Sunday is my rest day

Well it has been a while since I have updated readers, therefore as its Sunday my day of rest, what better time than now to tell you what’s been happening of late. I am please to say I have now moved back into a ground floor building, sharing the reception area, although I am not in the main office with the rest of my team I am happy to be back at ground zero and safe in the knowledge that I don’t have to worry about the lift breaking down, which in turn allows me to concentrate fully once again on my work and not whether I am going to have to be lifted out, so it is best all round and I am happy again.

How are other things, well Mum is doing really well and is walking longer distances, not only that but she is able to stand unaided for a couple of seconds, which is fantastic, to her it probably feels a life time but I am so proud of how far she has come in a short space of time. Last week Mum and I went to see my Granddad in the wheelchair accessible taxi, I use the same taxi to go to work and believe me it turns a few heads while its on the road, not only because people seem fascinated when they see a wheelchair coming down the ramps, but more so because it is bright blue with big flowers on it. I know what you might be thinking “why has it got big flowers on it ?” and to answer this its that its to advertise the Smoke Free campaign, the company have nicknamed it the love bus as it just looks like one of those buses from the 60’s. Granddad thought it was great, I think it impressed him that we could travel in our chairs.

This week as been great in terms of my Physiotherapy I have been doing a lot of work in the gym, both on the machines and doing different exercises with some of the smaller equipment, this weeks challenge was to test my sitting balance a step further, to do this I needed to sit on the wobble cushion, this is a task in itself, but anyway this week I was given a dumbbell to try. The ideas being that I had to remain on the cushion and slowly lift the dumbbell straight up till my arm was straight and then bring it down slowly, I managed two sets of 10 and only wobbled once, but it didn’t throw my balance complete which was good. My Physio was really pleased as to how much my balance has improved, even from two weeks ago.

Following this I went into the bars and did some work on side bending, which I find a little hard work, mainly because I have always thought that when you have a metal rod in spine you can’t bend in this way, but I now realise that since my Bowen therapy it is possible to do this. Although I can’t fully bend granted I can bend a certain amount, and that certain amount is enough to be able to carry out the exercise and feel the benefit, and that’s what it’s about.
I then had a walk in the gym on my crutches, and it was like walking on air, I was hardly putting any weight through my crutches and yet it felt like I was running and again my Physio was impressed.

I asked the question that if I am able to walk like this without weight baring with crutches what is stopping me from dropping them and just walking away so to speak, and initially we both aren’t sure but we going to do some research and investigation and see if we can come up with the answer. We then went back into the bars to do some balance work taking one hand off and putting it back, and then the surprise came in that we tested the balance a step further and was asked “if I was to stand and balance holding with one hand which hand would I use,?” I replied that it would be my left hand, “ok then lets try something” “take hold of the bar with your left hand organise your body so you are standing straight and then see if you can walk along just holding with that hand and try and put other hand down beside you”

I did this and walked up the bars and turned and walked back and we were both impressed, so much so that she went into the therapy area to see if my Bowen therapist was available to come and see what a massive improvement was going on, so when he came into the Gym I set off in the bars again and turned and came back to him, he was beaming, I haven’t seen him for a while now but he agreed that something special was starting to occur. I then walked to him on my crutches and the first thing he had noticed was that I wasn’t leaning as far forward compared to when he last saw me walking, which is great. I can’t wait to go back in 2 weeks to see how far I have progressed again.

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Disabled parking made easier

by James Congdon

Navevo has launched what it claims is the first dedicated Blue Badge sat-nav. Dubbed BBNav, the device is designed primarily to aid disabled drivers and those caring for the disabled.

The product has been designed and built to help Blue badge holders to find parking spaces, and areas of interest. BBnav has all of the features you'd normally find within a standard sat-nav, plus other features in order to provide more detail for disabled drivers.

This includes on street disabled parking bays; disabled accessible car parks and local council blue badge concessions.These features include:

Blue Badge and Red Route on street parking bays
Disabled Car parks
Local Council Blue Badge Parking concessions
Over 60,000 Points of Interest (20,000 +Blue badge)
NAVTEQ street level mapping covering the UK and Republic of Ireland
Seven digit post code routing
Safety camera alerts.

The device is claimed to save time looking for disabled parking. The coded and numbered icons are displayed on the mapping while allowing users to search for a car park/parking bay with ease and be navigated directly to it."We have identified areas of the market where standard sat-navs fell short," said Nick Casari CEO at Navevo. "The product has taken us a year to develop in conjunction with Pie Guide."BBNav will be available from this October for £199.99. More details can be found at www.bbnav.co.uk.

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Nintendo Wii Provides Not Only Fun and Exercise but Rehabilitation Benefits too

Nintendo Wii, the popular gaming system, not just combines fun and exercise, but also holds rehabilitation benefits for those suffering from cerebral palsy, says a new study.




The UMDNJ case study, namely "Use of a Low-Cost, Commercially Available Gaming Console (Wii) for Rehabilitation of an Adolescent with Cerebral Palsy," focused on use of the Nintendo Wii for rehabilitation of a teen with cerebral palsy.

The case study of the 13-year-old male with spastic diplegic cerebral palsy has shown physical therapy benefits resulting from the use of Wii, a relatively low-cost, commercially available, interactive gaming system.

