological conditions.
This includes strength training, training in the use of supportive devices, and help with common tasks.
One problem physiotherapists face when working with MG patients is that too much exercise will make their condition worse and not better. Many of the patients with neurological conditions cannot carry on daily functions such as caring for themselves and their homes.
It is not uncommon for these people to be unable to work. They may even have trouble walking or getting up and down stairs at all. Difficulty swallowing or breathing; dizziness, poor balance and falls, and a total lack of endurance plague many of these patients who have neurological conditions. Medications or surgeries can help with some of their problems, but many problems are ones they will have to abide.
Physiotherapy can offer solutions that other branches of medicine cannot.
Exercises, as in most physiotherapy, include strengthening and stretching exercises.
In whatever way is possible, patients with neurological conditions need to get aerobic exercise.
Physiotherapists may be able to make a plan so that this is possible.
Part of this plan for patients with neurological conditions would include balance training and coordination training. With these two skills in place, the patient will have a more advanced ability to do aerobic and other exercises. Aquatic exercise is also used.
Patients with neurological conditions must live with many problems of lack of movement and function.
Physiotherapy can help them to overcome some of these problems.It can make their lives easier and more pleasant, besides.
27 November 2009
Small Update
A late happy ThanksGiving to you all, it’s been awhile. My ThanksGiving was bitter sweet at best, the food was great. I had to huge plates of food. And then my sister was helping me walk down the stairs, and my body started to get really stiff. I tried to calm down and relax. But as I made my way down, I walked as quickly as I could to a chair and that’s when a painful back spasm gripped my back.
It was tough, and it hurt so bad. Luckily I didn’t have to go to the ER. I’m okay, just really sore today. Just wanted to give you all an update. The writing is going well, slow but very well. Please keep me in your prayers.
-Brandon
FELDENKRAIS:THE POWER OF MOVEMENT
Kathy James
The Feldenkrais Method® is unusual, unusually deep, subtle, and powerful. It’s a revolutionary approach to understanding how we function both physically and mentally, as well as providing tools for our improvement. So for example, if you are someone who experiences pain and have been told to exercise it is a step but it may not be enough. Our tendency to move in the same ways, guided by the same postural habits, sensory cues and mental images are strong. What an individual needs to learn is how they are moving and how their way of moving may relate to their pain or problem. Feldenkrais Practitioners are trained movement specialists, who help people move and live with greater comfort, flexibility and ease.
Before being introduced to Feldenkrais in 1975, I had spent about twenty-five years getting ready for it. I started with dancing— tap, jazz, ballet, whatever. I danced through my entire childhood, compelled by the sheer pleasure I experienced through movement. I didn’t think much about the importance of movement for health or well-being when I was young; I just knew that it made me feel good and gave me a sense of confidence.
In college I became interested in science, but continued to dance off and on. I yearned to find a way to combine the two, somehow. Then I took this workshop consisting of simple but unusual movement sequences that seemed so trivial—yet after each class I felt great! I still remember one of the classes, just turning our heads around to look behind us and then back to the front, repeating it several times. We then turned our heads while moving our eyes in the opposite direction, still very gently, repeating each movement. After a series of these strange variations, we were asked to repeat the original movement: I was shocked to discover that my range of movement had doubled with almost no effort, just be paying attention to my movement in new ways. This was my introduction to The Feldenkrais Method®.
After completing my degree in Zoology, I continued dancing, while looking for ways to integrate my two passions—scientific inquiry, and movement. When I heard about a training program with Moshe Feldenkrais, I knew that I had to do it. The four-year program began in Amherst, Massachusetts, in the summer of 1980, and culminated in Tel Aviv, Israel, where Moshe Feldenkrais lived.
That was almost thirty years ago. Today, most people have still not heard of the Feldenkrais Method®, but many folks have tried it, and have been helped by it. The Feldenkrais Method® consists of two basic forms—one on one individual sessions, called “Functional Integration®,” and group movement classes known as “Awareness Through Movement®.”
In Awareness Through Movement® classes, the Feldenkrais practitioner verbally guides people through a sequence of gentle movements. Many of these movements focus on simple daily actions such as reaching, looking behind yourself, breathing, sitting, improving balance, bending down, walking, or more complicated patterns such as yoga postures. Regardless of the specific movement, the point is always to move gently, and work at your own level.
Functional Integration® is the one-to-one, hands-on session in which the Feldenkrais practitioner and client work together to increase the client’s movement awareness and capacity, in supportive and non-invasive ways. Usually, the practitioner works with the client (fully clothed) on a low table, using gentle touch and verbal direction to guide the movement sequences that encourage new awareness and learning. The result is improved pain-free movement and improved performance in almost any area—be it sitting, walking, running, playing tennis, playing piano, gardening—whatever involves movement.
Moshe Feldenkrais was a true innovator, developing thousands of movement lessons that produce impressive changes. Worldwide there are more than 6,000 Feldenkrais Practitioners, using movement awareness to help people with all sorts of challenges, ranging from back, neck, shoulder, knee, hand or foot pain, to neurological conditions such as cerebral palsy; head injuries from accidents or strokes; chronic conditions such as chronic fatigue or fibromyalgia; to musicians and athletes who wish to improve their performance. Some practitioners have even applied their work to animals with impressive results. My favorite quote from Moshe Feldenkrais sums up our approach nicely: “To make the impossible possible, the possible easy, and the easy elegant.”
Kathy James is a Certified Feldenkrais Practitioner, in private practice in Petaluma.
