February 9, 2010 by afp


I would venture to say many of us have issues with spasticity or tone. What is this, what does it mean, and what is the difference? My, oh, my, I was confused when they would mention these two different terms, and then I decided to dig. I found out it was more confusing trying to express the meanings.

I did find out that spasticity seems to react differently for each of us. Spasticity and tone affects us with weird mannerisms. Some do well on medications, some do not. Some have pain associated with this, where some do not. Some are assisted by physical therapy, whereupon reading further, it shall be detailed.

　

Overview of spasticity

The most common causes of spasticity are lack of oxygen to the brain before, during, or after birth (cerebral palsy); physical trauma (brain or spinal cord injury); blockage of or bleeding from a blood vessel in the brain (stroke); multiple sclerosis (MS); or infection of the brain (encephalitis) or the covering of the brain and spinal cord (meningitis).

When damage that causes the eventual spasticity first occurs, the muscles are usually flaccid before they become spastic. Spasticity may not be present all the time—it may be related to a trigger, or stimulus, such as pain, pressure sores, a urinary tract infection, ingrown toenails, tight clothing, or constipation.

Spasticity may be painful, especially if it pulls joints into abnormal positions and or prevents a normal movement of the joints. Spasticity may range from slight muscle stiffness to permanent shortening of the muscle. When the muscle is permanently shortened, the joint becomes misshapen. This is called a contracture and is one of the most significant consequences of spasticity. Another closely related problem with muscles in many people who have spasticity is clonus, or rapid repeated muscle spasms.

While spasticity may affect any muscle group, there are some common patterns. When spasticity affects one or both arms, flexed (bent) elbow, flexed wrist, and clenched fist may result. These can all affect the person’s ability to dress, eat, or write or may interfere with balance, thereby causing difficulties with walking. Spasticity of the legs can cause flexed hip, adducted (or scissoring) thigh, stiff knee, flexed knee, equinovarus foot, and hyperextended great toe (which is also called the hitchhiker’s toe). Spasticity of one or both legs may interfere with the ability to walk, position in bed, sit, transfer, or stand.

　

Epidemiology

Overall, spasticity affects about 500,000 people in the United States, and more than 12 million people throughout the world. The number of people affected depends upon the cause of the spasticity. In the United Kingdom, approximately 100,000 people have a first-time stroke every year, and an additional 30,000 have a repeated stroke. Stroke afflicts almost 2,000 out of every 1 million people per year worldwide. Almost 40 percent of people who have a stroke continue to have spasticity one year later.

One year later? Ha! I bet, besides myself, many still have it years later.

　

Clinical examination

A standard evaluation of the nervous system forms the basis of the clinical examination in spasticity. Strength and reflexes are both assessed in this examination. The clinician asks the patient to relax and then moves the joints through their full range of motion at various speeds. Spastic muscles may have a “spastic catch,” exhibit the “clasped knife” phenomenon, or both. Observing the person with spasticity perform activities such as walking, drinking from an open cup, and moving from one position to another often yields valuable information.

The clinical examination also includes an evaluation of deep tendon reflexes. The most commonly used method of testing these reflexes is the tapping technique. With the patient sitting on the examination table and his or her legs hanging freely, the examiner gently but firmly taps below the knee (testing the patellar reflex), first on one leg and then the other.

The responses should be the same in the two legs. Similar techniques may be used to test reflexes in the Achilles tendon (behind the ankle), and reflexes may also be checked in the biceps, triceps, and brachioradialis muscles of the arms.

　

The Spasticity Management Team

The best treatment of spasticity usually includes an active patient or advocate and caregivers working with several health-care professionals from various medical backgrounds. Members of this team may include one or more of the following people.

Neurologist
A neurologist is a medical doctor trained in disorders of the nervous system. The neurologist may diagnose the neurologic problem; prescribe treatments, including medications and physical and occupational therapy; and refer the patient for surgical evaluation if necessary. The neurologist may also inject the chemodenervation treatments (see the section on treatment that follows).

Physiatrist
A physiatrist is a medical doctor who specializes in physical medicine and rehabilitation. The physiatrist may design the rehabilitation program, working with other team members to maximize the patient’s function and minimize the disabling aspects of the neurologic injury. The physiatrist may also prescribe medications and administer chemodenervation treatments.

Physical Therapist
A physical therapist is a healthcare professional who is responsible for the physical aspects of treatment. The physical therapist may perform or direct another person to perform the exercises that are necessary to assist in maintaining the range of motion of limbs affected by spasticity. The physical therapist may also apply and fit braces, splints, or casts that may be prescribed by the physiatrist or other treating physician.

In addition, the physical therapist may direct training to improve the patient’s ability to walk or move and may instruct patients and caregivers on how to position affected arms and legs to help reduce spasticity. A physical therapist often works closely with an occupational therapist to design changes in the home and equipment that might be necessary to accommodate the patient’s needs.

Occupational therapist
An occupational therapist is a healthcare professional who specializes in adaptation of the physical environment to meet the patient’s needs. The occupational therapist may teach modifications for dressing, feeding, and grooming to the patient and caregiver. This therapist may also offer expertise on adaptive devices such as wheelchairs and bath equipment and may advise on home and workplace modifications to increase accessibility and ease of use. The occupational therapist is usually the medical professional who advises the school on issues such as seating, writing, and use of facilities.

Neurosurgeon
A neurosurgeon is a medical doctor who is specially trained to perform surgical procedures related to the nervous system. For example, when a patient with severe spasticity has a positive response to a screening test (intrathecal baclofen bolus) and is then recommended to receive continuous intrathecal baclofen (ITBTM Therapy), the neurosurgeon may implant the baclofen delivery pump.

Neurosurgeons may also perform an operation to destroy selected sensory nerves at their entry point into the spinal cord (selective dorsal rhizotomy) when other treatments cannot offer adequate spasticity relief. When a patient requires exposure of a target nerve for chemodenervation, the neurosurgeon is usually the physician who performs that operation; a neurologist or physiatrist then usually performs the chemodenervation.

Orthopedic surgeon
An orthopedic surgeon is a medical doctor who is specially trained to perform operations related to bones, joints, muscles, and surrounding connective tissue. These types of procedures may help to reduce or correct contractures that lead to abnormal positioning of joints. Orthopedic operations often involve reconstruction or revision of tendons and bones. The orthopedic surgeon may also assist with the fitting of braces and assessing growth and development.

Spasticity treatment
In some patients with mild spasticity, the best treatment may be no treatment, with a watch-and-wait strategy. Typically, treatment is reserved for spasticity that causes pain, interferes with activities of daily living or sleep, or leads to increasing levels of functional disability.

Some key questions that should be answered before beginning any treatment for spasticity include:
1. Is treatment necessary?
2. Do the patient and caregiver have the time and resources necessary to put the treatment into action?
3. Will the treatment improve the patient’s or the caregiver’s quality of life?

　

Treatment goals

Patient and family expectations regarding the possibilities of treatments and outcomes may be realistic or unrealistic. Inappropriate expectations about the effectiveness of treatment may lead to disappointment regarding relief of symptoms and pain. Therefore, ongoing communication and agreement by the patient, caregivers, and healthcare professionals regarding the goals of treatment are extremely important. The following list includes goals that are commonly developed in the treatment of spasticity.
· Relieve the signs and symptoms of spasticity
· Reduce pain, frequency of spasms, or irritating stimuli
· Improve gait, hygiene, activities of daily living, or ease of care
· Reduce problems with passive function, that is, the functions provided by the caregiver, such as dressing, feeding, transfer, and bathing
· Improve voluntary active motor function, that is, the behaviors and functions that are under the patient’s control, such as reaching for, grasping, moving, and releasing an object

　

Types of treatment

A combination of various types of treatment is usually required to attain the specific goals of treatment for a particular patient. Most people with spasticity require physical and occupational therapy to improve or maintain the range of motion in their spastic limbs.

Description of types of therapies: You can follow this at the following web link: www.wemove.org/spa/spa_pot.html.

　

Physical and occupational therapy

Although physical therapy is a mainstay of treatment for spasticity, there has been surprisingly little research conducted to support the use of these techniques. Physical therapy for spasticity refers to a range of physical (as opposed to drug or surgical) treatments. These treatments of spastic muscles are designed to reduce muscle tone, maintain or improve range of motion and mobility, increase strength and coordination, and improve care and comfort.

The choice of treatments is individualized to meet the needs of the person with spasticity. Physical therapy is the most common form of treatment for spasticity in children. The success of the therapy is often based upon the motivation of the person with spasticity and the caregiver, as well as the physical therapist’s skills.

