Robotic Device May Help Kids With Cerebral Palsy

Those with condition known as ‘crouch gait’ had better posture and balance after 15 training sessions

By Dennis Thompson

HealthDay Reporter

WEDNESDAY, July 26, 2017 (HealthDay News) — A robotic training device helped improve the walking ability of children with cerebral palsy who suffer from a condition known as “crouch gait,” a small study found.

The device provided strength training for muscles that were too weak to support fully upright posture, explained senior researcher Sunil Agrawal. He is a professor of rehabilitation and regenerative medicine and mechanical engineering at the Columbia University School of Engineering and Applied Sciences.

“Children improved their posture, their walking speed, their balance, as well as the symmetry of their walking, through this approach,” Agrawal said.

Crouch gait is an abnormality caused by a type of cerebral palsy called spastic diplegia. In spastic diplegia, stiff muscles in both legs hamper the normal give-and-take of walking, preventing a normal stride.

Human movement relies on two sets of muscles: flexor muscles that pull, and extensor muscles that push. For example, bending your knee requires flexor muscles, while straightening your leg back out requires extensor muscles.

Children with crouch gait are always flexed, Agrawal said, with their hips, knees and ankles unable to move back and forth because the flexor muscles of those joints are too stiff and the extensor muscles too weak.

“Their hips are not straight. Their knees and ankles are not straight,” Agrawal said. “Because of this bent position, they have a lot of instability in their gait.”

Typical physical therapy for crouch gait relies on elastic bands, weights or even resistance provided by a professional therapist to improve the strength of extensor knee muscles, researchers explained in background notes.

Unfortunately, this approach has resulted in inconsistent outcomes because of its primary focus on knee strength, the researchers said.

The Tethered Pelvic Assist Device (TPAD) used in the study is a belt worn around the hips, with eight cables leading down from the belt to motors attached to a treadmill, Agrawal explained.

The cables pull the child downward as they walk on the treadmill, creating a force equivalent to 10 percent of their body weight — about the same as a healthy kid carrying a backpack, Agrawal said.

Physical therapists monitor the child’s gait using a camera system, and adjust the force provided by the wires to strengthen the muscles that appear weakest, Agrawal explained.

Six children with crouch gait participated in training with the TPAD. The children all could walk independently, but had trouble walking on surfaces that varied from level to uneven.

After 15 training sessions with the device, the kids experienced improvement in their ability to flex and extend their hips, knees and ankles, the study authors said.



The kids also developed a longer stride, were better able to clear their foot off the ground without dragging, and improved their walking speed, the findings showed.

One cerebral palsy expert said the results were impressive.

“They’re changing the motor pattern of the child to get some lengthening in the muscles, and I think that’s amazing,” said Valerie Pieraccini, director of therapy for United Cerebral Palsy of Central Arizona. “They use a downward force equivalent to a healthy child carrying a backpack, so you can look at what they’re doing and already see ways they might be able to integrate what they’re discovering about walking into a child’s real world.”

Compared to current therapy, “this is much more sophisticated,” Pieraccini continued. “But I would also have to say when we do gait training physically, it’s a therapist’s hands on a child, and as much as we try I don’t think we can ever replace that human element. There’s an intuition involved.”

The TPAD now needs to be tested in a larger set of children, Agrawal said. Researchers are also investigating whether it could be helpful in treating cerebral palsy kids with other walking problems, such as those with one healthy leg and one weak leg.

Cerebral palsy is a group of neurological disorders that affect a person’s ability to move, walk, maintain balance and keep good posture, according to the U.S. Centers for Disease Control and Prevention. It is the most common motor disability in childhood, affecting about one in every 323 children.

The findings were published July 26 in the journal Science Robotics.

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Cerebral Palsy: 15 Things You Didn’t Know

Cerebral palsy is a disorder that many people talk about but few understand. Despite the fact that the disorder has spent a considerable amount of time in the spotlight and under the scrutiny of the public eye, there are still some things that many people don’t know. With that in mind, here we present our list of 15 things you probably didn’t know about cerebral palsy. Well, what are you waiting for? Check it out for yourself below!

Number Fifteen: Cerebral Palsy Is Not a Disease

The proper term for it is a disorder. It’s not a birth defect and it’s definitely not contagious, either.

Number Fourteen: It’s More Common Than You Think

In fact, it’s the most common motor disability in children. Approximately three in every 1,000 children are diagnosed with the disorder.

Number Thirteen: There’s No One Right Way to Diagnose It

Despite the fact that it’s the most common motor disability in children, there is no one correct way to diagnose cerebral palsy. Most doctors are able to diagnose children by studying their movement, development, and speaking with parents.

“I think it’s great of you to let her go on holiday with you”

Storme_Short_blog672x372

Actor Storme Toolis stars in one of the Shorts, What Not To Do… At A Nail Bar, Scope made with Channel 4 for its End the Awkward campaign. Storme reveals how she uses humour to deal with awkward moments… 

Men have no idea how to dance with me. I don’t expect them to be experts at wheelchair salsa, but whenever I go clubbing I get high fives, people moving my wheelchair, patting me on my head and even sitting in my lap. That’s not going to make me want to speak to you.

People react in these ways because they don’t expect you to be there.

