Living life to the full around the world

Scoliosis study aims to determine bracing's effectiveness

2009-07-15T16:27:00.001+01:00

By Beth Miller
July 14, 2009 -- Washington University School of Medicine in St. Louis is participating in a national trial to determine whether back braces for adolescents with scoliosis, an abnormal curvature of the spine, are effective in preventing the condition from progressing and, if so, which patients most benefit.
The medical center is one of 25 sites across the United States and Canada participating in the trial, called the Bracing in Adolescent Idiopathic Scoliosis Trial (BrAIST), one of the first clinical trials in pediatric orthopedics funded by the National Institutes of Health.
Adolescent Idiopathic Scoliosis (AIS) occurs with no known cause in children from 10-18 years old. It is the most common type of scoliosis and is more commonly seen in girls. Severe scoliosis can cause back pain and difficulty breathing.
"Even though bracing to slow down curve progression in patients with AIS has been the standard of care in the United States for about 30 years, the treatment's effectiveness remains unclear," said Matthew B. Dobbs, M.D., a Washington University pediatric orthopedic surgeon at St. Louis Children's Hospital and a study collaborator. "There are patients who use bracing yet their curve progression continues, while other patients with AIS who don't use bracing do not experience any curve progression."
Participants are randomly assigned to either wear a brace at least 18 hours a day or to have regularly scheduled follow-up visits and X-rays to track curve progression. Spinal curves that progress to 50 degrees indicate a high risk for continued curve progression throughout adulthood. In these cases, spinal fusion surgery is usually recommended to correct the curve.
"The occurrence of AIS is about one in 1,000, and its prevalence is 10 to 1 in girls. Only about 10 percent of these patients require surgical intervention," Dobbs said. Patients between 10-15 years old with a curve between 20 degrees and 40 degrees have traditionally been treated with bracing until they reach skeletal maturity, which can be up to six years if the girl is 10 or 11 years old, Dobbs said.
"That means patients are wearing braces at a time in their life when they don't want to be different from their peers," Dobbs said. "It can be quite a traumatic decision, which is one reason why this study is so important. In addition, the bracing is expensive, and the orthosis needs to be refitted or replaced as patients grow."
Although the study findings could be at different ends of a spectrum — either bracing works and needs to be used for all patients with AIS, or bracing doesn't work at all and should be abandoned as a treatment —Dobbs said he expects an outcome somewhere in the middle.
"I anticipate we will discover that bracing works for certain types of curves, which means we can become much more selective in prescribing it as a treatment," he said. "Whatever the findings, however, this will be a major step forward in our understanding of how to treat this relatively common disorder."
To be eligible to enroll in the study, patients must be between 10 and 15 years old (either male or female). Inclusion criteria include diagnosis of AIS; pre-menarchal or post-menarchal by no more than one year; physical and mental ability to adhere to bracing treatment; and documented insurance coverage and/or personal willingness to pay for treatment.
Patients who have a diagnosis of other musculoskeletal or developmental illness that might be responsible for the spinal curvature or a history of previous surgical or orthotic treatment for AIS are not eligible for the study.
Once accepted into the study, patients will be followed at Washington University School of Medicine and St. Louis Children's Hospital. Two visits per year are required for X-rays and evaluation.
For additional information regarding the study and inclusion criteria, contact the research coordinator at (314) 454-4113.

Hyperbaric therapy shows promise for autism treatment

2009-07-12T12:26:00.003+01:00

Elizabeth Diffin/Medill
They look like submarines or spaceships. But have you ever wondered what it's like INSIDE a hyperbaric chamber for oxygen therapy? The Midwest Hyperbaric Institute in Bolingbrook offers a peek inside a device used to help treat wounds, neurological disorders, cerebral palsy and, increasingly, autism.

by Elizabeth Diffin

It could be any after-school program or day-care center, with a set of twins playing tug-of-war with a pillow and a serious-looking boy watching a television program. But what makes this room different from the typical cookies-and-juice session is the fact that these children are encased in large acrylic tubes where they’re breathing pressurized, oxygenated air.
These children have been diagnosed as being on the autistic spectrum, and they’re receiving a controversial treatment – hyperbaric oxygen therapy – in the hope that it will improve their autistic symptoms and behaviors.
A study published in March found that hyperbaric oxygen therapy, in which air is pressurized to simulate deep-sea levels, may be a viable treatment for autism. The research showed improvements in autistic children who had the therapy, particularly in their overall "autistic functioning," such as receptive language, social interaction and eye contact.
Dr. Dan Rossignol, a family practitioner in Melbourne, Fla., who authored the study, has two autistic children of his own. In 2006, after "buzz" began to build about hyperbaric oxygen therapy in kids with autism, he and his wife decided to try it for their younger son, who had only been speaking single words. After about 20 hyperbaric treatments, the boy began to put together three to four word sentences, piquing his father’s interest in the topic.
However, when Rossignol, who has a hyperbaric chamber in his clinic, began to look into research on hyperbaric oxygen therapy for autism, he said he was surprised to see there weren’t any double-blind controll studies on the topic. So he decided to do his own and published the results in BMC Pediatrics, an open-access online journal.
Doctors at Midwest Hyperbaric Institute in the southwest suburb of Bolingbrook, have been using hyperbaric oxygen therapy with autistic children for the past five years. In addition to the traditional uses of hyperbaric oxygen therapy – such as wound healing and decompression sickness – the facility has pioneered treatment for neurological conditions like cerebral palsy, stroke, multiple sclerosis and autism.
The facility traditionally has five or six children undergoing treatments during the same time period. The children have 40 sessions, called "dives," at 1.3 to 1.5 atmospheres, take a break for four to six weeks, and then return for 40 more dives. By the end of the 80 one-hour sessions, parents, doctors – and even independent therapists – say they notice some sort of improvement in the autistic kids.
In fact, Dr. August Martinucci, the medical director of Midwest Hyperbaric Institute, said that in the years he’s been treating autistic children with hyperbaric oxygen therapy, it’s always proven effective.
"I’ve never seen one [child] with no improvement whatsoever," Martinucci said. "It might have been minor, but there have been changes."
He does caution, however, that hyperbaric oxygen therapy is not the autism cure-all and that it works best in conjunction with the other more traditional therapies.
According to Martinucci, there’s not a single "silver bullet" that will be a cure. "It’s a spectrum disease," he said. "You have to have a spectrum of treatments."
Parents admit that they’re willing to try almost anything to help their autistic child improve.
Brian McNally, whose 6-year-old son, Sean, was diagnosed with autism about four years ago, said the boy is on a variety of medications and supplements, goes to physical and occupational therapy, and adheres to a strict diet.
"We’re throwing the kitchen sink in to see what sticks," McNally said.
But he said that in the 28 sessions Sean has undergone, he’s already exhibited signs of improvement. Sean makes eye contact more often and obeys directions. He just learned to ride a bike. And next school year, he will be part of a partially-integrated first grade class, participating in classes such as art, music and lunch with the so-called "normal" children.
"They’re tiny gains," McNally said. "But all the tiny gains add up."
Skeptics say that these supposed gains may simply be a case of the placebo effect, with parents seeing an improvement only because they’re looking for one. In traditional drug studies, the placebo effect is observed when the participants taking a "sugar pill" report medical improvement.
In Rossignol’s study, a striking 73 percent of parents with children in the control group rated their child as improved, without knowing they hadn’t been given true hyperbaric oxygen therapy.
"The placebo effect is very powerful," said Dr. Alan Rosenblatt, a Chicago neurodevelopmental pediatric specialist. "I think when there is no cure, anything is a cure."
Rosenblatt said his skepticism is rooted in his own understanding of neurophysiology, as well as the success he has seen as a result of behavioral interventions in very young children. He said the research community might be better served by focusing on the more proven therapies, and their theoretical foundations, when it comes to treating autism.
"You have to have a healthy dose of skepticism even for a proven therapy," Rosenblatt, who is on faculty at Feinberg School of Medicine, said. "More understanding of the underlying mechanisms of the disease will lead to the most meaningful interventions and treatments."
In fact, no one knows for sure why hyperbaric oxygen therapy might cause the improvement so many parents and therapists have noticed. But Martinucci speculated that the increased blood flow from the hyperbaric oxygen therapy acts as an anti-inflammatory agent that soothes the swelling many autistic children suffer from in their brain and gastrointestinal tract.
Patients being treated for a variety of conditions also mention the increased "clarity of thought" brought on by the hyperbaric oxygen therapy. Jennifer, who asked that her last name not be used, is the mother of 3-year-old autistic twins being treated at Midwest Hyperbaric Institute.
"Both of my kids seemed less foggy," she said. "They were looking at me and getting it. They seemed more ‘plugged in.’"
And the energetic boys running down the hallway to "blast off" in the spaceship-shaped hyperbaric oxygen therapy chamber certainly seem a far cry from the withdrawn children their mother described.
"They love it here," she said, noting their roughhousing in the hyperbaric chamber.
Indeed, many autistic patients seem to do particularly well when it comes to hyperbaric oxygen therapy, Martinucci said. Children who benefit from deep pressure find the treatment soothing and some of them have mentioned that their heads "feel good" after the treatment.
"We have more problems with the parents than with the kids," Martinucci said. "The kids are happy to go in there."
Of course, there are bigger problems than overprotective parents when it comes to the application of hyperbaric oxygen therapy to autism. Rosenblatt doesn’t think that Rossignol’s study is conclusive enough for him to recommend to patients.
"I can’t say it’s a proven therapy for autism," Rosenblatt said. "But I do think we ought to take this study seriously and challenge people to replicate it."
Rosenblatt said that he’s happy the researchers attempted to do a double-blind study, something that is notoriously difficult with a spectrum disorder. But he said that if the research is able to be replicated – preferably by a more authoritative academic center – it’s more likely to be embraced by the mainstream medical community. But until that point, he said he would recommend parents to focus on the proven interventions, such as behavioral and speech therapies.
"My advice would be to put neurodevelopmental therapies at the center of your total therapeutic package," Rosenblatt said.
And if patients are insistent on trying other treatments, Rosenblatt said to explore them one at a time to determine their true impact.
"Many parents won’t feel comfortable until they’ve tried every possible intervention to help their child," Rosenblatt said. "My heart goes out to these parents. I don’t envy them their choices and decisions."
Many of those same parents are hopeful that increased study of hyperbaric oxygen therapy in autistic kids will have a different sort of benefit: the financial kind. Hyperbaric oxygen therapy treatments are expensive – a set of sessions can cost several thousand dollars – and many insurance companies aren’t willing to cover them because they’re considered "off-label."
Tina O’Sullivan, whose 17-month-old son, Sean, is being treated for a brain injury – not autism – at Midwest Hyperbaric Institute, said the insurance payments are a constant battle.
"Insurance covers certain things," she said. "But these treatments are essentially his first year of college."
Rossignol said he hopes that if his study is able to be reproduced, it might open the door to additional approved treatment options for autism. And he believes that in the long-run, those treatments will have a larger benefit.
"If we can come up with treatments that lead to improvements, the savings to society could be huge," Rossignol said. "If these studies continue to come out, it might become a standard treatment."
But in the meantime, he hopes that for the people who can afford to pay for hyperbaric oxygen therapy, his study provides some reassurance.
"If parents want to do this and have the money, it certainly seems to be safe," Rossignol said. "Parents can know it’s not going to be harmful."
In fact, he said that the main finding of the study was that the hyperbaric oxygen therapy was well-tolerated by most children. And he was quick to point out that although they did observe some gains, there were some kids who didn’t necessarily improve, which was expected.
"Within a study, there’s always going to be some who improve and some who don’t," he said. "We take a reasonable approach: This is a promising treatment."