Please note the last paragraph. Team effort is a must. The success of therapy is often based upon motivation of the person and the caregiver. If you are alone, the team may be you and the therapist. It will not work unless you have motivation. I refer it as “attitude.” I have written about “attitude” in previous articles. Get one !!! Never give up, I improve everyday despite two brainstem strokes.

Here are some additional sites for more info:
- www.webmd.com/pain-management/pain-management-spasticity
- www.geocities.com/aneecp/terms.htm
- www.ninds.nih.gov/disorders/spasticity/spasticity.htm

Led by Professor Linda Worrall from UQ's Clinical Centre for Research Excellence (CCRE) in Aphasia Rehabilitation, the study will be the first of its kind to use the technology in combining two complementary approaches to aphasia rehabilitation into one optimal treatment outcome.

Aphasia, a language difficulty attributed to injury of the brain, usually from stroke, is estimated to affect 80,000 Australians. It can vary from mild difficulties with finding words, or reading text, to not being able to understand what people are saying and being unable to speak.

As part of the study, 50 participants with aphasia will wear voice-activated recorders for four weeks to record the amount of time they talk each day.

The small device, to be incorporated into their mobile phone, will function in a similar way as a pedometer is used in the 10,000 steps program, by keeping track of the users "communicative fitness".

Professor Worrall said that participants would then be allocated to appropriate speech pathology programs based on their communicative fitness, which will help them gradually communicate more often.

"Our study aims to examine whether people with aphasia can improve their language and life participation by increasing the amount of time they talk during their everyday lives," she said.

"The benefits of this program for people with aphasia and their families is that it not only aims to improve language function but also to prevent or overcome the effects of social isolation that come from not being able to understand or communicate clearly with others.

"We envisage that this study will lead to better communication outcomes, less social isolation, and better quality of life for people with aphasia and their families."

Professor Worrall said that the CCRE has recruited all known available researchers associated with aphasia in Australia and relevant international experts to achieve this goal, and anticipates that the size of the team will double during the program.

The major outcome from research within the CCRE will be the development of the Australian Aphasia Clinical Pathway in close collaboration with speech pathologists and consumers.

Source
University of Queensland

ALEXANDRIA, VA -- Constraint-induced movement therapy (CIMT) is a potentially effective form of intervention for children with hemiplegic cerebral palsy, but more research is needed, according to a new systematic review published in the November issue of Physical Therapy (PTJ), the scientific journal of the American Physical Therapy Association (APTA). The review, which analyzed 21 intervention studies and 2 systematic reviews, concluded that further research should focus on the frequency, duration, and type of constraint used to treat the affected limb. Similar gains may be achieved when both arms are used together during therapy, but there have not as yet been sufficient studies that compare these two types of physical therapy. Moreover, the review concluded that there is insufficient research on the impact of CIMT on a developing child's undamaged brain regions and that more investigation is needed.

Hemiplegic cerebral palsy affects one arm and leg on the same side of the body. CIMT forces the use of the affected side, specifically the upper extremity, by gently restraining the unaffected side in a mitt, sling, or cast. The patient then practices moving the affected arm for varying durations of time and intensity. Previous studies showed support for the use of CIMT to improve the frequency of use of the affected arm for children with hemiplegia. In most studies, positive effects were demonstrated 6 to 8 months after intervention.

"Although previous studies reveal a marked increase in function of the affected limb, there is a strong need for more rigorous studies to determine what constitutes an adequate dose of CIMT for pediatric patients with hemiplegia," said physical therapist Linda Fetters, PT, PhD, FAPTA, the holder of the Sykes Family Chair in Pediatric Physical Therapy, Health and Development in the Division of Biokinesiology and Physical Therapy, and a professor in the Department of Pediatrics at the Keck School of Medicine at the University of Southern California.

This systematic review specifically focused on research involving children younger than 18 years of age, as the central nervous system in these young children is still in the early stages of development. One of the theories behind the success of CIMT in children is that the developing brain has the capacity to reorganize learning.

"What we don't yet know is the impact of prolonged restraint on a child's developing nervous system," said first author Hsiang-han Huang, MS, OT, a ScD student in the Department of Physical Therapy and Athletic Training at Boston University. "Depending on the stage of development during which CIMT is applied, its potential impact may differ."


Physical therapists are highly-educated, licensed health care professionals who can help patients reduce pain and improve or restore mobility -- in many cases without expensive surgery or the side effects of prescription medications. APTA represents approximately 76,000 physical therapists, physical therapist assistants, and students of physical therapy nationwide. Its purpose is to improve the health and quality of life of individuals through the advancement of physical therapist practice, education, and research. In most states, patients can make an appointment directly with a physical therapist, without a physician referral. Learn more about conditions physical therapists can treat and find a physical therapist in your area at www.moveforwardpt.com.

They can be life-threatening at times, and they can certainly affect the quality of the patient’s life.

There are many neurological conditions and physiotherapy can help many of them.
Alzheimer’s disease takes away the declining years of many older people.
It is surprising to note that it can occur in people 40 years old or younger.
ALS or Lou Gehrig’s disease is a disease that robs the brain and spinal cord of the ability to move.

Both of these are neurological diseases that can be helped by physiotherapy.
MS, another of the neurological conditions that affects the brain and spinal cord, can lead to a long, slow decline.

Parkinson’s disease is another of the neurological conditions of the brain.
This one can cause shaking and loss of coordination, and problems moving and walking.
Physiotherapy offers some relief to these patients.

Guillain Barre Syndrome is one of the types of neurological conditions that affect the brain and spinal cord too.

It is a case of the person’s own immune system attacking outside these areas.
It can be severe enough to require emergency hospitalization. Physiotherapy offers help with regaining strength and adapting to life with the disease.

Neurological conditions that are autoimmune diseases are difficult to treat.
Myasthenia Gravis is one such illness. It causes muscular weakness because of a lack of communication between nerves and muscles.

Like other neurological conditions, it can be very debilitating. A great amount of physiotherapy is needed to help Myasthenia Gravis patients to live with their neurological conditions.

This includes strength training, training in the use of supportive devices, and help with common tasks.

One problem physiotherapists face when working with MG patients is that too much exercise will make their condition worse and not better. Many of the patients with neurological conditions cannot carry on daily functions such as caring for themselves and their homes.

It is not uncommon for these people to be unable to work. They may even have trouble walking or getting up and down stairs at all. Difficulty swallowing or breathing; dizziness, poor balance and falls, and a total lack of endurance plague many of these patients who have neurological conditions. Medications or surgeries can help with some of their problems, but many problems are ones they will have to abide.

Physiotherapy can offer solutions that other branches of medicine cannot.
Exercises, as in most physiotherapy, include strengthening and stretching exercises.
In whatever way is possible, patients with neurological conditions need to get aerobic exercise.

Physiotherapists may be able to make a plan so that this is possible.
Part of this plan for patients with neurological conditions would include balance training and coordination training. With these two skills in place, the patient will have a more advanced ability to do aerobic and other exercises. Aquatic exercise is also used.

Patients with neurological conditions must live with many problems of lack of movement and function.

Physiotherapy can help them to overcome some of these problems.It can make their lives easier and more pleasant, besides.

BY BRIAN PASSEY
bpassey@thespectrum.com

James Loris is walking again. The father of five who owned his own construction business was in a wheelchair, paralyzed from the chest down following an off-highway vehicle accident that fractured his C6 vertebrae.

"When I broke my neck, it pinched my spinal cord," Loris says, adding that the injury disrupted the brain's communication with his body, causing the paralysis. "He just turned the system back on."

Loris is referring to Steven Bennett, a physical therapist at Mountain Land's Southwest Neurological Rehabilitation Center in St. George. Bennett utilizes a neuromuscular training program to restore function to paralyzed or dysfunctional muscles resulting from a variety of medical conditions, including strokes, spinal cord injuries, brain injuries cerebral palsy and other neurological and orthopedic conditions.

The program utilizes electrodes placed on a patient's muscle group to read electrical signals transmitted from the brain to the muscle. An attached computer reads electrical impulses, displaying the signals on a monitor for the therapist and patient to see during treatments.

The therapist then uses a conditioning protocol to teach the brain to use alternate paths to communicate with the muscles. This conditioning is tracked by watching the signals on the monitor.

Once the brain learns to communicate with muscles through new paths it remembers the alternate paths for future use and, in effect, overcomes the paralysis.