A few years ago, I went on an Inbetweeners-style holiday with my girlfriends to Zante. I’m the only disabled girl in my group of friends and we just went around and did all the usual things. We were on a boat cruise and one of the guys running it came up to my friend and said: “I think it’s great of you to let her go on holiday with you.” My friend got really offended. But you just have to laugh really.

The best way to get over awkward moments is to embrace the awkwardness and make it positive and funny. And if someone tells you can’t do something, make sure you do it.

People smile unnecessarily when they speak to me 

I’m quite blunt and direct – I like people to be the same with me. I think I get more offended if people don’t ask me something. If you ask me why I’m in a wheelchair, I’ll answer the question in two seconds – I’ve been asked about a million times. And it’s better than being stared at.

The Shorts are brilliant, I like the job interview and the bar date. They’re funny and that stuff actually does happen. People talk slowly to me or they smile unnecessarily, even if they’re asking a serious question.

I think it’s important Scope is doing this campaign. Until we talk about it, nothing is going to change. Everyone is different and thinks of their impairment in their own way. I use humour and I use my job as an actor. I think humour is an important tool – what better way is there to relate to people and bring them together than when they’re both laughing?

Storme laughing in one of our End The Awkward shorts

Filming the Shorts was good fun. The actor who played the customer was lovely. She felt so awful about having to say her lines! When we had the run-through we were both sitting there cringing and wondering how we were going to get through it with straight faces.

I’m working on a theatre project with the Barbican calledRedefining Juliet. It’s a play based on Shakespeare’s Romeo and Juliet, but changing the conventional casting of Juliet by portraying her as disabled or as a larger woman. It’s subverting the usual casting of the sexy roles in Shakespeare. It’s showing disability as sexually attractive and asking why these women never get to play such roles.

It’s so important that people see disabled people in the theatre, on TV, everywhere. It was the same with race 30 or 40 years ago, disability is a fact of life – if you don’t see life on screen or in theatre it’s not a true reflection of society. People still feel uncomfortable around disability, especially seeing it as something desirable. That’s why it’s so important to show it and push those boundaries.

What Not To Do… At A Nail Bar

One bereaved mum’s mission to support others through grief

Bronwyn Evans, right, with her son Storm, 16, and daughter Chelsea, 13A heartbroken mother whose daughter died at the age of four-and-a-half battled with her grief for nearly nine years before finding salvation – and now she wants to help other families. Bronwyn Evans, 34, lost her daughter Roxy suddenly on October 20, 2007, leaving the mother-of-three and partner Wayne Palmer devastated. The youngster, who was born 11 weeks early on May 4, 2003, had spastic quadraplegic cerebral palsy as well as severe learning and developmental delay, which also affects her twin sister Chelsea. Bronwyn, who lives in Church Street, Hemel Hempstead, said: “It was absolutely devastating. I would not wish this burden on anyone. It’s so sad. “Roxy had a fever so I gave her some Calpol and put her down for a nap while I made her dinner. “When I went to wake her, she had died.” In the painful weeks and months that followed, Bronwyn and Wayne struggled to cope with their grief and they found there was scant support for bereaved families in Hertfordshire – only groups for those who had lost babies through Sudden Infant Death Syndrome. Bronwyn, who is also mum to teenage son Storm, 16, said: “I internalised my grief. I could not talk about it. “In the early days, I did not want anyone to talk to me. It was a minefield for others, because they did not know what to say. “I actually had someone cross over the street so they didn’t have to talk to me. “Talking about children dying is taboo – it’s unnacceptable. No one wants to think about it happening to their family. “By talking to me, it made it real and scary for them.” In the weeks following her death Roxy’s body had to undergo an autopsy which added to the couple’s pain, meaning they had to wait more than a month before they could lay their daughter to rest. The inquest and post-mortem found that the youngster had a lot of debris in her lungs, caused by her lack of the normal swallowing reflex when eating. As a result, Roxy regularly suffered from severe chest infections and high temperatures. On this occasion, the fever had become too much for her little body and it had shut down. This discovery led to health bosses allowing Chelsea to be fitted with a feeding tube to stop her choking every time she was fed by her parents. Bronwyn, who works as a systems analyst, said: “We were desperate for people to help us, we were telling them ‘these girls are choking, but they wouldn’t listen. “Because her sister died, Chelsea lives.” In the years following the girls’ early entry to the world, the family lived in the knowledge that the twins had a limited life expectancy. “We always knew that we would be burying our daughters one day, because of their complex health issues, but we could still not imagine the magnitude of the loss. “Nothing can prepare you for that.” The tragedy put a heavy strain on Bronwyn and Wayne’s relationship and the couple realised they were better off apart. The pair remain good friends and are devoted to caring for Roxy’s twin sister Chelsea, now 13. Wayne, 34, cares for Chelsea at home in a specially-converted bungalow in Hatfield and the teenager goes to school at Watling View in St Albans. Bronwyn, who moved to Hemel in 2008, said: “He has done an amazing job with her, and he is a fantastic dad. “We work together and our kids come first. We will always be friends.” Due to the lack of outside support in the months and years that followed Roxy’s death, Bronwyn found talking about her daughter extremely painful to the point she would not look at photos. She said: “I kept the photos privately in a drawer, but if I was rummaging for something and came across one of Roxy it would bring it all back and I would get very upset.” Recalling her daughter’s personality, Bronwyn remembers how fiesty she was. “She was stubborn, she was switched on. When she wanted something, she wanted it now! “With the girls’ conditions, their muscles can get very tense and go into spasm. “Sometimes when you had Roxy on your lap, she would get this look in her eye and you would know what was coming. “She had a very strong left and right hook, and she thought it was the funniest thing in the world – her laugh was infectious. “She was our strongest girl, so it was even more of a shock to lose her.” Talking about the death of a child can be difficult to raise in a conversation, as Bronwyn has found. In the nearly nine years since Roxy’s death, she says she had never spoken to another bereaved parent so she always wondered if the strength of her emotions were ‘normal’. It wasn’t until she suffered a back injury earlier this year and took part in a ‘fit for work’ programme, she began chatting to a woman about the loss of Roxy. “She told me about The Compassionate Friends, who support people who have lost a child at any age and in any circumstance, so I gave them a call,” said Bronwyn. “But they told me they had no branch in Hertfordshire, so I found myself saying ‘Well, if I set one up would you help me?’”. n Next week: find out about Bronwyn’s new Compassionate Friends support group for bereaved families, based in Hemel but serving the whole county.

