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Category Archives: Cerebral Palsy
Posted: June 27, 2017 at 5:47 am
By AMELIA HARPER, Rocky Mount Telegram
SPRING HOPE, N.C. One local woman has turned the challenges of her life into a way to serve others.
Spring Hope native Jesse Sykes, 26, graduated last month from the University of North Carolina-Chapel Hill with a master’s degree in clinical rehabilitation and mental health. Her master’s thesis dealt with the impact of cerebral-palsy on care-givers during the transition from adolescent to adulthood.
At first glance, this looks like a fairly typical story of intelligent young woman succeeding in a challenging and beneficial field. But Sykes is far from typical. She has dealt with the challenges of cerebral palsy since birth and now hopes to parlay that lifetime of experience into way to help others deal with challenges in their own lives.
Sykes credits her success so far to family support and her own perseverance.
“If you tell me I can’t do something, I have to prove I can,” Sykes said. “This is the way I was brought up. My parents always told me that the only thing I can’t do is the thing I tell myself I can’t do. I was tempted to quit at times, but a lot of people in my family and at Chapel Hill believed in me, and that kept me going.”
Sykes, who graduated from Nash-Rocky Mount Early College High School in 2010, went on to earn her bachelor’s degree in psychology at UNC-Chapel Hill before heading to graduate school. However, tragedy struck her as she began her college career. Her mother, Donna Sykes, died accidentally while she was staying in her daughter’s dorm room, helping her prepare for the new chapter in her life.
However, Sykes sees all of these life events as ways to make her more empathetic to others. After studying psychology as an undergrad, Sykes wanted to focus on a master’s degree that would give her more skills to help others. Over the past few months, she has been working at the accessibility office at UNC-Chapel Hill. Her work there has taught her that many people face a variety of challenges in their lives.
“During my internship, I learned that a lot of students faced challenges. Some were not aware of the resources that are available. Others were afraid to ask for help for fear of being looked down upon,” Sykes said.
Sykes said she likes solving problems for people who are disabled or facing other challenges in their lives.
“I love hearing them say ‘Thank you.’ Most people are really grateful for the help,” Sykes said.
Even though Sykes’ challenges are obvious to most people who meet her, her sweet and open spirit is apparent as well. Sykes has a more positive attitude toward life than most people who have endured far fewer struggles in their lives. In fact, Sykes said she feels that people who face challenges that are not as obvious fare worse in life.
“I think that people with disabilities that are not obvious are treated worse,” Sykes said. “There seems to be sort of a stigma there,”
For now, Sykes is back home in Spring Hope while she looks for job that will allow her to put her considerable skills to work. However, even that is challenge, Sykes said.
“I finding it hard to slow down,” Sykes said.
Posted: at 5:47 am
Brandon Mendenhall, left, with his band, The Mendenhall Experiment
Courtesy of the band
If theres one thing 33-year-old Los Angeles musician Brandon Mendenhall doesnt want, its your sympathy. Mendenhall, originally from Illinois, was born with cerebral palsy, a neurological condition that affects the muscles, movement, speech, coordination and balance.
The cerebral palsy causes my muscles to not function properly. I have motor coordination difficulties it affects my speech, the movement in my left hand and the way I walk, Mendenhall says during a recent phone interview.
The biggest misconception a lot of people have about people with disabilities is that we arent capable and they need to feel sorry for us, he continues. I think a lot of people feel so bad they dont even want to talk to us or approach us.
Mendenhall is the guitarist and main songwriter for The Mendenhall Experiment, a band whose mission, he says, is to remove the social stigma that comes with having a disability. The Mendenhall Experiment began in 2008 and currently features Mendenhall, lead guitarist Michael Lira, Michael’s brother Bruce Lira on drums, vocalist Mario Valadez and bassist Nate Stockton.
This band is about trying to change that initial perception when you meet someone with a disability, so you dont automatically assume they are not capable of doing something or being a good person or a good friend or even able to function in life, Mendenhall explains.
Growing up with cerebral palsy was far from easy, and Mendenhall faced a plethora of hardships, including a family that didn’t always support his dream of being a musician. Growing up, everyone told me that I couldn’t do this or that, that my body was not cut out for this, he says. His grandparents raised him and his grandfather was adamantly against his dreams of being a musician, discouraging him from even trying.
Understandably, this left a young Mendenhall angry and hurt, but he used these emotions as motivators. I took all that negativity, pain and anger and turned it into inspiration, to fire my passions of music and guitar playing.