That is how Loris came to walk again.

"You have to have determination," Loris says.

He's not quite back to his pre-accident mobility. Loris walks with a limp and has to concentrate on lifting his leg so he doesn't trip over his foot. Bennett says they have not yet been able to restore movement to the muscles in one of Loris' feet.

It's a long way from using a wheelchair because he didn't have any movement from the neck down.

"He'll come back in and we'll tune him up and smooth out that walk," Bennett says.

It's not an easy process. It's hard work. It requires strength. Yet Loris says he was driven because he had to provide for his family. He can even drive a vehicle with a standard transmission, clutch and all.

Bob Mower

The treatment is not just effective for accidents like what happened to Loris. Bob Mower, a retired Dixie State College chemistry professor, suffered a severe stroke in May and was unable to walk because he lost mobility on his entire left side.

"It was a long time before I could even move," Mower says.

Bennett says Mower was not supposed to be able to walk again. That was before he went through the neuromuscular training program.

"We had to turn on his whole left side," Bennett says.

Because Mower had the determination to move again, he checked out of both inpatient rehabilitation and home health before he was supposed to so he could begin working with Bennett.

Mower's wife, Susan, calls Bennett a "miracle worker" and says he's "perpetually optimistic and encouraging."

"Bob's in far better shape than anyone ever thought he would be," she says.

When he first visited the Southwest Neurological Rehabilitation Center, Mower couldn't walk or move his left hand. His goals were to overcome both of those obstacles and he has.

"Now I can walk from the parking lot into the therapy office, from the parking lot into the grocery store, and from the parking lot into church," he says. "I can move my hand and fingers well enough to hold onto things. I can hold the television remote so tightly my wife can't get it away from me."

Mower also likes how Bennett appreciates a good joke, because Mower is full of them.

Richard Cox

He still uses a wheelchair to get around but Richard Cox is much farther along in his recovery than he thought he would be after his injury more than three years ago.

"I had absolutely no movement," Cox says. "I couldn't type. I couldn't write my name. It's been a long 3 1/2 years."

Now he is slowly regaining movement. Although he still needs the wheelchair for everyday movement, he can walk short distances with the aid of a walker and knee brace.

Cox was riding in the back of a Jeep when he hit the roll bar and blood began to flood his spinal cord. Blood clots suffocated the spinal cord and peripheral nerves, leaving him paralyzed.

Then his aunt, who lives in St. George, mailed an article about Southwest Neurological Rehabilitation to Cox in Phoenix, where he lived at the time. About six months ago Cox moved to St. George to pursue treatment.

Like others who have sought Bennett's help, Cox has damage to the pathways normally used by the brain to communicate with his muscles. Because these pathways don't regenerate, Bennett has to work with Cox to teach his brain to follow different pathways.

To do this, Cox positions his wheelchair between two horizontal bars in Bennett's office. He uses his upper-body strength to pull himself up to a standing position. From there he slowly puts weight on one leg at a time to send signals to his brain. Through trial and error of placing the weight in different spots he can train his brain to find different communication pathways to the muscles.

"Once the brain sees it a couple of times it will repeat it and repeat it until it's locked into motor memory," Bennett says.

It's not easy.

As Cox puts weight on his leg he groans loudly, almost like he's bench-pressing weights in a gym. Because of his injury, his nerves are more sensitive than normal. Cox says everything is magnified by about 10 times. The process is both painful and exhausting.

Still he's determined to push through and regain mobility.

Cox meets his goal of sending a powerful signal to his brain as tracked on the computer monitor. Yet he wheezes, "One more."

He puts his weight on his left leg again, groaning under the effort once more. He meets another goal and Bennett asks Cox if he has enough energy to go again.

Without hesitation Cox replies: "Yeah."

Then he decides to show off. With Bennett blocking Cox's weaker left leg so it doesn't give out on him, he walks a few steps, using the horizontal bars for some support.

He pulls his hands from the bars, putting his entire weight on his stronger right leg for a few seconds. He is standing without assistance.

"I can, with my right leg, support my weight," Cox says with an optimistic smile.

For about three months after his injury, Cox was one of about 20 patients in the hospital with similar injuries. He got to know the other patients quite well during that time. Now he says they have all given up except one other and him.

That is why he wants to spread the word about this treatment.

"I figure this accident had to happen for a reason," he says.

He didn't know services like this were available until his aunt sent him the newspaper article. Only about a dozen locations around the country offer the neurological rehabilitation services.

Cox has been working with Bennett for less than six months and has seen many successes during that short time. Bennett says he's walked up and down the length of the center's gym with the walker.

Ever the determined optimist, Cox pats his sleek, black wheelchair and says: "I look forward to donating this to someone else."

For more information on Mountain Land's Southwest Neurological Rehabilitation Center, call 628-5194

By Denise Richardson

Staff Writer

ONEONTA _ Kieran Jennings and his classmates at Valleyview Elementary School took a math test Thursday.

The pupils picked up pencils. The room grew quiet with concentration.

Kieran, 8, carefully wrote answers on a sheet from a workbook, as his peers at nearby desks recorded and checked figures and sums.

The quiz time was a short spell in a morning busy with reading, writing and listening activities in the second-grade classroom.

Kieran, who has cerebral palsy and uses crutches to walk, kept pace with the schedule. He readily moved around desks, chairs and tables, and from one academic assignment to another.

"He puts forth a lot of effort," Judi Visnosky, his teacher, said. Kieran is among 12 students in her class. At the beginning of the school year, Visnosky said, she moved a table to make room for Kieran's wheelchair, but otherwise there has been little need for other accommodations.

He is treated just "like everyone else," Visnosky said. Kieran is part of the group, she said.

He sits on the floor with classmates during reading time, participates in question-and-answer sessions and plays in gym class.

Coping with the challenges of cerebral palsy seem an accepted part of daily challenges for Kieran, who said his favorite class is gym.

His physician, Dr. Joseph Dutkowsky, said he hopes the sight of crutches and wheelchairs used by children with CP will "melt away," and that people will grow to know Kieran and others as individuals with goals, desires and other human attributes.

Keirstan and Tom Jennings, Kieran's mother and father, are among parents, physicians, physical therapists and children's advocates who signed up

for the Bassett-Columbia Symposium on Cerebral Palsy, held at The Otesaga Resort Hotel in Cooperstown on Friday. The program, organized by Dutkowsky, was designed to provide updates on available treatments and venues to discuss the effects cerebral palsy has on individuals and their families.

Cerebral palsy is a group of disorders that have an impact on a person's ability to move and maintain balance and posture. The condition is caused by an injury to parts of the brain, or as a result of a problem with development, the CDC said. Often the problem happens before or soon after birth.

Dutkowsky, a pediatric orthopedic surgeon at Bassett Healthcare, said the condition is an injury to transmitters, or the motor part, of the brain. CP must never be confused with mental retardation, he said, and most people with CP have normal intelligence.

According to the CDC, one in 278 births in the United States results in a child with CP.

More infants with low birth-weights are being saved through skills of medical staff, Dutkowsky said, and the result is a growing number of individuals with CP in schools, work places and communities. Research also is advancing treatment for CP, which gives hope to families and patients, said Dutkowsky, an associate clinical professor of orthopedic surgery at Columbia University. His seminar topic at the symposium focused on how children with CP make a transition into adulthood.

Bassett Healthcare and NewYork Presbyterian, the hospitals of Columbia and Cornell universities, were symposium sponsors.

Early diagnosis, early intervention

Kieran was born prematurely and spent two months in the neo-natal intensive care unit at Albany Medical Center, his parents said, and he battled fungal meningitis.

Physicians were "very careful to not say" Kieran had cerebral palsy, Keirstan said, but a physical therapist confirmed the condition when Kieran was 6 months old. Tom said he remembers the milestone when a pediatric developmental neurologist said his son wasn't mentally disabled; Kieran was 10 months old, he said.

Keirstan said the fact that she and Tom were teachers in the Oneonta School District helped them feel confident about the support and instruction their son would receive.

She teaches art, and Tom is in his second year as a principal at Schenevus Central School, after having taught social studies at Oneonta High School. Before Kieran started school, each parent took two years off work to be home with Kieran and give him the hours of daily physical therapy he needed.

The Jennings said they remembered when Kieran asked about how long he would have cerebral palsy.

Kieran one day asked, "When I'm in second grade, will I have CP?" Yes, his father replied. Third grade? Fourth? Yes. Yes.