Service Dog Case Headed To Supreme Court Cerebral Palsy Lawyer

WASHINGTON — The U.S. Supreme Court said late last month that it will consider the case of a 12-year-old Jackson, Mich., girl with cerebral palsy and a goldendoodle named Wonder, deciding whether Ehlena Fry’s family can sue for damages from a school district that balked at the service dog’s presence in the classroom.

Stacy and Brent Fry brought the case against Napoleon Community Schools and the Jackson County Intermediate School District in 2012 under the Americans with Disabilities Act, arguing that school officials — who initially prohibited Ehlena from bringing Wonder to school — denied her equal access to programs and ultimately the chance to interact with other students at Ezra Eby Elementary.
 Cerebral Palsy Lawyer
“This case could once and for all remove unfair legal hurdles for victims of discrimination across the country that prevent them from seeking justice guaranteed by the ADA,” said Michael Steinberg, legal director of the American Civil Liberties Union in Michigan, which brought the suit with the Frys. “To force a child to choose between her independence and education is not only illegal, it is heartless.”
In their opposition to the Supreme Court’s taking up the case, however, lawyers for the school district argued that Wonder’s initial barring from the classroom was because officials felt a human aide satisfied Ehlena’s needs and that if her family had followed standard procedures for challenging the districts’ decision, the dispute could have been resolved within months.
 Cerebral Palsy Lawyer
“The dispute whether Wonder could accompany (Ehlena) to school continued for nearly three years without petitioners utilizing IDEA (the Individuals with Disabilities Education Act) procedures. Had they done so, the dispute could have been resolved in less than 105 days,” wrote Timothy Mullins, a Troy, Mich. attorney representing the districts. “Most, if not all, of the alleged harm could have been avoided.”
At the heart of the case is an esoteric legal question: whether the Frys were required to exhaust their options under the IDEA — which calls for an administrative hearing and doesn’t allow for cash damages to be awarded — before bringing a claim under the ADA, as the Frys did. In their claim, they requested unspecified damages and attorney fees, but U.S. District Court and the U.S. Court of Appeals for the Sixth Circuit ruled against them.
The Frys and the ACLU maintain there is also a conflict between the federal appellate circuits and how they apply the law, meaning the U.S. Supreme Court should settle the question. A hearing will be scheduled in the next term, which begins in October, and both sides will have a chance to argue before the high court.
 Cerebral Palsy Lawyer
The family says it bought Wonder for Ehlena — who was born with cerebral palsy, a condition that limits her motor skills and mobility but doesn’t impair cognitive abilities — in 2009, when she was 5 years old on the advice of a pediatrician. The dog was certified and trained and was able to help her retrieve dropped items, open and close doors, switch lights off and on, and perform other tasks.
But even though Ehlena’s pediatrician prescribed Wonder to be with Ehlena at all times to solidify their bond, the school district initially refused to let her bring the dog to school from October 2009 to April 2010. After lawyers intervened, Ehlena was allowed to bring Wonder to school for a “test period,” but the dog was required to sit at the back of the class — and she was prohibited from taking Wonder outside for recess or to the library or lunch.
At the end of the school year, the school district again prohibited Wonder altogether.
 Cerebral Palsy Lawyer
The Frys then home schooled Ehlena and filed a complaint with the Office of Civil Rights (OCR) of the U.S. Department of Education, accusing the school district of violating the ADA. OCR found on the Frys’ behalf — after which the district agreed to permit the dog to return to the school with Ehlena. But after meeting with school officials, the Frys had what they called “serious concerns that the administration would resent (Ehlena) and make her return to school difficult.”
They ended up enrolling Ehlena in another school district altogether where the dog was welcomed.
The ACLU and the Frys said they were encouraged by the Supreme Court’s decision to take the case: In order to grant a hearing, four or more justices must agree that there are elements to a case that make it worth taking on.
 Cerebral Palsy Lawyer
“As a parent, I’ll never forget the smile on Ehlena’s face when she first began working with Wonder and was able to do things on her own without my help,” said her mom, Stacy. “We’re hopeful that the Supreme Court will make it clear that school can’t treat children with disabilities differently and stand in the way of their independence.”