Email: kathytjames@att.net
26 November 2009
Dance Offers Key To Mobility For Actor With Cerebral Palsy
November 25, 2009
For three decades Gregg Mozgala struggled to walk with cerebral palsy forcing his body up on its toes and wavering from side to side. But at 31, that’s all changing thanks to a choreographer.
Mozgala, an actor, has been working with Tamar Rogoff for just eight months, but is slowly gaining use of muscles and tendons that had been off-limits all his life. In intensive sessions, the two work on one area of the body at a time focusing on tension-release. Unlike physical therapists he’d seen in the past, Mozgala says Rogoff has given him the key to access his own body.
The result is that Mozgala can now walk more smoothly and doesn’t fall like he used to. And it proves what scientists have come to believe about the brain — that it’s constantly changing and able to grow.
The pair’s success is also yielding a four-person hour-long dance premiering in December in New York City, much more than the 10-minute presentation the two envisioned at first, reports The New York Times.
25 November 2009
23 November 2009
New Isle of Wight boat for wheelchair users
A club on the Isle of Wight has raised funds to buy a catamaran to enable people with disabilities to get on the water
The Fishbourne Sailability Club has raised funds to buy a catamaran to enable its members to get a taste of motorboating.
The Fishbourne Sailability Club was founded in 2002 to enable people with disabilities to enjoy water-based activities in both sailing and motorboats. Last year it looked into a suitable motorboat and the catamaran was chosen due to its ease of access, stability and working space.
The boat is now ready for use and to celebrate a naming ceremony will be held on Saturday 25 April at the Royal Victoria Yacht Club, Fishbourne, Isle of Wight from 12pm. The ceremony will be presided over by the High Sheriff of the Isle of Wight, Gabrielle Edwards and yachtsman, Geoff Holt.
A spokesperson from the club said, "We believe that the availability of this boat will make a real difference to many people with disabilities on the Island."
For more information call 01983 882560.
Museum wins place in guide
The museum, which was built 10 years ago, was designed to be fully accessible to all visitors but improvements have been made, including automatic electronic doors and programmes designed specifically for disabled people.
The Rivertime Boat Trust, which operates from the museum’s jetty, uses a specially constructed boat which can carry 12 people and is fitted with a wheelchair ramp and hydraulic lift for the disabled.
The museum also hosts Breaking Barriers, a project involving adults with sensory, physical and learning disabilities to develop new ways of learning.
It is also working with organisations including the Reading Association for the Blind and the Learning Disabilities Group in Henley to improve access, understanding and enjoyment of the galleries.
Chief executive Paul Mainds was "delighted" to be included in the Rough Guide To Accessible Britain.
He said: "It’s a great compliment, not only to our building but to our staff and the programmes we run.
19 November 2009
Injection Could Help Regrow Spine, Reduce Back Pain
POSTED: 6:21 pm MST November 18, 2009
About 80 percent of Americans will experience low back pain at some point in their lives.
It's the second most common reason people visit their doctors. Often, these patients have torn or ruptured discs that cause excruciating pain. But there's a new option on the horizon that could regrow healthy discs in the spine without surgery.
Rebecca Tirs spends most days curled up in bed with her pal, Jenny Bee. But this isn't how life has always been for these two.
Ten years ago, Tirs was an active 28-year-old. But then she was in a rollover car accident, where she tore two discs in her low back.
"I had a mild traumatic brain injury. I had a fractured pelvis. I had fractured scapula, fractured ribs," she said.
Tirs can barely walk. She had to quit work and give up all her favorite activities.
"It was just constant, deep down to the bone, severe pain," Tirs said. "I cried all the time."
Dr. Michael DePalma is working on a new way to heal injured backs. As part of a clinical trial, he injects growth factors, found naturally in the body, into damaged discs.
"The growth factors are that, they stimulate growth of certain tissue," said DePalma, the medical director at the VCU Spine Center in Richmond, Va.
The injection includes a growth factor called OP1, a key ingredient in the development of bone and tissue. In animals, the shot helped damaged discs grow back. Doctors say in humans, it could mean no surgery, no damage to surrounding tissue and little downtime.
"This sort of treatment may find its role in treating the disc before they get to a point beyond which only surgery is going to help," DePalma said.
Tirs doesn't know if she received a placebo or the real injection, but she noticed a slight improvement in her pain level.
"Instead of maybe an eight or a nine, I was a seven," she said.
She said every bit helps -- if it gets her one step closer to her old, vibrant self.
Researchers are still working to see if one injection is enough to ease the pain. Eligible patients have suffered lower back pain for three to six months despite physical therapy and medication.
BACKGROUND: Intervertebral discs, which form the cushions between the vertebrae of the spine and make up about a third of the spine's height, degenerate earlier than any other connective tissue in the body. When a disc degenerates, it loses height and affects the mechanics of the entire spine, possibly negatively affecting surrounding muscles and ligaments.
A major cause of back pain, research shows pain from disc degeneration affects 12 to 35 percent of the Western world, according to the journal Arthritis Research & Therapy.
"Back pain is common, and the most common source of back pain is a disc," said Michael DePalma, M.D., an interventional spine specialists at VCU Spine Center in Richmond, Va..
About 10 percent of back pain sufferers become chronically disabled. When a disc ruptures or bulges to press on a nearby nerve root, the injury is called a herniation. Experts believe some degeneration must take place before a disc herniates.