Mendenhall says that he was drawn to music from a young age, dealing with the emotional ups and downs of being a teenager, along with the physical limitations his body faced due to his condition. He gravitated early toward metal. Of course I was into the heavier bands, like the Big Four: Megedeth, Anthrax, Metallica and Slayer. But for me, the ‘Big Three’ were Korn, Pantera and Nine Inch Nails. It was just something about those three bands their use of guitar tuning, dissonance, chords and the emotion in their music [that] I could really relate to. I used their music as emotional therapy to overcome my disability and still love them to this day.
At age 19, Mendenhall got his first guitar and it changed his life. He began to slowly rehabilitate his paralyzed left hand and got formal guitar lessons but after 14 months, he decided to go down his own path as a musician. I did research and read about open tunings and drop tuning, and I realized that I can use those formats to maneuver around my disability as a guitar player and songwriter, he said. For me, songwriting and the arrangement is the most important part of music.
The Mendenhall Experiment recently released their self-titled debut EP to much critical acclaim, and have thus far shared stages with and opened for acts including P.O.D., Alien Ant Farm and Kill Devil Hill. They even played the Rocklahoma festival in May.
The six-song EP features guest appearances from Danny Lohner, formerly of Nine Inch Nails and A Perfect Circle, and Munky from Korn. Munky is a personal guitar hero of mine since I was a teenager,” Mendenhall says, “and seeing them perform all these times, I was fortunate enough to get to meet him and maintain a friendship with him over the years.”
There is a documentary aboutMendenhall’slife story in the works called Mind Over Matter, slated for release in 2018, and plans for a tour to support the band’s debut album. Nothing is 100 percent yet, so I cant really say, but there will be extensive touring this summer,” he says.
With a condition that puts such physical limits on the body, Mendenhall has a secret for maintaining his optimistic attitude and drive to succeed. I believe in the law of attraction in the universe, he says. Putting out positive brings you positive things in this life in return, and I feel like my story is a true testament to that.
Mendenhall hopes people will enjoy his bands music, a mixture of hard rock and catchy, melodic heavy metal. But just as important, he hopes The Mendenhall Experiement will raise awareness for people with disabilities. He invites anyone with a disability to come to the shows, promising they will get VIP treatment. People with disabilities are just that were people. Were oftentimes just as capable if not more capable of doing things [as] people who arent disabled.”
He sums up The Mendenhall Experiment’s message: Never give up and keep going, because you only fail if you give up. So dont ever stop, keep pushing. It will be a roller coaster with lots of ups and downs, but if you keep at it long enough, good things will happen for you.
The Mendenhall Experiment play Molly Malone’s on Friday, June 30. For more information and additional tour dates, visit themendenhallexperiment.com.
Posted: at 5:47 am
ST. LOUIS You may not think of golf as a marathon but Monday it is for a very special cause.You`ll have to forgive Scott Thomas for feeling a little dj vu in Forest Park Monday afternoon.
This is hole number 72 so we`ve finished. This is our 8th loop of the 9-hole course.
That`s right since sun up Thomas and friends have been swinging and swinging and putting over and over and over again.
And they`re not using any golf carts on their mission to play 100 holes of golf.
I would love to be in those but the whole purpose of this is the 100-hole hike. It`s the physical challenge of walking. Golf is a sport that is enjoyed when it`s walking and enjoyed when it`s in a cart. But Charlie is trying to walk and it seems silly for us to be in modernized carts when we`re trying to raise awareness for him and his ability to walk again.
Sure, a hole in one would be nice, but Scott Thomas and friends are driven by something else.
Through pledges, the persistent players are hoping to help raise the $130,000 for the Farragher family from England.
Their son Charlie has cerebral palsy and in need of a surgery at St. Louis Children`s Hospital to be able to walk.
The Hawthorne Course at Forest Park is where Thomas and friends will continue to drive for show and put for dough for a little boy, even if they might get a little dj vu down the hill from the Art Museum.
See the original post:
Friends play 100 holes for golf to help a child with cerebral palsy … – fox2now.com
Posted: June 25, 2017 at 9:44 pm
Two B.C. menone in a wheelchair and one pushing the wheelchairfinished the Scotiabank Half Marathon Sunday well under the world record time for the second year in a row, but their race won’t be recognized because they built their chair instead of buying it.
Rand Surbey, 42, has Cerebral Palsy. He can’t speak, but he has a clear sense of adventure and smiles the whole way while his friend Jason Cole, 46, pushes his custom-built racing chair along the 21 kilometre half marathon course.
They say the chair is what’s preventing the pair from holding the official Guinness World Record for the fastest half marathon pushing a wheelchair. The current record is held by Andrew Steward of the U.K. who pushed his son Chris around the course in one hour and 54 minutes.