Elizabeth Diffin/Medill
Sean McNally, a 6-year-old with autism, is more than a quarter of the way through his hyperbaric oxygen therapy. His parents and teachers have noticed positive results.

Research looks at hyperbaric treatment and autism
The hyperbaric oxygen treatment study for autism, published in the March issue of BMC Pediatrics, was a double-blind, controlled trial.
Dr. Dan Rossignol and his colleagues studied 62 children between the ages of two and seven who received 40 treatments over the course of four weeks. The treatment group had hyperbaric oxygen therapy with air pressurized to a standard 1.3 atmospheres (the rough equivalent of deep-sea diving to 10 feet), while the control group breathed only slightly pressurized air to mimic the other treatment.
The children, their parents and the evaluating physicians did not know which group the children were in. The hyperbaric technicians, who had no input into the treatment, were the only ones aware of each child’s status and were instructed to keep it secret.
At the beginning and end of the study, the parents and physicians filled out standardized scales rating the child’s functioning in several different areas. The evaluations were then compared to determine whether the child had improved as a result of the therapy. Children in the treatment group scored significantly better on the Clinical Global Impression scale, with the greatest improvements found in overall functioning, receptive language, social interaction and eye contact.
Analysis done after the study’s completion revealed that higher-functioning autistic children, who initially scored in the top 50 percent of the scales, showed the fastest improvement. Children over the age of five also showed greater advances than their younger counterparts.
Rossignol was quick to point out that those results need to be studied further to determine if they are a "true finding."
"We don’t know for sure why [the therapy] worked," he said. "But the nice thing about this study is that a condition that’s felt by most people to be untreatable is showing potential improvement. We’re not saying this is an answer or a cure. But it might be good in some children. It’s promising."

Extending Boundaries at BBLive 09

2009-07-12T10:58:00.004+01:00

A chance phonecall from Julia La Garde, Business Development Manager at Physiofunction, lead to Physiotherapy and FES being a headline feature at Beyond Boundaries 2009.

Held at the site of the Farnborough Airshow over the weekend of 4th and 5th July, Beyond Boundaries attracted over 4000 visitors including many young disabled people and their families seeing how they could extend their Boundaries.

There were opportunities to have a scuba dive,rock climb, and get round various adapted army assault courses. Wheelchair users were treated to the Pimp My Wheelchair attraction – a fun take on the MTV show, Pimp My Ride.

The show feature though was Physiotherapy and Functional Electrical Stimulation (FES) for Foot-drop.

Jon Graham, Clinical Director at Physiofunction. “We have seen so many of our clients extend their boundaries with FES – hill-walking, golf, tennis and taking up Triathlon following strokes, head injuries and incomplete spinal injuries. Mark Brewster, event organiser, immediately saw the potential for FES as a show feature and created the PHYSIOZONE”

Jon Graham showing Paddy Rozier who has bilateral footodrop from MS how much easier walking can be with FES

The PHYSIOZONE had three booths where visitors could have free assessments using FES systems from Odstock Medical (OML) and Bioness. It was OML’s original team at Salisbury District Hospital that produced the first practical solution for treating drop foot.
This January saw the NICE guidelines published which declared FES as a safe and effective treatment for people with drop foot caused by damage to the brain or spinal cord. However, a frustration with current FES systems is the wiring from the trigger switch to the stimulator and from the FES unit to the electrode pads that stimulate the muscles to lift the foot at the ankle. Users also struggle with placing the electrode pads on the correct position on their leg to obtain a functional foot lift.
Charlotte Standing struggled through heat and M25 traffic jams to try out the wireless FES system from Bioness.

Jon Graham, Clinical Director and Charlie King of Physiofunction South Yorkshire assessing a patient for wireless FES

In a week that saw the end of Britain’s Tennis dream with the defeat of Andy Murray in the semi- finals, Physiofunction worked with Ian Payne, National Youth Wheelchair Champion

GB Wheelchair Tennis Champ, Ian Payne extends his boundaries with the SaeboReach

“The PHYSIOZONE also gave us the opportunity to give free demonstrations of the other innovative technology that is available to assist with recovery” said Jon Graham, “Ian has cerebral palsy and movement restriction in his left arm is hampering his serve and his courtside wheelchair mobility. The Saeboreach by engaging the user in functional rehab programme using a dynamic upper limb splint will help them control spasticity and regain lost movement patterns.

Originally started in 1999, Physiofunction has become the UK‘s leading provider of private outpatient and community rehabilitation with a current coverage from North Yorkshire to its newly opened clinic at the Oxford Centre of Enablement.

“We use specialised Neurological Physiotherapy techniques, including Bobath and Charlie King’s NET system, and Innovative technology to maximise our clients independence,” Jon Graham , founder and clinical director.

“We obtained a trademark for providing Physiotherapy services, and plan to develop a Nationwide Neurological Physiotherapy service through by expanding the numbers of our existing branches and also through our proven franchise system. Our pilot franchise in North Yorkshire demonstrated the potential of franchising for those starting out in Private Practice and those wanting to extend their existing practice to new levels.”

Charlie King, a private practitioner of 12 years standing says:’ I could immediately see the benefit of joining a franchised business. As expert clinicians we have the clinical skill training to helping our clients achieve their rehab goals. However, we don’t have the time or often the opportunities to develop business skills including sales, marketing, PR and Recruitment, let alone payroll and VAT. I joined the franchise in April 2009 as Physiofunction South Yorkshire and have already seen my business develop. If I can grow my business, I can help more people and also help develop the skills of my employees by developing my role as a clinical consultant whilst the franchisor takes the stress and distraction of running my business away from me’

Foot drop and FES:
Foot drop is the inability to lift the foot at the ankle. It can be caused by damage to the brain and spinal cord through stroke, head injury and spinal injury. FES uses electrical stimulation to activate the muscles that lift the foot via either surface or more rarely implanted electrodes. A discrete switch usually worn under the users heel triggers the stimulator at the appropriate time to assist the user clear the ground as they swing their affected leg forward.

FES cannot usually help where drop foot is caused by damage to the peripheral nerve eg: diabetic neuropathy.