Disability : Florida Teen Dies After Disabled Mom Loses Custody

The last time Doris Freyre saw her 14-year-old daughter, Marie, alive was around 1 p.m. on April 26. She watched helplessly as the disabled girl was strapped to a stretcher and sent by ambulance to a nursing home in Miami — five hours away from their home in Tampa, Fla.

Florida child welfare authorities had deemed Freyre, a 59-year-old single mother with six herniated discs and carpal tunnel syndrome in both her wrists, unable to take care of Marie, who had cerebral palsy and suffered from life-threatening seizures.

Marie, who was in state custody despite pleas from her mother that she could better care for her daughter at home, died alone just 12 hours later on April 27 — dehydrated and not properly medicated — of cardiac arrest, according to a Miami Herald investigation.

Neither a nurse nor a social worker accompanied the screaming girl en route to the institution. And her mother was not allowed to ride with the girl, who could not talk and had a rigid medication routine.

“I started crying because I knew it would be too much for my daughter on that trip,” Freyre, heaving with sobs, told ABCNews.com. “There was no doctor there to receive her, only nurses. They didn’t send a report on how to give her food or meds. They didn’t give her food or water until late hours of the night. My family has been destroyed.”

An estimated 4.1 million parents have disabilities in the United States — roughly 6.2 percent of all parents with children under 18, according to a report released in September by the National Council on Disability, “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children.”

They are the only parents who as a group must struggle to retain custody of their children solely because of their disabilities, according to council attorney Robyn Powell.

Removal rates where parents have a psychiatric disability can be as high as 70 to 80 percent; for an intellectual disability, 40 to 80 percent; and with physical disability, 13 percent, according to the report.

Parents who are blind or deaf also have extremely high rates of child removal and loss of their parental rights.

“We also find it interesting that two-thirds of the states’ child welfare laws list disability in and of itself as ground for termination of parents’ rights,” said Powell. “They don’t have to come in and say a parent even did anything bad.”

The federal Americans With Disabilities Act mandates states to support these parents by providing “reasonable accommodations.”

Freyre had received support through Medicaid for her daughter’s care, but needed some additional help at night. An aide, who was later discredited, made a report to child welfare authorities that triggered the child’s removal from the home.

Marie’s case was bungled by bureaucracy, according to the lengthy investigation by the Miami Herald, which first reported the story.

A Tampa judge ordered Marie returned to her mother, but with 24/7 in-home nursing care.

“You are to be congratulated for caring for your daughter alone for 14 years. This is something that has to have been very, very difficult for you as a mother,” Hillsborough Circuit Judge Vivian Corvo said at a hearing on the case March 30, 2016. “I was moved by how hard you’ve worked to take care of your daughter.”

But state health care officials refused to pay for the in-home care, even though it cost less than institutionalizing Marie. Other agencies and health care officials either didn’t communicate with one another or ignored the court, according to the Herald.

The girl lingered in Tampa General Hospital for 29 days before she was loaded on an ambulance stretcher screaming. Freyre was not allowed to go with her daughter to help with feeding and to keep her stable.

Mother Will Live With Scars Forever

“This is one of the worst cases I have ever seen, and I have handled some bad cases,” saidPeter J. Brudny, a medical malpractice attorney who is representing Freyre. “These are scars she will carry forever.”

“Had [Marie] lived and not seen this horrendous breakdown by every agency, she would have been warehoused … in Miami for months and maybe the rest of her life,” he said.

Brudny said he was looking into a federal lawsuit alleging violation of Freyre’s civil rights against the various agencies involved in the care of the teen who died.

Tampa General Hospital issued a prepared statement on the case: “We were surprised and tremendously saddened to learn of this child’s death 12 hours after she arrived without incident at the nursing home in Miami. We know how hard her mother worked to care for her, and the circumstances are truly tragic.”

The statement said state child welfare authorities had placed the child at the hospital for “shelter” while other arrangements were being made.

“We cannot comment on specific details of her care due to patient privacy issues,” it said. “However, Tampa General Hospital vigorously denies that it violated any court orders or that the patient was underfed or dehydrated while at the hospital. Her physicians would not have authorized her discharge if they had any concerns about her medical condition.”

It said “all decisions” on placement and medical transport were made by the Florida Department of Children and Families “in consultation” with a private ambulance company.

The Department of Children and Families outsources many of its services as required by the state legislature and didn’t have the legal authority to make all the decisions in the case, according to its communications director Joe Follick, who said Marie Freyre’s case had been “tragic and sad.”

“We want to do everything we can not to incur another tragedy,” he said. Follick said there needed to be a “broader education effort,” and parents, as well as health care providers, needed to know all options available for children in their custody.

“Everyone should know the goal is to keep children with their families, and that becomes the primary focus no matter how complicated the situation,” he said.

Florida’s Agency for Health Care Administration said both Tampa General and the Miami nursing home, then the Florida Club Care Center and now renamed Golden Glades Nursing and Rehabilitation Center — were investigated in july 2016.

“We did find immediate jeopardy at both facilities,” said AHCA spokesman Shelisha Coleman. “Findings of immediate jeopardy carry the highest penalty under the federal survey program.”

Tampa General was cited for “discharge planning” and was given 23 days to address the violation or risk losing its public funding. AHCA said the hospital addressed those issues. It was also fined $5,000.