CAUSES: Aging and injury are the most common causes of disc degeneration. These factors lead to a loss of hydration in the material that makes up a disc, which ultimately leads to the loss of height. This loss of height eventually causes pressure on the nerve roots in the spine, resulting in pain.
New research suggests genes may play a larger role in back pain than once thought. A research team at the University of Alberta recently discovered eight genes linked to degeneration of discs in the lumbar region of the spine. The discovery came a year after the same team demonstrated that disc degeneration is affected in a large way by genetics.
REGENERATING DAMAGED DISCS: While medications, physical therapy and surgery can help some back patients, researchers are exploring new options for treating discs with the body's own resources. Studies examining treatments like gene therapy, stem cell therapy, cellular scaffolds and growth factor injections are underway in animals, and some in humans.
Growth factors are molecules that bind to cell membranes and activate the growth of new cells. A single injection of the growth factor OP-1 has been shown in animals to both increase the height of a disc and reduce pain, without damaging surrounding tissue. The first trial examining the treatment in humans is underway.
"This sort of treatment may find its role in treating the disc before they get to a point beyond which surgery is going to help," Dr. DePalma said.
FOR MORE INFORMATION, PLEASE CONTACT: Michael DePalma, MD
mdepalma@mcvh-vcu.edu
18 November 2009
Independent living: A disabled man and his personal assistants
My disability means that I need help for almost all physical activity. So, to enable me to live an independent life in my own home, I need a live-in personal assistant. Do not call them 'carers' under any circumstances. If you do, disabled people will start throwing their wheelchairs at you. Or, at least, they'll ask their PAs to do it on their behalf.
I have a couple of PAs working in three-day shifts and they usually stick around for a year. Training up and getting to know the new guys twice a year is stressful, but I have developed strategies to make these periods easier.
Living with strangers
We are in the kitchen. He asks me if I want some wine and I nod. He takes the glass, puts it between my lips and slowly starts tipping it down my throat. When I have had enough I carefully grip the glass in my teeth and gently push it down: the international sign language for 'Please don't drown me in Chilean merlot'. I can shove a computer mouse around well enough to win international design awards, but holding a wine glass is beyond my physical abilities.
I have found that the kitchen is a really good place to weigh up my new partner in this strange relationship. Strange because it resides in a grey area: too intimate to be strictly business (it's hard to think of the person helping you dry off after a bath as an employee), yet too enforced to really be friendship.
In return for bed and board and a small living allowance they have come from all over the world, for any number of reasons. I know from their passport photos what they look like, but on the first day they are strangers. Strangers who eat and sleep in my house; strangers who help me do some of the most private things possible.
Imagine getting a new lodger who, on their first night in your house, helps you undress and makes you comfortable in bed. Psychologically, that took a lot of getting used to, but now my concerns are more mundane.
The perils of shopping
I went to the supermarket with Raoul the other day, and we accidentally stole four tuna steaks and two fruit smoothies. After completely filling a basket, we used the compartment under my chair. We got to the checkout and unloaded - but we forgot the items stuffed away under me. Raoul was oblivious - when there is food within arm's reach you could take a hammer to him and he wouldn't notice - but I remembered just as he handed over the cash.
For a second, I thought I should mention it. Then, just as quickly, I reassessed the situation: sleepy edge-of-town branch; genuinely a complete accident so we hadn't acted suspiciously; very easy to play the disabled card (when they come for Raoul I could start drooling and gibbering - perhaps I should practise this for future use?). Anyway, no one noticed a thing until I mentioned it when we were in the car. He was wide-eyed for a minute, and then we both laughed.
Another day I asked Raoul if he could make a quick trip to the supermarket for toothpaste. On returning, his opening line was, "They didn't have your old one." I was immediately on alert. He continued, "But they had a special offer, buy two and get one free." With a showman's flourish, he showed me something made of ground chalk and minty wallfiller. In a family-sized tube. Well, what's the point of buying the wrong thing and then not buying it in the very largest size you can find? Instead of one tube of the toothpaste I have been using for half my life, I have three salamis of grout.
I wanted to turn into the drill instructor from Full Metal Jacket. I wanted to scream poetic, spittle-flecked invective inches from his pacific face. But it's only toothpaste and he's a good guy really. And I barely reach his midriff; asking someone to bend down so that I can insult him seems very laboured.
Anger management
Checking for 'work' emails. Illustration: Stefano Goodman
I remember the moment I knew I had a serious problem with my new PA, Zvonimir.
Near the end of his third shift he asked if I wanted a game of chess. I remembered him talking about chess before and, detecting that he was a fairly accomplished player, I had already mentally prepared myself for a nonchalant defeat. I convinced myself that I really should have been working anyway, and so any loss was going to be down to a lack of concentration.
We played and in no time he was beating me like a bad habit. Every now and again I made a show of checking for 'work' emails, emphasising the point that I was actually being polite in playing at all. I did mount one serious attack, but I knew I was doomed. At one point I made a desperate/stupid move and he stifled a deep sigh. Three moves later I resigned.
Breezily, I congratulated him and said that I really should get back to work. This didn't even register with him. He just stared at me. "Why did you do that?" he asked. I told him what my attack plan was. "I understand that," he said. "Yes, I understand that. But you knew you didn't have enough time to develop that attack." Disgust and anger laced his disappointment. He didn't blink during the whole exchange.
A few weeks later, Z left our working relationship. The agency that arranges for these placements does very thorough background and criminal history checking, but I am not sure where his anger management issues would show up on a normal application form. Z always treated me with respect and, despite his general intensity and occasional temper flare-ups, we got on OK, even if I had begun to be slightly wary of him.