FURTHER INFORMATION:
http://www.bblive.co.uk/
http://www.nice.org.uk/nicemedia/pdf/IPG278PublicInfoWord.doc

http://www.physiofunction.co.uk/
http://www.bioness.com/
www.odstockmedical.com
www.saebo.com

The 2 days spent ‘Spreading the word’ was one of the busiest features of the event.We have always offered to come and do similar days at any support groups – only a few of you have booked us

the offer is still available for free – let’s together spread the word and at least get people an assessment and trial so they know as soon as possible if it will work for them!!

Julia

PhysioFunction

Deep Brain Stimulation Promising Treatment for Cerebral Palsy

2009-07-12T10:40:00.002+01:00

Posted on: Tuesday, 7 July 2009, 06:59 CDT

Deep brain stimulation may improve movement and quality of life in patients with a subtype of cerebral palsy (CP) and could be an effective treatment option. Cerebral palsy with dystonia-choreoathetosis is a common and progressively disabling disorder in children and adults for which no effective treatment currently exists.
Bilateral pallidal deep brain stimulation (BP-DBS), a surgical procedure in which electrodes are implanted to stimulate parts of the brain to reduce involuntary movements and tremors, has been shown to be an effective treatment for primary generalized dystonia. However, the effect of this treatment on a secondary dystonia such as dystonia-choreoathetosis is not clear.
To investigate the effect of BP-DBS on movement skills, functional ability, and quality of life, Marie Vidailhet and colleagues of Salpetriere Hospital, France, implanted leads in the globus pallidus internus (GPi) area of the brain of 13 patients with dystonia-choreoathetosis CP. All patients were evaluated for changes in the severity of dystonia-choreoathetosis using the Burke-Fahn-Marsden dystonia rating scale before surgery and again after 12 months of continuous neurostimulation. Quality of life, cognitive function, and mood also were assessed.
After one year, BP-DBS resulted in improvement in the Burke-Fahn-Marsden dystonia rating scale movement score in a majority of patients. Eight patients showed between 21 percent and 55 percent improvement; two patients showed little benefit; and three had no benefit or deteriorated slightly.
Importantly, functional disability, pain, mental health-related quality of life, and social interaction seemed to improve, and there was no worsening of cognition or mood.
The authors report one key factor to a good outcome is the optimal placement of leads in the GPi area of the brain. Patients with leads positioned outside the boundaries of the GPi showed no beneficial effect.
Despite promising findings, researchers note that the study involved a small number of patients and should be interpreted with caution. They call for further studies to evaluate the effect of DBS on more complex and common types of CP, particularly in children.
SOURCE: Lancet Neurology, July 2009
Source: Ivanhoe

When a rolling walker is a transport wheelchair

2009-07-05T12:10:00.001+01:00

July 2, 4:41 PM · Kathryn Arbour - Denver Mobility Products Examiner

Physical therapists and durable medical equipment (DME) manufacturers and dealers have spent a lifetime telling people NEVER to use a rolling 4-wheeled walker as a wheelchair. The traditional A-frame design of these ubiquitous and mighty machine

s is not designed to be pushed or rolled in any direction with someone perched on the seat. The advantage of a rolling 4-wheeled walker with brakes and a seat is that it offers a resting option for the user who may tire easily and often. Many falling injuries occur as elders try to scoot themselves while seated on these walkers.

However, all that great advice is about to change with the arrival of combination rolling walkers/transport wheelchairs. Long on the radar screen of DME manufacturers from a design perspective, the actual translation of the design into manageable pieces of mobility equipment has taken longer than most would have guessed. Some of the earliest models as recently as five or six years ago required so much manipulation for the transformation that some claimed a degree in engineering was necessary. And, weight is always a problem with DME products whose users already have physical challenges of one sort or another.
Things changed last year as a number of manufacturers cracked the code and produced some of the first viable combination units. This review examines versions created by three different manufacturers, American Bantex, Drive Medical and Medline.
American Bantex calls their unit simply a combo walker/transport chair. It sports the A-frame typical of rolling 4-wheeled walkers. When converting to a transport wheelchair, the back rest pops out of one side and into the other. Two footrests stay folded against the side of the walker ready to pull down into position once the individual is seated. The look is attractive and unobtrusive and the actions needed are minimal to create the transformation. The one difficulty occurs with steering. Rear swivel wheels that work well as a walker create some frustrations as they become front wheels of a transport chair. The individual pushing the unit fights against these unwieldy wheels. As one of the first to market, however, at a very reasonable price point, the unit sells well and users accommodate this quirky feature.
Drive Medical also released their version, dubbed Duet, in 2008 with a few big improvements over the American Bantex. All four wheels are the same. By using larger wheels, the unit moves more smoothly both as a walker and a transporter. This manufacturer also developed a footrest that swings out of the A-frame, keeping it tucked out of the way when the unit is used as a 4-wheeled walker. The backrest is sturdier and layered with extra foam. This unit also has two handles that fold out to use as armrests when in the transporter mode. These two features alone provide more comfort to the individual. The unit weighs about the same as the American Bantex version and looks quite similar, although the folding mechanism is tight and offers challenges to typical users.
Medline, a family owned U.S. business and one of the largest provider of medical supplies and related products, is introducing its version, The Translator, this summer in a few U.S. markets. The earliest version offers a number of advantages over its competitors. First and foremost, it is considerably lighter in weight with a nylon seat and backrest and a lightweight aluminum frame. The backrest simply flips over with the simplest of movements. Medline uses the footrest design popularized by American Bantex. The unit is wider, which is both a plus and a minus. A wider seat is more appealing to a large number of users. A wider frame, however, makes it difficult to maneuver easily through stores and the insides of many older homes. Of the three models this one is by far the easiest to transform. However, of the three it is also the most difficult to fold. The seat is firmly anchored in seat guides that are exceptionally tight. While this ensures a solid sitting surface, it makes it virtually impossible to fold without assistance. Once folded, though, the Medline Translator is the lightest weight model on the market and can fit easily behind the seat of a car. No heavy lifting required.
As one of the newer DME products to hit the marketplace, the combined rolling walker and transport wheelchair is welcomed by individuals and caregivers alike. The product will not eliminate the widespread popularity of both the rolling 4-wheeled walker and the transport wheelchair, but offers a satisfying solution for families who are looking for a single solution. There is an MSRP price point differential of about $50 among all three models, although dealer pricing varies widely, especially on the internet.
For more info:
See the Drive Medical Duet
Read more about walkers
A local retailer changes one woman's life with a transport chair

Author
Kathryn Arbour is an Examiner from Denver. You can see Kathryn's articles at: "http://www.examiner.com/x-10736-Denver-Mobility-Products-Examiner

Finding a lasting love Over looking the difference

2009-07-05T04:10:00.002+01:00

I'm amazed something so simple,like finding a female friend, who is as black and white as I am ,who accepts a person for who he is not a comparison to Tom Cruise or their last boy friend who was the life of the party and the "Bad" boy appeal that women (many ) seem to go for ,then wonder why they cheat on them or control them.
Being a Guy with a few obstacles due to being born with Cerebral Palsy ,I know I'm no Hunk!Yet I have managed on my own with little or no assistance from GOV. I have always worked and been a sole bread winner . working to provide all I can while significant others did their own thing mostly took advantage. But people who see those of is (differently abled) doing everything to be a part of "normal" society.See strong capability,what they seem not to understand is the tremendousamount of energy we exhaust physical,mentally and emotionally to minimize our challengesthus after a while we begin to crash.When the Once strong and cabapble is now showing some need for spousal help .which should be their anyway yet most women compare to the average mans ability . not to the Challenged persons" ability of ease.
For those people who are empathetic to the difficulties in relattionships of the differently abled I apreciate all you do .I am one who never gives up hope .I Know someday I strong ,attractive (inside ,outside) woman ,a queen shall appear sometimes I just need a push in the right direction and confidence to not worry about what "if"

Disability Advisory Group part three

2009-07-03T16:35:00.001+01:00

Theatre Group
Come along to a Theatre group for adults with disabilities on a Tuesday from 4.30 till 6pm at Rievaulx resource centre Rievaulx Avenue, Billingham. Cost-£1.50
For more information please call 07728382442 or email amy.Stubbs@stockton.gov.uk

Childcare Consultation

Stockton-on-Tees Borough Council has a duty to ensure there is sufficient good quality childcare across the Borough to meet the needs of parents and carers, and their children, and which supports the wider social and economic development of the town.
To meet this duty The Children and Young People’s Strategy Team are carrying out consultation with parents/carers of children with disabilities and/or special needs to determine if there are any gaps in childcare provision and to identify any barriers to take-up of formal childcare.
Questionnaires have been handed out to parents for completion at various events/venues over the last couple of months. Once all questionnaires have been received the findings will be analysed and the results fed back to parents via various channels.

