I have a condition called (SHCP).
I got SHCP when I was 10 days old (27.12.10) when I had a bleeding to the right side of my brain so my CP affects the left side of my body.
My CP isn’t that bad as most cases where the person can’t walk, talk etc. So I am quite lucky, but it still affects me.
Sadly there is no cure for CP but it can be made stronger. The treatments I use every day and every night are my AFO’s (or splints). I wear them every day at school for 6 hours to get a good stretch and I also wear them at night to still get that good stretch but when I’m fast asleep. I don’t like wearing my splints at school because people always ask: ‘Why do you get to wear trainers?’ or ‘What is that thing on your leg?’
I also have to have cereal castings 3 times a year for 3 weeks which helps to get a good stretch and to help get my foot into a 90 degree angle.
Then, there are the Botox injections; they help relax the muscles in my leg. They hurt but I don’t mind going through pain if it is going to help me.
Then there are the moments of my life I have been dreading- the operations. I have been told many times by my friends and family that if I do have the operations that I be fine and safe and that the doctors know what they’re doing, but I’m scared of having operations because: I have a BIG fear of hospitals- I hate them! If the operation that I’ll need in the next year or so doesn’t work, it will have to be done again which I’m not going trough twice- no way. I would be in a cast for 6 weeks and using crutches (most people would think that is a good thing but I can’t use crutches and my leg would feel weird).There are so many other reasons but if I wrote them all down I would be here forever.
At my high school I am the only person with CP- scary? Yes! At school, I would have to say P.E. is my hardest subject because my CP lets me down, I’m slow at running, last in every race etc. In races when I hear times being called out before mine, they are usually very fast. When I ask my friends what they got it will be something along the lines of 15/16 seconds for the 100 meters and I got 26 seconds. It makes me feel angry and I feel like I want to just give up.
21 August 2010
11 August 2010
Neurological physiotherapy Using neurological physiotherapy to address deeper issues
Neurological damage, while often debilitating, does not necessarily mean the end of a person's independence. And as the population ages the number of people living with these conditions is on the rise. However, treatments for the likes of Alzheimer's and Parkinson's are getting more research funding thrown at them, which is why treatments, such as neurological physiotherapy are also on the increase.
Neurological damage does not have to be a progressive problem that results in a steady deterioration of mobility and motor function over time. It can come about as the result of a one-off event - such as a stroke or severe head trauma. So treating the resultant symptoms with neurological physiotherapy can be a hugely varied process. Reduced mobility or chronic pain can often be ongoing problems - particularly if the neurological damage was sudden, as is the case in stroke patients.
Fortunately, neurological physiotherapy is a versatile treatment and can be tailored to benefit patients with any number of neurological disorders, including both young and old sufferers. So, while nerve damage can often set people back physically, neurological physiotherapy can help maintain patients' levels of physical activity and quality of life.
What can neurological physiotherapy specialists offer?
There are a huge variety of neurological conditions that can impact on people during their lifetimes - such as Parkinson's, Alzheimer's, Cerebral Palsy and muscular dystrophy. And the way these conditions manifest themselves can be different from patient to patient. As a result, neurological physiotherapy programmes are equally varied.
Ongoing neurological rehabilitation programmes generally start with a thorough assessment of a person's neurological health. Trained neurological physiotherapists will be able to assess a condition on a symptomatic basis - taking account of which aspects of mobility are affected. Muscle strength and general physical fitness will also be monitored.
After all underlying problems and symptoms have been identified, a tailored neurological physiotherapy programme can be created. This will revolve around muscle strengthening, stretching, balance activities and postural awareness. Depending on the problems being remedied, walking exercises and respiratory techniques may also be incorporated in the neurological physiotherapy programme.
What does a neurological physiotherapy programme involve?
As mentioned above, neurological physiotherapy programmes are tailored to each individual and are generally used to address specific mobility or muscle problems. This means a neurological therapy programme can incorporate any number of individual exercises.
In terms of boosting muscle strength and physical endurance, simple stretching exercises, weight bearing training and a steady, graded exercise routine can help boost fitness over time. The key to muscle strengthening - particularly among people who have reduced muscle control - is a simple, consistent and long-standing exercise programme.
Depending on the severity of an individual's problems, the neurological physiotherapy programme may be hugely simplified and involve simple standing and sitting exercises. Some patients receive gait re-education, allowing them to regain their mobility and independence.
With other neurological conditions, muscle strength is not necessarily impacted upon, but range of movement and stability is. Often, treatments dealing with these issues revolve around balance and coordination exercises.