There was no such (fragile) harmony back at the shared, off-shift volunteer house. Threatening behaviour to the housemates and staff at the local bank was a quick route out of the country.
Tea time
I await the first cup of tea from a new PA the way I await the first game of a new football season: anything could happen and the result will be a signpost for the season ahead, Gary.
More than two weeks in with Raoul, I still couldn't get through one of his afternoon cuppas. He noticed. "No better?" he asked. "Getting there …" I said, unconvincingly. It had taken a full week to successfully remind Raoul to let the kettle boil fully before using the water to make tea, and three or four days before that to convince him that water from the hot tap is not a substitute. "Really?" he had asked in genuine wonderment. "Really," I had said. "But it's so hot, almost too hot to touch!"
Sometimes I fantasise about buying every tealeaf and bag available, and ordering a scientific endeavour hitherto unknown to tea technology. Locking ourselves in the kitchen, we would try every possible combination of brewing time, temperature and method. Once we discovered the perfect process, I would get the PA to video it and post it on YouTube. From then on, it would be available to all the new PAs at the click of a mouse. One day, my friends, one day ...
The last supper
It's year-end for Gustav. He is a really easy-going guy and I will be sorry to see him go, even with his onion breath and addiction to pornography. Often it is very hard to say goodbye to someone who has been sharing my life for a year. Unless it has been a really difficult placement, I am genuinely sad as I see them leave for the last time. I have had intimate physical contact with them for a year, but I will probably never see again.
I offered Gustav his choice of our last meal together, as is my tradition. Secretly I hoped he would pick something that I usually forbid myself, thereby allowing me to gorge guilt-free. This gambit usually works very well, as almost every one of my PAs has had the appetite of a nursing sow. (I do not put Raoul in this bracket; his appetite is a mutant thing and belongs in a different league completely).
Unfortunately, Gustav was under pressure from his new girlfriend Ursula to become a vegetarian, and so he picked some macrobiotic stuff from a place run by people with hairy arms. I think I hid my disappointment very well, and I'm proud of the mental strength that prevented this incident souring my memory of a pretty good working relationship.
• Stefano Goodman is a pseudonym. All other names have been changed.
More information on independent living
Independent Living Alternatives
ilanet.co.uk/
National Centre for Independent Living
ncil.org.uk
Community Service Volunteers
csv.org.uk
Nintendo Turns Rehab Into "Wii-Hab"
Sometimes, surgery is necessary to save someone's life - or at least to save their health and comfort - but it can be a long and painful road to recovery. Doctors and physicians have been trying to make the rehabilitation process easier on patients for years, so when Wii Fit came along, some of them saw the opportunity to literally make rehab a game, as Lauren Admire writes in Issue 227 of The Escapist.
Since beginning the program in 2008, nearly 200 patients have taken part in this special Wii-hab therapy. Though Wii-hab doesn't replace traditional methods, it certainly helps break up the monotony of traditional physical therapy exercises. The buttons of the controller help patients with their small motor skills, while the swinging and flicking motions many games employ help with hand-eye coordination. Games that support the Wii Balance Board also assist with balance, core strengthening and even retraining muscles.
Jamie Weinman is a recent survivor of a brain tumor. After her tumor was removed, the entire left side of her body was affected. She's been using Wii-hab to help with her balance and coordination. "It's more fun because you don't feel like it's therapy," she reports to CNET, "[Wii-hab] helped my leg get stronger, it helped me with my balance and coordination. The more you use it, the better you get, and it gets you excited to do it again because I'm trying to beat my last score."
17 November 2009
Wrap Up a Wish: Hopes for greater mobility
By Ron Orozco / The Fresno Bee
About the series
The wish: Criselda Ruiz wishes for an EasyStand Magician chair. Cost: $2,236
How to help: For the 17th year, The Fresno Bee, in partnership with the United Ways of Fresno, Tulare and Madera counties, is publishing Wrap Up a Wish, a series of stories about families, individuals and organizations with special needs -- and inviting readers to help with cash contributions. It's The Bee's hope that you, after reading these stories, will help make your neighbors' wishes come true. Just use a coupon that will appear inside The Bee through Dec. 10 to designate the recipient of your donation. On Christmas Eve, we'll follow up with a report on your response to Wrap Up a Wish.
Criselda Ruiz is the mother of seven children, including two sets of twins. She says she loves all her children the same but devotes quite a bit of attention to Janessa, 7. Janessa has cerebral palsy. All the other children, ages 2 to 13, are healthy, including Janessa's twin, Jonathan.
At 6 months old, Janessa began hemorrhaging. Doctors diagnosed her with cerebral palsy, a disorder resulting from damage to the brain that can affect coordination and muscle movement.
She wears leg braces and can't walk. She speaks just a handful of words, including "agua."
"I still love her either way," Ruiz says, tears welling in her eyes. "She's my special kid." The doctors told Ruiz that Janessa needed to sit up on her own by age 5. Otherwise, it may be harder for her to eventually walk on her own.
Sitting up hasn't happened yet -- and that concerns Ruiz.
Doctors believe an EasyStand Magician, a system that helps support a child in sitting and standing positions and can be easily moved, could help the girl. The device costs more that $2,000.
Ruiz's income is limited to $486 she receives monthly from Fresno County to care for Janessa. She lives in government-subsidized housing and receives food stamps.
"It's hard every month," says Ruiz, who has been separated from her husband for six months. "After all the bills are paid, there's a little left."
