Solar Powered Wheelchair Wins Award

Solar Powered Wheelchair Wins Award
By Energy Matters

A team from University of Virginia’s School of Engineering and Applied Science recently won first place in a 2012 World Cerebral Palsy Day competition for their solar powered wheelchair design.

We first reported on solar wheelchairs back in 2010, when Haidar Taleb had just begun a journey to take him across the United Arab Emirates.

Inspired by roofs on convertible cars, the lightweight solar panels on the U.Va. team’s wheelchair are retractable and don’t significantly add to its length, width, height or weight when stored. A system of hinges on both sides of the chair controls the deployment of the solar panels. The three panels have a conversion efficiency of 15% and a capacity of 160 watts.

Here is a link to a video demonstrating the chair in action!
http://youtu.be/GRr6O-1-Jqk


When fully deployed, the custom solar panels cover an area of over one square meter. The wheelchair can operate for more than 4.5 hours at a speed of 8 kilometres per hour on a fully charged lead acid deep cycle battery, a range increase of more than 40 percent over batteries alone. At a speed of 1.6 km/h and suitable light exposure, the wheelchair and can run “indefinitely”; without needing to utilise battery power.

Built with lightweight materials, while the system may look fragile, it has been designed to operate under conditions more extreme than would be experienced in normal use. The panels and retractable mechanisms account for less than 15% of the completed wheelchair’s unoccupied weight.

Anyone with enough physical dexterity to use a joystick can operate the chair; including retracting and deploying the solar panels. In addition to standard features common to this type of wheelchair, USB power outlets are provided that can power a wide range of small devices.

In a wonderful display of generosity, the team will use their prize money to perform some final tweaks to the chair give it the individual in Turkey who submitted the initial suggestion for a solar-powered wheelchair.

The remaining prize money will be returned to United Cerebral Palsy in support of future World CP Day competitions.

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St. Louis Doctor with Cerebral Palsy Offers Hope

ST. LOUIS - Dr. Jan Brunstrom-Hernandez gently but sternly admonishes a teenage cerebral palsy patient who clearly hasn’t been doing his exercises, stressing the importance of keeping muscles loose and limber.

“We know it’s not fair, but that’s the way it is,” Brunstrom-Hernandez tells 15-year-old patient Sam Ward. “Do you hear me? I know what I’m talking about.”

Brunstrom-Hernandez, who founded the Cerebral Palsy Center at St. Louis Children’s Hospital 15 years ago, has cerebral palsy, giving her a special empathy for the people she treats.

Cerebral palsy is a broad diagnostic term referring to disorders that affect movement and posture. It is caused by injury or abnormal development of the brain, usually before birth. Many patients suffer from other afflictions, too, such as speech or hearing difficulties. Symptoms vary greatly.

Brunstrom-Hernandez, 50, was surrounded by doctors from a young age as she coped with the disorder. She figures that’s a big reason she knew as a small girl she wanted to be a doctor. Still, she initially balked at specializing in treating others with cerebral palsy.

“I didn’t want to be surrounded by more of me,” she said. “I didn’t feel good about myself because of my disability.”

A chat in 1997 with Dr. Mike Noetzel at St. Louis Children’s Hospital changed all that. At the time, Brunstrom-Hernandez was doing research on cerebral palsy and was surprised to learn treatment hadn’t progressed much beyond the treatment she received in the 1960s. He suggested she launch a cerebral palsy clinic.

“All I said was, ‘You’ve got some good ideas. I think people would listen to you. Let’s at least try to start something,’” he recalled.

The clinic opened in May 1998.

Many clinics in the U.S. treat cerebral palsy among many other neurological disorders, but the St. Louis center is unique in its singular focus, said Kaelan Richards of United Cerebral Palsy.

Brunstrom-Hernandez and her team of doctors and therapists see patients of all ages — babies to adults — from across the world. The center has treated about 2,000 people since opening 15 years ago.

Sam, at the clinic recently with his parents, is in many ways a typical teen. He wore a T-shirt, shorts and sported a sly grin as Brunstrom-Hernandez examined him — even through her motherly admonitions.

“She helps me walk better,” he said. “Just be better.”

Anna Marie Champion of Atlanta has been bringing her daughter, Morgan, on the 11-hour trip to the St. Louis clinic for 10 years, since Morgan was 3. Morgan uses a walker but is scholarly and motivated, a seventh-grader who already has earned a college scholarship.