Florida Club was cited with 84 pages of violations including neglect, pharmaceutical services and “responsibilities of the medical director.”

Alex Camacho, administrator at Golden Glades, twice, did not return ABCNews.com’s calls seeking comment.

Parents with disabilities are more likely to lose custody of their children after divorce, have more difficulty in accessing reproductive health care and face significant barriers to adopting children, according to the national report.

The report said women with disabilities still face “coercive tactics designed to encourage sterilization or abortion because they are not deemed fit for motherhood.”

Powell, the attorney for the National Council on Disability, uses a power wheelchair for a disabling condition called arthrogryposis, which affects her muscles and joints and gives her limited use of her arms but not her legs.

She is 31 and single and said that her doctors ask her “more times than I can count” if she would consider a hysterectomy.

“I had a doctor’s appointment this morning and was asked again,” she said. “I probably will have children sooner or later, and they were taken aback again. There is no medical reason not to. I am very healthy — my disability is solely physical.”

She would likely need an adaptive crib and changing table, and either a nanny or personal assistant, otherwise, Powell said, “I have no doubt I would be a great mother. We know parents are so much more than being able to change a diaper.”

Disabled Parents More Apt to Lose Children

The National Council on Disability released in October a tool kit that helps states find ways to close nursing homes and other institutions that care for children like Marie Freyre because of both “harm and cost,” said Powell. “We know it is cheaper to provide, and children should live with their parents.”

“Support you are talking about is typically temporary or intermittent,” she said. “After the first two or three years, you don’t need it anymore. The kids are up and walking.”

As for Doris Freyre, she said her whole life revolved around her daughter and it was taken away.

“It was unbelievable — she took care of her for 14 years,” said Freyre’s friend Marissa Vasquez. “She was good mother, a special mother. God knows who to give kids like this to.”

Freyre said she made sure her daughter got outside each day, home schooled her and even took her to physical therapy and swimming lessons.

The girl was not able to talk, but could gesture. “She was very intelligent, and knew all her surroundings,” said Freyre. “She understood perfectly when you talked to her.”

Freyre said she complained to authorities that being on a stretcher for five hours would hurt Marie, who had two dislocated hips. She also worried about hydrating the girl so she did not seizure.

“I knew what would happen to her,” she said. “First, when she stopped her seizure medications, she would go into a tantrum in that heated condition. She would start screaming and they wouldn’t know how to deal with her — she would be crying all night.”

“I loved my daughter with all my heart,” Freyre said. “She had a horrible, horrible death.”

‘I have cerebral palsy and I enjoy Life’ Must Watch n Read

Even though Colin Wright was born with cerebral palsy, it hasn’t stopped the 60-year-old from having sexual encounters. Rachel, a sex worker who regularly sees Colin, believes everyone has a right to have sex, no matter their disability. (We recommend watching the video in full screen)

I came from a family who didn’t talk about sex. So when I went to work and heard the others talking about it and how good they felt afterwards I began wondering what the big deal was. I had just been accepted into the Attendant Care Pilot Project. This gave people with disabilities complete control over who helped them and what time they wanted their help with their daily needs without relying on family members or organisations such as Home Care telling them times and what staff would be coming.

I was lucky because I’d only had to rely on family members apart from when staying with the organisation to give my family a rest.

It was a real culture shock to ask perfect strangers to perform personal care on me to begin with but there was a lady who I felt close to so, one day, while we were alone I asked Kerry if she would organise for me to visit a lady. To my surprise, straight away, she said ‘yes’. I thought she would have needed time to think about it.

“As she climbed on top of me a warm tingling sensation went through my body. I gathered this is what sex felt.”

Unfortunately, just when we had organised a date Kerry was involved in a car accident which put her off work for a few months. As soon as she returned to work, Kerry reasured me she hadn’t forgotten and said she’d organise something when her shoulder felt better.

It was around the time of the first reported case of AIDS when Kerry asked me to her place for Christmas drinks. She put me in her car and began driving towards Parramatta. It had become dark when we stopped. Kerry put my wheelchair beside the car and when I stood up, she pushed it behind me so I could sit down. She began pulling my wheelchair backwards through a car park and I didn’t think anything of it until Kerry pushed me alongside a bed.

Before long I was laying on it in the nude. A voice came from behind a screen telling Kerry ‘you can leave his shirt on’, but it was too late. As Kerry closed the door behind her a lady appeared at the foot of the bed. She was only wearing a see-through nightie which she slipped off as she lay beside me. She started playing with me in a way I hadn’t been played with before. As she climbed on top of me a warm tingling sensation went through my body. I gathered this is what sex felt like because I didn’t want it to stop. All too soon a knock came on the door. Time was up but if I had my way I would have stayed.

On the way home Kerry kept asking me questions. I couldn’t wait until I had another chance. It was a long time.

As Kerry left to get married, it was a few years before I found a carer who I felt comfortable in asking to help me find someone. Clare began working for me and was very honest about her past. She was no angel but had settled down with a family after being a wild girl. I asked her to help me.

At the time I was still living with my parents but they played bowls every Sunday afternoon which gave us an opportunity. But it was a Saturday night when my parents had to go out. They didn’t want me left alone for so long and organised for Clare to stay with me. A few days earlier I heard Dad talking about a brothel which had just opened in the main street and when I told Clare after bathing, feeding and sharing a joint with me she pushed me down there.