In a school-based setting, the teen participated in 11 training sessions, over a four-week period, using the Wii while continuing to receive physical and occupational therapy.

The sessions were each between 60 and 90 minutes long and used the Wii sports games software, which offers boxing, tennis, bowling, and golf. He trained in both standing and sitting positions.

"Improvements in visual-perceptual processing, postural control, and functional mobility were measured after training," reported the researchers.

Led by Judith E. Deutsch, PT, Ph.D., professor and director of Research in Virtual Environments and Rehabilitation Sciences (Rivers) Lab in the Department of Rehabilitation and Movement Science at UMDNJ-SHR, the study is the first published report on using the Wii for rehabilitation.

However, there have been many press reports about use of the Wii in clinical settings as well as some scientific articles on the physiological effects of using the Wii.

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Pilates exercises strengthen the spine

According to Statistics Canada, back problems are among the most common chronic conditions in Canada. Four out of five adults will experience at least one episode of back pain at some time in their lives. The cause of back pain, however, is not always apparent. In fact, in approximately 85 to 90 per cent of individuals with back pain, no specific cause can be identified. Contributing factors include poor muscle tone, especially in the back and abdominal muscles, sedentary lifestyle, obesity, smoking, poor posture, and in particular, improper or heavy lifting.

You cannot build a house without a strong foundation, and you cannot build a strong body without a strong spine. If you have a bad back and you are not getting relief through other forms of treatment, my professional suggestion would be to start an exercise program called Pilates. The Pilates Method is a physical fitness system developed in the early 20th century by Joseph Pilates in Germany. Pilates called his method Contrology, because he believed that his method uses the mind to control the muscles. The program focuses on the core postural muscles which help keep the body balanced and which are essential to providing support for the spine. In particular, Pilates exercises teach awareness of breath and alignment of the spine, and aim to strengthen the deep torso muscles. Pilates is a very beginner-friendly fitness method. With the help of a teacher, clients perform strength, flexibility and range of motion exercises on specially designed equipment and/or mat classes. Class prices range from $12.00 per class to $60.00 per class for private instruction.

With over 15 years of experience in personal training and 10 years specializing in Pilates, I have seen countless clients with chronic back pain. With patience, persistence and the right teacher, I have also seen countless clients regain their life back through the practice of Pilates.

For more information, please contact Michelle Barker at pilates@telus.net or The Gym on Bowen. Michelle is a recent resident on Bowen Island and she loves it!

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Many patients pay for wheelchairs

People with muscle disease are denied health and social care services because they live in Wales, it is claimed.
The Muscular Dystrophy Campaign said its survey showed no specialist care co-ordinator for the 3,000 people with muscle diseases in Wales.
It also said 40% must pay for their own wheelchairs, while such services are readily available in England.
The Welsh Assembly Government said Health Minister Edwina Hart would "carefully consider" its findings.
The charity is calling for an urgent review of services across Wales.
The survey specifically highlighted the lack of a care co-ordinator in Wales as a major cause for concern.
Elsewhere in the UK, care co-ordinators act as the first point of call for muscle disease patients, giving them advice and guidance to help find specialist support.

"For some families in Wales access to specialist care can be a matter of life or death" Philip Butcher, Muscular Dystrophy Campaign


A third of Welsh patients also have no access to a specialist neuromuscular consultant and 40% of them have no access to a physiotherapist or feel that they do not receive enough physiotherapy.

The 22 local health boards in Wales were also asked to provide information about their services for people with neuromuscular conditions and found that the majority do not support specialist clinics for adults or children.
Muscular Dystrophy Campaign chief executive Philip Butcher said: "For some families in Wales access to specialist care can be a matter of life or death.
"Their plight is made worse by the considerable delays and variations in the provision of essential equipment and barriers to living independently.

'Complex and confusing'
"It is clear that health and social care services are patchy, complex and confusing.

ONE WOMAN'S STORY
Mother-of-two Shawneena Laker, 46, from Four Crosses, Powys, who was diagnosed with muscular dystrophy 14 years ago, said: "My condition started to deteriorate about six months and I got to the stage where I was falling over.

"I tried to find out about getting a wheelchair but no-one could help me. I was told to go to the Red Cross and they said they could borrow me one for a while but that was no good.
"In the end we had to go to Argos in Shrewsbury and buy one for £250 but I know for a fact that if I lived down the road in Pant in England I would have got one for free.
"I think it's totally disgusting. I don't expect to be given something for nothing but this is a terminal illness and my body is breaking down in front of me and I need more help.
"I think there's a real stigma attached to muscle disease and there's just no help available here in Wales."

"The report shows that three out of four people in Wales are missing out on the vital help of a care co-ordinator, whose role is to support and guide them through the system.
"We are calling on the local NHS commissioners and local authorities to urgently establish additional posts in Wales.
"I do know that Edwina Hart is taking this matter seriously and she has shown a clear commitment to improving standards of care for families in Wales."
On top of a general lack of health services, the survey also found 75% of families faced financial hardship as a result of muscle disease, with many having to pay for their own wheelchair.