“We went to St. Louis, and it was a whole different approach,” Champion said. “It has turned her life around completely.”

Brunstrom-Hernandez stresses the need for exercise and communication. From childhood, movement was difficult for her.

“If the wind was blowing hard enough, I’d fall down,” Brunstrom-Hernandez recalled.

Her mother made her keep moving, even requiring her to stand in the kitchen to do dishes when it was the last thing the little girl wanted to do.

“She insisted that I not be dependent,” Brunstrom-Hernandez said. “She insisted that I pull my weight. It’s a good thing. It made me tough, and it made me strong.”

Strong, yes, but Brunstrom-Hernandez acknowledged she sometimes felt embarrassed by cerebral palsy. She recalled how she would recoil if she caught a glimpse of mirrored glass showing her struggling to walk.

It wasn’t until she started the clinic that she embraced who she was and what she could do to help others.

“I have gotten as much or more out of taking care of these patients as they have ever gotten from me,” she said. “It changed my life. They saved my life. They taught me how to believe in myself. They taught me how to look at myself differently.”

Moving around the clinic, only Brunstrom-Hernandez’s gait shows any effects of her cerebral palsy, though rheumatoid arthritis causes her pain. She acknowledges it can be physically exhausting.

“I have to work all the time to stay on my feet,” she said.

It’s a dedication that doesn’t go unnoticed by her colleagues.

“I think the empathy does come through,” Noetzel said. “Her line is kind of a tough one: If you really want to do best, this is what you need to do. I think there’s a much greater acceptance coming from her.”

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Summer Heat Safety Tips

By Lee Vander Loop
CP Family Network Editor

Summer is nearly here! Kids are anxiously awaiting the end of the school year and families are beginning to plan summer outings, vacations and outdoor adventures. It’s a time of sports, outdoor play, family gatherings, and warmer weather.

With the additional sun exposure, we as parents have the responsibility of keeping our kids safe during the long, hot days of summer. We’ll highlight some of the risks the summer heat poses and what you can do to protect your children and family for an enjoyable, healthy and safe summer.

Protecting Kids from Sun Exposure

Many of us are all too familiar with the pain of sunburns. For parents of children with special needs, extra vigilance is needed. A non-verbal child cannot communicate to you when they are thirsty or feeling the effects of excessive sun exposure. Kids don’t have to be at the pool, beach, or on vacation to get too much sun. Their skin needs protection from the sun’s harmful ultraviolet (UV) rays whenever they’re outdoors. The American Academy of Dermatology estimates that kids get 80 percent of total sun damage by the age of 18. Sunburn also affects your body’s ability to cool itself and causes a loss of body fluids. Follow these tips to keep your family safe this summer.

Timing is Everything

• Seek shade. UV rays are strongest and most harmful during midday, so it’s best to avoid outdoor activities during this time. If this is not possible, seek shade under a tree, an umbrella, or a pop-up tent. Remember, it’s important to take precautions before a sunburn occurs, not once the damage is done.

• Cool and cloudy? Children still need protection. UV rays, not the temperature, do the damage. Clouds do not block UV rays, they filter them—and sometimes only slightly. Make sure to take proper precautions even when the sun isn’t shining.

Cover Up

• Protective clothing. Clothing that covers your child’s skin helps protect against UV rays. A T-shirt, long shorts, or a beach cover-up are good choices—but it’s wise to double up on protection by applying sunscreen or keeping your child in the shade when possible.

• Get a hat. Hats that shade the face, scalp, ears, and neck offer the best protection. Baseball caps, although popular among kids, don’t protect their ears and neck. If your child chooses a cap, be sure to protect exposed areas with sunscreen.
• Wear sunglasses. Sunglasses protect your child’s eyes from UV rays, which can lead to cataracts later in life. Look for sunglasses that wrap around and block as close to 100% of both UVA and UVB rays as possible.

Sunscreen

• Apply early and often. The CDC recommends the use of sunscreen with at least SPF 15 and UVA and UVB protection every time your child goes outside. For the best protection, apply sunscreen generously 30 minutes before going outdoors. Since no sunscreen is truly waterproof, reapply again after they’ve come from the pool or other water sports activities. Don’t forget to protect ears, noses, lips, and the tops of feet. Keep in mind, sunscreen is not meant to allow your kids to spend more time in the sun than normal, it’s meant to reduce damage from UV radiation.  It doesn’t eliminate the threat.