“She said she had a few clients with disabilities and would be glad to help me out.”

When we arrived it wasn’t wheelchair accessible and in spite of me living so close they wouldn’t send anyone to visit me. Clare made a few phone calls when we arrived home and eventually there was someone prepared to visit me. After another joint, Clare undressed and put me into bed, all ready for my visitor. As we lived in a dog leg Clare waited outside so the lady wouldn’t miss the street. It wasn’t long before Clare showed the visitor into my room and it didn’t take her long to get undressed and climb on top of me. Clare asked her as she was leaving if she took private bookings she said she had a few clients with disabilities and would be glad to help me out.

I saw her a few times before she started a family.

I then became involved in a relationship for six months and of course during this time I didn’t worry about looking for anyone else but after getting over being dumped I began looking again. By this time the organisation had introduced policies preventing staff from helping us access sex services but this didn’t stop some from helping. I moved into a house with around-the-clock care and some staff would take me to a brothel and undress me before leaving me and having a drink with the other workers.

As staff changed nobody felt comfortable in taking me to a brothel but [they] would make a phone call and leave me ready in bed.

There were two occasions which I’d rather forget: a lady visitor didn’t know what to do, she had to be told everything by me; and there was a lady who, once she saw I had a disability, wouldn’t have anything to do with me in spite of being paid. My carers tried to get my money back without success.

Following this my house manager contacted Touching Base, which is an advisory organisation for people with disabilities and now I’m seeing the same lady regularly.

 

15 Things You Didn’t Know Cerebral Palsy (Famous Personalities With Disability And 5 Possible Cause )

Cerebral Palsy: 15 Things You Didn’t Know

Any issue in Dictionary Please Forget I am New And Share Information 🙂

Cerebral palsy is a disorder that many people talk about but few understand. Despite the fact that the disorder has spent a considerable amount of time in the spotlight and under the scrutiny of the public eye, there are still some things that many people don’t know. With that in mind, here we present our list of 15 things you probably didn’t know about cerebral palsy. Well, what are you waiting for? Check it out for yourself below!

Number Fifteen: Cerebral Palsy Is Not a Disease

The proper term for it is a disorder. It’s not a birth defect and it’s definitely not contagious, either.

Number Fourteen: It’s More Common Than You Think

In fact, it’s the most common motor disability in children. Approximately three in every 1,000 children are diagnosed with the disorder.

Number Thirteen: There’s No One Right Way to Diagnose It

Despite the fact that it’s the most common motor disability in children, there is no one correct way to diagnose cerebral palsy. Most doctors are able to diagnose children by studying their movement, development, and speaking with parents.

Number Twelve: There Are Several Different Kinds

Most people think CP is one disorder; however, it’s actually a group of varying disorders. The most common kind of cerebral palsy is spastic CP, which involves the muscles being particularly stiff. Other types include ataxic CP, which causes problems related to coordination, and athetoid CP, which causes either slow movements or fast and jerky movements.

Number Eleven: It’s on a Continuum

Not every child diagnosed with the disorder will experience it to the same degree. While some people who have the disorder can walk perfectly fine and have perfect speech, others are confined to wheelchairs and struggle to form a single word.

Number Ten: It Affects All Muscle Groups

Most people might not think about this, but cerebral palsy can affect a person’s ability to swallow. All muscles related to motor control can be affected by the disorder.

Number Nine: It Can Change Over Time

Even if a child is diagnosed with the disorder, the disorder itself isn’t immutable. The severity often changes as a child grows – it can either improve or worsen. The disorder also changes depending on weather and mood.

Number Eight: There’s No Cure

Despite its prevalence, there is no known cure for CP. Very little research has been done, and this is likely due to funding issues.

Number Seven: It Doesn’t Affect a Child’s Personality

Many people might see a child with CP and assume his or her personality has been subdued because of it. However, this isn’t the case at all! Children with CP have vibrant personalities – it’s only their physical exterior that has been disabled.

Number Six: People With CP Don’t Want a Pity Party

It’s easy to look at a young child with CP and feel sorry, but parents of children with CP would rather you take that pity party elsewhere. Kids with cerebral palsy face marked challenges, yes, but it’s a part of who they are and helps them build character

Number Five: It Can Take Years to Diagnose

This is quite exceptional, but some people don’t know they have cerebral palsy until they’re as old as 13. However, if a 13-year-old has it and doesn’t know it, chances are he or she is on the low end of the symptom spectrum.

Number Four: It’s a Sexist Disorder

More males are diagnosed with the disorder than females, and to quite a significant degree. For every 100 females diagnosed, 135 males are diagnosed.

Number Three: Many People With CP Were Born Prematurely

It’s no secret that babies born prematurely are vulnerable to a host of extra issues, but this is quite shocking. Incredibly, half of all people diagnosed with the disorder were born prematurely.

Number Two: More People Are Being Diagnosed Every Day

This is sad but true. Every year, more and more people are diagnosed with the often debilitating disorder. More and more treatments are being developed every year to combat the disorder as well.

Number One: People With CP Are Generally Really Smart

An impressive 60 percent of people with CP have normal or above average intelligence. We hope you enjoyed our list of 15 things you didn’t know about cerebral palsy!

