A networking and information-sharing site for people who access cerebral palsy services and supports in NSW

Sunday, 6 May 2012

More apparent progress from the world of international CP research

Medication may be able to sharply alter the course of cerebral palsy, scientists in the US have announced after finding that animals with the developmental condition responded remarkably to a new treatment.
Within five days of being given an anti-inflammatory drug, researchers found that newborn rabbits with cerebral palsy made dramatic progress. The animals were able to walk and hop, tasks they’d had great difficulty with prior to the treatment.
The findings, reported in the journal Science Translational Medicine, offer tremendous promise for people with the developmental disability, researchers said.
“This suggests that there is a window of opportunity to prevent cerebral palsy,” said Roberto Romero, chief of the Perinatology Research Branch of the US National Institutes of Health and an author of the study.
For the study, researchers replicated in rabbits the brain inflammation often seen in people with cerebral palsy. They then used tiny molecules known as dendrimers to deliver an anti-inflammatory drug called N-acetyl-L-cysteine, or NAC, directly to the affected part of the brain.
The rabbits that received this treatment showed marked progress as compared to those who received saline or NAC alone without the targeted drug delivery, though benefits were seen in both groups that received medication.
“This is an exciting breakthrough and it certainly points toward new hope for those affected by cerebral palsy,” said Rangaramanujam Kannan, a chemical engineer at Wayne State University who worked on the study. “More questions need to be answered, but the potential is immense.”
Rabbits in the study were treated on their first day of life, so further research is needed to assess whether or not the benefits of the drug therapy may be seen in humans and how effective it might be when used beyond infancy, the researchers said.
In addition to cerebral palsy, researchers are also exploring the benefits of NAC for people with autism and Alzheimer’s disease.

Wednesday, 2 May 2012

"A disability support system not fit for a decent and civilised society"

Extract of article by Dr Elizabeth Manning, Economics lecturer, Deakin University, from The Conversation website, re the NDIS    -   2 May 2012
 Navigating life with a family member who has a disability is a series of crises. Some are inevitable: the diagnosis, any medical interventions, grief over the loss of child you expected to have. But the continuous struggle with “the system” to get even basic resources is far more crippling.
At times, it seems dignity and choice are a luxury not afforded by the current system. The personal toll in stress, marriage breakdown and mental illness can be immense. Add lost potential and employment difficulties and you have a system that’s not fit for a decent and civilised society.
My story
My daughter was born with cerebral palsy, a complication of a twin pregnancy. She was diagnosed at six months old; she’s now 15. She is extremely physically disabled, wheelchair-bound and doesn’t speak. She needs full assistance with eating, toileting, dressing, getting into bed, and so on.
She also understands everything you say, can independently drive her motorised wheelchair and uses her iPad better than I do! She has a wicked sense of humour and an engaging personality.
When she was first diagnosed, I didn’t even know what cerebral palsy was. My first need was for information. Then the list of requirements seemed to grow: support groups, early-intervention therapy and play groups, support at kinder and in school, equipment, respite and personal care, and eventually long-term accommodation.
Other than long-term accommodation, we’ve managed to fight our way through this list.
Our first major battle was for sufficient funding for kindergarten aides. We fought this with articles and photos in The Age, a petition, a rally, a brief appearance on TV and a radio interview. We eventually secured extra state government funding for families that followed us, but we were already past kinder by this time.
The school funding battle has been one we were destined not to win; we never achieved an appropriate level of funding, nor any rational explanation about how funding decisions were made.
After full integration in a mainstream school for most of her primary years, my daughter now has a joint placement with a mainstream high school (which she loves) and a special-needs school (due to physical issues that are increasingly difficult to manage).
Her mainstream experience has been made possible through the assistance of two wonderful aides and there have been many positives – the greatest of which is her acceptance in her community.
We still, however, struggle with issues of curriculum: there is a huge difference in what is expected of her in the two different school settings and we’re unsure how she can best be assisted in her learning. After more than ten years of school, we haven’t been able to find an answer.
Funding for equipment has been a major issue. Specialised equipment is essential for many people with a disability. My daughter needs or has needed expensive equipment to help her sit, get about (in a motorised wheelchair), stand, shower, walk, exercise and communicate. This expense is only partly covered by government schemes which come with long waiting lists and rules about where the items can be purchased (which often results in higher prices).
The funding gap for my husband and I amounted to more than $125,000 over ten or so years. Although we have contributed a lot ourselves, we have also had to rely on assistance from community organisations. We’re grateful for the support, but also felt humiliated at the loss of privacy. Eventually, we became immune to issues of dignity.
More recently, we’ve been battling funding for personal care assistance. We rely on help in the morning to be able to get the children to school and us to work on time. In the evening, carers come in to shower our daughter, allowing us some time with our three sons and the chance to do homework and get dinner on the table.
Two carers are required to transfer, dress and shower my daughter. Although these needs have been assessed, documented and accepted, there is no ongoing funding for her support package; we’ve twice had to go to crisis meetings to ask for emergency funding so our lives don’t grind to a halt. This is very stressful and time-consuming.
The bare necessities for us are currently funded until June, with no certainty after that. Extras, including support to allow my daughter to go out on weekends with friends, aren’t included, other than a small amount for respite funding. Her choices are therefore curtailed.
Add multiple operations and numerous medical appointments 90 minutes away and you’ll understand why I feel like I need a little sign that tells providers, “if I seem angry, please try and understand what has come before.”
Themes in our journey have been stress, exhaustion, lack of choice and an uncertain future. All of these are avoidable with a coordinated, individual-centred and properly resourced approach. Everything we’ve needed was predictable. We’ve fought for reasonable access to and inclusion in society.
People over the years have asked us how we manage, how we can keep doing it all. To ourselves, we always answer: how could we not?
But ours is not the typical outcome. We’re still married and still have jobs. We’re not poor. We’ve been able to provide opportunities and experiences for all of our children. We’ve managed, to a reasonable extent, to somehow get what’s needed for our daughter. Most people cannot. The Productivity Commission report bears this out.
All of what we have fought for so far pales into insignificance against the issue of a reasonable transition into supported long-term accommodation for our daughter when the time is right. This just doesn’t exist at the moment.
Under the NDIS, the cost burden faced by individuals living with a disability and their families could be spread thinly across the entire population. Everyone would then effectively be insured against some of the financial burden of unexpectedly acquiring a significant disability.
I hope next week’s budget delivers for families like mine who are counting on a properly funded and well-structured NDIS.