• Protecting infants. Although babies younger than 6 months should be kept out of direct and indirect sunlight because of their increased risk of heat stroke, The American Academy of Pediatrics now advises that sunscreen use on babies less than 6 months old is not harmful on small areas of a baby’s skin, such as the face and back of the hands. Your baby’s best defense against sunburn is avoiding the sun and staying in the shade.

Precautions for Special Needs Children

• Medication precautions. Children on a variety of prescription medications are especially vulnerable to heat related illness.  Check your child’s prescriptions for warnings in relation to sun exposure. The risk for heat-related illness and death may increase among children using certain medications such as drugs: (1) which affect psychic function or behavior; (2) medications for movement disorders or seizures, because some medications can inhibit perspiration; and (3) diuretic medications or “water pills” that affect fluid balance in the body.

• Wheelchair users. For children who are non-ambulatory and stroller or wheelchair dependent, extra caution is needed. Seek shade for your wheelchair dependent child and take all other necessary precautions listed here.  Wheelchairs make heat even more unbearable. The cushions heat up and the plastic covers may cause excessive sweating, which can lead to dehydration and skin breakdown. Also be mindful that the metal portions of a wheelchair or stroller can become extremely hot in a very short period of time when exposed to direct sun. Protect your child from contact burns by covering any accessible arm rests and metal frame portions of the chair that your child may come into contact with. Wheelchair umbrellas are one way to provide added protection.
• Be prepared. If you plan on an extended outing, be sure to pack a cooler of ice and cold drinks. If you have a child who is tube fed and will need to be fed during the course of your outing, packing formula in a cooler with ice is a safe way to prevent spoilage. You’ll also want to keep small bottles of water in a cool place for any needed tube flushes, before or after feeds.

Conclusion

Avoiding sunburn and heat related illness is relatively straightforward if you follow these basic precautions. Being prepared, paying attention to weather conditions, and monitoring your child’s reactions to the heat and sun can help ensure your special needs child can enjoy outdoor activities this summer.

Additional Information

CDC Protecting your Child in the Sun

American Academy of Pediatrics, Baby Sunburn Protection

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Family Vacations for Children with Cerebral Palsy

By John Lehman

Planning a vacation is an exciting but sometimes difficult task for any family, particularly families who have children with cerebral palsy. Special considerations must be taken into account well before the plane tickets are purchased. Fortunately, the task is not impossible. With a little bit of research, homework and proper planning, you can rest easy knowing your cerebral palsy child will have a fun and relaxing experience during your family’s vacation.
 

How to Prepare

There are many things you should keep in mind when deciding on a destination for your family vacation. Perhaps the most important step you can take when planning your vacation is to call your destination in advance and make sure they can accommodate your child. This includes potential hotels, restaurants or any attractions you are considering.

For example, will your hotel have adequate wheelchair accessibility? What about allergy risks? Are there hospitals nearby in the event of an emergency? All of these questions should be answered by calling your hotels or destinations ahead of time, well before you book your rooms. If the accommodations aren’t satisfactory, you’ll want to consider a different location.

Being in a new place may be disorienting for your child. You’ll want to be prepared in the event that your child panics or becomes upset. Some families combat this by trying to stay true to routines that their child is used to. If your child takes a nap in the afternoons, make sure you set aside time to allow him or her to do so. Of course, if your child is taking special medications, you’ll want to bring these along and have them take the medications at the appropriate time. Make sure you bring extra pills or dosages, just in case.
 

Where to Go

In today’s world, vacation destinations have proven to be much more accommodating towards special needs families than in decades past.

Some destinations are specifically designed with special needs families in mind. One such location is Morgan’s Wonderland, located in San Antonio, Texas. This amusement park’s mission is to provide an environment where all children can have fun together, regardless of their disability (or lack thereof). Activities include fishing, carousels, playing musical instruments, watching shows performed hourly and taking part in more traditional park activities, such as swing sets, sandboxes and slides. All of these activities are fully accessible for both children and adults with a variety of conditions.

Resort vacations aren’t out of the question, either. Some families with special needs have enjoyed visiting the National Ability Center in Park City, Utah. The center has many different active and outdoor activities for you and your family to enjoy year round, such as horseback riding, hiking, skiing, swimming and more. The center prides itself at offering these activities to children of all ages and ability levels, with the hopes of improving self-esteem, confidence and physical strength in the process.