Janessa previously attended Storey Elementary School, which offered therapy programs suited for her. For a while, she needed the help of oxygen tanks. She now is in the second grade at Lane Elementary School.
Ruiz says Janessa is constant with her smile. "She is always happy," Ruiz says, adding that she is hopeful that Janessa will be able to walk.
"I pray for her all the time."
The reporter can be reached at rorozco@fresnobee.com or (559) 441-6304.
Conjoined twins op 'successful'
Bangladeshi twins Trishna and Krishna, who are nearly three years old, were joined at the top of the head.
On Tuesday, Chief of Surgery Leo Donnan said both girls were "doing well" following the surgery at the Royal Children's Hospital in Melbourne.
The still photographs of the girls were taken before separation
Watch here
16 November 2009
We found we were not alone
She and husband, Bernard, are full-time carers for their grandson, Kyle.
The 12-year-old has cerebral palsy, epilepsy, asthma, global development delay and learning difficulties.
“Caring for a disabled child you tend not to go out and about as much,” says Mary, 61.
She considers the family lucky as Kyle is mobile, but she says: “People whose children are severely disabled can find it difficult to even go on the bus - simple things that we take for granted.”
That is why the Middlesbrough couple decided to join Parents 4 Change, a network that brings together parents, carers and service users to share their experiences and work alongside the professionals to find solutions to everyday challenges.
“We have learned an awful lot about different disabilities and how people cope,” says Mary. “It makes you feel as though you are not alone and it puts your own child’s disabilities into perspective.”
15 November 2009
Hydrocephalus can create balance issues for older adults
Submitted by Dr. Alis Vidinas
While you may not be familiar with hydrocephalus, chances are at some time you’ve heard the phrase “water on the brain.” This used to be what hydrocephalus was known as -- although the “water” was actually cerebrospinal fluid, which surrounds the brain and spinal cord. This fluid is what cushions our brains. But too much of it may result in dangerous pressure on the brain tissues and negatively affect how the brain works.
Some individuals are born with hydrocephalus, others develop it. Normal pressure hydrocephalus is the form that occurs most often among older adults. It can be brought on by any one of a number of factors, such as a head injury, an infection, surgery or a brain hemorrhage. Sometimes, there’s no apparent cause. If a cause can be determined and corrected, however, symptoms may improve.
As the condition progresses, the symptoms become more pronounced. In the early stages there may be changes in how the individual walks and in their ability to walk. Legs may feel weak, and the person may fall without warning.
The National Institute of Neurological Disorders and Stroke lists other possible symptoms of normal pressure hydrocephalus as headache followed by vomiting, nausea, problems with balance, poor coordination, urinary incontinence, lethargy, drowsiness, irritability or other changes in personality or cognition, including memory loss. These symptoms, and others, can vary with age, disease progression and each person’s tolerance for the condition.
Many of these symptoms also occur with other illnesses that affect seniors, such as Alzheimer’s and Parkinson’s diseases. Because of this, normal pressure hydrocephalus may be misdiagnosed. Among the tests that may be used to determine whether an individual has this condition are CT scan, MRI, spinal tap and neuropsychological exams. These tests can also rule other health issues in or out. The determination of which test or tests to use varies between individuals and will depend on a number of factors such as their age, symptoms and physical condition.
There are treatment options for persons with hydrocephalus. The most common one is a shunt, or tube, that’s placed in the brain during surgery. The excess fluid is moved away from the brain and absorbed into the circulatory system. It’s important for the patient to continue to see his or her physician regularly after undergoing this procedure to ensure that no infection has set in and that the shunt is working properly and that no adjustments are needed.
How well a patient recovers can depend on how far the condition has progressed and, of course, how well they respond to the treatment. Some people respond extremely well. As with other conditions and illnesses, early detection and intervention is important to eventual recovery. Left untreated, the symptoms generally worsen and lead to death.
When should an individual seek medical attention? It’s always important to be aware of changes to your overall health. Changes in balance, coordination and memory are among those that should be brought to your health care provider’s attention. They could be a symptom of normal pressure hydrocephalus or an indication there’s another issue that needs to be treated. Abrupt changes in someone’s level of awareness or overall mental state require immediate medical attention, and 911 should be called or the person should be taken to an emergency room.
Alis Vidinas, M.D., is a family practitioner at the Henry Ford Medical Center-Fairlane in Dearborn. For an appointment call (800) HENRYFORD.
Study looks at whether back braces offer benefit for scoliosis
11/12/2009
Scoliosis screenings in middle schools find thousands of teenagers with curved spines each year.
What happens next isn't as well planned.
Treatment for scoliosis hasn't changed in five decades — if the spine is curved to a certain degree, the teenager gets a back brace. But research has not conclusively proved the benefits of the braces.
Some young people who don't wear a brace never have any problems and their curves never worsen. Others wear the braces for years and still end up needing back surgery.
A long-term study at Washington University and more than 20 other research centers hopes to figure out why.
"If we can say that bracing doesn't change (the progression of a spinal curve) then it's a treatment regimen that we shouldn't offer," said Dr. Matthew Dobbs, a pediatric orthopedic surgeon and lead investigator at Washington University. "Why do school screenings? Why identify a child with a small curve and put them through years of bracing if it's not going to alter natural curve?"
Half of the participants in the study will receive back braces to wear at least 18 hours a day, and the other half won't wear braces. Both groups will receive regular X-rays to check their spinal curves.
Braces aren't thought to correct the curves but to prevent progression.