“We were disqualified because this duct-tape encrusted piece of rust is considered an advantage for Rand here over $10,000 carbon fibre racing carriage,” Cole told CTV News.
Cole thinks it’s unfair because neither he nor Surbey has “deep pockets” to afford a commercially sold racing chair. Plus, Cole says, he’d have to modify a store bought chair anyway to suit Surbey. The 42-year-old weighs about 150 pounds, so Cole had to reinforce the front wheel of his chair.
“They don’t realize that every wheelchair has to be adapted to a person’s needs,” he said. “If they really want to make it fair they need to make criteria that anyone can follow regardless of your purse strings.”
Still, Cole is thrilled that the chair they built can not only race other wheelchairs, but contend with able-bodied people racing too.
Surbey and Cole beat the current world record by 20 minutes in 2016, when they finished the Scotiabank Half Marathon in one hour and 34 minutes. This year they managed a similar time, but Cole waited at the finish line to cross just under the record.
“We figured we’d give the other nine billion people on the planet a chance to catch us,” Cole joked.
He didn’t want to dwell on the record though, instead choosing to focus on the funds he and Surbey are raising in support of #TeamCPABC for the Cerebral Palsy Association of BC.
They’ve already raised $15,000 but their goal is $25,000.
“They’re a huge inspiration for our entire team,” said Ian Bushfield, events coordinator with CPABC. “People love seeing how hard they push through a half marathon.”
Surbey and Cole trained together for six days a week preparing for the half marathon. Once they found out it would be hot on race day, they trained in track suits and sweaters to get used to the warmth.
The pair met when Cole was volunteering guiding accessible hikes. He could tell right away that Surbey “had quite a thirst for adventure.”
Since then, they’ve done races together including a Tough Mudder and two half marathons. For Cole, seeing Surbey’s smile makes all the physical pain of running the half marathon worth it.
“He’s the smiles and the thumbs up,” Cole said of Surbey. “He’s the personality of the group.”
Guinness World Records did not respond to a request for comment before publication.
With a report from CTV Vancouver’s Michele Brunoro.
Posted: at 4:44 am
Dylan Pallister, 11, left, will be participating in the Scotiabank Charity Challenge on the weekend to raise money for the Cerebral Palsy Association of B.C.. Contributed
Dylan Pallister will be walking and running intermittently for the Scotiabank 5 kilometer run/walk in Vancouver.
Dylan Pallister has cerebral palsy, but that doesnt stop the enthusiastic 11-year-old from playing wheelchair basketball, sledgehockey, adapted swimming or jogging.
Dylan was diagnosed with the condition when he was a year old.
He was deprived of oxygen to the brain either before, during or after birth.
So its kind of like brain damage. It depends on what part of the brain is damaged, as to what it affects in a child. Every person is different, explained his mother, Celia Pallister.
With Dylan, its his balance and mobility that are affected. Everytime he grows, his muscles become tighter. But that can be improved with exercise.
He walks around with the aid of walking sticks.
Finding activities in the community that are adapted is key, says his mother.
[Cerebral palsy] is a static condition it doesnt get worse, but it doesnt get better, she explained.
Dylan is preparing to participate in the five-kilometre Scotiabank Charity Challenge.
He will be raising money for the Cerebral Palsy Association of B.C., one of 80 charities particpating in the challenge.
This will be his second time participating.
He just wanted to have a goal to raise money to help people going through the same thing as him, raise money for the programs, said Pallister.
Dylan has been preparing for this years event with his mother and their dogs along the dikes in Maple Ridge.
He will be walking and running intermittently.
His mother will be bringing a wheelchair for him, as well, in case he needs a rest.
The Scotiabank Vancouver half-marathon and 5-km run take place June 25.
The half-marathon starts at 7:30 a.m. at UBC Thunderbird/East Mall and the 5-km run/walk starts at 9:15 a.m. on Stanley Park Drive at Ceperley Field.
Posted: June 24, 2017 at 8:47 am
A hurtful remark by one parent to another sparked a mass play date in Auckland on Saturday in support of six-year-old disabled boy Charlie Gordon-Stables.
The youngster with cerebral palsy found himself the unwitting guest-of-honour at the Takapuna event, attended by strangers touched by his mum’s recent brush with discrimination.
Tumbling through those early years should be child’s play. But Charlie has endured a lifetime of sideways glances, and now an unfortunate verbal attack.
Visiting a beachside playground recently with his mum, Charlie had a seizure and two other mothers wanted him gone.