Even famous resorts, such as Disney World, are renowned by special needs families for their excellent accommodations. Lodging at one of Disney’s many resorts are fully equipped for children or families with special needs, including text-to-speech devices, detachable showerheads and safety bars. Many of their biggest attractions have accommodations for special needs families as well.
 

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Obama Administration Looks To Improve Transition Outcomes

By Michelle Diament

In an effort to identify better strategies to help young people with disabilities transition from school to work, a handful of federal agencies are seeking public input.

Starting Monday, the U.S. Departments of Labor, Education and Health and Human Services as well as the Social Security Administration are kicking off a two-week so-called online dialogue.

The agencies are asking policymakers, educators, service providers, families and youth with disabilities themselves to share their thoughts through a Web interface on how to improve transition outcomes.

Federal officials say they hope to learn about regulatory and legislative barriers that young people with disabilities are facing in accessing employment, education, Social Security and health and human services. Ultimately, the input received on the website may help shape future policies and practices, they said.

“We must ensure that our federal programs and resources support our nation’s youths and young adults with disabilities in reaching their dreams of economic empowerment and independence, and we need to hear from many people,” said Kathy Martinez, assistant secretary of labor for disability employment policy. “Speaking up online can help us identify barriers as well as opportunities that may exist at the federal level and also help us develop solutions.”

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Student with Cerebral Palsy Named Prom Queen

By Misty Watson

In many ways, Desaray Carroll is a typical high school teenager.

She texts nonstop, hangs out with her friends, goes to the movies and out to eat.

The 19-year-old Coahulla Creek High School student is surrounded with a family and friends who love and support her, so much so they campaigned for the student body to elect her prom queen a few weeks ago.

Everyone except Carroll seemed sure she would win. But after a lifetime of being picked on for being different, she never thought she could be the same as those around her.

“At my old school, I got made fun of,” she said. “I didn’t want to go to school. It was really hard. At one point I quit school, but I came back.”

Carroll has cerebral palsy, a disorder that affects muscle tone, movement and posture. People with cerebral palsy can have exaggerated movements, rigidity of the limbs, involuntary movements, unsteadiness while walking or any combination of those symptoms.

She struggles with her speech — though after a few minutes with her, she becomes easier to understand — and movements on the right side of her body.

So going from the person being picked on to the point of quitting school to being given a title that comes with such an implication of popularity seemed like a stretch for her.

When her name was called out on prom night announcing she had been named prom queen, Carroll was naturally and genuinely shocked.

“I didn’t believe it,” she said. “I really like it here. They don’t look at me like I have cerebral palsy.”

Carroll’s friends and her teachers said they believe it is a great testimony to the student body at Coahulla Creek.

“Their heart is in the right place,” said Josh Swiney, Carroll’s math inclusion teacher. “They’ve been around her and wanted that for her. She’s awesome.”

Andy Toth, a sign language interpreter of the school and adviser to the sign language club, of which Carroll is a member, said he knew the student body was rallying for Carroll.

“I prayed all weekend she’d get it since I couldn’t vote,” Toth said. “She is a perfect pick for it. We’ve got a good student body. They’re not caught up in stereotypes. We realize what’s real.”
 

A Girl with Determination

As a very young girl, Carroll fit in with other children, including her foster family.

“She was accepted by them, and they love her,” said Jennie Byars, Carroll’s foster mother, who became her legal guardian in 1997. Byars had four children naturally, has adopted several and has even more that refer to her as “mom,” including Carroll.

“I didn’t want her when they first called me,” Byars said. “Then I thought, ‘Why am I doing this if I can’t help the ones that really need it?’ When they brought her to me (when Carroll was 16 months old), I saw a handicapped child. But then I saw a girl with a lot of determination. She bonded with us quickly. After a couple of weeks, I didn’t see her as handicapped.”

Byars and her late husband, Slim, encouraged Carroll’s independence from an early age.

“I tried to let her do what she could,” Byars said. “They wanted to give her a walker, and I said, ‘No. She doesn’t need one.’ They wanted to give her a board to talk for her, but I wouldn’t let them. We treated her like one of the kids. I tried not to limit her. You have a tendency to want to coddle her, but she didn’t want you helping her.”

Byars spent many hours taking Carroll to physical therapy and working with her to make sure she could walk and talk and live a normal life. Byars believed in her daughter, pushed her where she needed to be pushed, and comforted her when she needed to be comforted.

“Her therapist said she was stubborn, but I said she was determined,” she said. “If she hadn’t been determined, she wouldn’t be where she is now.”