Keirstan said she was holding back tears. Tom told Kieran, "You'll have it all your life."

After a thoughtful moment, Kieran asked if they could go to Ruffino's Pizzeria for dinner.

Kieran attended pre-kindergarten at Greater Plains Elementary School and kindergarten and first grade at Valleyview. His parents said his teachers and the school staff worked hard to make Kieran's academic and social experiences successful.

More second-grade lessons

Teaching assistant Marilyn Bailey is an integral part of Kieran's community. She said she meets Kieran as he gets off a school bus in the morning, is nearby most of the day to help with academic and physical tasks and sees him to the bus after school. When he needs help, she is there. She is a partner in relay races, she said, and they sing in the elevator when no one else can hear them.

"He's just a delightful child," Bailey said. "He has a sense of humor. ... He's very agreeable,"

In the classroom, Kieran has a chair with wheels on the back legs. When at his desk, he uses a seat belt to prevent falls. He will walk, using crutches, to move about the classroom, and a wheelchair always is nearby for use in case of an emergency.

Kieran has trouble with zippers, she said, and he is rather easily distracted. Sometimes wanting to help him is a natural inclination, she said, but the greater goal is teach him to do things for himself and develop skills to further the independence he already is showing,

"He's very independent, but he's still learning," Bailey said. "I'm just there `in case.' ... I'm still learning to work with him."

Hard work leads to success

Tom Jennings said, with a smile, he wants Kieran to become an "alpha male." Jennings said he hopes his son becomes ambitious, self-sufficient and is happy. His son must continue physical activities throughout life, he said, and he is wondering about weight-training and future sports participation. His mother said she hopes Kieran will go to college and "finds a job he loves."

Kieran already has gained self-confidence that grows from facing and succeeding at challenges every day, Tom Jennings said.

"Hard work trumps talent _ every time," he said. "He's learned that if he doesn't quit, he'll succeed."

That earned success is an important lesson that some adults haven't learned, the Jennings said. They also attribute Kieran's success to the work of physical therapists who refused to let him quit.

Liam Jennings, 9, a fourth-grader at Valleyview, said his favorite activity with Kieran is to "run around and wrestle."

"Kieran is the best brother," Liam said.

Tom Jennings said Kieran is a hard-worker, empathetic, kind and inclined to play well with other children.

Skyler Payne is a classmate who enjoys spending time with Kieran, the teachers said.

Skyler, 6, said he and Kieran like to play with Matchbox cars and color.

"We also love Monster Jam and Transformers," Skyler said. They play catch, and Skyler said when they play tag, "I walk slow." Kieran is a "100 percent" friend, compared to others who are "99 percent," he said.

"He really is a good friend to me," Skyler said. "And I am really a good friend to him."

Amputees are using Nintendo Wii Fit equipment during training sessions as a way of improving their balance and stability.

Every Thursday patients from across the borough meet at Callaghan House in Heywood to go through a tailored exercise programme that improves their strength and stability after having an amputation.

Sharon Wright, Lead Physiotherapist for Amputee Rehabilitation, believes that using the Wii Fit has massive benefits for her patients. She said: “We work with patients for from four months to two years so it’s important that we find new ways of keeping them interested in their exercise and motivated to complete their training.

“After what has been a traumatic experience, the weekly sessions allow our patients to gain back some independence and meet others who know how they feel. Health professionals from the Manchester Disabled Services Centre (MDSC) also attend the sessions so patients don’t have to travel far for appointments, which can be difficult.”

Alan Carouthers, 71, from Rochdale, has been attending the sessions for five months. He said: “I first came with the hope of being able to walk again and started off doing lots of different exercises and physiotherapy. The Wii Fit is great. It is a challenge but using the slalom and football skills games has helped with my balance tremendously and of course it’s great fun.

“It’s really important to come to these sessions because you meet people who understand how you feel but can have a laugh at the same time. It has really built up my confidence and boosted my morale and I’ve been able to make some great friends.”

Heywood, Middleton and Rochdale Community Healthcare in conjunction with Rochdale Amputee Support Group purchased the Wii Fit equipment using a donation from charity Joining Hands for patients to use as part of their weekly exercise rehabilitation programme.

Help and support for amputees and their families can be found through the Greater Manchester Amputee Support Group, which was founded in 2004 by Malcolm Jones, from Rochdale. Malcolm founded the group after becoming an amputee himself and finding he needed more support. He said: “Having an amputation is a traumatic experience so it’s important that people have a support network once they leave hospital to help them and their families adjust.”

The group meets at Rochdale Infirmary on the second Tuesday of every month from 6:30pm in the Rochdale Infirmary outpatients waiting room.

Well after a bit of a unsettled night all seemed ok I was able to get washed and ready, the Mr Papastefanou came to see me as promised to see how I was doing and also to arrange for me to go and have an x-ray during the day. I said that I was feeling good and happy to get up with the Physio's when they came around. Luckily I didn't have to wait long after before they came. I explained to the Physio that I had my own way of getting out of bed, and that I would try it and if I struggled then I would use there way, and she was happy with that, so I rolled into action being careful not to pull my stomach too much because it was sore. I then said that I hadnt walked too far since October last year, but wanted to see how far we got. As soon as I stood up it was a odd feeling, although I knew that I was going to be ok walking some. Off we went into the ward and I manged slowly to get to the nurses station, and the Physio said well your safe for home as far as im concerned. I thought she was joking but it seemed not.

Anyway her assitant brought my chair and it was nice to sit down, albeit a little painful, but as soon as I got settled I was free and back in my wheels, so I could move around the ward and go off the ward with permission if I wanted too, but I didnt stray too far, because I knew it was coffee time soon and I was waiting for x-ray. Coffee came and I enjoyed it because the lady gave me some biscuits and on talking to her, we realised that she was the tea lady on ward 44 at Middlesbrougfh General when I got my back done 6 years ago, and she remembered me.

After lunch I saw the porter and I knew I was going for my x-ray, he asked me if I would prefer to get on the trolley here or down in the department. I said here, so the nurse who had been looking after me came and helped me onto the trolley and we left my chair outside the room for when I came back. I remember as I was getting on to the trolley my head went back and the nurse said you do everything with that head, because she knew that I kind of move myself with my head sometimes, but she also knew that if I didnt control it back and it fell back it can cause extensor spasms so she quickly supported me and helped me move better onto the trolley. The reason she knew about the spasms was because she also looked after me during first back surgery. We were off it sort of felt good as not left the ward since Tuesday and although it had only been 2 days I had forgot what my surroundings were like.


The x-ray didn't take long although I was quite tired by this point and I couldn't wait to get back to the ward so that I could go to bed. When we got back to the ward the nurse on duty could see that I was tired and uncomfortable, and gave me the choice of my wheelchair or going to bed, "bed please I have had enough for today", so they got a pat-slide and moved me into my bed and it was heaven, just to lay down, and wait for family to visit

Active Isolated Stretching has had impact across nation
Stretching has long been considered an important part of maintaining a limber and healthy body. However, most men and women, whether they are pro athletes or an average exerciser, neglect stretching. In addition, how one should stretch is a constantly changing issue.

Working thousands of hours to develop a foolproof stretching method, Aaron Mattes, a registered kinesiotherapist and a licensed massage therapist, created Active Isolated Stretching, or AIS.

"I heard about Aaron through a friend of mine who had tennis elbow," said Sun Valley resident Kiril Sokoloff. "I was told Koby Bryant goes to Aaron after every game for four hours."

Sokoloff said Mattes is an extraordinary physical therapist and has a passion for healing. Mattes' method is used by professional and top athletes, and has been adopted by physical therapists and trainers at Zenergy at Thunder Spring.

"It is active isolated stretching, which is very focused on breathing," said AIS-certified therapist Winston Purkiss. "It is a short stretch hold of no more than two seconds. This is the most effective stretching method ever introduced to me."

Purkiss said Mattes is based in Florida and his AIS method came to Sun Valley because of Sokoloff.

"The method has received a research grant by the National Institutes of Health," said Purkiss. "My wife had a stroke and was unable to use her right arm. Sokoloff flew her to Florida to meet Aaron and she was able to drink from a glass. It is not a miracle cure, but it is a method that continues to be effective."

The AIS method is about movement. Mattes created stretches for people to do alone and with a therapist. The AIS method is in a book for $35 available at Mattes' Web site, stretchingusa.com. In addition, Mattes has a variety of inexpensive materials and stretching apparatus available on the Web site.

