Category Archives: Uncategorized

Understanding Brain Injury

Look at this picture. Can you find the brain stem?  It’s the orange part of the brain in this photo.  That’s where a lot of the CP injuries take place.  Do you see how close it is to the ear?  When I was born, my cord was wrapped around my ear.  My ear was pressed a long time against my mother’s pelvis.  That stopped oxygen and blood from reaching my brain stem.  That’s how I was injured.

The brainstem is where man is different from animals.  That’s where we learn to walk, talk, read, write, learn to use our thumbs against our fingers, and learn to differentiate things by feeling with our hands.  If you are injured here in even one area it could stop development in the other areas mentioned.  That’s the funny part.  We are tricked into thinking we cannot learn to read or write or speak, but with hard work we can get around the roadblock, reconnect and them make good progress.

Please help me reconnect and get around my roadblocks.

It Takes a Team

The Captains of My Team

Hillary Clinton wrote a book called “It Takes a Village.”  She uses the African concept that it takes a village to raise one child.  Everyone has a responsibility.  Well, the same goes for working with cerebral palsy.  No one person can do all the teaching and all the therapy for the person with CP.  It’s too much work.  People need to live their lives and enjoy their lives.

Sunday was Mother’s Day, so I need to say special thanks to my mom and dad for being the Captains of my ship.  They guide the crew and me through some rough waters and some beautiful seas as well.  I have come a long way in overcoming challenges in my life thanks to my parents and sisters and brother and doctors, nurses, therapists, teachers, grandparents, aunties and uncles, classmates and many others.  Mahalo nui loa for guiding me.  It really does take a team.  I hope you can rest and take a day off soon.  I promise to hold the course.  Don’t give up, yet.

A Dream Come True

WAILUA — Josh Iloreta, who recently celebrated his 18th birthday, wants to move out and be on his own by the time he is 20 years old, Kaua‘i Fire Capt. Steven Doi said.

He has also aspired to climb the Sleeping Giant mountain on the Eastside. Thanks to a group of volunteers, family members and friends, he checked this one off his list Sunday.

At less than 5 feet tall and tipping the scale at just under 100 pounds, Josh could only dream of accomplishing this feat due to the limitations imposed by his cerebral palsy.

The neurological disorder has Josh confined to a bed or a special wheelchair, Doi said in a letter to Kaua‘i Fire Department volunteers.

The fire captain said he learned about Josh on Dec. 21 while driving home with his daughters, Julie and Chelsea, who were talking about Holly Iloreta, Josh’s sister.

Holly, a classmate with Julie, spoke of Josh’s dream of someday climbing a mountain.

“She said every time they drive by the Sleeping Giant mountain, her brother looks up, and although he cannot speak, she knows what’s in his mind: ‘If I could only see the view from the top,’” Doi said in his letter.

That conversation prompted Doi into action, his mind wondering, “What if?”

“I told Julie that our department has a stokes litter with a wheel, and if I could get a ‘bunch’ of fire fighters together, perhaps we can make Josh’s dream come somewhat true,” Doi said, tears welling up in his eyes at the thought.

“Although realistically he probably will never be able to walk up the trail, we could carry him up. This is not about us, but about Josh.”

Doi secured the approval to use the equipment from the Kaua‘i Fire Department, and on Sunday 20 to 30 volunteer fire fighters and staff from the department showed up along with Josh, his family, relatives and friends.

“This is not a department activity,” Doi said. “As such, we don’t have any chiefs here. Everyone is here for one purpose — to help Josh. We’re all the same.”

Doi said in addition to the volunteers, the Hawai‘i Fire Fighters Association approved getting sandwiches and some food for a light lunch following the ascent.

Although he could not utter a word, Josh was excited. His arms waved and flailed in the brisk morning air as his family pickup pulled up to the waiting group of volunteers and friends.

With his mother and Holly helping to calm him and ease the teenager’s apprehension over being strapped in the Stokes litter, Josh got additional help from one of the fire volunteers who attends the same church as he does.

Working in silence, the fire volunteers had Josh ready to go, the teenager’s hands making contact with the lead carriers and music from a portable stereo adding spice to the nippy night air which battled against the morning sun peeping over Sleeping Giant.