There is also an emphasis on sensory treatments in some neurological physiotherapy programmes, which can include hot and cold treatments and surroundings awareness programmes.
The key to successful neurological physiotherapy
The secret to successful neurological physiotherapy programmes is an accurate and thorough initial assessment. Identifying problem areas that can be effectively targeted with tailored treatment is a must. Once a clear evaluation has been conducted then a unique exercise regime can be created.
One of the other key aspects of neurological physiotherapy is ensuring their regularity. Regaining motor control and boosting muscle strength is a timely process that requires a lot of commitment - from both patients and their physiotherapists. But the outward benefits of neurological physiotherapy make this commitment much easier to maintain.
Neurological damage does not have to be a progressive problem that results in a steady deterioration of mobility and motor function over time. It can come about as the result of a one-off event - such as a stroke or severe head trauma. So treating the resultant symptoms with neurological physiotherapy can be a hugely varied process. Reduced mobility or chronic pain can often be ongoing problems - particularly if the neurological damage was sudden, as is the case in stroke patients.
Fortunately, neurological physiotherapy is a versatile treatment and can be tailored to benefit patients with any number of neurological disorders, including both young and old sufferers. So, while nerve damage can often set people back physically, neurological physiotherapy can help maintain patients' levels of physical activity and quality of life.
What can neurological physiotherapy specialists offer?
There are a huge variety of neurological conditions that can impact on people during their lifetimes - such as Parkinson's, Alzheimer's, Cerebral Palsy and muscular dystrophy. And the way these conditions manifest themselves can be different from patient to patient. As a result, neurological physiotherapy programmes are equally varied.
Ongoing neurological rehabilitation programmes generally start with a thorough assessment of a person's neurological health. Trained neurological physiotherapists will be able to assess a condition on a symptomatic basis - taking account of which aspects of mobility are affected. Muscle strength and general physical fitness will also be monitored.
After all underlying problems and symptoms have been identified, a tailored neurological physiotherapy programme can be created. This will revolve around muscle strengthening, stretching, balance activities and postural awareness. Depending on the problems being remedied, walking exercises and respiratory techniques may also be incorporated in the neurological physiotherapy programme.
What does a neurological physiotherapy programme involve?
As mentioned above, neurological physiotherapy programmes are tailored to each individual and are generally used to address specific mobility or muscle problems. This means a neurological therapy programme can incorporate any number of individual exercises.
In terms of boosting muscle strength and physical endurance, simple stretching exercises, weight bearing training and a steady, graded exercise routine can help boost fitness over time. The key to muscle strengthening - particularly among people who have reduced muscle control - is a simple, consistent and long-standing exercise programme.
Depending on the severity of an individual's problems, the neurological physiotherapy programme may be hugely simplified and involve simple standing and sitting exercises. Some patients receive gait re-education, allowing them to regain their mobility and independence.
With other neurological conditions, muscle strength is not necessarily impacted upon, but range of movement and stability is. Often, treatments dealing with these issues revolve around balance and coordination exercises.
There is also an emphasis on sensory treatments in some neurological physiotherapy programmes, which can include hot and cold treatments and surroundings awareness programmes.
The key to successful neurological physiotherapy
The secret to successful neurological physiotherapy programmes is an accurate and thorough initial assessment. Identifying problem areas that can be effectively targeted with tailored treatment is a must. Once a clear evaluation has been conducted then a unique exercise regime can be created.
One of the other key aspects of neurological physiotherapy is ensuring their regularity. Regaining motor control and boosting muscle strength is a timely process that requires a lot of commitment - from both patients and their physiotherapists. But the outward benefits of neurological physiotherapy make this commitment much easier to maintain.
10 August 2010
Hard to swallow
THIS WEEK WE LOOK AT THE DIETARY REQUIREMENTS OF CHILDREN WITH CEREBRAL PALSY AND THE NUTRITIONAL AND HEALTH CHALLENGES THEY FACE
Monday August 09 2010
IN THE second week of addressing nutrition in children with special needs, we look at the dietary challenges faced by parents of children with cerebral palsy.
Cerebral palsy describes a group of disorders of the development of movement and posture, which limits activity.
Children can have varying symptoms including loose muscle tone, jerky movements of limbs, unsteadiness/shakiness, poor balance and an inability to hold objects steady which can make feeding difficult.
One of the main challenges facing children with cerebral palsy is malnutrition caused by either under-nourishment or over-nourishment. Poor nutrition can lead to stunted growth, delays in brain development, and low energy levels. It is advised that children with cerebral palsy are monitored by a dietitian.