"You feel more energy through this method of stretching because of the oxygen going through the body to the tissues,; Purkiss said.; AIS helps Parkinson's disease patients, people who are wheelchair bound, stroke patients, people with bunion problems, people with cerebral palsy and those who have had replacement surgery for hips and knees."

Sokoloff is working on bringing Mattes to Sun Valley next June to expose more people to AIS and to do a full training seminar presented by Zenergy.

Lots of people in the valley do a lot of running, biking and a great deal of exercise and need to stretch properly," Sokoloff said. "My wife is pregnant, and she has been doing AIS and has not had any pain. We plan to have work done on our baby too. I believe in AIS. Young children can advance mentally and physically with stretching."

Valley resident Pat Schott, 45, is a full-time painter and avid cyclist. He said he was suffering from back pain and hamstring issues and was almost crippled when he ran into AIS therapist Diane Calvero. Calvero gave Schott AIS sessions at Zenergy, which sold him on the benefits of stretching.

Schott enjoys cyclocross racing and mountain biking; during cyclocross season he is racing every weekend. He said he is up and down ladders all day and the combination of his job and cycling does not do well for the body.

"It's the same breathing as yoga but different," Schott said. "AIS is quick and the results are immediate. I highly recommend AIS."


Appointments for AIS sessions can by made at Zenergy. They cost $85 for members and $100 for non-members. To make an appointment, call Personal Services Manager Mollie Holt at 725-0595, ext. 124.

Footsteps therapy uses trampolines to help get confidence back
Tuesday August 25,2009
Minty Hoyer Millar, 17, who has cerebral palsy, has become mobile with the aid of a strange device called the spider. Her mother Pip, 49, tells her story


Minty was my fourth child so I was aware she was not progressing as she should. I saw she was struggling to achieve the usual baby and toddler milestones. At 12 months she was assessed and we were told she was physically and mentally handicapped and would never achieve beyond the capabilities of a four–year-old. I was devastated.

Doctors weren’t sure what was wrong. Cerebral palsy, a neurological disorder affecting balance and movement was confirmed when Minty was 22 months old. I learned it leaves sufferers with little or no mobility. We were told we’d have to wait more than a year to see an NHS physiotherapist. I researched the condition to see what other help was available but it became clear we would have to do all the work to make sure she had the best life possible.


‘It gives kids a confidence boost'



As Minty got older she was very floppy. By the time she was nine she could only crawl. She couldn’t stand, had no balance and very little speech.

I felt sad when I looked at her. I wanted her to be part of everything but she couldn’t. It was frustrating and upsetting because I knew from day one that she could achieve much more. With three other children, William now 22, Thomas, 20, and Henry, 19, we just had get on with it.

I spent my spare time finding out more about treatments around the world. I heard about a therapy called Footsteps in the city of Koszalin, north-west Poland. It uses exercises that focus on improving movements such as rolling over, supporting, reaching, grasping and holding.

It also teaches patients to shift their body weight and move from one place to another, enabling greater mobility and independence and encouraging increased self-confidence. All sorts of apparatus including balls, rolls, trampolines and ladders are used. We begain travelling to Poland every other month and after a year Minty was more mobile and happier.

There we discovered a device called the spider. It is a frame with bungee ropes attached which holds the child in place while physiotherapists work on improving their muscle strength and posture. It looks like a giant spider’s web.

By supporting Minty in an upright position it allowed her to move independently. Therapists could put her body through various exercises in different positions so it could be aligned properly. This helped develop her balance. It was great fun and she enjoyed it a lot.

With it she learned to stand independently and walk a little bit. Stimulating so many different muscle groups even helped her speech.

I couldn’t help thinking it was a huge shame that so many others in the UK were missing out on the opportunity Minty had. Then in 2004, when Minty was 12, my husband Christian suggested we set up our own Footsteps centre in an outbuilding at our home in South Warborough, Oxfordshire, so that others could use the spider. I was excited about the idea. Eventually we persuaded two amazing physiotherapists Filip and Gosia to come over from Poland to work with us.

When children use the spider it can be the first time they have stood upright. It gives them a huge confidence boost and the therapists can try lots of exercises with them.

They have a new sense of freedom. The spider helps with stability and balance and the children love playing games like catching balls while using it.

Last year we set up the Footsteps Foundation charity to help families who can’t afford the treatment, which costs about £1,800 for a three-week course.


W e’ve raised more than £110,000 to date and have been thrilled to send out grants to families who would otherwise have not been able to come to us. Minty is now walking independently and is very social. Her speech is fantastic. She’s a delight and very much a teenager. She still spends four afternoons a week on the spider. It might have been hard in the beginning but once she realised how much progress she was making her motivation and determination kept her going and she’s achieved so much.


l For more information call the Footsteps centre on 01865 858 382/065 or visit footsteps.ltd.uk

l For the Footsteps Foundation charity www.footstepsfoundation.com


Interview by PENNY STRETTONDR ALISON STEWART is an Edinburgh-based GP with an interest in cerebral palsy. She says: Cerebral palsy is the name given to a group of conditions that cause movement problems. The most common type leads to stiff or rigid muscles in the limbs and can range from mild to severe. It results from damage to the brain usually before birth or from an incorrectly developed brain.

It affects about one in 400 people. Physiotherapy is the prime technique for treating cerebral palsy. It prevents muscle weakness and enhances walking and standing. Anything that improves movement and motor skills and helps to enhance a person’s life is beneficial.

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.

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.''

Known as hippotherapy – stemming from the Greek word “hippos” for horse – the treatment uses the multidimensional movements of a horse to treat patients who suffer from muscle or movement dysfunction. It’s said to improve balance, posture, mobility and function.
With his arms outstretched, 6-year-old Tyson Thompson concentrated Sunday on keeping his posture straight and his leg muscles strong as he balanced on the horse moving beneath him.

The boy looked miniature perched on the back of the 1,400-pound horse named April. Maintaining steadiness proved even more difficult without a saddle, especially for Thompson, who has cerebral palsy.

“It makes him very aware of his body positions,” said Ellie Giffin, Thompson’s mother. Riding 18-year-old April – a breed of draft horse known as Shire and related to Clydesdales – is also the only physical therapy Thompson does in which his symptoms don’t regress, Giffin said.

Known as hippotherapy – stemming from the Greek word “hippos” for horse – the treatment uses the multidimensional movements of a horse to treat patients who suffer from muscle or movement dysfunction. It’s said to improve balance, posture, mobility and function.

“They can’t re-create this in a clinic,” Giffin said.

Giffin and her family also are fortunate to be related to Mike and Teri Sardinia. The Sardinias own the Clayton, Wash., farm and the horse used in Thompson’s therapy. The boy has been working with the horses since he was 3 years old.

Mike Sardinia is a biology professor at Whitworth University. Two years ago, two of his former students did their research project for his animal physiology course on the effects of hippotherapy; Thompson served as their test subject. This year, undergraduate biology majors David Ellis and Aly Shaffer, both 22, took the research a step further to determine how long Thompson’s muscles benefited from each session.

The students measured the electromyograms in the boy’s muscles before, and then each day after each therapy session for a week. The electromyogram is a graphic representation of the electrical activity that occurs when muscles contract.

For most people, those muscles are in sync when they are contracting in the limbs. But for people with cerebral palsy, the electromyograms are out of sync for the same muscles, causing patients to be off-balance.

“The idea of being on a horse is that it moves in a very synchronized way; he has to use his muscles in sync with the horse,” Ellis said.

Ellis and Shaffer recently presented their research at the Spokane Intercollegiate Research Conference. Their research determined that Thompson had better muscle coordination and balance for at least two days following his sessions with horses.

Mike Sardinia said he hopes the research will be helpful in establishing more local hippotherapy options. When Giffin went looking for help, there were only two similar programs in the Spokane area, and each had a long waiting list.

In addition, Sardinia said there is much anecdotal evidence to support the benefits of hippotherapy, but very little solid research to prove it works.

“We want to spread this around to anybody that is doing this kind of work,” he said.

Already, the need is growing.

On Saturday, a newly formed group in Spokane called Free Rein held an event to raise money for similar therapy.

Founded last summer, Free Rein allows 22 children and adults with physical, mental and emotional disabilities to ride and connect with horses. The nonprofit wants the program to grow and eventually serve 100 riders a year.

But the therapy is costly, and often patients are living on limited incomes and have higher living expenses because of a disability.

The Sardinias said they have only worked with Thompson so far, but in the future would consider taking on more riders.

Giffin said that without the therapy, her son’s progress would have been slower. He no longer wears leg braces.