“One mum said I should reconsider coming to the park because Charlie was frightening their children,” says mother Kirstin McKendry.
But on Saturday dozens angry at reading about her ordeal on Facebook came out in support, for what they’re calling “Charlie’s play date”.
“I was appalled that people should see Charlie as someone that should be shut away or shied away from. That’s just wrong,” says Bart Couprie.
And Charlie, what does he reckon?
“Charlie’s a little bit sleepy this morning, but the important thing is any time he does want to come here and his mum wants to come out, now she knows she is always welcome,” says organiser Sarah Thorne.
Ms McKendry is heartened by Saturday’s gesture, but will still be wary while out and about.
“People come up to you and pull their children away and look disgusted at you for some reason,” she says.
It’s a reality check for Kiwis in a week that Australia’s Pauline Hansen said autistic children shouldn’t be in mainstream classrooms.
“New Zealanders are better than that and we know we are, and we need to show that with events like this,” Ms Thorne says.
Just the sound of kids playing gives Charlie a lift, Saturday may just be one of his biggest highs yet.
Posted: June 22, 2017 at 2:47 pm
It was Aaron Holzmueller’s first time in the high school pool, and things didn’t go as planned.
Holzmueller has cerebral palsy, a neurological disorder of movement, muscle tone or posture caused by damage to the brain, most often before birth, according to the Mayo Clinic website. Seizures had been part of Holzmueller’s childhood, yet when he entered the Evanston Township High School pool in early May 2013 a week before his 13th birthday, he hadn’t had one in 11 years.
But there was a recurrence during the practice with the feeder team.
Holzmueller had a seizure underwater, and Evanston assistant swimming coach Joe Springer jumped in to save the then-seventh-grader. Holzmueller was loaded into an ambulance and rushed to the hospital. Wildkits swimming coach Kevin Auger called Holzmueller’s father, Keith, who relayed the news to Holzmueller’s mother, Birdy.
“On the way down to Lurie, I got another call from (Springer), he wanted to check in,” Birdy Holzmueller said. “He said, ‘You know, I hope this doesn’t keep him from coming out to swim again, because he’s one of our Wildkits now.’
“So here we are, I had just reassured them that he hadn’t had seizures in years and years, he has one and they’re calling to make sure he stays around. They’ve gone out of their way to make it both safe and enjoyable for him to participate.”
Aaron Holzmueller, an Evanston resident, returned to the pool in August 2013 with the doctor’s permission. Since entering high school, he has qualified for the IHSA state swimming meet in the athletes with disabilities division each of his first three seasons.
“The state meet is one of my favorite weekends of the year, for sure,” said Aaron Holzmueller, a senior-to-be at Evanston. “The atmosphere is just incredible.”
As a participant in swimming, track and cross country at Evanston, Aaron Holzmueller remains plenty active. But because of the hurdles he’s already had to face, Birdy Holzmueller is quick to point out her appreciation that her son hasn’t had a seizure since May 2013.
As far as running, Aaron Holzmueller has been doing so competitively since fourth grade. He’s run with older brother Nathan who was captain of Evanston’s cross country team in Aaron Holzmueller’s sophomore season as well, and plans to again run on the team as a senior.
Aaron Holzmueller also swims and runs in the Great Lakes Adaptive Sports Association, which is based in Lake Forest. The organization describes its mission as to “promote and support the optimal development and well-being of youth, adults and military veterans who have a physical or visual disability through the provision of inclusive recreation, fitness and competitive sports activities.”
Aaron Holzmueller ran in the Adult National Open and Great Lakes Regional Games on June 9-11, held at Lake Forest High School and Loyola Academy. As a 17-year-old male with cerebral palsy in the T36 classification, Aaron Holzmueller is only judged against those of similar ability. In this particular meet, he was the lone participant in each of his events the 400-meter dash (1 minute, 26.92 seconds) and 800 (3:09.99) and and thus, finished first in each.
GLASA is like “how some able-bodies athlete would have a club team or AAU,” Aaron Holzmueller said. He’s been a member since he was 9 years old.
“I enjoy it a lot, because before GLASA, I didn’t really know I could compete with other people who had cerebral palsy,” Aaron Holzmueller said. “And it’s allowed me to compete.
“I get to meet people from all over the country, some are facing the same difficulties as you, but are also trying to reach the same goals. It’s been a great experience.”
Rich Mayor is a freelance reporter for Pioneer Press.
Originally posted here:
Evanston senior-to-be with cerebral palsy perseveres in pool, on track – Chicago Tribune
Posted: at 2:47 pm
Emma Greenfield says one of the biggest blessings in her young life has been her disability.