Improve services
The results come three years after the Government's National Service Framework for Long-Term Conditions, which pledged to improve quality of life and independence for people living with chronic conditions.
An assembly government spokersperson said the health minister would consider the survery findings, but added: "However, the independent review of neuroscience services, which Mrs Hart commissioned, will outline proposals on how to improve services across Wales.
"This is along with the ongoing work relating to children and young people's specialist services and the work about to start on neuromuscular diseases.
"She expects that people should see improvements as a result."
Muscle diseases weaken and waste muscles and can be inherited or acquired and affect people of all ages, backgrounds and nationalities.
There are currently no cures available to people with these kinds of conditions.

Edwina Hart will meet families affected by muscle disease at the Muscular Dystrophy Campaign's conference in Swansea on 13 October.

RELATED INTERNET LINKS
Muscular Dystrophy Campaign
NHS Wales
Welsh Assembly Government

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Mum's plea to help daughter walk

A BRAVE single mother is fighting to give her disabled daughter the chance to walk.
Saira Naseer is appealing to Observer readers to raise £2,000 to buy a special corset for four-year-old Khadijah who has suffered from cerebral palsy since birth which means she currently can not talk, walk or even stand-up by herself.
She also has motor disorder, which further restricts her mobility, and reflux, which means she frequently vomits and has had two operation to stop this. She is on daily anti-sickness medication and has to be fed by a tube through her belly because she is prone to chocking.
But the specially made corset will dramatically change her life as it will help strength Khadijah muscles along her back and improve her head control. And the family believe this will boost her chances of walking.
The 34-year-old of, Langley, said: “To see Khadijah walk by herself would be the greatest gift anyone could give her.
“I was in tears the other day because I don’t want to have to ask for help, I want to be able to provide for my daughter myself. But she is growing bigger everyday and urgently needs the corset now to support herself and play.”
Khadijah is known as ‘a little miracle’ because medics said she had little chance of survival when she was born.
Ms Naseer, who also works part-time in Heathrow, added: “It was a very tough and scary time but I just kept praying she’d make it. I knew her quality of life may not be as good as others but I believed we’d be alright because she’d be with me.
“She catches infections quickly so when there is a change in the weather, she can get very ill. When she was younger we were always in and out of hospital that the nurses all knew her first name. But we’re not a sob story and I don’t view her disability as a negative thing. She has made me stronger.”
To help boost funds Sainsbury’s, Farnham Road, Slough will hold a collection from today (Monday) to October.
It has been organised by Cllr Diana Coad who said: “Khadijah is a real fighter. She proved that when she won a gold medal for bowling at the SADSAD games this weekend. She’s our brave little princess but this corset will make a world of difference so I hope everyone gives generously.”
Readers can also send cheques made payable to Saira Naseer at The Khadijah Fund, 77, Burnham Lane, Slough, Berkshire, SL1 6JY.

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Paralympics

GREAT Britain’s gold rush came to a halt as throwers Daniel Greaves and Stephen Miller were unsuccessful in the defence of their Paralympic titles in Beijing. Silver was the order of the day as Miller and swimmers Jim Anderson, Robert Welbourn and Fran Williamson all finished second, while Greaves and Natalie Jones, in the pool, won bronze. Miller had a 12-year unbeaten run ended in his fourth Games when the Gateshead Harrier, who has cerebral palsy, finished second in the men’s F32/51 club throw with a best of 34.37m as Tunisia’s Mourad Idoudi set a world record of 35.77m. Greaves came third in the men’s F44 discus with a best throw of 53.04m, 2.08m behind winner Jeremy Campbell of the United States.

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BY GEORGE...things have really changed

STOCKTON has undergone a transformation since its council became a unitary authority, says George Garlick.
And the borough is well placed to continue its progress in the coming few years.
Mr Garlick, 57, is leaving the authority to take over as chief executive of the new unitary council for County Durham. With 500,000 people, it will be the biggest local authority in the North-east and one of the biggest in the country.
Mr Garlick arrived as the chief executive at Stockton Council in 1995.
It was preparing for the major shake-up in local government on Teesside with the scrapping of Cleveland County Council and the setting up of the unitary councils covering each of the boroughs in 1996.
Mr Garlick believes the creation of the unitary councils has been a success for Stockton and for the whole of the Tees Valley.
“The effect of providing the four Teesside unitaries and a unitary council for Darlington to form the Tees Valley has been quite virtuous.
“We have competed with each other to provide the best services and that has raised the standard of service delivery across the whole area.
“Last year all five Tees Valley councils were four-star authorities,” said Mr Garlick.
He said the decision of the councils to set up the Tees Valley Joint Strategy Unit had helped drive forward the agenda on economic, planning and transportation strategy.
Mr Garlick said that in the past 13 years Stockton had gone from an average performing authority - and in some cases such as street cleansing, a poorly performing authority - to being one of the top three performing councils in the country.
He pointed to Stockton’s success in being the overall winner of the city category in the 2007 Britain in Bloom finals as a clear indication of how the appearance of the borough had been transformed.
Examples highlighted by Mr Garlick on the progress the borough had made were:
Stockton schools’ performance at five or more A* to C grades at GCSE or equivalent was 39.5% in 1997. This year the figure was 64.4%.
At the end of Key Stage 2 performance at Level 4 or more was, in English, 59.8% in 1997 and this year it was 84.5%. In Maths, the 1997 figure was 62.3%, this year it was 82.5%.
Satisfaction with the way the council provides services had risen from 45% in 2000 to 54% in 2006.
In 2000 Stockton’s average ranking in the index of multiple deprivation was 75th worst nationally. By 2007 the borough had fallen to 98th.
Housing regeneration work in the borough has seen 1,000 homes demolished and 500 new homes have been provided so far on the regeneration sites. There has also been an £89m investment over five years in improving the council’s housing stock.
Mr Garlick said: “The borough has been transformed in so many ways.
He sees the Tees Barrage and its “creation of an 11-mile lake” as a huge catalyst in the work to regenerate the borough.
And he said the modernisation of the political system in the authority provided a new focus on quick decisions in local government.
“Big changes will happen in the next five years. Thornaby town centre is being rebuilt, Billingham is about to be renewed and in Stockton town centre we have the Southern Gateway project,” said Mr Garlick.
He added that there will be further progress on the Stockton Middlesbrough Initiative.
“The Building Schools for the Future programme in the borough is another wonderful opportunity and another spur to the huge emphasis we have had on education.
“Events such as the Stockton International Festival have gone from strength to strength.
“I have had a fantastic 13 years but it will be good for Stockton to have a change.
“Durham will be a very big unitary council. It is a big job and a big challenge,” said Mr Garlick, who plans to continue to live in Stockton.