"But again we have no data to support that, despite all of us doing this for years and years and years," Dobbs said. "We don't know what the best treatment is; we don't know who's going to progress."
Curves that progress to 50 degrees — about 10 percent of cases — are generally thought to require spinal fusion surgery.
Dobbs predicts the research will show that certain patients benefit from bracing and others don't, depending on the type of spinal curve.
Adolescent idiopathic scoliosis occurs in about one in 1,000 teenagers, and is 10 times more common in girls. It can cause back pain, and in severe cases can affect heart and lung function.
The cause is unknown, although Dobbs and other researchers are studying the disorder's genetic factors.
Most states conduct scoliosis screenings by checking students' backs, typically in sixth and eighth grades. The Missouri health department estimates that 84 percent of schools voluntarily perform the checks. A bill working through the Illinois legislature would require the checks.
Smaller spinal curves are typically monitored by a doctor, but patients whose curves reach between 20 and 40 degrees are usually recommended for back braces.
If it's found that fewer teens need braces, the research could save money on treatments plus spare some teenagers the psychological stress of wearing a brace.
Braces are "mostly put on young teenage girls who are very concerned about appearance in general and don't want anything that makes them look different," Dobbs said.
That's why patients in the study are also monitored psychologically to see how they're handling the brace.
"If we see a child in the study who dips on their mood and mental health during the study, we need to figure out what's going on," Dobbs said.
Kelli Sargent of Belleview, Mo., has worn a brace for 20 hours every day since January, after doctors measured a 27-degree curve in her spine.
The seventh-grader hasn't let scoliosis keep her from activities including volleyball and basketball, which she plays without the brace.
But starting middle school this fall was sometimes tough when new kids asked Kelli about the brace. She also had to start changing for gym class, making it obvious that she wears it.
But "if you just act like it's no big deal," then other kids will too, she said.
Kelli does have a difficult time picking up books from the bottom of her locker and tying her shoes, because the brace can dig into her upper thighs when she bends. And now she has to buy jeans and tops a little bit bigger to fit over the brace.
Otherwise, she's gotten used to it and even nicknamed the brace "Shelly" since it feels like she's wearing a shell.
14 November 2009
Gene Therapy Technique Slows Brain Disease - Health News - redOrbit
In a pilot study of two patients monitored for two years, an international team of researchers slowed the onset of the debilitating brain disease X-linked adrenoleukodystrophy (ALD) using a lentiviral vector to introduce a therapeutic gene into patient's blood cells. Although studies with larger cohorts of patients are needed, these results suggest that gene therapy with lentiviral vectors, which are derived from disabled versions of human immunodeficiency virus (HIV), could potentially become instrumental in treating a broad range of human disorders.
Gene Therapy Technique Slows Brain Disease - Health News - redOrbit
Wheelchair-user makes council move meetings (From Darlington and Stockton Times)
The decision to meet in a ground-floor room in the Grange Community Centre was readily agreed to after a request by villager Anthony Coates.
Wheelchair-user makes council move meetings (From Darlington and Stockton Times)
12 November 2009
Accepting Your Disability - Disabilities
Accepting Your Disability - Disabilities
New brain findings on dyslexic children
The vast majority of school-aged children can focus on the voice of a teacher amid the cacophony of the typical classroom thanks to a brain that automatically focuses on relevant, predictable and repeating auditory information, according to new research from Northwestern University.
But for children with developmental dyslexia, the teacher’s voice may get lost in the background noise of banging lockers, whispering children, playground screams and scraping chairs, the researchers say. Their study appears in the Nov. 12 issue of Neuron.
Recent scientific studies suggest that children with developmental dyslexia — a neurological disorder affecting reading and spelling skills in 5 to 10 percent of school aged children — have difficulties separating relevant auditory information from competing noise.
The research from Northwestern University’s Auditory Neuroscience Laboratory not only confirms those findings but presents biological evidence that children who report problems hearing speech in noise also suffer from a measurable neural impairment that adversely affects their ability to make use of regularities in the sound environment.
“The ability to sharpen or fine-tune repeating elements is crucial to hearing speech in noise because it allows for superior ‘tagging’ of voice pitch, an important cue in picking out a particular voice within background noise,” said Nina Kraus, Hugh Knowles Professor of Communication Sciences and Neurobiology and director of the Auditory Neuroscience Laboratory.
In the article “Context-dependent encoding in the human auditory brainstem relates to hearing speech-in-noise: Implications for developmental dyslexia,” Kraus and co-investigators Bharath Chandrasekaran, Jane Hornickel, Erika Skoe and Trent Nicol demonstrate that the remarkable ability of the brain to tune into relevant aspects in the soundscape is carried out by an adaptive auditory system that continuously changes its activity based on the demands of context.
Good and poor readers were asked to watch a video while the speech sound “da” was presented to them through an earphone in two different sessions during which the brain’s response to these sounds was continuously measured.
In the first session, “da” was repeated over and over and over again (in what the researchers call a repetitive context). In the second, “da” was presented randomly amid other speech sounds (in what the researchers call a variable context). In an additional session, the researchers performed behavioral tests in which the children were asked to repeat sentences that were presented to them amid increasing degrees of noise.
“Even though the children’s attention was focused on a movie, the auditory system of the good readers ‘tuned in’ to the repeatedly presented speech sound context and sharpened the sound’s encoding. In contrast, poor readers did not show an improvement in encoding with repetition,” said Chandrasekaran, lead author of the study. “We also found that children who had an adaptive auditory system performed better on the behavioral tests that required them to perceive speech in noisy backgrounds.”