“The biggest thing is that he has developed strength in his torso,” Giffin said. “He couldn’t sit before without help.”

By Beth Johnson
Radiation treatments for bone cancer at the age of 11 precipitated a condition that resulted in the amputation of Kevin Clancy’s right leg at age 48. Clancy remembers waking up on November 16, 2008 and noticing that his right foot was unusually cold. “Some of the toes had turned blue,” he recalls. “Ever since I had cancer, I’ve had poor circulation in that leg, but nothing like this.”
He was taken to an acute-care hospital the same day, where doctors discovered that only one artery was working. The decision was quickly made to remove the leg above the knee. The surgery was done November 23, and within 10 days, Clancy was transferred to Providence Hospital’s Amputee Rehabilitation program to begin rehab. Providence Hospital is one of the three integrated care divisions within Providence Healthcare in Toronto’s east end that also offers long-term care and community outreach services.

During his two months at Providence, Clancy was fitted with a prosthetic leg, and made a couple of trips home to determine what changes would need to be made to ensure a smooth transition home. Another step taken to ensure a smooth transition home was introducing Clancy to Providence’s newest service, the Mobility Clinic, where he met with his new physical and occupational therapists.

The new Mobility Clinic is designed for outpatients of Providence Hospital with muscular-skeletal impairments. It ‘fills the gap’ that opens once a patient returns home by continuing to support their therapy needs within a safe, professional, and compassionate environment.

There are two ultimate goals for the Clinic. The first is to provide individualized health-care services to improve functional abilities and promote independence. The second, more important goal, is re-integrating clients into their community and giving clients back their confidence and freedom to take charge and manage their own health care and new lifestyles.

“Kevin was confident while at Providence or at home, but there was a lot of fear each time he faced a new, public environment,” explains Clancy’s wife Christie. “For example, we had to go shopping for a light bulb, but Kevin was hesitant. He knew they were stocked at the back of the hardware store. But he did it – he summoned the confidence he needed to walk to the back of the store, find what he was looking for, get back to the car and return home.” A weekend trip to the hardware store is something we take for granted, but a milestone for someone learning to walk again after the sudden loss of a leg.

The Clinic helps people overcome fears by instilling a sense of independence through using innovative rehabilitation equipment and best practices. Physiotherapist Dellene Sakaguchi says, “Strengthening exercises help patients learn how to trust their balance again. We use tools such as a ‘core pole’ for total body conditioning.” The Clinics’s state-of-the-art gymnasium includes a variety of rehabilitation equipment, a mock kitchen and laundry room for training purposes, and a Sony Wii game system to strengthen muscles and enhance dynamic balance skills in a fun way.

“We take the time to learn about what each person’s day-to-day life involves then reintroduce them to these activities, and adapt them however necessary,” explains occupational therapist Lynne Mycyk. Staff introduced and adapted exercises and activities that would help Clancy get back to the things he loves doing, such as golfing, cooking and participating in the drum corps.

Staff members also help clients understand their injuries, their rehabilitation goals, and their achievements. Education fosters understanding; when clients see the ‘big picture’, they develop a belief in what they are doing, thereby increasing their chance of success. Beyond the physical rehabilitation provided, a sense of camaraderie and hope permeates the clinic. Clients of the service encourage each other’s progress and celebrate achievements.

With 347 beds, Providence Hospital is one of the largest rehabilitation hospitals in Ontario, and the Amputee Rehabilitation unit alone discharges up to 80 patients annually. The new Mobility Clinic is Providence’s solution to ensuring a smooth continuum of care on the patient’s journey to recovery.

Beth Johnson is the Director of Communications at Providence Healthcare.

By Beth Johnson
Radiation treatments for bone cancer at the age of 11 precipitated a condition that resulted in the amputation of Kevin Clancy’s right leg at age 48. Clancy remembers waking up on November 16, 2008 and noticing that his right foot was unusually cold. “Some of the toes had turned blue,” he recalls. “Ever since I had cancer, I’ve had poor circulation in that leg, but nothing like this.”
He was taken to an acute-care hospital the same day, where doctors discovered that only one artery was working. The decision was quickly made to remove the leg above the knee. The surgery was done November 23, and within 10 days, Clancy was transferred to Providence Hospital’s Amputee Rehabilitation program to begin rehab. Providence Hospital is one of the three integrated care divisions within Providence Healthcare in Toronto’s east end that also offers long-term care and community outreach services.
During his two months at Providence, Clancy was fitted with a prosthetic leg, and made a couple of trips home to determine what changes would need to be made to ensure a smooth transition home. Another step taken to ensure a smooth transition home was introducing Clancy to Providence’s newest service, the Mobility Clinic, where he met with his new physical and occupational therapists.
The new Mobility Clinic is designed for outpatients of Providence Hospital with muscular-skeletal impairments. It ‘fills the gap’ that opens once a patient returns home by continuing to support their therapy needs within a safe, professional, and compassionate environment.
There are two ultimate goals for the Clinic. The first is to provide individualized health-care services to improve functional abilities and promote independence. The second, more important goal, is re-integrating clients into their community and giving clients back their confidence and freedom to take charge and manage their own health care and new lifestyles.
“Kevin was confident while at Providence or at home, but there was a lot of fear each time he faced a new, public environment,” explains Clancy’s wife Christie. “For example, we had to go shopping for a light bulb, but Kevin was hesitant. He knew they were stocked at the back of the hardware store. But he did it – he summoned the confidence he needed to walk to the back of the store, find what he was looking for, get back to the car and return home.” A weekend trip to the hardware store is something we take for granted, but a milestone for someone learning to walk again after the sudden loss of a leg.
The Clinic helps people overcome fears by instilling a sense of independence through using innovative rehabilitation equipment and best practices. Physiotherapist Dellene Sakaguchi says, “Strengthening exercises help patients learn how to trust their balance again. We use tools such as a ‘core pole’ for total body conditioning.” The Clinics’s state-of-the-art gymnasium includes a variety of rehabilitation equipment, a mock kitchen and laundry room for training purposes, and a Sony Wii game system to strengthen muscles and enhance dynamic balance skills in a fun way.
“We take the time to learn about what each person’s day-to-day life involves then reintroduce them to these activities, and adapt them however necessary,” explains occupational therapist Lynne Mycyk. Staff introduced and adapted exercises and activities that would help Clancy get back to the things he loves doing, such as golfing, cooking and participating in the drum corps.
Staff members also help clients understand their injuries, their rehabilitation goals, and their achievements. Education fosters understanding; when clients see the ‘big picture’, they develop a belief in what they are doing, thereby increasing their chance of success. Beyond the physical rehabilitation provided, a sense of camaraderie and hope permeates the clinic. Clients of the service encourage each other’s progress and celebrate achievements.
With 347 beds, Providence Hospital is one of the largest rehabilitation hospitals in Ontario, and the Amputee Rehabilitation unit alone discharges up to 80 patients annually. The new Mobility Clinic is Providence’s solution to ensuring a smooth continuum of care on the patient’s journey to recovery.Beth Johnson is the Director of Communications at Providence Healthcare.

Beyond Boundaries Live 2009, the UK’s leading lifestyle event for people with disabilities, is set to be the biggest and best yet at its new home at Farnborough FIVE. Inspired by the highly acclaimed Beyond Boundaries TV series, the event takes place on Saturday 4th & Sunday 5th July.

Offering an inspirational, interactive and fun day out for people with disabilities, their families, carers and those working in the disability market, the 2009 event has been re-designed and expanded to provide an even better visitor experience.

The new look show will play host to a number of interactive features, theatres and activities, alongside an exhibition where visitors can see, try and buy the latest products and services from a wide range of leading specialist suppliers.

NEW FOR THIS YEAR!

· Beep Baseball debuts at Beyond Boundaries Live
· Diving Pool
· Pimp my Wheelchair
· Physio Zone: Come down to get your free FES assessment!
The UK’s leading provider of specialised Neurological Physiotherapy, PhysioFunction will be demonstrating functional electrical stimulation (FES) at Beyond Boundaries Live 2009.
· Ski Slope
· British Military Fitness Assault Course
· Paralympic and Sporting Village

Representatives from sports clubs all over the country will be on hand to demonstrate and display their sports – this is not only the chance to meet your heroes but also quiz real experts on their chosen sport whilst researching your local club.
A range of sports includes;

- Archery - Table Tennis
- Bocchia - Wheelchair Rugby
- Football - Wheelchair Fencing
- Equestrianism - Wheelchair Basketball
- Goal Ball - Sitting Volleyball
- Rowing - Shooting
- Sailing - Swimming

· Enabled Cooking Centre
· Beyond Fashion Stage
· Lifestyle Theatre
· Test Track

DON’T MISS OUT – BOOK YOUR TICKETS TODAY

PhysioFunction has arranged a special booking code which entitles you to a discounted ticket price. Adult tickets will cost just £5* and child tickets (under 16s) will cost just £3* (adults normally priced £8 in advance and £10 on the door, children £5 in advance and £8 on the door).