Cerebral Palsy: 7 Famous People Who Have It

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Cerebral palsy is a disorder that affects the muscles, motion, and motor skills. The disorder is most commonly caused by brain damage. CP affects about three out of every 1000 births, and at this time, there is no known cure. The effects range from a mild limp to severe speech and movement issues. Here are some famous people with CP.

Number Seven: Josh Blue

Josh Blue is a stand-up comic from the USA. The star uses his self-deprecating humor, and challenges people to get over pre-conceived notions about people with CP.

 

Number Six: Abbey Nicole Curran

Curran made history when she became the very first Miss USA participant with a disability in ’08. She also started something called the Miss You Can Do It Pageant for girls with special needs, using her status to give back and help others.

 

Number Five: Bonner Paddock and Cerebral Palsy

Bonner Paddock wasn’t diagnosed until he was 11 years old, and up until then, played sports as if he didn’t even possess physical limitations. This impressive man was the first person with cerebral palsy to reach the summit of Mt. Kilimanjaro without help.

 

Number Four: Dan Keplinger

This man is an artist, as well as a motivational speaker. He developed the disability due to complications with his birth. His artwork has been shown in a few different galleries across America.

 

Number Three: Geri Jewell

Geri Jewell is an actress, comic, writer, and public speaker who has won national recognition. This was for being the first individual with cerebral palsy to be cast in a TV series.

 

Number Two: Christy Brown

This impressive man was a painter, poet and author born in Ireland. He had a severe case of palsy. With the help of his mom, he eventually learned how to read, write, and talk. He wrote an autobiography and had a film made about him.

 

Number One: RJ Mitte

We all know this guy from Breaking Bad. His career with acting began in 2006 when he moved to LA. Here, he started working with a talent agent with hopes of spreading awareness about CP. Thanks for reading our list, and we hope you enjoyed it.

Cerebral Palsy: Top 5 Possible Causes of the Disorder

Cerebral palsy is a general title used to define a group of chronic disorders. These “palsies” inhibit a person’s control over their own movement as a result of brain damage. This typically happens as the brain is still developing. Cerebral palsy typically develops and becomes apparent by toddlerhood. This is a nonprogressivedisorder, which means that the damage present in the brain does not get worse as the person grows older. Regardless of this, the symptoms associated with the damage have a tendency to change as time progresses. At times, they get better, and others they get worse. It’s one of the more common causes of disabilities in children. Here are some of the five common causes of this disorder.

Number Five: A Mother Experiencing Infection During Pregnancy

An expecting mother having an infection while she is pregnant increases the risk for damage to the child’s unformed nervous system. This could be anything from rubella to cytomegalovirus (similar to the herpes virus) or infections caused by parasites. Unfortunately, many of these types of infections go undetected.

Number Four: Infant Jaundice Can Cause Cerebral Palsy

Jaundice is a sickness that is caused by an overabundance of bilirubin in the bloodstream. The job of the liver is to filter this out. Many times, infants’ livers do not do this effectively right from birth, making jaundice quite common for newborns in the days after birth. In the majority of cases, a specific type of light therapy will clear this up, leaving no detrimental effects. In rare or untreated cases, however, this sickness can cause damage to the brain.

Number Three: Rh Incompatibility

Sometimes, a new mother and her baby share differing Rh types, leading the mother’s body to attempt to destroy the developing fetus’s blood cells. This can lead to a type of jaundice and in serious cases damage to the brain and CP.

Number Two: Traumatic Birth

Some births are physically and metabolically traumatizing for the baby, at times including head trauma. This can lead to damage to the brain of the fetus.

Number One: Oxygen Deprivation

Oxygen deprivation is possible during labor, which can cause cerebral palsy. Thanks for reading.

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NJ Girl Doesn’t Let Cerebral Palsy Keep Her From Love Of Playing Basketball

RAMSEY, N.J. (CBSNewYork) — Skill, determination and a special operation are helping an 11-year-old girl succeed on the basketball court.

“I feel like I have to impress everybody and I feel like I have to work harder than everybody else,” said 11-year-old Marina Pellicciari, who suffers from cerebral palsy.

Hard work is nothing new Marina, especially at her favorite place: the basketball court, CBS2’s Steve Overmyer reported.

“(Overmyer: Why do you love this so much?) It’s my passion and I have so much fun doing it,” Marina said.

Marina Pellicciari doesn't let Cerebral palsy stop her from playing basketball (Credit: Handout/CBS2)

Because of her cerebral palsy, Marina’s muscles sometimes tighten when they should relax, which is very painful.

So in an effort to help Marina, pediatric neurosurgeon Dr. Richard Anderson targeted certain nerves at the spinal cord and cut them, Overmyer reported.

“By cutting some spastic nerve roots, then it restores a more normal balance to the stimulation and inhibitory pathways that happen around the spinal cord,” Anderson said.

And now, Marina can play in a way that was previously impossible: pain-free.

“I used to have pain like almost every other day, and now I barely have any pain,” she said.

Marina is a ferocious defender on the court and highly competitive, Overmyer reported.

“You have to be competitive, you have to be willing, you have to be I guess eager to do it because you can’t just sit around all day and do nothing,” she said. “You also have to be motivated because if you’re not motivated then you really can’t do anything.”