Nounou Mountain is more commonly referred to as Sleeping Giant because of the silhouetted shape of the range. Nounou Trail climbs roughly 1,000 feet through forest over the course of a couple miles, offering a spectacular vantage of the ocean, Wailua River and Mt. Wai‘ale‘ale on a clear day.

Doi said meeting Josh has opened his heart and mind.

“I’m grateful that my family is blessed with some normality and not bedridden or disabled,” he said. “Although my daughters have attributed all of my ‘white hairs,’ I love them dearly.”

He expressed his greatest appreciation to the volunteers who came out to help Josh fulfill one of his dreams.

“We’re not done yet,” Doi said. “After this, we’ll probably get him to surf out in Hanalei.”

As the group made its way up the Sleeping Giant, forming a procession behind the lead group of fire fighters moving the Stokes litter, Josh’s mom said, “This is really a dream come true.”

Cerebral palsy refers to any one of a number of neurological disorders which appear in infancy or early childhood and permanently affect body movement and muscle coordination, according to the National Institute of Neurological Disorders and Stroke Web site.

Although cerebral palsy affects muscle movement, it is not caused by problems in the muscles or nerves. It is caused by abnormalities in parts of the brain which control muscle movements.

The majority of children with cerebral palsy are born with it, although it may not be detected until months, or years, later. There is no cure, but treatment will often improve a child’s capabilities, the Web site states.

Determination drives Kapa’a student

Joshua Iloreta strives to be like everyone else

By Pamela Varma Brown
Kaua’i People

When asked if he is a flirt, 20-year Joshua Iloreta smiles broadly, his large dark eyes flashing mischievously. He loves music, has written his own rap song and wants to attend college.

In these ways he’s similar to many other young men his age. But unlike others, Joshua, who has cerebral palsy, lives his life in an electric wheelchair, unable to speak, watching and listening to the world around him.

He communicates via a Vantage computer on which icons are displayed in a large grid. By pushing a button installed on the side of his wheelchair, he is able to scroll through pages and pages of icons, selecting in order the ones that will spell out his thoughts and speak them out loud for him.

“I feel sad I am disabled,” he spells out.

“His mind is working. He can understand you perfectly,” says his mother Emma Iloreta.

Therein lies Joshua’s sadness. Locked inside his body are the ideas and aspirations of an ambitious man.

He can hold a conversation using his computer. It’s a slow process that requires the patience of everyone involved while he scans the selection of icons. He currently lacks the fine motor skills to type on a keyboard.

These limitations can be frustrating as his mind races ahead of the machine.

And though words and phrases can be added to his computer – he surprises a visitor when the electronic voice asks, “What’s up?” – there’s so much more Joshua wants to say. “What I want to say is not in my Vantage,” he writes.

Joshua has gone to public school throughout his life, primarily attending special education classes and currently attends Kapa’a High. He’s had an aide with him in every class and has gotten good grades, but his mother wonders how much of the schoolwork Joshua has done by himself. His parents have been told he can only barely read at first grade level.

Last summer Emma began drilling him on vocabulary words, how to tell time using a clock with hands, how to discern different types of money, such as $1 bills and $10 bills and other skills.

“He picks up pretty fast. He’s determined to learn and to do things on his own,” Emma says. “He’s determined to help around the house. He puts dirty clothes in the laundry room, changes his clothes even while sitting on the chair.”

But there is much he can’t yet do on his own. With only several months of school remaining, he and his family are faced with big decisions. Once he is out of school, what will he do?

His mother has been taking him to Honolulu for sessions of electrical throat stimulation that might wake up and strengthen his muscles, allowing him to speak. During one session, Joshua was heard whispering lyrics to a Beyonce song. When asked how he felt speaking words out loud, he flashes a 1,000-watt smile.

Progress has been slow, however, at only one or two visits per month, but flying to O’ahu for the recommended three to four treatments per week is not possible for the family right now. Emma has tried to purchase or rent throat stimulation equipment but has been told it is not available to the general public.

Emma and his father, Jimmy, would love to find experts on Kaua’i who can help.

Joshua’s part-time nurse, Ed Stumpf, said it has been difficult for the family to find cerebral palsy-specific help on Kaua’i. “Everybody with CP is different and which part of the body is affected varies from one person to another,” he said.

“It going to take a village,” Stumpf said. “Mom and Dad can’t do this alone.”