I would like to thank all those parents/carers who have already completed and returned questionnaires.

Childcare Business Support Manager
Phone: 01642 527208

Independent Living

The Council’s Independent Living team have updated their website to include details of different services and groups available as well as a News and Events page. To access this choose I for Independent Living from the A-Z of services. Or for more information contact the Independent Living team on 01642 527056 or email: Independent.Living@stockton.gov.uk

Disability Advisory Group part two

2009-07-03T16:32:00.002+01:00

Information on ‘Fun Sporting Activities for All’

Multi Sport Club-
Date: Tuesday Evenings
Time: 6pm—8pm
Venue: Blakeston School, Junction Road, Stockton on Tees, TS19 9LT
Cost: £2 per session

The club is open to all ages for people with a disability who are wheelchair users.

Football Coaching Sessions 16+
Date: Thursday Evenings
Time: 7pm—8pm
Venue: Northfield School, Thames Road, Billingham, TS22 5EG
Cost: £2 per session

The football sessions are open to adults with a disability or special educational need

For further information on either football coaching or multi-sports club please contact: 01642 528510

Recycling, making it as easy as can be

Do you have a disability that makes recycling in your home difficult?

If the answer is yes, then hopefully we can help. Using the kerbside recycling facilities couldn’t be easier, and we can offer you help if you:

· Struggle to put your box or bags out for collection

· Can’t manage with the current size of the boxes and bags

· Find it difficult to read the literature in the current format offered

· Have difficulty putting your wheelie bin out at the kerbside

Just contact us on the details below for assistance:

Phone: 01642 395919
Visit: Environment Centre, 21 West Row, Stockton, TS18 1BT
Email: careforyourarea@stockton.gov.uk
Log on: www.recycleforstockton.co.uk

Disability Advisory Group part one

2009-07-03T16:20:00.004+01:00

As you may of read a number of posts ago I had become a memeber of the Disability Advisory Group for Stockton on Tees. I am now able to share with you our latest newsletter. I will post it over a number of entries as it is quite long:

Welcome to the latest edition of the Disability Advisory Group newsletter

Access to Cycle Ways

a brief update was provided on access to cycle ways and the use of tactile paving. Towards the end of summer 2009 a survey of all routes will be completed and over the autumn/winter areas for improvement will be identified. Members of the group were positive about the use of tactile paving to guide them along existing routes.

Cleveland Fire Brigade

Disability Advocates for Cleveland Fire Brigade came along to meet members of the group, they explained to the group about home fire safety visits, where a home visit takes place to develop a plan with each person on how to safely get out of your home in an emergency, free smoke alarms will also be fitted if necessary-call 01429 874063 to arrange a visit.

People who are Deaf or have a hearing impairment can get access to vibrating smoke alarms.

Everyone should check the batteries on their smoke detectors, when the Fire Brigade fit alarms they trigger a re-visit in five years time to check the equipment provided. A member of the group expressed their gratitude for the work that the Fire Brigade has done, in particular to the Winter Warmth scheme which they said saved their life during the particularly cold period at the beginning of this year

For more information or advice please contact the advocate’s team using the details below:

Phone 01429 872311
Minicom 01429 874053
Post Cleveland Fire Brigade Headquarters, Endeavour House Stockton Road, Hartlepool, TS25 1JE

Stockton User Representative Group for Employment (SURGE)-Mental Health Issues

A representative came to talk to the group to challenge the myths and misconceptions that surround mental health issues. Some of the facts include that every year 1 in 6 people are affected by a mental health problem at any one time and the Mental Health Foundation estimates that 70 per cent of recorded suicides are by people experiencing depression, often undiagnosed.

SURGE is an independent user group that aims to raise awareness about mental health issues in the area, promote social inclusion and positively influence how mental health services are delivered within Stockton.

If you are interested in joining SURGE or would like more information, please contact us. Telephone: SURGE Office on (01642) 647744 or the Involvement Worker on (01642) 352914 Post: SURGE, Norton Community Resource Centre, Somerset Road, Norton, Stockton-on-Tees. TS20 2ND

The Mind Maze Volunteering Project

Christine Coulman and Paul Christon came along with representatives from the Mind Maze Volunteering Project to let people know of the opportunities available to volunteer as a mentor or get support as a mentee. It was an inspiring session with people sharing what a tremendous impact their involvement in the project has had, with positive and motivating stories.

Working across the Borough of Stockton and Middlesbrough the project supports people with mental health problems and their carers to enable them to make progress in their lives and achieve independence. We do this through the provision of one to one support and structured group activities.

For more information please use the details below:
Phone: 01642 633525
Email: christine.coulman@middlesbroughmind.org.uk
Address: Stockton Business Centre, 70 Brunswick Street, Stockton-on-Tees

Scoring Your Scoliosis

2009-07-03T15:55:00.000+01:00

Your child goes in for a school physical and you walk out with an appointment to see a scoliosis expert. It's a situation that's all too common. Many parents are left to wonder whether surgery is in their child's future.
But parents are now getting their answer, thanks a new test.

A scoliosis diagnosis is common in young children and often a brace is used to help correct it. But now a new test can tell you whether it's going to get better or worse.

Medical technology has come a long way. Now saliva in a vile can rate your child's scoliosis.

“The score is designed to tell us whether the patient's curve is going to stay the same or progress as they get older, " Dr. Geoffrey Haft, a scoliosis expert with Sanford Clinic Orthopedics & Sports Medicine, said.

Haft says the DNA test helps to guide a patient's treatment. And 13-year-old Madison Michels is a prime candidate.

Her score is 163, which means her scoliosis is considered moderate to severe. It also means she'll have to wear her brace a while longer.

"I don't really mind it as long as it corrects what my spine is doing,” Madison said.

“The test helped my husband and I find out exactly how serious her scoliosis is and the severity of it and what we need to do,” Madison's mom, Jolene Michels, said.

Looking at an x-ray, you can see how her spine curves without the brace. But when she has it on, her spine is nearly straight. Dr. Haft says the test can hopefully keep his patients from having surgery in the future.

“In the worst case, the curve gets to be over 50 degrees. We have ways of measuring curves and we put a number to it. Curves that are over 50 degrees tend to progress throughout adulthood and we end up doing surgery on those patients and fusing the spine, straightening it out so that it can't progress,” Haft said.

It's a surgery Madison and her family hope her brace will help her avoid.

“It's nice to know that test has said she needs to be wearing this and so we make sure that she does,” Jolene said.

Sanford is one of 42 sites testing the ScoliScore product. It won't become available to the entire orthopedic community until this fall.

Do we know the power of Yoga?

2009-07-02T17:34:00.001+01:00

Caroline Phillips
24.06.09 One woman has thrown away the wheelchair to which she was confined for two years.

She suffered from ME (chronic fatigue) for 15 years and now, confounding medical orthodoxy, is symptom-free.

Another patient says he endured asthma intermittently for 30 years - and is now cured.

Improbably, both say their transformation is down to yoga. They are not alone, because many major health benefits are now being claimed for the discipline.

The number of people practising in Britain has tripled in the past decade and now the first NHS yoga facility in a primary healthcare centre has opened in London's Kentish Town.

"It specialises in yoga for diabetes, back pain and breathing difficulties," says its founder, biochemist Dr Robin Monro, also founder of the Yoga Biomedical Trust, which runs clinical trials into yoga and offers lessons.

A recent study showed that yoga can significantly lower levels of triglycerides - the fats in your blood which if elevated can lead to heart disease.

Another concluded that yoga can increase brain gamma-aminobutyric levels, which when lowered are associated with depression, anxiety, epilepsy and even Alzheimer's.

It's also known to lower blood pressure, cholesterol levels and improve memory, sleep, energy, gastrointestinal function and tolerance to pain. In some instances, chronic pain can be eliminated.

Jo Manuel is a practitioner who helps sufferers of illnesses from muscular dystrophy to Parkinson's.

In 2004, she founded the Special Yoga Centre and launched Yoga for the Special Child, a unique service in Britain for disabled children.

For a small, charitable facility in Kensal Rise, it punches way above its weight - Jo's techniques have been adopted by all New York's special-needs schools.

It was to the SYC that Samantha Cameron took her and David's late son, Ivan, who suffered from cerebral palsy and epilepsy. "Sam said yoga helped her son relax and find more peace in his body," says Jo.

Last month SYC held a charity art auction and raised a whopping £100,000 - with artists from Marc Quinn to Sam Taylor-Wood personally donating works - to fund its work.

Television presenter Gaby Roslin said: "I've watched Jo working with autistic children. I'm astounded by what she achieves with kids who can't normally even make eye contact or sit still."

The centre teaches several forms of yoga, from ashtanga to kundalini, in general classes and has 40 instructors.

There are special classes for adults with everything from ME to MS and sessions for pre-natal teenagers. Jo's speciality, a hatha-based practice, is the one she uses to treat 350 special-needs children a week.