Simply quote PF1 when booking online to receive your discount.

· Please note, a 20p per ticket booking fee applies.

We look forward to seeing you there!!




Physiofunction Ltd, 50 High Street, Long Buckby, Northants. NN6 7RDRegistered Office as aboveRegistered in England and Wales No. 4878929Tel: 0800-043-0327Fax: 0871-661-3008Mob: 07798-780364http://www.physiofunction.co.uk/

A line of toys designed by Brown and RISD students in a 2006 course targets children with neuromuscular diseases and impaired motor skills.
Ask a child if he would rather do physical therapy or play with a remote control car and the answer will be obvious. But now researchers at Brown and the Rhode Island School of Design have designed a way for him to do both, by creating toys specially developed for children with neuromuscular diseases.

The toys, originally designed by students in a joint Brown-RISD course, are meant to complement the benefits of physical therapy for children with Cerebral Palsy, said Professor of Orthopaedics Joseph Crisco of the Warren Alpert Medical School.

By using the toys, the children effectively “have therapy for a much longer period of time,” Crisco said, adding that the key of the project is to disguise therapy as play.

The development of the toys resulted from a collaboration between Crisco, Clinical Assistant Professor of Clinical Neurosciences Karen Kerman ’78, RISD Associate Professor of Industrial Design Khipra Nichols and students in Crisco’s course, “Toys for Rehabilitation.”

Crisco said he and his colleagues came up with the initial concept for the product in the fall of 2006. His students designed the actual toys throughout the fall semester. The students worked on several different concepts, including specially designed walking shoes to help children with climbing disabilities and remote-controlled toys for children with hemiplegia, he said.

According to Crisco, many children with neuromuscular diseases are unable to use the same toys as their friends and siblings because these toys frequently require the use of fine motor skills, such as pulling a trigger or pressing a button. To overcome this problem, Crisco’s students pulled out the wires of common toys and redesigned them to be controlled through movements of the wrist or arm.

The result is similar in concept to the Nintendo Wii remote, Crisco said, except that the new toys respond only to movements made by the forearm — which is enclosed in a brace — rather than to full-body and arm movement.

As the goal of the project was to use the toys for “targeted joint therapy,” Crisco said, the designers did not want the toys to respond if the child were “standing on (his) head.”

The researchers’ goal is to send the toys home with the children to augment their other therapy, Crisco said, adding that the toys have data logging capabilities which can tell doctors how much the children have been using them.

In 2008, the group received a grant to develop prototypes of the toy controllers and began conducting a small pilot study. Now the researchers are applying for funding from the National Institutes of Health to upgrade the toys to commercial quality.

If the researchers get funding, Crisco said he would like to involve students in further developing the toys and researching their effectiveness.

by Holly McCarthy on May 14, 2009
This is a guest post on the EasyStand Blog, contributed by Holly McCarthy, who writes on the subject of the sports management degree programs at an accredited university. She invites your feedback at hollymccarthy12 at gmail dot com.

Kids and Adults with disabilities can benefit from recieve rehabilitative benefits from playing Wii, besides having fun!

The Nintendo Wii has been one of the most popular game systems this decade and has even been used in rehabilitative applications for people coping with a variety of ailments. A little over a year ago doctors in Canada thought of using the system, which had been used as entertainment for young spinal cord injury recovering patients, and as therapy for patients after strokes.
What they began to realize is that this system, the Nintendo Wii, could be just what is needed to help with rehabilitation because of its ease of use and friendly interface. There are several benefits of using the Wii in rehabilitative treatments (commonly termed at Wii-hab), a few of which will be explored below.
Balance - Whether the patient is standing or sitting in a wheelchair, the controllers used to play the Wii console require balance and proper form for the best results. Using a standing frame while playing Wii can promote movement while standing, which research has shown to improve bone mineral density and strengthening.
Hand-Eye Coordination - Over time, hand-eye coordination improves through the use of video games. This is especially true of the Wii since the players’ movements are mimicked on the screen.
Entertainment - Therapy becomes more enjoyable when put in the context of a game. People who use a standing frame for Physical or Occupational Therapy can prolong their standing time by “multi-tasking” by playing Wii.
Competitive Spirit - The competitive spirit in patients who may not otherwise be able to compete is awakened. This can be great for increasing social skills as well as self-esteem.
Extension of Therapy to Home ­- While many things that are found in a therapists office are far too cost-prohibitive to be kept at home, the Wii is an affordable method of treatment that can be taken beyond the office and into the home for around $250. Additionally, friends and family can play along and join in the fun.
Helps With Memory, Problem Solving, and Decision Making Skills - All of these skills are honed through the use of video games according to studies, which may or may not be good news for parents. Playing sophisticated games helps with short-term, long-term, and muscle memory. Strategic games require problem solving and decision making skills, all of which help to enhance the experience.
The Nintendo Wii is finding enthusiasts of many abilities these days. Games and hardware have made participating in many activities from the comfort of your own home possible with a small price tag that can bring benefits to those in and out of rehabilitation care.
Have you used the Nintendo Wii for rehab or fun? What games have you enjoyed the most?

Wales is the only country in the UK where people with neuromuscular conditions cannot access the help of specialised advisors.
In England, Scotland and Northern Ireland - but not Wales - patients receive help in accessing medical and social services through family care advisors.
The Muscular Dystrophy Campaign claim this is not the only aspect of care in Wales which falls short.

Dr Mark Rogers, a consultant clinical geneticist at University Hospital of Wales (UHW), Cardiff, told BBC Wales' The Politics Show there is not even a recognised source of funding for neuromuscular services in Wales.

Nick Jones, of Wrexham, has Duchenne Muscular Dystrophy, one of a number of life-limiting diseases which weaken and/or waste muscles. He has been waiting more than a year for a wheelchair which fits his legs. With a family care advisor to help attain health and social services, things might be different.

Mr Jones said: "There are people out there who need help and it's helpful to have somebody on the end of the phone who you can get hold of as quickly as you can and they're always there to help you out when you need something sorting, you know?

It's there in other parts of the country, it's just in Wales it still seems to be in the dark ages, if you get what I mean

Nick Jones
"Because otherwise you're just isolated and there's not much you can do really and that makes living with the condition a bit more stressful."
Forty miles across the English border in Warrington, the situation is very different for another young man with the same condition.
Andrew Duffy and his mother, Anne, greatly appreciate the work their family care advisor has done for them.

For example, she acted as an advocate in persuading their local authority to help provide alterations to their home to accommodate Andrew's condition.
Mrs Duffy said: "When you've got what you assume is a healthy four-year old and you're told he won't be walking by the time he's between the ages of eight and 11, and then you realise that you're going to have to change your home and your whole lifestyle, it's reassuring that there's going to be somebody there along the way who can tell you what you need and also do things like liaise with social services."

It is argued that the non-availability of family care advisors is only one aspect of how care for people with neuromuscular conditions falls short in Wales.

Andrew Duffy appreciates the work his family care advisor has done

According to the Muscular Dystrophy Campaign, Wales provides only a fifth of clinical activity by specialist doctors, nurses and physiotherapists compared to England and Scotland.
Mr Jones said: "It's there in other parts of the country, it's just in Wales it still seems to be in the dark ages if you get what I mean.

"The level of care you get in Wales is just not up to scratch at all really. It's just not worth it."
The Muscular Dystrophy Campaign's director of policy, Robert Meadowcroft, said services for people with neuromuscular conditions in Wales had declined over the past 10 years.
He said: "In specialist posts, people have retired or moved on - they've not been replaced.
"The rather larger worry is they're going to decline further, we believe, in the next two years unless action is taken."

Funding
Perhaps the major difficulty facing specialists like UHW Consultant Clinical Geneticist Dr Mark Rogers is that Wales has no properly defined funding mechanism to provide for the 3,000 or so people here with neuromuscular conditions.