The study suggests that in addition to conventional reading and spelling based interventions, poor readers who have difficulties processing information in noisy backgrounds could benefit from the employment of relatively simple strategies, such as placing the child in front of the teacher or using wireless technologies to enhance the sound of a teacher’s voice for an individual student.
Interestingly, the researchers found that dyslexic children showed enhanced brain activity in the variable condition. This may enable dyslexic children to represent their sensory environment in a broader and arguably more creative manner, although at the cost of the ability to exclude irrelevant signals (e.g. noise).
“The study brings us closer to understanding sensory processing in children who experience difficulty excluding irrelevant noise. It provides an objective index that can help in the assessment of children with reading problems,” Kraus says.
For nearly two decades, Kraus has been trying to determine why some children with good hearing have difficulties learning to read and spell while others do not. Early in her work, because the deficits she was exploring related to the complex processes of reading and writing, Kraus studied how the cortex — the part of the brain responsible for thinking –encoded sounds. She and her colleagues now understand that problems associated with the encoding of sound also can occur in lower perceptual structures.
Northwestern University
11 November 2009
Cord Blood Reverses Cerebral Palsy in Colorado Girl - Incredible Health - FOXNews.com
But by the time she was 9 months old, Chloe was not reaching the milestones her older sister Shayla had met at that age.
Cord Blood Reverses Cerebral Palsy in Colorado Girl - Incredible Health - FOXNews.com
The Bi-College News Online » Blog Archive » What Does It Mean to “Be” Autism?
So the media covered the latest controversy—a video produced for Autism Speaks, the nation’s largest autism advocacy group – like any other episode in the decades-long saga to understand the mysterious disorder. But this debate differs fundamentally from those surrounding the role of vaccines or genetics in contributing to autism—those contest science, while this contests the core identity of what it means to live with autism
The Bi-College News Online » Blog Archive » What Does It Mean to “Be” Autism?
10 November 2009
Disabled daughter, live on web: News24: SciTech: News
Disabled daughter, live on web: News24: SciTech: News
Sci-Tech Today | A Glimpse of the Future: Robots Aiding the Elderly
Sci-Tech Today | A Glimpse of the Future: Robots Aiding the Elderly
05 November 2009
Danielle’s Foundation Empowers Special Needs Families with Free Book
PHILADELPHIA—Danielle’s Foundation, a growing non-profit organization dedicated to helping parents of children with cerebral palsy and brain injury, announces the publication of its new book, Getting the Therapy, Benefits, and Resources Your Child Needs: A Guide for Parents of Children with Cerebral Palsy and Brain Injury.
Authored by Richard P. Console Jr., one of the volunteers at Danielle’s Foundation, the book was written to help parents navigate the complexities and challenges associated with successfully raising children with brain injury and cerebral palsy.
The comprehensive, 176-page guide includes the following topics:
• Understanding your child’s diagnosis, and what it means for the future
• Funding your child’s care
• Securing effective and cutting-edge therapies
• Negotiating successfully with your insurance company
• Demystifying the often confusing world of government benefits
• Ensuring your child receives the education he or she deserves
• Estate planning for families of special needs children
“My reasons for writing this book are personal,” said Console, who helped found Danielle’s Foundation in memory of Danielle Vick, the daughter of a friend who passed away in 2008 from complications associated with anoxic brain damage at just 4 years old. “While Danielle’s life was short, it was incredibly inspirational, and though she is no longer with us, we take comfort in knowing that we can make her legacy live on forever”.
Console said the purpose of the book is to educate and empower families of children with brain injury and cerebral palsy, so they can effectively advocate for their children. While he admits that families of special needs children face difficult challenges, he feels that with knowledge and education comes hope. “Every parent wants the best for their child, but getting the benefits their child needs is not always easy, and a lot of parents don’t know where to turn for help and support. We want Danielle’s Foundation to be that guiding light to which families can turn.”
“Getting the Therapy, Benefits, and Resources Your Child Needs: A Guide for Parents of Children with Cerebral Palsy and Brain Injury” is FREE to parents who call Danielle’s Foundation today toll free at 1-800-208-3494.
Parents interested in learning more about Danielle’s Foundation, and the support and services it offers, may visit www.DaniellesFoundation.org for more information.
About Danielle’s Foundation
Danielle’s Foundation is a non-profit resource that is committed to helping families of children with cerebral palsy and brain injury gain the knowledge to secure the therapy, benefits, and resources their children need. It was created by a team of grassroots volunteers whose mission is to help parents navigate through the challenges and complexities that arise while caring for their children. Their website, www.daniellesfoundation.org, also offers hundreds of articles related to treatments and therapies, education, estate planning, and legal and financial issues. Join Danielle’s Foundation today to become a part of their support network, where parents can unite to share and exchange their knowledge to educate and empower each other via their online forum.
Contacts
Danielle’s Foundation
Kristin Testa
1-800-208-3494
press@daniellesfoundation.org
The heartbreaking case of Baby RB
By Liz HuntPublished: 6:53AM GMT 04 Nov 2009
It’s a tug-of-love case like no other. In one corner is a mother who wants her baby son to die. She believes it will save him from a life of suffering caused by a rare neuromuscular condition that means he may never move independently, and requires assistance to breathe. In the other is a father who wants the child to be given a chance, at least, of life.
In the middle sits a judge who, once lawyers, ethicists, and medics have had their say, must pronounce on Baby RB’s future. Surely Solomon had an easier decision than that faced by Mr Justice McFarlane.