Jo believes yoga has a positive effect on even the most serious illnesses. Fiona Agombar, a former high-flying executive and author of Beat Fatigue Through Yoga, is one of the centre's teachers.

"I had ME for 15 years, I was in hospital for months with appalling fatigue and muscular pain, and in a wheelchair for two years.

"The medical view is that after five years with ME, you don't get better," she says. "With yoga, I've become symptom-free. Last year I went trekking in Nepal."

So can yoga cure any illness? "MS, for example, isn't going to be stopped by it," says Jo. "But it can slow the degeneration and help sufferers manage the pain. I also see Down's children meeting their developmental milestones earlier than those who don't do yoga."

Dr Monro believes more investigation is necessary if yoga is to be accepted as a part of everyday healthcare.

For Jo, however, success is measured in smaller steps, such as when the mother of one disabled girl who attends SYC told her recently that thanks to Jo's yoga classes her daughter had slept properly for the first time in nine years.

Special Yoga Centre, The Tay Building, 2A Wrentham Avenue, NW10 (020 8968 1900, www.specialyoga.org.uk).

Pamper Evening 26 June, 5pm-10pm, £5 entry fee, treatments from reflexology to Indian head massage.

For donations visit www.justgiving.com/syc/donate

Writing for This Publication

2009-07-02T17:18:00.000+01:00

It hardly seems possible that I have been writing for Audacity Magazine for well over a year, now. Every article I have written has been a new challenge. Every article, I have written, has been as different as the article before. And every article I write comes from a place of understanding, compassion, and a sincere honesty to enlighten the public. I would definitely have to say, however, that they have all been like every other article in this magazine; connected with the one purpose of exploring the daily lives and feelings of the disabled community.
In a big, way, attempts have never been made to move beyond daily living skills, to understand and explore the other aspects of our lives. Thus, these articles, which I have written, have been crafted, created, and revealed to the public so that light may be shed. I have seen articles here, on everything from learning to drive, to romance, travel, and remembering the great leasers of our past. I don’t know other than blogs, of a place, in which the great leaders of our community could gather together and express exactly what was on their minds. This is invaluable, because it reminds all of us that we are not ever alone.
My experience, writing for Audacity Magazine, has not only made me more determined to move forward with my own life, but to experience writing for a prestigious magazine, when at one time, three and a half decades ago, I could not even form a constructive sentence by myself. To be accepted by Natashasa, has not only been a powerful experience for me, but it has reminded me that I was right! I clung to the belief that I could learn, and I did. I clung to the belief that I had a right to an education and I got one. And, I clung to the awareness that I was going to make a mark on this world. And, just like all of you, I have! I have determined, in the depths of myself that, no one was going to define my personhood. No one was going to tell me, or make me believe that I was less than what I was. No one was going to take away the healthy self-esteem and autonomy I fought for. But writing for this magazine has taken me a step further. Each time, in every way, that I write another article, for this magazine; I am reminded of my own progress, and, I am reminded of all the other valuable gifts I have to share with the world.

The birth of a magazine

2009-07-02T17:12:00.000+01:00

What does it feel like to give birth to something that no one else has ever conceived of? And what does it feel like to bring to the forefront idea’s that could change disabled men and women’s lives for ever? Well, I’ll tell you. I think it takes a dedicated, in-tune, and highly motivated person to bring ideas to the front- line of society which no one else has had the courage to challenge.
The birth of Audacity Magazine has opened the doors, I’m sure for many. Not just for those writers, like me, who have some kind of physical disability or special needs who audaciously want to make this not only a better place for others, but also wants to bring a cutting-edge approach to those issues at hand, that affect so many of us; which are so easily swept under the carpet. But, also, has brought food for thought for 6 years now to all of its readers and subscribers.
This magazine has brought to its readers a cheeky, daring, and fearless way of approaching the truth from a different perspective and point of view. Its angle has come from the disability community. Its thoughts! Its words! And, all its power! Focusing, directly, on the issues of the day-
I’m sure; the birth of this magazine took to heart all the issues and fragile topics of its disabled population. I’m sure, that when the first issue appeared online; it was a very happy, joyous, momentous, occasion. I’m sure it brought an inward satisfaction to Natasha, the founder of Audacity. To see something materialize, from nothing; and to be shaped, formed, and molded from scratch, that truly, must have been gratifying, indeed. And, to be so focused, so dedicated, and so committed to nurture, and develop, story after story, month after month, year, after year, took much planning, much pride, and much perseverance.
To have the ability to not only write, and to educate, but to shape and influences other people’s thoughts and views is highly commendable. It takes a person with great vision to broaden one’s opinion and scope- it takes an idea, an act, and a concept to bring such a dream to pass. It took a creative energy, to bring about the birth of this magazine. Thus, let’s light Audacity’s birthday cake with 7 brightly lit candles, to light its way for its fruitful year ahead.

The Blues: is it in the Disability Community, Too?

2009-07-02T17:08:00.000+01:00

Often, the reality of our disabilities can lead to an increased instance of depression. Our physical scars may have heeled, but the physiological and sociological have not. Ninety-nine people out of one hundred and forty-four; according to a recent study linked their learning disabilities with depression and other depressive disorders. This is the result of a lack of flexibility in the education process. Students are often placed with those with emotional and behavior problems. Teachers are therefore, unable to give the time needed to each individual student because they must serve as baby-sitters to those who do not wish to participate in the learning process.
Yet, within each of us their remains a strong desire to discover “the secret.” This means, that, most people given patience, tolerance, and a relaxed environment can learn and succeed. This success will reinforce the positive aspects of each person’s life. Every achievement from traveling the world wide, to putting on a dinner is note worthy and valuable. The memory of past achievements can sometimes serve as a reminder in the depth of suffering that this current sadness will not last.
Many students can look back and remember that one parent, teacher, or friend who took the time to find it within themselves, to figure out just what that person needed to thrive, survive, and to see the light at the end of the tunnel. Often, just as much as the chemical imbalance, feelings of depression, and low self-esteem, come from a sense that a person is entirely alone. The awareness, that in fact, everyone wants an individual to in fact, succeed, can be very liberating. There is an old saying which demonstrates this idea. “Only if you have been in the deepest pit of sorrow, loss, and despair, can you ever know how magnificent it is to climb to the to of the highest mountain.”

Curvature of the spine: Could your child have scoliosis?

2009-07-02T16:57:00.000+01:00

In a person with scoliosis, the spine may curve side-to-side in a "C" or "S" shape. Sometimes the spinal bones (vertebrae) may also twist. © iStockphoto.com

By Laurie Sammeth, Contributing Writer, myOptumHealth

Content provided by
myOptumHealth

Subtle signs of scoliosis, such as an uneven hemline or one hip appearing higher than the other, may first be noticed during a growth spurt in the early teen or preteen years. While these signs can be alarming, scoliosis is usually mild and won't get worse. Only about four children in 1,000 will need any treatment for it. In some cases, bracing is used to stop the progression of a curve. Rarely, surgery is needed to correct it.

Scoliosis is an abnormal curve of the spine. Normally when you look at a person's back, the spine or backbone falls in a straight line from the base of the neck to the tailbone. In a person with scoliosis, the spine may curve side-to-side in a "C" or "S" shape. Sometimes the spinal bones (vertebrae) may also twist.

What causes scoliosis?

Most of the time, doctors don't know what causes scoliosis. In these cases, it is called idiopathic scoliosis. In a few cases, it may be caused by another condition, such as a connective tissue or neuromuscular disorder.

Scoliosis tends to run in families. Idiopathic scoliosis occurs more often and tends to progress more in girls than in boys. Posture, a heavy book bag, or diet and exercise have nothing to do with whether someone will develop scoliosis.

What are the symptoms?

Scoliosis usually causes the spine to curve in an "S" or "C" shape. There may be no symptoms in the early stages of mild scoliosis. Signs of scoliosis include having:

One shoulder higher than the other
An uneven waistline
Ribs that stick out farther on one side of the body
A shoulder blade that sticks out farther on one side of the body
A tendency to lean to one side
Most cases are mild and don't get worse. In other cases, early treatment with a brace may prevent a curve from getting worse.

If scoliosis becomes severe, it may cause back pain or breathing problems. The earlier a child develops it, the more severe the curve can become.

How is it treated?

What treatment your child may need for scoliosis will depend on his age and how much more a child is expected to grow. Treatment also depends on how severe the curve is.

The main treatments for scoliosis include:

Observation. If your child has only a mild form (a spinal curve under 25 degrees), she most likely will not need treatment. But she should see the doctor every four to six months for observation until she stops growing.
Bracing. If your child is still growing and has a spinal curve over 25 to 30 degrees, he may need to wear a brace to prevent the curve from getting worse. There are many different kinds of braces and each must be custom fit for your child.
A brace will not correct the spinal curving but may keep it from getting worse. Your child must wear the brace every day for as long as the doctor recommends. But she can often take it off to exercise and play sports.