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Antibiotic 'cerebral palsy link'

A study has linked a small number of cases of cerebral palsy to antibiotics given to women in premature labour.

The UK study found 35 cases of cerebral palsy in 769 children of women without early broken waters given antibiotics.

This compared with 12 cases among 735 children of women not given the drugs. Advice is being sent to the study's 4,148 mothers and a helpline set up.
Medical experts stressed pregnant women should not feel concerned about taking antibiotics to treat infections.

These findings do not mean that antibiotics are unsafe for use in pregnancy The Royal College of Obstetricians and Gynaecologists

The Oracle study was the largest trial in the world into premature labour and was set up to investigate whether giving antibiotics - which might tackle an underlying symptomless infection - to women with signs of premature labour would improve outcomes for babies.
One in eight babies in the UK is born prematurely and prematurity is the leading cause of disability and of infant death in the first month after birth.

Premature labour
In 2001, ORACLE found the antibiotic erythromycin had immediate benefits for women in premature labour (before 37 weeks gestation) whose waters had broken. It delayed onset of labour and reduced the risk of infections and breathing problems in babies.

Pregnant women should not feel concerned about taking antibiotics to treat infections Chief Medical Officer Sir Liam Donaldson

Erythromycin and the other antibiotic studied - co-amoxiclav - showed no benefit or harm for the women whose waters were still intact, however, and doctors were advised not to routinely prescribe them in such circumstances.

To study the longer-term outcomes, the Medical Research Council-funded scientists followed up the children seven years later.

Unexpectedly, both antibiotics appeared to increase the risk of functional impairment - such as difficulty walking or problems with day to day problem solving - and treble the chance of cerebral palsy in the children of the women whose waters had not broken.


Of the 769 children born to mothers without early broken waters and given both antibiotics, 35 had cerebral palsy, compared with 12 out of 735 whose mothers did not receive antibiotics in the same circumstances.

The reasons behind this link are unclear, particularly as there was no increased risk of cerebral palsy in women whose waters had broken.

Hostile environment

The researchers believe cerebral palsy is unlikely to be a direct effect of the antibiotic but rather due to factors involved in prolonging a pregnancy that might otherwise have delivered early.
Researcher Professor Peter Brocklehurst of Oxford University said: "We have a suspicion that infection is implicated in premature labour.

"Antibiotics may merely suppress levels of infection to stop preterm labour, but the baby remains in a hostile environment."

Infections during pregnancy or infancy are known to cause cerebral palsy.
In a letter to doctors and midwives advising them about the findings, Chief Medical Officer Sir Liam Donaldson says: "Pregnant women should not feel concerned about taking antibiotics to treat infections.

"It is important to note that these women had no evidence of infection and would not routinely be given antibiotics."

Where there is obvious infection, antibiotics can be life-saving for both mother and baby, the CMO says.

The Royal College of Obstetricians and Gynaecologists said: "These findings do not mean that antibiotics are unsafe for use in pregnancy. Pregnant women showing signs of infection should be treated promptly with antibiotics."

Cerebral palsy can cause physical impairments and mobility problems.

It results from the failure of a part of the brain to develop before birth or in early childhood or brain damage and affects one in 400 births.

A helpline is available for study participants on 0800 085 2411 between 0930 and 1630 BST. NHS Direct has information available for other members of the public.

A spokeswoman from the special care baby charity Bliss said: "This highlights the importance of fully understanding both the immediate and long-term impact of the care and treatment that both mother and baby receive at this crucial time."

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Twins take part in landmark medical procedure

Identical twin brothers have made medical history, after one gave the other a piece of his back.