She was born 27 weeks premature and has used a wheelchair since the age of 5 after being diagnosed with cerebral palsy.
Im not going to lie, it was challenging at times, said Greenfield, 17, who undergoes occupational and physical therapy on a weekly basis. But now that Im older, it has really become my biggest blessing, because its helped open my eyes to others and be aware of other peoples issues.
The gregarious Greenfield, who said the main challenge of living with a disability is dealing with public perceptions, has strived to be the change she seeks in society by taking on an advocacy role at her alma mater in Albertson, a state-funded special-education school for severely disabled students. One of those efforts involved being a Viscardi Ambassador.
About 20 ambassadors visit schools in rotating groups to show students were just like everybody else, said Greenfield, of Hicksville. Since becoming an ambassador last year, she said she has answered all types of questions, ranging from How do you take a shower? to What is your favorite food?
But ambassadorship aside, Greenfield said the most important connection she has made is the one with her twin brother, Dylan, who also has cerebral palsy and some developmental delays.
Were like a team, Greenfield said of her brother, who attends the Nassau BOCES Carmen Road School in Massapequa Park. I think a lot of my motivation to pursue social work is because of him.
Greenfields other achievements include being on her schools wheelchair basketball team, which has placed first several times at the Nassau County Empire State Games for the Physically Challenged. She also received her schools Scott Bubba Pollack Award for her sportsmanship and character on and off the court.
Emma is an exceptional student with brains, beauty and drive, said her guidance counselor, Monica Snyder. I have had the pleasure of getting to know her very well over the past several years, and have watched her blossom into a well-spoken, caring, bright and energetic young woman.
Greenfield plans to major in social work at Edinboro University of Pennsylvania, where she is most looking forward to new beginnings, making my mark and doing the best I can. She said she is also looking forward to reconnecting with many of her friends who already attend Edinboro.
Still, she said, she will always have a soft spot in her heart for her first school.
Viscardi is like my home, Greenfield said. Everybody became your family and nobody ever treated you like you were different. Ive been here a long time, and the memories I have will last forever.
IF I RULED THE WORLD: I would like people to just be kind. Kindness can go a long way, and you never know what other people are going through.
See the article here:
Henry Viscardi student calls cerebral palsy ‘biggest blessing’ – Newsday
Posted: at 2:47 pm
A diagnosis of cerebral palsy (CP) is usually only made after a doctor has carried out a range of specialised tests with a team of health professionals. These professionals may include neurologists, paediatricians, genetic specialists and a host of others.
The most common symptoms of CP are slow development, abnormal muscle tone and postural abnormalities which may include low muscle tone (hypotonia) or high muscle tone (hypertonia). There is no one cause to cerebral palsy but research has shown that in most cases, about 70%, the causes can be traced to the period before birth (the prenatal period).
About 20% of cerebral palsy cases occur during the birthing process (perinatally). These will include a situation where the babys brain is injured because there has been lack of oxygen during delivery. This is otherwise known as hypoxic ischaemic encephalopathy. Within this 20% of cases are also babies who acquire cerebral palsy as a result of being delivered prematurely.
The further 10% of cases are post-birth and can arise from traumatic injury or infections during the early years of life. Examples of this cause would be bacterial meningitis or viral encephalitis.
Unfortunately, in many cases the cause of a particular childs cerebral palsy cannot be determined. Where there is hypoxic brain injury there are often markers in the babys condition at birth and subsequent brain imaging which enable the likely cause of the cerebral palsy to be known.
In the relatively rare circumstances where the cerebral palsy was avoidable it is always worth investigating the potential for a legal claim because cerebral palsy can give rise to a wide spectrum of problems ranging from severe movement difficulties and postural problems to relatively mild brain injury. Almost all of these conditions are easier to cope with if a family have access to funds allocated to the child specifically awarded to deal with the problems of the condition.
An award of damages can provide a degree of certainty in an otherwise uncertain situation.
For more information on the circumstances in which a claim may be worth investigating see Bridget Hughes blog Cerebral Palsy What are the Triggers for Investigating a Clinical Negligence Claim?.
If your child has been affected by cerebral palsy and you would like to understand better whether it may have been caused as a result of an avoidable medical accident one of the team would be pleased to help. We have many very experienced lawyers who have dealt with all types of cases relating to cerebral palsy, for example oxygen deprivation at birth, inappropriate treatment following premature birth, post delivery delays and misdiagnosis and mismanagement of critical care all of which resulted in damage. The team have, over the years, secured a number of extremely high awards, some being the highest ever awarded at that point in time.