Surgery. If your child's scoliosis is severe (a spinal curve over 45 to 50 degrees) or if bracing does not stop its progression, surgery may be suggested. Surgery involves fusing (connecting) two or more vertebrae to straighten the backbone and inserting a permanent implant, such as a metal rod, to help keep it straight.
Having scoliosis can affect your child's self-esteem during the vulnerable teen years. It may be helpful to join a support group of others coping with the same condition.

SOURCES:
US Preventive Services Task Force (USPSTF). Screening for idiopathic scoliosis in adolescents.
Scoliosis Association. Scoliosis facts.
National Institute of Arthritis and Musculoskeletal and Skin Diseases. Scoliosis.
Greiner KA. Adolescent idiopathic scoliosis: radiologic decision-making. American Family Physician. 2002;65:1817-1822.
American Academy of Orthopaedic Surgeons. Scoliosis in children and adolescents.

Talkative teen finds her voice - and there’s no stopping her!

2009-06-26T10:48:00.000+01:00

A TEENAGE disabled girl has finally been able to tell her mum she loves her after being given a voice.

It’s changed her life massively, people won’t realise how much - mum Joanne, above with Jodie, 16, on the machine enabling her daughter to speak for the first time

Jodie Griffiths, 16, suffers from cerebral palsy and has always struggled to express herself.

But now, thanks to a £10,000 communications aid, she can finally tell the world how she feels - and release her wicked sense of humour.

Jodie, who lives in Grasmere Road, Redcar, with her mum, has wasted no time in making the most of the machine. Mum Joanne, 42, said: “One of the first things she said was ‘Mum, I love you.’ It was wonderful. I knew every part of her, just by the way she looked, I’d know how she was feeling. But now she can really communicate. It’s emotional because I didn’t think she would ever be able to say anything like that.”

The communications console, which mum Joanne boasts is better than the one theoretical physicist Stephen Hawking uses, has opened up the world to Jodie.

“It’s changed her life massively, people won’t realise how much,” she said. Simply by using her head to press a switch, she can select a word or phrase, play music or games, watch video, access the internet, and even operate the TV.

Joanne said: “She’s very outgoing, very sociable and has a wicked sense of humour.”
And it’s this cheeky sense of humour that has not only enamoured people to her but on the odd occasion landed her in trouble.

Jodie, who attends Kirkleatham Hall School, said: “I have already been in trouble at school because I kept putting my music on. My friends thought it was funny but my teachers did not.”

Prompted by mum, Jodie also admits that she told a man working at B&Q: “You’re looking very sexy today.”

The money to buy the console came via two different sources.

A panel of young people from the borough awarded Jodie with £7,000 from Redcar and Cleveland Council’s Youth Opportunity Fund.

Joanne said: “They usually don’t give out personalised grants of that amount of money but when the children on the panel heard about Jodie their reaction was, well, if we’ve got a voice then Jodie should have a voice too.”

A fundraising night at Redcar's West Two raised £2,600. Joanne said: “At the beginning, we knew we’d have to raise the money ourselves, then when we got the grant, I just couldn’t believe it.”

Jodie, a Middlesbrough FC season ticket holder, said: “Thanks to the kids on the panel my life has changed so much in such a short time. I can now tell people how I feel and what I want. In fact it’s hard to shut me up.”

Changing Attitudes, Changing Minds!

2009-06-25T11:25:00.000+01:00

In my last article, I wrote about people bullying others. Well today, my dear readers, I am going to take this topic a step further. I am going to expand and give more detail about how this thinking applies in other parts of our lives. The hardest part of our existences; whether disabled or not, is learning to get along with everybody. It is in the learning to maneuver, in staying neutral, and the ability to adapt, and adjust, that we find our greatest challenges and joys. Many in our community must be very smart in finding a way to alter outworn concepts about what we are capable of. When a person has to spends three and a half decades trying to make the degree they won pay off, in terms of the job they deserve without much luck, something is defiantly and undeniably wrong. Still, when doctorial candidates’ will travel the world wide, prove they are capable of making and taking the journey, and come home only to be told by a group of experts that they are better off in a workshop; something unmistakably is wrong. Why is it that when a person such as myself wants to achieve and go forth with their degrees or desires they are subtly blocked and artfully discredited. What is it that has damaged the thinking of our countries leadership? I can not understand why genuine leaders are ignored while people get degrees in phone sex, and jobs based on a false concept of sympathy rather on ability. What makes our drive unnoticed? What make our situation so different. And what makes people so reluctant to help us and hire us? That is the hardest thing to deal with, the awareness that we are tolerated not included. And we come off to these experts as “non included, separated; after thoughts.” Thus, the people in our community are an untapped resource. All of our problem solving, all of our flexibility, and all of our talents are going to sheer waste. Decade, after decade, after decade!
Never in the United States history, has our country been in grater need of a group of individuals, skilled in problem-solving, time management, flexibility, and a strong will. Never in its history have they looked beyond book documentation to free and let our people have the chances, the opportunities, and the favorable time or set circumstance to do a job they so deserve. Every one of you reading this article has accomplished many great challenges, I’m sure. We are conquering everyday problems which the rest of the world, I’m sure, couldn’t handle. If faced with our level of difficulty, most people would collapse at the onset. So, I ask you, what would be then, so terrible, awful, or extremely bad, about turning us all loose to over-come and take control of our own lives and problems. Thus, I ask you again, candidly, What would be so dreadful if we were finally given a change. What would be so horrific if we were able to sit down at the table, equally, amongst our peers, and leaders? What would be so shocking, if all of us; not just the select few of our excepted leaders, in our community, could actively influence policy. What would be so earth-shattering if people were willing to analyze and inculcate our views about the contribution we are making to society.
How could this be possible? It is definitely simpler than it looks. We only have to abandon the comfortable idea that experts will make all our decisions and supply all our wants. I ask you , again. What is wrong with that picture? The frame does not fit, nor, is the color correct. So, we must make a new picture. We must take back the right to determine our own path.

What Does Bullying and Making Fun of Other’s; Got to Do With it?

2009-06-25T11:22:00.000+01:00

I have heard a lot of commentary about kids bullying others, and then those same children who could not handle the making fun of any longer; killing themselves or hurting someone. Many people do not know how much that actually happens in the disabled community. But it does. Sometimes its even worse than out in the “regular world.” I know this because I lived through it, and experienced it a number of times first hand.
When I was a child the kids around me would chastise me for having an over-weight parent. Time and again, they would say mean and cruel words that stung deeply; of which all I could do was swallow what they just said, and turn the other cheek. Still another time, I was directly bullied by the classmate’s in my classroom. I was a quiet, demure, good-hearted child, who never thought twice about saying something or doing something down right nasty just for the sake or fun of it.
Yet, I had classmate’s that did just that! I experienced a practical awareness of people who came up to my personhood, stared me in the face, spouted nasty, sweet, nothings to me directly, grab my work assignments right from under my very nose, and ripped then to shreds. Still another time, as an adult mind you; while teaching a young client who had C.P., I was directly ostracize because she felt she had a right to mock my movements. Obviously, someone put this in her mind. Where did she get this from. Was it her wealthy background, her being the eldest child, or her controlling, manipulative ways. Was she made fun of by others, herself? Or, did she believe that making fun would get her somewhere?
What she did not realize was she was also making fun of herself. With a stern, caring, compassionate, human side, I professionally sat her down; and reminded her that she too had a disability, and while it was the same, yet different, she would not like it if someone made fun of her. People are not aware of how much there words can impact people around them. It would be very useful if we all took the time to think before we hurt someone’s feeling. If we perhaps, really took the time to be careful there would be a whole lot less suffering and tragedy.

Complexities of Human Nature

2009-06-25T11:20:00.000+01:00

Recently, I have been subjected and exposed to spending time with a specific group of people whom, I’d really rather not keep company with at all. But, because I had no other choice; and, because I do my emotional home work to look beyond all past experiences, I did my utmost to make good out of an on-going, negative, one sided, opinionated event, so I agreed.
However, in spite of all my hard work, and my good-naturedness, I was conversely made to be the enemy. I was conversely used and taken advantage of solely so my company could achieve their means to there end. Once again, these experiences have taught me another life altering lesson. Whether they have been immediate family, or sheer acquaintances, I have learned once again that there aren’t two people in this vast universe who see things exactly alike.
There is a much larger, grander issue here. This issue concerns a comfort level of ordinary people with those with disabilities, stepping out into full and self-directed participation in life. This issue is not something everyone is use to. This concern is at its root, a fear of having to approach events with honesty and directness. The facts of our lives require a forthrightness most of society has abandoned. Most of the world conducts itself with comfortable, passive, banality. People would rather not be reminded that the world is more complex than they would like to believe.
Thankfully, our achievements have broken down the old out-moted views which seemed to be comfortable for most. In everything we say and do, we are forcing the world to understand that disability does not mean isolation in comfortable seclusion. Nor, does it mean, to directly hurt someone in pursuit of a goal. Rather, we are stretching body, mind, and spirit towards our place in the sunshine.