Many children with cerebral palsy have eating, drinking and swallowing (EDS) difficulties, which can cause eating to be slow — some children with cerebral palsy can take 15 times longer to eat than children without the disorder. In severe cases, being unable to swallow can cause food to enter the lungs which can lead to frequent chest infections and pneumonia.
THE CHALLENGES
Children with cerebral palsy can have problems moving their mouth muscles; having poor tongue thrust, control and lip closure affects feeding. It can also results in loss of calories as a result of food and drink being spilled. Another feeding difficulty is the result of sensitivity to touch around the mouth and face. Some children with cerebral palsy may not like the touch of food or even a teat, a spoon or a hand.
Children with cerebral palsy often experience severe heartburn (gastroesophageal reflux). Self-feeding can be difficult, too, because they may be unable to use feeding utensils such as forks, spoons and cups.
Dietitians advice offering smaller meals throughout the day. This ensures your child gets more nutrition and reduces the stress for your child and yourself.
IMPORTANT FOODS
Fibre can play an important role in the diet of cerebral palsy sufferers as it helps alleviate constipation, to which children with cerebral palsy are susceptible.
This is caused by a lack of fluid and/or fibre, poor muscle tone and insufficient activity. Try to include a variety of high-fibre foods in your child’s diet (such as wholegrain cereals and breads, fruit and vegetables) and increase their fluid intake.
To prevent the risk of osteoporosis include foods high in vitamin D and calcium, such as milk, cheese, yoghurts and green leafy vegetables, such as spinach.
Avoiding foods that are high in fat and sugar (especially fried foods, crisps, chocolate, ice-cream, biscuits, cakes and sugary drinks) is very important for children with cerebral palsy for two reasons.
Firstly, limited physical activity is an issue faced by many cerebral palsy sufferers, which means they are more likely to become overweight and excessive weight can hinder children learning to walk. It can affect wheelchair-bound children’s mobility, making it more difficult for them to move from their wheelchair to bed, the toilet or the car.
Secondly, tooth decay is often a problem for children with cerebral palsy because of their diet, medication or gastroesophageal reflux. This can lead to greater difficulty with feeding as a result of pain and discomfort caused by tooth cavities, so foods high in sugar should also be avoided.
Children with severe feeding difficulties are an exception. In this case a dietitian may recommend foods that are high in protein and calories and, perhaps, the use of nutrition supplements to help prevent malnutrition. (See box below for ways to increase your child’s calorie intake.)
If you have any concerns about your child’s diet and nutrition it is important to speak to your GP or dietitian who can advise you on the best way to ensure your child is getting all the nutrients and calories they need. A dietitian’s recommendations may include changing the normal texture of food by chopping, grinding or pureeing and it may be necessary to thicken your child’s drinks.
For further information or to find a dietician in your area visit www.indi.ie
ZACH ANNER, 26, generated a buzz in the States earlier this year in his audition for Your Own Show, a reality series produced by Oprah Winfrey. Anner, who has used a wheelchair since the age of five, explained he had cerebral palsy, “the sexiest of the palsies”. He didn't win a place on the show but millions of viewers gave his zany humour the thumbs up by voting for him.
MICHAEL KUTCHER, Hollywood star Ashton Kutcher’s twin brother, was born with cerebral palsy. The twins grew up in the cornfields of Iowa and Ashton was Michael’s self-appointed protector. “That was a big part of my life,” Ashton recalls, “kind of looking out for my twin.”
Monday August 09 2010
IN THE second week of addressing nutrition in children with special needs, we look at the dietary challenges faced by parents of children with cerebral palsy.
Cerebral palsy describes a group of disorders of the development of movement and posture, which limits activity.
Children can have varying symptoms including loose muscle tone, jerky movements of limbs, unsteadiness/shakiness, poor balance and an inability to hold objects steady which can make feeding difficult.
One of the main challenges facing children with cerebral palsy is malnutrition caused by either under-nourishment or over-nourishment. Poor nutrition can lead to stunted growth, delays in brain development, and low energy levels. It is advised that children with cerebral palsy are monitored by a dietitian.
Many children with cerebral palsy have eating, drinking and swallowing (EDS) difficulties, which can cause eating to be slow — some children with cerebral palsy can take 15 times longer to eat than children without the disorder. In severe cases, being unable to swallow can cause food to enter the lungs which can lead to frequent chest infections and pneumonia.
THE CHALLENGES
Children with cerebral palsy can have problems moving their mouth muscles; having poor tongue thrust, control and lip closure affects feeding. It can also results in loss of calories as a result of food and drink being spilled. Another feeding difficulty is the result of sensitivity to touch around the mouth and face. Some children with cerebral palsy may not like the touch of food or even a teat, a spoon or a hand.