Scott Mills needs metal rods put in his spine to help him breathe more easily Photo: Archant
Luke Mills, 19, underwent the procedure because his brother Scott suffers from severe scoliosis or curvature of the spine.
Scott, from Mutford, Suffolk, needs metal rods put in his spine in an operation that will help him breathe more easily, stop his spine collapsing, and in the long term, save his life.
After a number of operations, however, Scott's back was so scarred and thin that surgeons would not have been able to sew him up again.
Last month Luke donated a 10in by 6in flap - a piece of skin, fat and muscle with a vein and artery - from his back.
Surgeons at the Norfolk and Norwich University Hospital removed the flesh before colleagues grafted it on to Scott's back in an adjoining theatre.
It is the first time the operation has ever been carried out on identical twins.
Elaine Sassoon, consultant plastic surgeon at the hospital, said: "I had sleepless nights. It was worse than a standard operation because you are operating on a healthy person who doesn't need surgery.
"If I had taken the flap from him and failed it would have been terrible."
Scott, who plans to study accountancy at the University of East Anglia, has had scoliosis since he was a baby.
He said: "I think we are closer than brothers because we are at the same stage of life. We were already close anyway so we knew we would do anything we could to help each other."
He added: "It was really nice of him to say he would do it. There is a lot more pain involved for the donor than the recipient."
Luke, who is studying French at the British Institute in Paris, said: "He was more worried about me than he was about himself, after all he had been through."
Scott's next operation is in October, when he will have the metal rods put back in his spine.

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Cricketer Grace, 12, beats spinal condition

When Grace Tebbatt was born with a spinal condition, her parents feared she could be crippled for life.
However, with determination and the help of a team of medical specialists, she has beaten the odds to become a talented cricketer.
Grace, 12, from Mountsorrel, was born with scoliosis, which causes a curvature of the spine.
Three or four in every 1,000 children have the condition. In most cases it corrects itself, but a small number need surgery to stop it getting worse and damaging the spine, chest, pelvis, heart and lungs.
Doctors at Leicester Royal Infirmary spotted the condition in Grace when she was 19 weeks old.
At three, she had an operation to fuse her lower vertebrae and give her greater flexibility.
The operation was a success and she is now able to run around like any other child her age.
This summer, she was picked for Leicestershire under-13 girls cricket team as a fast bowler and also plays against boys for Barkby United Cricket Club.
Grace, who attends Vale of Catmose College, in Oakham, said: "I love playing cricket and I'm really thankful for all the support I've received from my family, friends and doctors.
"Thankfully, I'm able to play sport. Some people with scoliosis aren't quite so lucky."
Her dad, Mark, who plays for and coaches Barkby United, said Grace was a very active child despite the setback early in her life.
He said: "We would always let her run around at a young age. She really enjoyed swimming, too, and, thankfully, her back never really got worse.
"We had to be careful and constantly watch her back, because Grace's shoulders and hips were out of alignment.
"I'm really grateful the condition was spotted early because she loves playing sport and, thanks to the treatment she's received, she can do that.
"With many people, if scoliosis isn't treated early, they can suffer severely."
Members of the Barkby United cricket team's senior side are embarking on a 92-mile charity bike race – partly in support of the British Scoliosis Research Foundation.
They have raised more than £3,500 so far and hope to have at least £5,000 before they set off next Saturday.
The ride begins at the cricket club grounds and finishes in Hunstanton, on the north Norfolk coast.
John Hollis, who helped organise the charity event, said 10 players would be taking part.
He said: "We're going to use some of the money to pay for an artificial pitch at the club, which we really need.
"The rest will go to charity. We all know Grace and her dad and we all know what a great cause we're cycling for."
Dad Mark said: "We've been training seriously since April.
"It's been a struggle but it's a joy to feel fitter."
As well as becoming a fast bowler, Grace is a keen martial artist.
She is due to take her green belt exams in taekwondo in the next few weeks.

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When a stroke strikes the youngest

By Julie Randle

Jessica Spear wanted to be told she was crazy.

That news would have put to rest her worst fears — that something was wrong with her son.

Instead, those fears were confirmed.

Her son, Brendon, was the victim of a perinatal stroke, a stroke that occurs in the womb or within 30 days of birth.

The stroke left Brendon with mild cerebral palsy, speech difficulties and under-developed back and shoulder muscles on his right side, the result of muscular scoliosis.

“I had never heard of a stroke happening to a child,” said Spear, 36, who conducted admissions and evaluated patients for nursing homes in the mid-1990s. “When I started seeing the symptoms — in hindsight — I looked at him and it looked like he had a stroke.”

Spear had an inkling of what was wrong with her son, but it took 19 months before a doctor finally pinned down a diagnosis.

Spear first noticed something abnormal two weeks after Brendon came home — he never moved his head to the right.

As he grew older, the symptoms accumulated.

She noticed that he sat hunched over in his high chair, he clutched his right hand, his right foot was at a weird angle when he attempted to walk and he used his left hand for everything.

And he said few words. He made noises.

“He said ‘mama’ and ‘dada’ on time and then for months you heard nothing,” she said. “He did noises. Some stroke patients make noises.”

As signs that seemed odd to her appeared, she informed doctors.

One dismissed her claims as something her son would grow out of by age 2 while others reassured her that Brendon was healthy.

But she was right. And she knew it.

Nearly a year and a half after Brendon was born, doctors determined he had suffered a stroke. The diagnosis was confirmed through an MRI.

Along the way to the correct diagnosis, Spear and her son saw eight doctors, including two orthopedists and four neurologists.

The first orthopedist said Brendon was fine. The second orthopedist recognized that something was wrong with Brendon and referred them to a neurologist.

The chain of doctors and the reassurances that Brendon was in good health were not good enough for Spear.

“I needed a reason why he was OK, the foot was the way it was and why he was left-handed,” she said.

