Category Archives: Cerebral Palsy

The alarm clock sounds, waking you from your peaceful sleep. You wonder why the alarm went off so early. Then you realize this is the day to return to school after a summer that seemed to go by exceptionally fast. You hear a knock at the door and a parent comes into your room to help you get dressed. Your thoughts race about the normal back-to-school things, but you also wonder if your peers will accept you this year and how your teachers will react. This is a typical first day of school for a student who has a disability. I was that student, the only one who had a significant disability in school. Although not all of my school experiences were bad, there are some things I wish I knew then that I know now. School is a temporary, but necessary, journey for someone who has a disability. The better educated you are, the easier time youll have as an adult. So, no matter what happens in school, try your absolute best to earn great grades and learn. Not all teachers will welcome you with open arms into their classroom. Hopefully, nowadays, more teachers are open to and educated … Continue reading →

A new international research group has been established to investigate the underlying genetic causes of cerebral palsy, spurred on by the discoveries of University of Adelaide researchers. The news comes as the Adelaide team behind the new collaboration has been awarded a $1 million grant to continue its groundbreaking work, from The Tenix and Cerebral Palsy Foundations. The newly established International Cerebral Palsy Genomics Consortium includes members from universities in China, Canada, USA, Sweden, Turkey, and Australia. The new consortium has grown from the research leadership of Emeritus Professor Alastair MacLennan, AO, and Professor Jozef Gecz, based in the University of Adelaides Robinson Research Institute. Professors MacLennan and Gecz and their Australian Cerebral Palsy Research Group have led the field internationally in showing that cerebral palsy is often linked to a genetic susceptibility. For decades, it has been the belief that cerebral palsy occurs when a child experiences a lack of oxygen during pregnancy or at birth. However, the evidence shows that at least one in four cerebral palsy cases is associated with genetic mutations, Emeritus Professor MacLennan says. The group has built up a large DNA biobank from cerebral palsy families linked to de-identified pregnancy details and cerebral palsy … Continue reading →

Its an ear-popping elevator ride thats sure to make lumps rise in the throats of some of the 65 people signed up to rappel 272 feet back down to Earth for charity. Allie Onslow is one of them. "Im excited but nervous," said Allie. Seated in a wheelchair with pink foam noodles taped to the sides and Hawaiian leis hanging from the handlebars, Allie who has cerebral palsy was ready to rappel in style. "When Allie was born she was three months premature and she weighed two pounds and five ounces," said her mom Wendy Onslow. "At the time we didnt know if she was going to walk or talk or anything, but Allie can definitely speak her mind and make choices. She can do some things for herself, but walking she cannot." It was Allies first time participating in Drop Zone, the fundraising event for the Society of Manitobans with Disabilities (SMD), but she's been involved with the organization for years as a client, volunteer and ambassador. "She always wanted to do it, and we told her when she turned 18 she could do it, so here we are," said her mom. After turning 18 last September, Allie and … Continue reading →

This was me, and it might be you. Monday to Friday with young kids, every day's a scramble. Wake them, help them get dressed, put out brekkie, skim-read the paper, clean up, brush teeth, rush out the door, into the car and off to childcare, then school, then arrive at work to take a deep breath. As my wife and I shepherded our kids through this frantic daily routine, we knew this wasn't what anyone would call "quality time". But at least we had the weekends to slow down and make it up to them (and to us). Then came an invitation to try something called Steptember. It's a fundraiser for the Cerebral Palsy Alliance that asks you to walk 10,000 steps every day for the month of September. It sounded easy enough, I said to myself. If I just used the furthest printer or loo at work and made an effort to walk up to the reporters at the far end of the newsroom instead of emailing, I'd get there surely? Well, not quite. That's good for 1000 or 2000 extra steps a day on the 3000 a typical office worker is estimated to take. To hit the 10k … Continue reading →

Often terminology that seemed perfectly appropriate for a period of time seems to be replaced by something more acceptable. Words and labels continue to evolve with changes that take place in our culture. For example, until recently, the word handicap was the word of choice to describe people with disabilities. As society has become more knowledgeable and these individuals more inclusive, it has been replaced with the word disability. However, the word disability doesnt even seem to fit someone like Jon Westling. If you look up the word disability you find it defined as a physical or mental condition that limits a persons movements, senses, or activities. Jon has a condition called cerebral palsy, often called CP. Cerebral palsy is an umbrella term that refers to a group of disorders affecting a persons ability to move. It is due to damage to the developing brain either during pregnancy or shortly after birth. Cerebral palsy affects people in different ways and can affect body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. Although cerebral palsy is a permanent life-long condition, some of these signs of cerebral palsy can improve or worsen over time, according to cerebralpalsy.org. In Jons … Continue reading →