Children with cerebral palsy often experience severe heartburn (gastroesophageal reflux). Self-feeding can be difficult, too, because they may be unable to use feeding utensils such as forks, spoons and cups.
Dietitians advice offering smaller meals throughout the day. This ensures your child gets more nutrition and reduces the stress for your child and yourself.
IMPORTANT FOODS
Fibre can play an important role in the diet of cerebral palsy sufferers as it helps alleviate constipation, to which children with cerebral palsy are susceptible.
This is caused by a lack of fluid and/or fibre, poor muscle tone and insufficient activity. Try to include a variety of high-fibre foods in your child’s diet (such as wholegrain cereals and breads, fruit and vegetables) and increase their fluid intake.
To prevent the risk of osteoporosis include foods high in vitamin D and calcium, such as milk, cheese, yoghurts and green leafy vegetables, such as spinach.
Avoiding foods that are high in fat and sugar (especially fried foods, crisps, chocolate, ice-cream, biscuits, cakes and sugary drinks) is very important for children with cerebral palsy for two reasons.
Firstly, limited physical activity is an issue faced by many cerebral palsy sufferers, which means they are more likely to become overweight and excessive weight can hinder children learning to walk. It can affect wheelchair-bound children’s mobility, making it more difficult for them to move from their wheelchair to bed, the toilet or the car.
Secondly, tooth decay is often a problem for children with cerebral palsy because of their diet, medication or gastroesophageal reflux. This can lead to greater difficulty with feeding as a result of pain and discomfort caused by tooth cavities, so foods high in sugar should also be avoided.
Children with severe feeding difficulties are an exception. In this case a dietitian may recommend foods that are high in protein and calories and, perhaps, the use of nutrition supplements to help prevent malnutrition. (See box below for ways to increase your child’s calorie intake.)
If you have any concerns about your child’s diet and nutrition it is important to speak to your GP or dietitian who can advise you on the best way to ensure your child is getting all the nutrients and calories they need. A dietitian’s recommendations may include changing the normal texture of food by chopping, grinding or pureeing and it may be necessary to thicken your child’s drinks.
For further information or to find a dietician in your area visit www.indi.ie
ZACH ANNER, 26, generated a buzz in the States earlier this year in his audition for Your Own Show, a reality series produced by Oprah Winfrey. Anner, who has used a wheelchair since the age of five, explained he had cerebral palsy, “the sexiest of the palsies”. He didn't win a place on the show but millions of viewers gave his zany humour the thumbs up by voting for him.
MICHAEL KUTCHER, Hollywood star Ashton Kutcher’s twin brother, was born with cerebral palsy. The twins grew up in the cornfields of Iowa and Ashton was Michael’s self-appointed protector. “That was a big part of my life,” Ashton recalls, “kind of looking out for my twin.”
07 August 2010
The Effect of Oxygen on the Brain.
On the back of the previous post concerning Hyperbaric Oxygen administration, perhaps we should take a look at the effect of oxygen on the brain and ask whether research should not focus upon how the oxygen is delivered. How many of our children have suffered further brain injury through the direct administration of enriched oxygen? There is a good preventative lesson in this report.
-------------------------------------------------------------------------------------------
-------------------------------------------------------------------------------------------
The current practice of administering 100 percent oxygen to children, to prevent brain damage caused by oxygen deprivation, may actually inflict additional harm, researchers at UT Southwestern Medical Center have found.
Brain damage caused by oxygen deprivation, known as hypoxic-ischemic brain injury, is one of the most common causes of death and long-term neurological damage among infants and children. This can happen during birth trauma, near drowning and other crises.
The UT Southwestern researchers found that mice treated with less than a minute of 100 percent oxygen after a hypoxic-ischemic brain injury suffered far greater rates of brain-cell death and coordination problems similar to cerebral palsy than those allowed to recover with room air.
"This study suggests 100 percent oxygen resuscitation may further damage an already compromised brain," said Dr. Steven Kernie, associate professor of pediatrics and developmental biology and senior author of the study, which appears in the July issue of the Journal of Cerebral Blood Flow & Metabolism.
Most of the damage involved cells that create myelin, a fatty substance that insulates nerve cells and allows them to transmit electrical signals quickly and efficiently. Infants have much less myelin than adults; as myelin develops in children they become more coordinated. Areas of the brain with dense areas of myelin appear white, hence the term "white matter."
"Patients with white-matter injuries develop defects that often result in cerebral palsy and motor deficits," Dr. Kernie said.