Spear and her husband had invited Terry Dollinger, a parent educator for Parents as Teachers, to work with them in their South County home soon after Brendon’s birth.

Dollinger, a veteran of working with parents on child development, saw the same problems Spear had been seeing all along.

Dollinger provided a source of support for Spear, who felt guilty over her inability to figure out Brendon’s problems.

She and her husband, Stephen, 42, a captain with the Webster Groves Police Department, were first-time parents, which added to their anxieties.

Despite her gut instinct that something was wrong, Jessica Spear hoped someone would step forward and tell her she was wrong, that she was imagining her son’s troubles.

Dollinger reassured Spear that she was correct, that Brendon needed help.

“I was her cheerleader,” Dollinger said.

Finally, the walking difficulties and speech signs were too obvious too ignore.

In March 2007, a neurologist conducted an exam. Brendon was asked to reach for toys, grab them and poke them. He was diagnosed with mild cerebral palsy, which includes many neurological disorders that affect body movement and muscle coordination. The doctor wanted to know why the condition occurred.

“He believed the cause was a brain tumor or stroke,” Jessica Spear said. “We were in a race against time. I felt so angry. I was cheated. This started at nine months and this was 19 months. I should have at least known 10 months ago about this.”

The MRI showed that Brendon had damage on the left side of his brain, which affects motor control on the right side of his body.

Doctors believed the stroke happened during Jessica Spear’s second or third trimester of pregnancy.

So how does a baby suffer from a stroke?

One possible explanation is that a mother’s blood becomes sticky in the body’s effort to prevent excessive blood loss during birth.

This can cause blood clots and, later, strokes in babies, said Dr. Brad Schlaggar, an associate professor of neurology and pediatrics at Washington University School of Medicine and St. Louis Children’s Hospital.

One baby out of every 5,000 born will have a perinatal stroke, said Schlaggar, director of the pediatric neurology residency training at Washington University School of Medicine. He doesn’t consider this rare, but it can be difficult to detect.

“Perinatal stroke is far more common than most people realize, but the manifestations can be subtle,” he said.

About half of patients with perinatal stroke are diagnosed because they have seizures within the first several days after being born. The other half of patients are diagnosed because there is something different about their development of motor and/or cognitive skills.

“Brendon hit his milestones on time,” Jessica Spear said. “He was a tricky guy.”

This is one explanation for the delay in diagnosis.

“If the developmental issue is subtle, the problem may be minimized and a workup will not be carried out,” Schlaggar said. “This scenario is the most common reason these days that a perinatal stroke will be detected relatively later.”

Today, Brendon attends preschool and receives physical and occupational therapy at his early childhood center in South County.

From time to time Brendon wears a cast on his left arm for two weeks at a time. Last year, the Spears decided to try constraint-induced therapy, which forces the brain to learn to use the other arm and helps Brendon build up strength in his weak arm.

This is his fourth round of therapy. He has sported a cast in December 2007 and in March, May and August of this year.

He also wears a McKee thumb splint on his right hand that forces his thumb out because of the cerebral palsy.

The Spears recently established Brendon’s Smile…Raising Awareness for Childhood Stroke, a non-profit organization designed to raise awareness for perinatal and childhood stroke and to advocate for child survivors of stroke.

The Spears wanted to spread the word about stroke so other families are spared what they went through. The Spear family and their story are featured in the September/October issue of “StrokeSmart,” a magazine published by the National Stroke Association.

“There’s not enough information about childhood stroke, the prognosis and who it affects,” said Stephen Spear, 42. “We’re using Brendon’s story to propel the bigger issue of childhood stroke.”

For more information visit, www.bredonssmile.org.

Want to go?What: Brendon’s Smile — Raising Awareness for Childhood Stroke information rally and walk

When: 9 a.m., Sept. 28

Where: The Atkinson Shelter off Grant Road at Jefferson Barracks, 251 Cy Road

Info: Visit www.brendonssmile.org

Stroke knows no age

Signs of possible stroke:

-- Seizures in infants that are confined to one area of the body

-- Poor feeding in newborns or early hand preference before 10 months

-- Delays in motor development

-- Tightness or restricted movement in legs and arms

-- Language delays

-- Seizures or sudden onset of one-sided paralysis are seen in older children

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Peering Eyes Watching

When I sit quietly, and think over my life, as a rebel, advocate, and activist with a cause, I remember certain residue of the most frustrating aspect of dealing with my own disability. These remains have been the left over hurt and pain that were caused by the “attention of self styled experts” and people who wanted and had to have control at all cost.
Having been brought up to believe in the truth and goodness in man kind, I was won over, persuaded, and convinced by these so called experts, in the disabled community. These experts exercised restrained management to try and run other peoples lives, and have complete control and say so over our destination, despite what I truly believed was right for me, in my heart.
These experts tried on numerous occasions to impose their authority, their supremacy, and their power in many areas of my life. I personally had to struggle and fight back with everything I had, to ward off their arrogance in obtaining my education as well as in employment. Sometimes, I simply was not taken seriously or sincerely by both experts and those I worked with. My word was not regarded or deemed worthy.
For example, I was falsely labeled mentally retarded on three separate occasions. This was designed to force me to except what one particular expert wanted me to limit my life to. He believed himself to know “all” about what he felt I shouldn’t be allowed to do with “my” life. His opinions were designed around a very old fashioned, out-moded, and passé, concept of what we, with hidden learning disabilities, were supposed to theoretically do. We were sentenced to live life in a workshop setting. We were beaten and battered down to believe that, that was all we were able to handle and receive out of life.
What was even more frustrating was that this gentleman could not work himself without having an interpreter by his side. Who was he to tell me what my dreams and goals aught to be, or how I should direct my live. And, how dear he tell me where my interest lie!
So, the very person who should have been the most supportive, helpful, and kind to me, turned out to be the greatest obstacle of all. One situation at a time he impeded, held me back, and obstructed my future academic progress. It was not
only very irritating, infuriating, and exasperating to have to waste time being evaluated and judged severely, but it limited my future work.
This arrogant, haughty, disturbing attitude was shared by others too! Some of then where people I worked with. You would think it would be different. But this was not the case- as I found out this attitude was everywhere! They assumed that simply because they did not have a visible disability they had every right to make fun of me, belittle me, and minimize my contribution to myself, my life, others, and the world.
Some people refused to allow me to work as I chose and saw fit. They did not wish me to be an equal and productive person in society. These professionals found every way possible to discredit my abilities, my talents, and my aptitude of skills. I had to personally find clever and survival oriented techniques to persuade not only the experts, but those clients I worked with to make an effort to follow instructions.
These struggles resulted from the same attitude which doesn’t grasp our full potential and abilities. I think the greatest thing we can do as a community is to be committed to one another, help in any way we can, and have an active directed life-style. We must retain the right to express our own vision to the world in our own creative, original, genuine way. It is also very vital that we as disabled people are supportive of our own community, and all their dreams, wants, and desires.
Because of my situation, I have been thoroughly committed to giving back all of what I never received from these “helpful” counselors. In every jagged, angle of my journey, I have sought to be a voice when there was no voice for the unheard among us. All of us, in our own special way, ought to find it within the depths of our beings, to give unconditionally, unreservedly, and completely to our total cause. It will harm and hamper many if given with half-measures or haphazardly.
It is truly annoying to think of how much time we all must spend getting around a system that does not work. It wouldn’t bother me so much if I didn’t see stubbornness so many show. The issue is no longer what is best for our own goals, but rather, how to impose the expert’s viewpoint and will upon us. We have the right as children of God, and citizens of a free country, to run our own lives. That must include the right to make mistakes, and learn from them. Our “friendly” experts think they are giving us a better life, but it is too often a comfortable slavery. They do not see with our eyes, and feel with our hearts, nor do they talk the same language as we. Like Sara in “children of a lesser God,” we must retain our will. That may be disconcerting to the normal community, but it is preferable to a life-time spent waiting to be told what to do, or fighting a system that just does not work.

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Thoughts on S.A.D.

Yesterday was day when I felt things slowly to change. My eyes opened early morning about 7:30 AM, I did not want to get out of bed as much as I tried. I'd sit up out of bad, look around and shortly after that my head would go crashing down back into the pillows. I'd pull the covers back over my head and try to sleep for a few more minutes, after awhile I pulled myself up and felt the stiffness in my neck and back.

The clouds were grey and gloomy, the winding blowing in short spurts and the sky letting droplets of water hit the earth as it pleased. I was very tired and lethargic,tense and anxious. I know these feelings, they associate with something called Seasonal Affective Disorder or S.A.D. for short. It affects millions and millions of people a year. Its very tough to live with, and very often it can be very difficult to confront.

Its very difficult to live and cope with as the seasons change, it is said that S.A.D. is caused by our bodies lack of sun light. So light therapy is one the best treatments to date, along with various medications. I wanted to write about this illness because, its very real and there is still a real stigma behind it and various other forms of depression. As I said a bit ago, it can be very hard to confront and talk about, because sometimes people don't know how to react to such news.

There's a great fear that lingers. Most may think "What are people going to think of me?"

While depression and other forms of mental illnesses are just that, and illness. I believe love and grace is the best medicine possible. With this condition it really takes control of your mood. You become cranky and fits of anger at times, and the smallest acts of love for the moment will not seem to help, and that would be enough for anyone to pack their bags and run the other direction.

But if you have friend or family member who suffers from this illness, you must learn to stay close and yet at a safe distance. What I mean by this is, sometimes with depression one desires to be left alone, doesn't want advice, doesn't want to hear things like: "It'll be okay, just think positive". And while this may very well be said in love, it can add to the agitation.

Often a close silence is best, the silence often says things the voice can't. With that said I want to address the spiritual side of mental illness. A majority of believers see any mental illness as some form of demon possession, I honestly I have yet to see any biblical evidence of such of statement, and in all truth... This is beyond annoying and sometimes can be a smack in the face.

I believe those who follow Yeshua (Jesus) and are afflicted with S.A.D. have said the prayers, lost all hope in Church and want nothing more then to have someone pull them through the gloom of the seasons (fall/winter) and that is exactly what needs to happen. There is hope. I believe God has a extra grace and stillness with those who don't have the strength or energy to move.

And we as humans regardless of world view or spiritual belief should as well. In the words of Matt Kearney: "I can be the wall when you fall down, find me on the rocks when you breakdown." I believe that all our minds need to be transformed and renewed, if they are not, we will never learn what it means to love the oppressed. There is no greater calling in life than to do that.