Physical therapist explains machine that helps patients walk

2009-06-25T10:56:00.002+01:00

Jun 22, 2009 (Lodi News-Sentinel - McClatchy-Tribune Information Services via COMTEX) --

Lodi Memorial Hospital is the only place in the greater Sacramento and Modesto areas that has a new piece of equipment available to patients seeking to improve their ability to walk normally again.

This includes those who have suffered from a stroke, an incomplete spinal cord injury, cerebral palsy or, like Linda Barnard, of Sacramento, multiple sclerosis.
After being diagnosed with multiple sclerosis 10 years ago, Barnard was steadily losing her ability to walk. The disease worsened until the former athlete struggled to walk independently from her office to a nearby restroom at work.
Barnard, a marriage-family therapist in the Sacramento area, learned about the machine through one of her clients, who saw a segment on the "Today" show. When she Googled the nearest location, she found it in Lodi.

In the last six months, Barnard has regained enough mobility to stroll around a golf course. The 59-year-old attributes her full recovery to the NESS L300, a new FDA-approved wireless electronic device.

"It really works. I can already see positive benefits," she said.
The NESS L300 is worn in two parts, a small transmitter in the shoe and a device strapped below the knee. When a patient tries to walk, the L300 sends electronic signals to stimulate the peroneal nerve which, in turn, signals under-active muscles to help patients lift their foot off the ground and get them walking again.
Barnard's physical therapist, Jason Locke, at the hospital's outpatient clinic, explained how the NESS L300 can help people learn to walk again.

How does this machine work?Basically how the machine works is, we use a cuff that goes on the lower leg, which we connect electrodes to that stimulate the muscles of the foot.

A gait sensor in the shoe acts as a switch. When the person is walking, the machine will sense the pressure and turn the machine off ... so there's no contraction of the muscle. When your foot is on the ground, you don't need that muscle.
When you lift your foot, that sensor turns the machine on.
When it comes to physical therapy, what is 'foot drop'?It's just a general term for the foot not to be able to come up for walking.

For Linda, who has MS, it's a central nervous system disorder. If you compare it to an electrical generator for our home, it sends power to turn on the lights. Our brain is very similar. It sends a message through our brain to our muscles.
How is this machine unique to others that offer similar results?We've been using electrical stimulation for a long time. (The NESS L300) is just the wireless technology that enables us to make a big impact for patients.
It's more functional for them because the physical therapist doesn't have to program anything. In the past, we would have to get the electrodes in the right place every time to stimulate the muscles.

I understand there are not many of these machines around. How did Lodi Memorial come to acquire one?We heard about the technology about a year-and-a-half ago, and we were able to acquire it by a generous donation by the hospital and the auxiliary.
They are very expensive. A take-home unit is about $6,000 and doesn't include all the auxiliary equipment we need here, including a PDA that stores all of the patient information.

How have you come to believe it can help people regain mobility?I think the biggest thing is that it provides some functional return. It makes people more functional again.

Most of these people who have foot drop are using some sort of brace. It's cumbersome and not natural at all. This unit has created a functional way to improve their lives. Lots of people walk faster, their gait improves and they can walk on uneven ground a little better, especially stepping over hills.

It also reduces tone (in the leg). It's like the idling speed in your car. The patient who has had some sort of brain injury, their tone usually runs too high in the legs. It's just more rigid, and it's hard to move. This machine allows people to move a little better.

What have patients who have used the machine said about it?I had one patient who wasn't able to walk very well because of fatigue. This machine has enabled her to walk further.

A year-and-a-half ago she was able to walk around Disneyland when she was only able to walk from bench to bench before, because she would lose her balance or fatigue.
It's been amazing to see people who have had a life change and how this has positively affected their lives. We've had some patients come from Nevada, and one from as far away as Bakersfield.

Free patient screeningWhen: Wednesday from noon to 4 p.m.
For more information: 333-3136.

Download our Benefit Bar and help support Living with Cerebral Palsy

2009-06-24T13:36:00.005+01:00

We are so excited to share with you the Living with Cerebral Palsy Toolbar. It will serve as a new way to generate revenue along with the Living with Cerebral Palsy Mall. With this Toolbar we will raise much needed funds without you writing a check or selling a product!

This Toolbar will not replace your existing toolbar. The features on the Toolbar are all designed to help us raise funds in a non-intrusive way. THERE IS NO COST TO YOU. There are no pop-ups, adware, spyware or tracking and we also respect the user’s privacy. It is easy to download to Internet Explorer or Firefox…just click the banner below.

By using the Yahoo search engine that is conveniently located on our toolbar, you are helping us raise dollars for our Organisation! You will acquire the same information you receive using your current search engine. Every time you click on a sponsored link (anything listed in the shaded area with bullet points or anything listed on the right side of the page) you are raising 10 cents per click for our Organisation! NO PURCHASE NECESSARY.

Performing 2-5 searches a day on something you are interested in and clicking on sponsored links, because those links help you with the information you are looking for, will help us reach our goals faster! This should only take 5 minutes. It’s that EASY! What are you waiting for? Click on the banner above to download our Toolbar and start helping us raise money. If you have any questions or special support needs do not hesitate to contact OurGV Rewards at support@ourgvrewards.com

With a direct link on the toolbar, you now have even easier access to the Living with Cerebral Palsy Mall to Shop and Fundraise! We invite you to visit the Mall for your everyday needs as well as for special occasions. Remember that every time you shop at over 1000 stores in your Mall (to make purchases you are going to make anyway) you are generating funds for our organisation!

We are proud to have you as a Supporter! We hope you are equally proud to have our toolbar on your computer. We encourage you to share this toolbar with your friends and family so they can help our organisation fund its needs

Today as been one of those days

2009-06-21T00:46:00.002+01:00

Today as been one of them days, it started out good, but ended.. Well, lets just say.. it ended..

Identifying Neurologic Disorders

2009-06-20T13:02:00.001+01:00

A new study provides a novel theory for how delusions arise and why they persist (Devinsky O. Delusional misidentifications and duplications: right brain lesions, left brain delusions. Neurology. Jan 2009;72:80-87). Orrin Devinsky, MD, a researcher at the New York University (NYU) Langone Medical Center, performed an in-depth analysis of patients with certain delusions and brain disorders and observed a consistent pattern of injury to the frontal lobe and right hemisphere of the brain.

The cognitive deficits caused by injuries to the right hemisphere lead to overcompensation by the left hemisphere, which results in delusions.

"Problems caused by these brain injuries include impairment in monitoring of self, awareness of errors, and incorrectly identifying what is familiar and what is a work of fiction," says Devinsky, professor of neurology, psychiatry and neurosurgery and director of the NYU Epilepsy Center. "However, delusions result from the loss of these functions, as well as the overactivation of the left hemisphere and its language structures, that 'create a story', a story which cannot be edited and modified to account for reality. Delusions result from right hemisphere lesions, but it is the left hemisphere that is deluded."

Delusions are pathologic beliefs that remain fixed, despite clear evidence that they're incorrect. "Delusions are common problems in a variety of psychiatric and neurological disorders," says Devinsky. Psychiatric disorders with delusions, such as schizophrenia, have been proven to have functional and structural brain pathology, he adds. But now, improved diagnostic techniques are allowing clinicians to be able to identify neurologic disorders among other patient populations with delusions.

In the study, most neurologic patients with delusions had lesions in the right hemisphere and bifrontal areas. For example, the neurologic disorders of confabulation, capgras and prosopagnosia result from right-sided lesions. Confabulation is incorrect or distorted statements that are made without conscious effort to deceive; capgras is the ability to consciously recognize familiar faces, but not emotionally connect with them; and with prosopagnosia, patients may fail to recognize spouses or their own face but generate an unconscious response to familiar faces.

The right hemisphere of the brain dominates self-recognition, emotional familiarity and ego boundaries. After injury, the left hemisphere tends to have a creative narrator that leads to excessive, false explanations. The resistance of delusions to change, despite clear evidence that they are wrong, likely reflects frontal dysfunction of the brain. This dysfunction impairs a person's ability to monitor himself and to recognize and correct inaccurate memories and familiarity assessments. Thus, right hemisphere lesions may cause delusions by disrupting the relationship between and the monitoring of psychic, emotional and physical self to people, places and body parts.

"Our knowledge of delusions is limited by our ability to comprehend the patient's irrational thought process," says Devinsky. "The pathogenesis of delusions likely includes many mechanisms that span overlapping psychological, cognitive and neurological disorders. Future research should explore the psychological, cognitive and pyschologic-anatomic systems that change during the emergence and resolution of delusions, as well as strategies to treat delusions."