Monday, 16 April 2012

More evidence of why educationally based rather than therapy-based methods of early intervention are beneficial for children with cerebral palsy and other forms of brain injury

From ABC News Online -
Neuroscientist and teacher Dr Judy Willis and developmental psychologist Kimberly Schonert-Reichl speak to News Online about neuroplasticity, the importance of the first years of brain development, and the impacts of stress and disadvantage on childrens' brains.
What does the term neuroplasticity refer to?
JW: What we used to believe is that most of the conditions that affected the brain caused permanent damage. We believed some of it would be permanent and some of it would get better, but we didn't really know why.
But it turns out what happens is when the brain doesn't get enough of what it needs, or is damaged, it regrows. But what doesn't regrow are the neurons - the brain cells that actually hold the information.
Throughout life we lose them, and that's absolutely fine because what neuroplasticity is, is the amazing ability of the brain to change, to regrow, to re-organise and to find alternative routes of reviving a function that either was never there, or was damaged.
Neuroplasticity is the brain's ability to rewire the connections between neurons to give us almost limitless potential to improve from whatever state we start in.

What effect does disadvantage or a lack of stimulation have on children's brains?
JW: Kids who have had socioeconomic limits because of the type of environment they've had, whether it's high stress or whether it's inadequate stimulation, their brains will definitely show differences when you first see them.
There will be less white matter - grey matter is the neurons, and the rest of the brain structure is white matter, the connections around the neurons And we'll see in children who have been deprived that there is a decrease in white matter. And we'll see, with intervention, the white matter get more plentiful and their mental functions become better and better.

What are the benefits of intervening early in children who are at risk?
The rate neuroplasticity can work is slower in someone who has less material to work with, but I don't believe it's impossible. I know for a fact that we have not found any limits in the human brain to become better with motivation and mental guidance by someone.
But the rate of improvement will be much faster the earlier you intervene, and it will be taking advantage of the brain's natural more rapid development the younger someone is.
The person has to want to practice, and send electricity through the right neural pathways, and so the more they experience failure, and recognise they're not as good and as smart as other kids, the harder it is.
Emotional resilience is really challenged when a child realises some things are coming easier to others, and for them the progress is really slow. So the later the intervention, the slower the improvement, the longer the catch-up will be and it takes an enormous motivation in a child to work through that. It's so hard as a child to face abilities others have that you don't have, and to believe you can get them.
When I first started doing the research I have to say I was very sceptical because I was not that familiar with mindfulness-based approaches, but I was so fascinated by the number of kids who not only said they liked it but said they used the skills that they learned to teach it to other people.

And it's like anything, when you learn something that you think is really cool and helpful you want to teach it those you love.

The research certainly on young children's development, particularly social and emotional development, we actually find that if you want to predict success in school early on, it's actually the social and emotional wellbeing of children and their own competence and how they're able to manage their own emotions that predicts their success in life.Mind Up is really about helping attention, and what happens in the brain is by focussing the attention is they're really developing their executive functions which are really self-regulation.