Marina said she models her game after her favorite player, Kobe Bryant. Next month, she’ll fly to Los Angeles to watch him play before he retires.

My Daughter Has Cerebral Palsy—and I Refuse to Sugarcoat How Hard It Is

Aimee Christian is the mother of Thora, 5, and Freyja, 3. Her blog,Teeny and the Bee, chronicles family life and parenting issues involving Freyja, who has cerebral palsy. She is candid about the difficulties of raising a child with special needs and explains here why she is unwilling to sugarcoat her experience.Right away, I knew something was different about my second daughter, Freyja. My first daughter, Thora hit all of her milestones on time—or early. Everyone told me that wouldn’t be the case with my second child, but I knew something wasn’t right. She slept so soundly and for so long that I’d have to rouse her to nurse. She started getting sores under her arms because they were hanging limp from lack of muscle tone and no air was getting into the area. My husband and I kept asking her doctors and all of our friends what could be wrong, and everyone dismissed our concerns. They saw this happy, giggling, smiling baby and just reminded us that all babies develop at their own pace. Her consistently cheerful personality was all anyone wanted to see.

Every specialist said, “Oh, she’s fine!” Or, “Eh, she’s just a little behind!” But when she was seven or eight months old, our pediatrician finally relented and suggested we start evaluations of her motor skills, reflexes, strength, flexibility, coordination, and more. They noted some neurological red flags and suggested an MRI, just to rule things out.

Freyja’s MRI was the second-worst day of my life. Trying to get a 14-month-old to lie still in a scary, whooshing metal tube is next to impossible. Doctors sedated her once and then had to do it again because she was still struggling. A week later brought the actual worst day of my life, as a cold neurologist blandly read the results off a piece of paper. Freyja’s brain had a number of malformations, particularly in the cerebellum and pons—or the brain stem. She was diagnosed with diplegic cerebral palsy.

I felt a momentary stab of something like vindication—my intuition had told me something was wrong—but that was quickly replaced by sadness and fear. Not to mention rage that our doctors had wasted a full year of her life when she could have been in treatment.

My husband and I looked at each other, and we were like, “This is going to suck.” I had some really ugly thoughts. Could I really love this child? But of course, I already did. It took me a long time to grasp that I can love her and hate her disability. She is the best thing that ever happened to me, and her disability is the worst. A diagnosis was a positive development because it allowed us to move forward with treatment. We had a course of action. We didn’t have the luxury of letting ourselves fall apart. The type A control freak in me said, “Okay. We have some work to do.”

“I felt a momentary stab of something like vindication—my intuition had told me something was wrong—but that was quickly replaced by sadness and fear.”

As we began to tell our friends, family, and coworkers about Freyja’s condition, people kept saying, “Wow, you’re so strong. I couldn’t handle that.” I never understand this response. What choice did I have? Our role as parents is to prepare both of our children for the world. That process of preparation will just differ for them.

PHOTOGRAPH COURTESY OF AIMEE CHRISTIAN

I’m not like some other mothers of special-needs children. I don’t believe that everything happens for a reason. I don’t believe that my daughter is an angel sent from heaven to teach my family and me humility. The truth is, my daughter isn’t differently abled. She’s disabled. Life will be challenging for her in ways I can’t even grasp yet. If I could take this struggle away from her, I would. But the reality is I can’t. I know life will be frustrating for her.

“Our role as parents is to prepare both of our children for the world. That process of preparation will just differ for them.”

At this point, Freyja can play with the other kids. She doesn’t need a full-time nurse, and in a few years, she will be attending kindergarten. She can take steps with the help of her bright purple walker. Her doctors say her prognosis is “cautiously optimistic,” and while that’s very nice, I hatenot knowing what her future will hold. Will Freyja finish high school? Go to college? Get a real job? Will she ever be able to live completely on her own or fall in love and have a family? She’s still only 3 years old, so we can plan a few months or years into the future at most. I don’t know if she’ll get to have a job or a spouse, but a friend pointed out that I can’t predict that for Thora, either. That’s pretty much how parenting works.

Of all the stresses of Freyja’s health—the twice-weekly physical therapy sessions, the monthly appointments with specialists, the bills that come along with those appointments, the research of every single building for handicapped access—one anxiety in particular hangs over my head: What is going to happen when I die? I worry about where she will live. I worry that she won’t have an advocate. I worry that my older daughter could be stuck in the role of caretaker forever. Thora automatically helps her sister already, opening her markers and fetching her dolls when they’re out of reach, but I don’t want her to feel stuck with this job. That wouldn’t be fair to her.

Thankfully, my freight train of concerns and anxieties halts when this amazing kid looks at me. I love her so much. She has such a wonderfully explosive personality. She routinely walks up to strangers and starts conversations, happily sharing her own name, age, birthday, and whatever is going on in her day—and then she asks for a hug. It is so fun seeing the world through her eyes. She makes me laugh every single day, sometimes every hour. She recently broke her arm and has a purple cast to match her purple walker. If people ask about it, she says, “I fell down and went BOOM!”

PHOTOGRAPH COURTESY OF AIMEE CHRISTIAN

I find myself worrying, “Is she happy? Will she have a happy life?” And then I realize—Oh wait, she’s completely happy. That’s what gives me the energy for the next day. It’s worth it. She’s just totally worth it.