For those observing this High Court drama who are swayed neither by religious belief, nor by a faith in the absolutism of medical opinion that holds Baby RB as a lost cause for whom a humane exit is the only option, it’s a tortuous intellectual and emotional debate.
I find myself ricocheting between the two positions, both of them informed by awareness of the long hours the devoted parents have spent at the child’s bedside in the 13 months since his birth. His mental development is believed to be unimpaired; the court heard yesterday claims that he responds to those around him, will wriggle his body in pleasure, and can interact with toys or when stories are read to him.
So, yes, I understand the mother’s desire to protect him. A peaceful, drug-soothed death is surely preferable to the “pitiful existence” experts say lies ahead. But how hard it is not to sympathise with the father’s refusal to deny his child an existence at all by withdrawing ventilation, as the doctors want. Doctors can, after all, be wrong.
This is not the first time that a court has been asked to decided whether a very disabled child should live or die. In 2004, in the first case of its kind, 10-month-old Charlotte Wyatt’s life was the focus of a high-profile legal battle. Born at 26 weeks, her brain was under-developed and her hearts and lungs damaged so that she had to be supplied with oxygen. Doctors wanted to let her die, rather than resuscitate her, as they had done five times previously when her breathing failed. Blind and deaf, her suffering had reached “an unbearable level”. Her chance of surviving another year was “approximately zero”.
Charlotte’s parents disputed this assessment. They said their daughter enjoyed cuddles, reacted to her musical toys, and loved to be bathed. In short, they felt she had a worthwhile quality of life, and every intervention should be made to prolong it. A judge ruled in favour of the doctors and a do-not-resuscitate order was put in place. In the event, it was not needed, Charlotte survived, confounding the experts. It was a triumph over tragedy – of sorts. Her parents split up, and she is now believed to be in the care of foster parents.
There are similarities between the cases: the damning medical prognosis, the insistence that the baby’s life is not without comfort. But there is also a fundamental difference: should the judge find in favour of his mother, and of the NHS trust that cares for Baby RB, it will be the first time that a British court has ruled against the wishes of a parent (the baby’s father) whose child does not have brain damage.
This is the fulcrum on which the debate pivots. Michael McClonas, for the NHS trust, has argued that Baby RB’s “awareness” will make his plight unbearable, “not so much now, but as he gets older and catches glimpses of what others can do”. What dangerous presumption that statement contains; that a child should be helped to die because of what might lie ahead, that his very sentience might seal his fate.
To how many others might that argument have been applied: The late writer and cerebral palsy sufferer Christy Nolan? Perhaps even Professor Stephen Hawking, who developed a debilitating illness in early adulthood? I am not an advocate of life at any price, but Baby RB’s is worth more than this.
04 November 2009
Hyperbaric oxygen treatments effective for treating many disabilities
Hyperbaric Oxygen Treatments also known HBO therapy was not intended to treat Cerebral Palsy or other brain injuries but when coupled with intensive physical and occupational therapy can be effective, according to the article.
The Hyperbaric Oxygen Treatment Center website, which can be found at http://www.hypertc.com states that the treatment has also been effective for treating Cerebral Palsy, ,Autism, Strokes, Multiple Sclerosis and sports related injuries.
HBO therapy usually involves the patient being put into an inflatable “room” which is just big enough for a person to lie down or sit up in. The air pressure of the room is usually two to three times normal air pressure and it filled with 100% oxygen. The increase in air allows oxygen to flow to the patients organs and body tissue, according to a second article about HBO therapy on www.ehow.com.
The Hyperbaric Oxygen Treatment Center states the one treatment session lasts an hour. Patients should have multiple treatments and the number will determined during an initial evaluation with their choose treatment center.
The cost varies depending on the number of treatments needed and type of chamber used. The website states that patients can read a book, listen to music, talk on their cell phone, play a handheld videogame and/or work on a laptop to occupy themselves while in the chamber.
People who are prone to ear infections, have ear canal or ear wax related problems should not have HBO treatments because the increased air pressures in the chamber can cause patients to feel pressure on their ears. It is recommended that patients try yawning and massaging their ears in order to relieve the pressure. People who are intoxicated or experiencing cold or flu symptoms should not have the treatments because it could be dangerous to them and others who use the chamber after them, according to the website.
People of all ages can have HBO therapy but it is more effective on young children because they are still developing. The Hyperbaric Oxygen Treatment center is located in Cumming Georgia. Many other medical facilities have been known to offer the treatment. People and or family looking into this type of treatment should keep in mind that because it was not intended to treat brain injuries many insurance companies will not pay for it. As noted above the cost varies. According to the first article about HBO therapy on www.ehow.com the cost can range anywhere from $100-$250 per treatment depending on the type of chamber used.
Patients and their families also have the option of purchasing or renting a hyperbaric oxygen chamber, according to the treatment center’s website. Those who are interested in buying or renting a chamber should visit http://www.vitao2.com/index.cfm for details. Please note that a prescription is needed to complete either transaction.
Patients and families looking for further guidance or who are skeptical may want to take the time to read the testimonials of patients and families find on the Hyperbaric Oxygen Center’s website.
For more info visit: http://www.ehow.com/how_4465058_use-hyperbaric-chamber-therapy-cerebral.html
http://www.ehow.com/way_5273455_hyperbaric-chamber-therapy.html
http:// http://www.vitao2.com/index.cfm
http://www.hypertc.com