Also in this series
  • Reshaping young minds: The latest neuroscience research is causing a major rethink of pre-school education.
  • Science in action: See how one early years centre is applying the science of neural development to early education.
  • Q&A: What is neuroplasticity?: What does the latest research into how the brain develops tell us, and why does it matter?

Tuesday, 3 April 2012

From today's Melbourne Age newspaper


The CPCFF notes that this research was funded and carried out by one of Australia's internationally renowned and long-established medical research institutes -  further evidence that there is actually no need for any State-based cerebral  palsy service provider to be getting involved in funding medical research into the causes and cure of cerebral palsy, and certainly no validity in any rationale for doing so along the lines of "But we have to, because no one else is".



Tuesday, 27 March 2012

From a Global Mail story about Australia's current disability care and support system, entitled "Hidden In Plain Sight":

"French-born Emmanuel Boumard, whose son Gabriel was born with cerebral palsy and displays autistic traits, has been battling the system for the 16 years of his son's life.
"I want to scream. You have to demand — or not so much demand, but ask — so many times until you get something, say speech or occupational therapy,  that you give up with the system," he says.
"There was an incident three years back. We applied for, I think it was OT [occupational therapy] and we forgot about it. And two years later, we got a call saying, 'You've reached the top of the queue. You're entitled to services.' We didn't even remember we had applied!"
Cleary, Gabriel couldn't wait years for occupational therapy. "We went privately, sometimes from our own pocket, because we couldn't wait," he says.
"It is very difficult to find your way. You give up. You give up [on the system]. You don't want to deal with anyone because you get frustrated. How can it be changed? I don't know. It's a vicious cycle.'"

Sunday, 25 March 2012

The human brain, people say, is the most complex thing in the universe. But its complexity is nothing next to that of the human mind.  
Bryan Appleyard, 2009

Saturday, 24 March 2012

There were two wonderful articles in the SMH's Good Weekend Magazine of March 17.
The first, by Fiona Harari, entitled "The Here and Now"  (click here to read -  THE HERE AND NOW) describes the experiences, feelings and thoughts of parents coping with the knowledge that their children have life-limiting illnesses and severe disabilities.
The emotion that shines through this article is love; profound love between parent and child. Not the pointless, futile, desparing and agitated wish that their children had never been born, or that medical science could somehow find some miracle "cure" and save their children's lives, but what Harari describes as "a very spiritual bond. Their love for their child and their child's ability to survive against the odds is their inspiration. It's the thing that keeps them going". 
Harari writes of a mother called Yvette Pieri, whose 16-year-old son Adam died five days after she was intervewed for this article, and who told Harari: "I think the love he gives me keeps me going".
Harari goes on to write that Yvette Pieri's response "tells of an extraordinary bond that transcends her son's inability to speak. In families such as Yvette's, where you might expect to see darkness there is also laughter, intense love and a defining sense of proportion... Mostly, what worries parents like Pieri is that their children are in pain. Underlying everything they do - as they battle social and medical services, a lack of transport, frequent isolation and strained finances - is an overwhelming need to keep their sons and daughters as comfortable as they can."
I think many, many parents of children, teenagers and adults with disabilities would identify and agree with that observation.
A palliative care nurse also interviewed for this article said: "The most humbling, spiritual moments of my life have come through my work. We get to see the extraordinary nature of people and the extraordinary power of parental love every day".

Meanwhile, there was another inspiring article by Janet Hawley, entitled "How To Rewire A Brain" (at How To Rewire a Brain) featuring an extensive interview with a Canadian woman called Barbara Arrowsmith-Young who instinctively realised, several decades before the vast majority of doctors and medical scientists, that brain injury and damage can be overcome by intensive brain exercise (otherwise known as "learning"). 
Hawley writes: "Without realising it, Arrowsmith-Young was utilising the principles of neuroplasticity, at the same time that scientists were only beginning experiments in this field. Previously, science had contended that the brain is hardwired at birth. This view of the unchangeable brain has since been overturned by numerous clinical trials that show mental exercise and mental experience can alter its structure."
Yet more evidence that education and learning-based intervention methods like Conductive Education, developed in Hungary around 70 years ago now by a rehab physician, Professor Andras Peto, have been on the right track all along, and that the gloomy, medical-model approach to disabilities of neurological origin like cerebral palsy - resulting in children being written off in effect, strapped into wheelchairs from the age of three or four, surrounded by mechanical aids and offered only token therapy form then on, has been on completely the wrong track.
Funny, isn't it, how so many medical-model, allied health professionals like physios and OTs have thought of themselves for decades as part of the solution, when in actual fact they were part of the problem all along?
Umm, yes, totally hysterical.

Sue O'Reilly