As a child, Carroll could only walk on flat surfaces, not inclines. But she used a mulch pile to learn to walk on an incline.

“She was determined, struggled, but she climbed that mountain — in more ways than one,” said family friend Nancy Reynolds.

Carroll says many things in her life have been hard.

“But it could be worse,” she said. “It’s hard talking, but when people get to know me, they understand me better.”

She can’t even pull her hair back in a ponytail because she doesn’t have full use of her right hand.

She knows she’s made it as far as she has because of the support from her foster parents.

“They’ve been there for me,” Carroll said. “I’m lucky to have them.”
 

Coming Out of Her Shell

When Carroll hit middle school, she faced bullying.

Her friends sat at her side talking about how they were all bullied throughout middle school and into their early high school years. Zenaida Torres remembers other students being especially mean to Carroll. The two became friends passing each other in the counselor’s office where they went to talk through the problems they each faced.

Three years ago Slim Byars died. Jennie Byars was diagnosed with stomach cancer soon after. (She recently had a PET scan, which came back clean of cancer.)

Carroll hit a really hard time facing so many trials in just a few years.

“She was really a daddy’s girl,” Byars said. “These last two years (when she enrolled at Coahulla Creek), she has really come out of her shell. The kids are great. They’re more accepting here.”

Carroll said she changed her outlook on life and those who were mean to her after her dad died. That’s when she found a strong faith in God.

“I know God won’t put me in anything I can’t go through,” she said.

Now if a student picks on her or if she’s having an especially hard day, she simply “doesn’t let it bother” her. She has been inspired by Nick Vujicic, a motivational speaker and author who has no limbs. He is a reminder to Carroll that she is not the only one who faces struggles or who is different.
 

‘An Awesome Friend’

Her hope and positive outlook serves as an inspiration to not only the student body and faculty at Coahulla Creek, but to many who have met her.

“Today I had a bad day,” Torres said. “She sends me excerpts from Nick Vujicic’s book. It helps me a lot. Even though she had a bad day, she never got sad.”

Carroll is someone Savannah McCraw looks up to and thinks more people should become friends with.

“We had some classes together,” she said. “A lot of people are too shy to talk to her. I decided I wanted to get to know her. She’s really an awesome friend. She always knows how to make me feel better.”

Even if Carroll is having a terrible day, she is sweet and kind to everyone.

“I never hear her say anything mean about anyone,” McCraw said. “You can never tell if she’s having a bad day.”

Carroll may struggle with some everyday tasks, but she possesses many traits her friends don’t.

“She’s able to do stuff we’re not able to,” Torres said. “She stays strong. She has people here that love her and support her.”

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Boy with Cerebral Palsy Takes First Steps after 
Life-changing Operation

By Emma Innes

A two-year-old with cerebral palsy has taken his first steps after undergoing a life-changing operation.

Abe Astur has spastic diplegia which tightened his leg muscles, restricted his movement and, until recently, forced him to use a walking frame.

His family raised £50,000 to pay for him to have a selective dorsal rhizotomy operation, in the U.S. because the procedure is not widely available in the UK.

The operation involves severing the nerves in the spine that send messages to paralyse the leg muscles. With the tensed muscles free to resume normal movement, the patient is then able to walk.

Abe’s mother Leigh, 35, from Winchester, Hampshire, said: ‘We are thrilled it went well.

‘It’s now a case of building up Abe’s muscles he has never used before and we are pleased we went through with the operation in America.

‘His surgeon says Abe will walk independently within six months of the procedure.

‘This is the best prognosis we could have wished for and Abe has been amazing.

‘The surgery was tough and we spent a week in the hospital in St Louis, Missouri, as part of a month out there.

‘But because he is so young he didn’t fully understand what was going on and he accepted everything and handled it very well.’

Ms Astur added that the surgeons believed Abe will even be able to play sports in the future.

She said: ‘This procedure should be more accessible and medical people should be more knowledgeable in the UK.

‘It’s an operation which parents in England should be aware of but it’s just so difficult to get funding.

‘We have been talking to Steve Brine, Winchester MP, about taking this issue to Parliament and he has been a fantastic help.

‘It makes my blood boil to think children have grown up with difficulty when they could have had this operation.

‘Hopefully between us we can change another child’s life by alerting people to this procedure.’

The family, including Abe’s father Gavin, 38, and sister Thea, four, held a party to thank people who donated towards the cost of the operation.

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