Local Health Boards can turn away funding bids arguing they're too "specialised".
But since such conditions, though rare, haven't actually been classed as "specialised" the all-Wales specialised commissioning body Health Commission Wales is not bound to fund them.
Dr Rogers said: "There's no specific funding earmarked that I'm aware of in Wales at all for neuromuscular services as a whole.
"It's felt that they sort of come within possibly neurology, possibly other (areas).
"There isn't somebody who I can go to and say "please will you consider this bid for some money?".
"It's not even a case of them rejecting the bid. It's a case of I can't even go anywhere."

'Review'
Health Minister Edwina Hart declined to be interviewed.
A Welsh Assembly Government spokesman said: "We are committed to ensuring people have prompt access to safe and sustainable high quality and well co-ordinated neuromuscular disease specialist services, including those for muscular dystrophy, as locally as possible.
"The implementation of the outcome of the independent review of Adult Neuroscience Services will improve the provision of services over time".

Publish Date: Sunday,26 April, 2009, at 12:27 PM Doha Time

Dr Shaarani: ‘Two to three years of age is the time to show an affected child to a surgeon

By Bonnie JamesSurgical interventions improve the quality of life of children with cerebral palsy, Hamad Medical Corporation’s consultant orthopaedic surgeon Dr Mohamed Shaarani said yesterday.“Surgery enables many wheelchair-bound children to be transferred to walkers and those who are crippled to get on to wheelchairs,” he explained to Gulf Times on the sidelines of the first cerebral palsy symposium in Qatar.

Children with cerebral palsy have spasticity (stiff or rigid muscles with exaggerated, deep tendon reflexes, for example, a knee-jerk reflex), which can interfere with walking, movement, or speech.“We elongate some muscles and cut some others to make them loose and allow movement and flexibility,” pointed out Dr Shaarani, also a consultant paediatric orthopaedic.

Between two to three years of age is the ideal time to show an affected child for the first time to a surgeon, he added.In a presentation about dental problems in cerebral palsy, Primary Healthcare Department’s senior consultant Dr Mutaz Ahmed observed that incidence of dental decay is higher in this group, mainly due to poor oral hygiene.“Dental caries, gum disease, malocclusion, enamel defects, increased incidence of dental trauma, drooling, and grinding of teeth are among the main problems,” he explained.The incidence of gum disease is three times more among those with cerebral palsy than in the general population. The affected group also have a higher rate of dental enamel defects.“The increased risk for dental trauma can be attributed to problems with balance and muscle weakness in legs,” Dr Ahmed pointed out.Giving sedation, including general anaesthesia, is a very important option when doing dental procedures on an individual with cerebral palsy, as it may otherwise be difficult to control the patient.Highlighting the significance of maintaining proper dental hygiene in those with cerebral palsy the senior consultant suggested that parents should be instructed by dentists in this regard.“Cerebral palsy patients should be seen by a dentist every six months,” Dr Ahmed recommended while observing that electric toothbrush can be very useful for them.

Radiology, seizure disorders, growth and nutrition, medical management of spasticity, roles of physiotherapy, occupational therapy, orthotic, speech therapy and dietician, and education were the other topics of presentations at the symposium.

Years of pain - but Neurofibromatosis sufferer Kirsty Ashton just wants to help our kids

Years of pain - but Neurofibromatosis sufferer Kirsty Ashton just wants to help our kids

By Mandy Appleyard

Kirsty Ashton has had years of surgery to battle an incurable disease. But instead of feeling sorry for herself, she raised £75,000 to make other children’s wishes come true.

Like any 18-year-old, Kirsty Ashton is full of dreams for the future. She’s hoping to go to university soon, then to become an actress, a model or a TV presenter.
But Kirsty has already seen more of life and confronted more of its challenges than most of us ever will.

Kirsty needs crutches to walk far. She has been in hospital countless times, undergoing surgery every year since she was 14.

A lot of the time she’s in severe pain and her body bears the scars from operation after operation to remove tumours from her neck, legs, knees, ankles and feet.
She takes a cocktail of drugs every day, has physiotherapy every week and has some learning difficulties.

But Kirsty shows not a trace of self-pity. In fact she finds time to raise thousands of pounds so that other children with serious illnesses, often terminal, can visit special places like Lapland and Center Parcs.

She says: “I just want to do something for other people. Helping others is what makes me happy.”

Kirsty, who lives with her family in Wythenshawe, Manchester, has every reason to be angry at life, but she isn’t.

She was 11 weeks old when she was diagnosed with neurofibromatosis (NF) – a genetic disorder which can cause multiple tumours to grow on nerve endings on or inside the body.

It affects the nervous system and can even lead to an earlier death.
Her mum Julie, 49, explains: “I have NF but less severely than Kirsty. I knew there was a 50-50 chance of passing it on so when my first child Christopher was born, it was a relief that he was clear.

“But as soon as Kirsty was born I noticed brown patches on her skin, which is a symptom, and a small tumour on her back.”

Despite the diagnosis, life went on as normal until Kirsty was eight, when a check-up revealed curvature in her spine and she was diagnosed with scoliosis. Tumours growing on her spine were pushing it to one side.

It was bad news. But Kirsty and her family didn’t give up.

“In fact my brother Chris knew I’d always wanted to go to Lapland,” Kirsty says. “He said I had been so brave that he wrote to When You Wish Upon A Star – a charity that makes dreams come true for children with life-threatening illnesses – and told them about me.

“I had a great day and I met a girl there that I really liked but she passed away not long after we got back. That’s when I realised that without the charity she would never have got to see Lapland in her short life.”

Julie adds: “The trip really moved Kirsty. She went with her dad John and saw children with cancer and terrible conditions.”

Kirsty decided to start helping local charities, selling bric-a-brac and giving the money to charity.

Meanwhile she still had to deal with her own disease.
When she was nine she started wearing a Boston Brace 23 hours a day to help support her back and ease the pain.

A hard “jacket” reaching from the top of the chest to the bottom of the hips, it was hot and uncomfortable. But Kirsty amazed doctors with how quickly she got used to it, and she wore it permanently for the next six years.

“Kirsty had to have major surgery at 14, where the surgeon put titanium rods into her spine to straighten it,” Julie says.

“Removing the tumours was too risky because of the danger of paralysis so the rods were seen as the next best thing. But even the surgery could have paralysed her.”
She spent two weeks flat on her back and three months in hospital – yet still she stuck to her mission to make life easier for other sick children.

In the past three years she has raised an incredible £73,740 for When You Wish Upon A Star. Kirsty explains: “I organised a charity ball which raised £24,801 and a Valentine’s ball which raised £23,000. I did a sponsored spell – because I’m dyslexic and thought it would be a challenge – in my lunch hour and raised £170.”
She’s also sold home-made Christmas cards, organised a rugby tournament and sold more than 800 pin badges.

A total of 94 children have been able to travel to Lapland in the last three years as a result of Kirsty’s fund-raising.

But Kirsty, who has written a book about her struggle with NF and is now looking for a publisher, has no intention of stopping there.

“I want to raise a further £75,000 in the next year to send 30 to 40 families to Center Parcs with children who are too poorly to fly.”

Maria Moseley, the charity’s events manager, says: “Kirsty is an amazing young lady. She is our own fairy godmother – and she’s a fantastic role model to other young people. She helps make magical memories for some courageous children.”
And Kirsty’s own battle goes on. She has endured serious surgery every year for the last four years.

Each time she’s had five tumours removed and has been left with three particularly severe scars on her back.

Her mum says: “Neurofibromatosis can be very cruel and we don’t know whether her life expectancy will be impaired.

“But Kirsty’s a very bright and happy child in spite of all the
challenges she faces.

“She never complains and is always thinking of other poorly children.
“She’s one in a million – I love her more than words can say.”

Kirsty’s wish... to be a model
We treated Kirsty to a day living her dream – to be a model.
Courtesy of the Mirror, the young campaigner was whisked to our photographic studios in London, where a top stylist was waiting to meet her.
She was given a luxury makeover before strutting her stuff in front of the camera – producing a portfolio of shots.

She says: “I loved every minute of the day, it was brilliant from start to finish.
“Having my make-up done, and trying on all of the clothes made me feel like a real model.

“The photos are great and I’m just so pleased I had a chance to do it.”
In recognition of her hard work and dedication, Kirsty was named
a “UK Huggable Hero” in 2008 by Build-A-Bear Workshop. Kirsty has
her own website at www.kirstysstory.co.uk and When You Wish
Upon a Star can be reached at www.whenyouwishuponastar.org.uk
or by calling 0161 477 7277.