The Iloretas are concerned because their son Jason, a basketball and volleyball player at Kapa’a High, will be going to college this fall.

“The brothers are inseparable. The closeness is amazing,” Emma says. “Jason understands him better than anyone else. That’s why I’m worried when Jason leaves for school.”

Meanwhile, Joshua has a list of things he wants to accomplish.

He wants to attend college, study music and write songs. He wants to know if he can have a baby. He wants to get married when he is about 25 years old. He wants to ride a bicycle. “I want to do normal things with normal people,” he says through his computer.

Joshua is adventurous and loves to travel, having visited the Philippines multiple times, Canada, New York and other places. He celebrated his 20th birthday last month in Las Vegas while visiting sister Holly who lives there.

He attended the winter ball and the prom at school. And when Holly mentioned to her friend whose father is a Kaua’i fire fighter that Joshua wanted to go up Sleeping Giant mountain, that dream came true as well.

“He was on like a stretcher, they tied his legs and a seat belt and pillows around him and gave him an iPod. Six or seven guys carried him. They took turns,” Emma said.

Joshua volunteers at the county building, accompanied by a teacher from Kapa’a High, where he directs customers to various county departments and offices, sometimes leading them to their desired destination. He also volunteers at the Kaua’i Community College One-Stop Center and hopes to audit classes at the school in the future.

The Iloreta family hopes to find a personal assistant who will be able to help Joshua continue his community activities. Qualified people may contact Emma, 346-8017.

Most of all, Joshua craves contact with others his age, not “old people like my mom and dad and nurses,” he says. He has his own email address (Joshua_Iloreta@hotmail.com) and wants to meet new people in whatever ways are possible. He literally squirms with joy in his wheelchair at the thought of people reading his story.

FAQ #2 Who gets Cerebral Palsy?

First of all, Cerebral Palsy is not contagious.  You are not going to get cerebral palsy by hugging someone who has CP.(So hug me! )

Cerebral Palsy affects babies before they are born or shortly after.  Rich babies, poor babies, white babies, Asian babies, it doesn’t matter. They are all affected at about the same rate.   However, premature babies have a higher incidence of CP.  Cerebral palsy is caused by a brain injury when the brain is not strong enough.  This could be from spinal meningitis or from bleeding like a stroke.

What is Cerebral Palsy?

I have had cerebral palsy for 20 years, but I really don’t know what it is.  As I learn about it I will write here.  My goal is to learn and teach others about CP.  Some day I want to go on the radio and visit college nursing classes to help everyone understand about CP.

Cerebral Palsy Made Easy

Cerebral = having to do with the brain.  Palsy = having to do with the muscles.

Cerebral palsy is not one specific symptom.  It is a group of possible outcomes from a brain injury before, during or after birth up to 3 years of age.  The brain and nervous system of the person with CP has to overcome nervous system communication difficulties.  These cause malfunction in the movement of the body. There is nothing wrong with the muscles of the person with CP.  It’s a communication problem.  The person with CP must build many new bridges and make new communication routes in the brain.  It takes a lot of repetition to make these new communication routes and the road can be bumpy.  The person with CP often has spastic movements.  It is not contagious.  Sometimes CP affects half of the body and not the other half.  This could be left/right or upper/lower half.

There is no known cure for CP.  The incidence rate is about 2 to 2.5 births/1000 births in developed countries or about 120-150 people on Kauai.  The incidence rate is actually increasing because babies with low birth weights are more likely to have CP, and due to many health successes babies with low birth weights are living longer than 30 years ago.

  • Mental disadvantage (IQ < 50): 31%
  • Active seizures: 21%
  • Mental disadvantage (IQ < 50) and not walking: 20%
  • Blindness: 11%

People with CP often have problems with posture and therefore slouch or can be clumsy.  Speech and language problems are common.  With therapy and hard work and some new educational methods, the quality of life for individuals can improve greatly.  That’s what we are here to talk about today.  There is HOPE.

Aloha and Welcome to my blog!

Joshua Iloreta

My name is Joshua Iloreta.  I am 20 years old and I have cerebral palsy.  I live on Kauai.  It’s beautiful here, but we don’t have much information on Cerebral Palsy, so I want to write a blog to help others.  I hope to write about resources, workshops, and support groups.  Please send your ideas.  Let’s have a chat!