INDIANAPOLIS He may have trouble walking due to his cerebral palsy and have to use a walker or crutches whenever he goes somewhere, but that doesnt stop Cooper Gretencord from showing sheep. It just means he has to show in a little different way. Gretencord, who is a seven-year 4-H member, said that he loves to show because of the competition and the opportunity he gets to make friends. 4-H has taught me responsibility, and it helps get me ready for life, he said. Although his cerebral palsy affects his body and ability to walk, Gretencord doesnt let that serve as an excuse to stop him from doing the activities that he wants to do. When showing sheep, another individual goes into the arena with him and serves as the dedicated setter throughout the course of the show, but Gretencord uses a halter on his sheep, so even though he has to take his walker into the show ring, he still can lead his sheep himself. Even though I have cerebral palsy, I enjoy playing sports and doing 4-H. If I had to choose, I would pick 4-H over sports, Gretencord said. His parents, Denny and Lisa Gretencord, encourage him … Continue reading →

If youve been reading this column awhile, you know Ive been talking about physical therapy for a long time. Weve talked about how powerful and beneficial it can be once you commit and check into the program. Weve discussed building meaningful relationships with physical therapists, and weve talked about how the therapists who have been most hard on us have been the ones who made us grow. But one thing I havent talked about yet is how to own your physical therapy and make your program really work for you. Admittedly, I have grown up with the phrase you have a say in your treatment options and plans for so long that by the time I was an adult and actually thought I could make decisions about the way my treatment plan was going, the words were like background noise. Since I started physical therapy at age 3, the routine of equipment and stretches has been predetermined and laid out. The only noticeable change in routine is, when you become an adult, the games you play to engage you in your stretches fall by the wayside, and its on you to motivate yourself. I struggled with internal motivation deeply when … Continue reading →

TAMPA Linda Bonck, a 90-pound Chamberlain High School senior with cerebral palsy, lived near Tampa's Lowry Park. She struggled to walk and talk but was known for being friendly and trusting of strangers until she vanished one day in 1992. Two teens, David Sheren and Georgia Miller, were sentenced to life in prison for beating and stabbing her to death. But Miller, now 39, will likely be set free within six years, courtesy of a series of U.S. and Florida Supreme Court decisions that in recent years have found it unconstitutional to give juveniles life sentences. Miller was resentenced Wednesday to 65 years, after her attorney struck a deal with prosecutors. But with credit for time served, plus gain time she accumulated under rules that were in place in 1992, her release date is pegged for March 2023. "I don't think it's good enough," said Bonck's father, Phil Golden, who was not present for the hearing, but heard about it afterward. "But I guess my input doesn't really matter. Life should be life. You should take your last breath in a jail cell." Sheren, Miller's teen boyfriend, still awaits resentencing. Miller said little as she stood beside Assistant Public Defender … Continue reading →

CANTON -- The United Cerebral Palsy Association of the North Country, Inc. is getting $124,840 from the U.S. Department of Health and Human Services (HHS) Health Resources and Services Administration (HRSA), according to a joint statement from senators Charles Schumer and Kirstin Gillibrand. The funds are rewards for health care centers who have exceeded or met quality standards and patient care goals, the release says. The funds will support increased access to comprehensive primary health care services and further invest in care, the senators said. These critical federal investments will enable 61 community health centers throughout New York State, including 26 centers in Upstate New York alone, to improve healthcare access for the local community, Schumer said in a prepared statement. Specifically, this investment will enable high-quality health centers to increase access to primary care services for New Yorkers and build upon their already successful work to improve patient care-quality and reduce health disparities across New York State. Not only will this funding further enhance New York State residents ability to access high-quality health care services, it will also support jobs for local area residents and health professionals, enriching regional economies across the state. This is great news for New … Continue reading →

Via Christina Smallwood Most people don't know if they can get pregnant until they actually try. I learned that the hard way. When my husband and I started to think about having a baby, we never imagined how difficult it could actually be. More than a year went by with no luck, and then, in December of 2012, tragedy hit our family. My dad was in a motorcycle accident and ended up in a coma for four weeks before passing away. To say that I was in shock both physically and emotionally is an understatement. Understandably, it was months before we had the strength to try and have a baby again. Before we knew it, March rolled around, and we finally decided to have our fertility evaluated. (Related: What Ob-Gyns Wish Women Knew About Their Fertility) The results came back a few weeks later, and the doctors informed me that my anti-Mllerian hormone level was super low, a common side-effect of taking Accutane, which I had taken as a teenager. Severely low levels of this crucial reproductive hormone also meant that I didn't have enough eggs in my ovaries, making it nearly impossible for me to conceive naturally. After taking … Continue reading →