Other studies have looked at delusions related to brain injuries. In one study, nine patients with right-hemisphere infarctions at a stroke rehabilitation unit had frequent delusion. While stroke size didn't correlate when compared with the control group, the presence of brain atrophy was a significant predictor of delusions. When delusions occurred, it was usually caused by a right-hemisphere lesion.

Other research has shown that reduplicative paramnesia and capgras syndrome cases with unilateral brain lesions implicate the right hemisphere, usually the frontal lobe of the brain. Among 69 patients with reduplicative paramnesia, lesions were primarily in the right hemisphere in 36 cases (52%), bilateral in 28 (41%) and left hemisphere in 5 (7%). Also, in 26 capras patients, lesions were primarily in the right hemisphere in 8 (32%), bilateral in 16 (62%) and left sided in 2 (7%). For both delusional syndromes, many bilaterial cases had maximal damage in the right hemisphere.

--Source: NYU Langone Medical Center

Dolphin-assisted therapy offers hope to disabled children, parents

2009-06-20T12:57:00.002+01:00

BY FRANCES ROBLES
frobles@MiamiHerald.com

WILLEMSTAD, Curacao -- A 350-pound dolphin named Matteo tickles a toddler with his snout, sparking a burst of giggles.
The disabled child hitches a ride on Matteo's belly while gleeful parents snap photos. The dolphin expels water through its blowhole and rests its head gently on the girl's shoulder while her parents silently plead for results.

It's a scene Kirsten ''Kiki'' Kuhnert has watched thousands of times. She used to be one of those moms who prayed for miracles at the side of a dolphin therapy center pool, thinking: Maybe this will make my child talk. Maybe some day he'll walk.

''I have seen kids speak their first word, mothers cry because their autistic son looked at her in the eye or kissed her,'' Kuhnert said. ``Every day a little miracle.

``How big a miracle is in the eye of the beholder.''

Kuhnert, a single mom from Key Biscayne, has dedicated the past 15 years of her life to raising funds for dolphin-assisted therapy, a controversial behavior-modification treatment for severely disabled children. Struck by tragedy as a young mother of a 2-year-old, the Germany native turned her heartbreak into a calling.

Convinced that swimming with the animals paired with intensive speech or physical therapy helps with autism, Down's syndrome, cerebral palsy and other debilitating ailments, Kuhnert spends her days snapping orders at therapists and trouble-shooting emergencies at a therapy center at the Seaquarium in Willemstad, Curacao. She makes phone call after phone call raising money to get children to treatment, at $7,000 or more for just two weeks of care.

But, these days, she is hardly ever by the pool, rarely with the children. The memories of the son she lost sting too much.

A MOM'S MISSION

It was June 18, 1994. Kuhnert was the married mother of two kids from an upper-class family in Germany who made her living in sports event marketing.

That June day, the family had gathered at the country club to celebrate her infant daughter Kira's christening, when suddenly they realized they had lost sight of Tim, Kuhnert's 2-year-old.

''We looked for 15 minutes,'' she remembers. ``He was 15 yards away behind a hedge, in an unsecured swimming pool. This is where they found him. He was lifeless.''

Tim suffered brain damage that left him in a coma and with cerebral palsy. Kuhnert became obsessed, she says -- the type of mom who would ''fly to a rain forest and dance'' to make their kids well.

She traveled to hospitals around the globe, fought with neurologists, lost her marriage.

In 1995, Kuhnert flew from Germany to the Keys, where her little boy swam with dolphins at a facility that has since closed. After four days of being put in the water with a dolphin -- following 16 months in a coma -- Tim woke up.

''I was so happy. I thought every kid that has a problem should be able to do this,'' she said. 'I thought, `Somebody should set up something like a foundation.' ''

That's what Kuhnert did.

''She was so excited about it, she started kind of a crusade to help kids come,'' said David Nathanson, a South Dade psychologist who is considered the founder of dolphin-assisted therapy. ``She's very dedicated and passionate. I would call her semi-eccentric -- in a good way.''

Nathanson ran a company called Dolphin Human Therapy in a variety of locations from Miami Seaquarium to Key Largo and Mexico from 1995 until 2006. In that time, he said, Kuhnert held raffles, organized dinners and made countless calls to send at least 1,000 children to therapy. She'd get airlines to donate tickets and corporations to write checks.

SOUTH FLORIDA

Kuhnert was so dedicated that 10 years ago she packed up and moved to South Florida, so her son could be closer to the dolphins she credits for bringing him out of a coma.

Tim remained severely disabled for the rest of his life, communicating by the roll of an eye. He died suddenly last year at 17.

''He was the funniest, most charming person in the world,'' his mother said. ``He was an angel the day he was born.''

Despite her loss, Kuhnert continues on her quest to find funding for other families to visit the Curacao center.

Her dedication will be honored Thursday when she is presented with an award of excellence by the German American Business Chamber of Florida at the InterContintenal Hotel in Miami.

Kuhnert helped create the program at the Curacao Dolphin Therapy & Research Center, an interdisciplinary treatment center on the grounds of the Sea Aquarium in Willemstad.

The owner pays her a consulting fee to supervise speech and physical therapists and she uses the rest of her time to raise money for her charity, Dolphin Aid, which provides grants for people, largely Europeans, to come. ''She is an inspiring, very driven individual,'' said owner Adriaan ''Dutch'' Schrier. ``I am a son of a Presbyterian Dutch farmer -- I don't believe in hocus pocus or so-called miracles. But what I've witnessed here . . . ''

Among the perceived miracles is the case of Daniuq Kuypers, a 12-year-old who did not speak until after swimming with dolphins in Curacao at the age of 10.

''The only thing I can tell you is that I came here with a daughter who did not speak and flew back to Holland, and she spoke,'' said Daniuq's father, Hans Kuypers, a Dutch homicide detective. ``For 10 years, I had no contact with my daughter. Now she can say why she wants to cry or has pain.

``I can't be sure if it was the dolphin that caused it, and I don't care.''

Kuhnert admits she's not exactly a trained expert.

''I didn't know what I was doing. I was just a mom trying to do the right thing,'' she said. ``I am not a nurse nor a therapist. I was just a mom.''

The therapy has been the target of criticism largely from animal rights groups, which consider it dangerous to humans and unfair to dolphins.

''Because of the lack of scientific study, there are two vulnerable groups being exploited: dolphins and children and parents seeking a miracle under expensive circumstances,'' said Courtney Vail, director of the Caribbean program for the Whale and Dolphin Conservation Society. ``There is such an affinity for these animals, it's easy to believe. But if you are going to claim it has a medical benefit, you have to validate it.''

EXPERT VIEW

Janelle Nimer, a Ph.D. candidate at the University of Tennessee who researched dolphin therapy for her three-year fellowship in veterinary medicine, says experts are not sure why the therapy shows results, but they believe it could have to do with the sonar the animals emit under water.

She tried it herself in Mexico and felt a ''high-like'' feeling for two weeks. The research, Nimer said, shows children show improvements compared to traditional therapy alone.

''All animal therapy is controversial, because it hasn't been researched as it should have been,'' she said. ``People are afraid dolphins are being mistreated. You have exotic animals and parents of autistic kids who are willing to try anything.''

Those who support the therapy say one only needs to see the benefits to believe.

''Therapy without the dolphin does not work. The dolphin without the therapy does not work,'' said Marco Stork, an Amsterdam newspaper ad salesman with two autistic sons. ``They work together.''

His son Damian, 8, had been in speech therapy for three years, and only started speaking after that work was combined with two weeks of two-hour-a-day swims with dolphins.

''His first word was spelen -- play,'' said Stork, who speaks Dutch. ``Something he could never have said, he said after three days here. Every day we saw a little bit more, a little more.''

Frank set to soar above his disability

2009-06-20T11:55:00.001+01:00

By St Helens Star newsdesk »

FRANK Lees might have cerebral palsy... but that won’t stop the 20-year-old reaching for the sky later this year.

Frank, pictured right, from Prescot, enjoyed a three-day selection course at RAF Cranwell and has been given the chance to learn to fly through the charity Flying Scholarships for the Disabled.

Born prematurely, Frank now suffers from both cerebral palsy and hemiplegia, which limits his mobility.

He will be undertaking a residential four-week flight training course at Lasham Airfield, Hampshire, with the British Disabled Flying Association.

The scholarship includes all flight training and associated ground school tuition, as well as his accommodation.

The aim of FSD is to help disabled recipients restore confidence and regain self-esteem through the physical and mental challenge of learning to fly a light aircraft. The thrill and freedom of flying enables them to reach previously undiscovered potential and helps view their lives in terms of their abilities, not their disabilities.

For many past scholars, the new-found confidence that FSD has instilled in them has helped them to resume or start new careers.

The charity is financed through sponsors, charitable trusts, public donations and local fundraising.

Additional information on the FSD charity can be found on the website at toreachforthesky.org.uk Since 1983 nearly 300 disabled people have experience the thrill and freedom of flight through the scheme.