Myelin comes from cells called glial cells, or glia, which reach out and wrap part of their fatty membranes around the extensions of nerve cells that pass electrical signals. The brain creates and renews its population of glial cells from a pool of immature cells that can develop into mature glia.
In their study, the researchers briefly deprived mice of oxygen, then gave them either 100 percent oxygen or room air, which contains about 21 percent oxygen, 78 percent nitrogen and 1 percent other gases.
After 72 hours, mice given 100 percent oxygen fared worse than those given room air. For example, they experienced a more disrupted pattern of myelination and developed a motor deficit that mimicked cerebral palsy. The population of immature glial cells also diminished, suggesting that the animals would have trouble replacing the myelin in the long term.
"We wanted to determine whether recovery in 100 percent oxygen after this sort of brain injury would exacerbate neuronal injury and impair functional recovery, and in these animals, it did impair recovery," Dr. Kernie said. "Our research shows even brief exposure to 100 percent oxygen during resuscitation actually worsens white-matter injuries."
Dr. Kernie said adding pure oxygen to the damaged brain increases a process called oxidative stress, caused by the formation of highly reactive molecules. The researchers found, however, that administering an antioxidant, which halts the harmful oxidation process, reversed the damage in the mice given 100 percent oxygen.
"Further research is needed to determine the best possible concentration of oxygen to use for optimal recovery and to limit secondary brain injury," Dr. Kernie said. "Research is now being done to determine the best way to monitor this sort of brain damage in humans so we can understand how it correlates to the mouse models. There are many emerging noninvasive technologies that can monitor the brain."
---------------------------------------------------------------------------------
Interesting isn't it? I wonder if they want to know why this happens?
When we try to administer high concentrations of oxygen to the brain, we actually cut the supply of oxygen the brain actually recieves. This is because high concentrations of oxygen act to constrict the cerebral arteries and veins. Constricted veins carry less blood and as blood carries oxygen, the individual concerned, who might already be in oxygen debt, has his oxygen supply further compromised.
Exactly the same problem is seen in epilepsy, which whether caused by pathology or physiology is a reflexive response to a compromised oxygen supply. The first thing a doctor will do is to supply the individual with oxygen, which very often just produces a bigger, better and more prolonged seizure! They then have to administer massive doses of anti – epileptic medication to undo the damage they have done through administering oxygen and to bring the seizure under control.
So what should be done instead of administering oxygen?
There is a great deal of research, which suggests that carbon dioxide is a good solution to this problem. The brain reacts to higher than normal levels of CO2 by dilating the cerebral arteries and veins. Dilated arteries carry more blood and as I previously pointed out, more blood = more oxygen. Obviously the timing, level and concentration of CO2 administration would need to be carefully controlled, but there is research, particularly with regard to epilepsy that CO2 could provide answers to some serious problems. http://www.medicalnewstoday.com/articles/73558.php is a good source just for starters!
So, in summary, the evidence suggests that we should completely review our methods for delivering oxygen to the brain. The direct route of direct administration of oxygen, actually produces the opposite effect to that which is desired and can actually make oxygen deprivation worse, thereby exacerbating the potential for brain injury and worsening neurological symptoms like epilepsy. We need to devise a treatment whereby CO2 enriched air can be administered thereby helping to turn on the brain's own natural anticonvulsant systems and in turn affecting the cerebral vascular system so that it is able to deliver oxygen as necessary. In this way we could not only prevent the occurrence of some types of brain injuries, but we could help to ameliorate the symptoms of those already suffering the consequences of neurological damage.
One thing is certain though, no one should take it upon themselves to administer CO2 enriched air to their child or to anyone else. This should only be done under the guidance of someone who is suitably qualified.
Perception
My soul in a body that will not walk,
My min in a face that will not talk.
No mateer how hard I try, you do not hear,
An I need you so much to calm my fear.
I have so much to offer, so much to say,
But I cannot communicate in the usual way.
Look into my eyes and watch my hands,
Only then will you begin to unerstand.
My wheelchair is the barrier you see,
You towering over me is the barrier to me.
We can be friends, we can speak freely,
As soon as you change the way you percieve me!
by ambryan
My min in a face that will not talk.
No mateer how hard I try, you do not hear,
An I need you so much to calm my fear.
I have so much to offer, so much to say,
But I cannot communicate in the usual way.
Look into my eyes and watch my hands,
Only then will you begin to unerstand.
My wheelchair is the barrier you see,
You towering over me is the barrier to me.
We can be friends, we can speak freely,
As soon as you change the way you percieve me!
by ambryan
Subscribe to:
Posts (Atom)