So, may we learn to sit still.
May we learn to quiet ourselves,
and learn to breath, and understand
that life is not only fragile but beautiful with every passing moment. May we endure the full force of life, in the pain and hope. May we see with new eyes and start to change our perspectives for a better tomorrow, and softer mornings.

Go in peace.

-Brandon Ryan

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Aerobic Exercise For The Wheelchair-bound

ScienceDaily (Sep. 10, 2008) — University of Texas at Austin alumnus, Chris Stanford (MSEE '91), and Electrical & Computer Engineering undergraduates are working on making exercise fun for wheelchair users. For the last year, Stanford has been partnering with engineering seniors to test his idea for a virtual reality treadmill for the disabled.
"Not many people realize," says Stanford who has been confined to a wheelchair since 1988, "the special health risks faced by wheelchair users. Everything is more difficult, including eating right and getting enough exercise. Because of this, the incidence of obesity, diabetes, and cardiovascular disease is several times the rate of the general population."
Stanford's solution, called TrekEase, approximates an arcade driving game. Users back a manual wheelchair into a frame, engage the flywheel for resistance, and start the driving software.
"When Chris approached me last year about using [TrekEase] as one of our senior design projects," says UT-ECE professor Jon Valvano "I was enthusiastic. It's an interesting engineering challenge. He came in with a mechanical system that had already been vetted for safety. The students added software and sensors that make the experience interactive."
Users can control speed and direction. A new group of students is continuing the project this semester. They plan to enhance the existing design so the system detects tilt making flight simulation possible and to work on the packaging so it will be affordable and easily reproducible.
"There is no way I could've done this by myself. I don't have the skill set," says Stanford." The students are amazing. They step up to every challenge."
Adapted from materials provided by University of Texas at Austin, Electrical & Computer Engineering, via EurekAlert!, a service of AAAS.

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Challenge Air Events Give Disabled Individuals Free Flights

Challenge Air Events Give Disabled Individuals Free Flights

Children and adults with disabilities, including Cerebral Palsy, as well as individuals with certain types of cancer, such as mesothelioma, have the opportunity to take flight with the Challenge Air program, which provides free flights for children and adults & their families. Other constraints include that of breathing in which case children would require nebulizers.

The program operates in about 16 different U.S. cities, and an event costs about $13,000. Generally, local businesses sponsor the event. Challenge Air has been providing flights for the last 16 years and recruits volunteer pilots to give plane rides.


Children and adults with Cerebral Palsy experience various degrees of learning disabilities and may be at a heightened risk of developing certain health problems, including heart defects and ear infections.

None of that matters, however, when a disabled child is up in the air at a Challenge Air event.

Founder Rick Amber believed that “every disabled person should see the world from a different view…out of their wheelchairs and crutches and from the sky.” Amber, who lost the use of his legs while serving in the United States Navy, was passionate about providing disabled individuals with new and unforgettable life experiences. Amber passed away in 1997, but his wish is carried on by the staff at Challenge Air.

To contact Challenge Air, please visit www.challengeair.com.

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Tees hero Kenny has sights on more gold

Sep 5 2008 by Sarah Judd, Evening Gazette

THE Beijing Paralympics kick-off tomorrow. In the last of our series looking at the lives of Teesside’s three Paralympians, Sarah Judd meets an athlete who has overcome cerebral palsy and bereavement to become one of the best in the land.


SOUTH BANK-BORN javelin ace Kenny Churchill has broken the world record five times.

With a staggering complement of 20 medals - including 14 golds - Kenny is among the best of British athletes.

But at 33, he will not rest until he has given gold medal-worthy performances in Beijing next Tuesday, before hopefully ending his career with a bang in London 2012.

Speaking of his Beijing chances, his dad, Kenneth, 68, said: “He’s going out to win it. If he doesn’t win it, it won’t be for the want of trying.”

His dad also reveals Kenny will end his career with what he hopes will be the performance of his life on home turf.

“Kenny has already said that if he can get through to London 2012, that will be his last,” he said. “He’s a big occasion athlete and thrives on a good atmosphere.”


Like many Paralympic athletes, Kenny’s career in sport began with physiotherapy to help him cope with his disability.

Kenneth said: “Kenny suffers from cerebral palsy which means the right hand side of his body doesn’t receive signals from the brain as quickly as the left and he has speech problems. He didn’t walk until he was about four or five and then he had his leg operated on and started to make progress.”

Following the operation, Kenny had ongoing physiotherapy while his dad taught him how to swim.

“He achieved some swimming medals and that developed his interest,” said Kenneth.

“Then, when he was about 10, we were at a sports event in Walker, Newcastle and a group of trainers from around the North-east were there. One of them gave Kenny a ball filled with sand and told him to throw it down the gym as far as he could.

“It hit the wall about half way up on the other side and the trainer, who was from Cumbria, just said, ‘I thought so.’

“Ever since then he’s been a thrower and has competed in the discus, shotput and javelin, but now specialises in javelin.”


Shortly after the breakthrough, Kenny joined Cleveland Harriers and trained at Clairville Stadium, Middlesbrough.

While he was a pupil at Ormesby School, his teacher Ian Smith also supported his development in athletics. Kenny wen