#IceBucketChallenge Is No Laughing Matter

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 The first video of the ALS #IceBucketChallenge I saw on FB was of a young girl in a bikini, standing in her dark bathroom, pouring cold water over her head and then tagging her four friends to do the same or else donate $100 to the charity. In her comment box there were her friends who were against this idea of accepting her challenge.

I found it strange that people would do such silly things to raise funds in this way for the cause as serious as ALS.

Just then I read another friend’s status that read “Hit yourself on the head with a cast-iron bucket it to raise awareness about stupidity. Welcome to the #KickBucket challenge.”

It seemed stupidity to me too. What was this challenge and what was a big deal. I posted on my wall “What is the big challenge? Indian do have ice cold bucket bath everyday”

As the day progressed, my FB time line was getting flooded with many such videos of known people accepting #IceBucketChallenge. It was going viral. In the trending column, it showed that donations to the A.L.S. Association, a Washington-based nonprofit that funds global research to find treatments and a cure for the disease, had surged since the challenge started trending in late July. The group said Thursday morning that it had received $41.8 million in donations from July 29 until Aug. 21.

$41.8millions raised for challenge of ice cold bath?

“NO, people. do NOT post pictures of yourselves in bathrooms with a bucket, wet from a bath. NOBODY wants to see you that way, and it is NOT what the ice water bucket challenge is all about.” Screamed the status of yet another friend.

Was it a joke that people were enjoying? And why were educated people on my FB list doing it too?  Another friend wrote:

"Stop calling ice bucket challenge 'stupid' or 'useless' because it is not. Yes the water is getting somewhat wasted but it is more of an investment than wastage... Get your facts rather than criticizing every damn thing!!!" 

In conversation with my niece, it finally began to make sense. She told me about her 30years old friend (she knew in Bangalore) who was suffering from this illness. She said that he had two small kids and he had very little time to live.

When the disease strike some one close, a person we may know, we begin to feel its weight. We understand the seriousness of this disease.

Amyotrophic lateral sclerosis (ALS)—also referred to as motor neurone disease (MND), Charcot disease, and, in the United States, Lou Gehrig's disease—is a neurodegenerative disease with various causes. It is characterized by muscle spasticity, rapidly progressive weakness due to muscle atrophy, difficulty in speaking (dysarthria), swallowing (dysphagia), and breathing (dyspnea). ALS is the most common of the five motor neuron diseases.

One moment, a person is leading a very normal life, enjoying a game of basketball, and next moment he feels heaviness in his feet. He stumbles and falls, then experiences awkwardness when walking or running. Over the time, he starts experiencing difficulty in moving, swallowing, speaking or forming words. His muscles begin to tighten and there is exaggerated reflexes including an overactive gag reflex. Difficulty in chewing and swallowing makes eating very difficult and increases the risk of choking or of aspirating food into lungs. In later stages of the disease, aspiration pneumonia can develop, and maintain a healthy weight can become significant problem that may require the insertion of a feeding tube,

Although his mind remains sharp, ALS, that attacks his nerve cells, can ultimately lead to paralysis. Life expectancy is typically two to five years from the time of diagnosis.

The exact cause is not understood and there is no cure or treatment that can stop or reverse the disease. There is need to find a proper drug to cure the person from this disease.

I finally began to understand the seriousness of this disease and the importance of doing research. By ALS #IceBucketChallenge, a lot of awareness has been spread, by tagging people on social media, a united chain has been created and people are donating happily for this cause.

And all things said and done, there is humor behind this serious cause.

Source:

http://www.alsa.org/about-als/

http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis

Hydrocephalus

Cerebrospinal fluid(CSF) a clear liquid which is very similar to the liquid portion of blood(plasma) and contains various salts and products such as sodium, calcium, bicarbonate, chloride, magnesium and glucose.The purpose of the Cerebrospinal Fluid (CSF) is as a medium for the transport of the chemicals to and from the brain, and also to provide buoyancy and protection for the brain. When there is excessive accumulation of cerebrospinal fluid (CSF) within the ventricles of the brain, there is a neurological disorder called Hydrocephalus.

Neha is 24 year old hydrocephalic patient. She can be recognized with her enlarged head. Neha is very hyperactive and is most of the time tied to a chair. She has tendency to be destructive and will fling objects randomly if left unsupervised. She is not able to perform any activities because of her poor eye-hand coordination but she does not like to sit alone. She likes to come to school everyday and sit in the company of other children, watching them play, smiling at times. On the days, when there is holiday, she is very hyperactive and restless at home and insists that she needs to go to school, many times displaying temper tantrums.

Normally, in infancy (usually before 3 years of age) in the case of Hydrocephalus, the head size grows too rapidly and the head becomes too large. The baby's soft spot at the top of the head may be full or tense, and the veins distended.

There are a number of causes of hydrocephalus; these are either developmental or genetic. Genes are not passed from generation to generation unchanged. They go through a process called meiosis when they divide to form gametes; this process mixes the genetic material between the genes. Genes can also be changed by external forces; some substances can cause alterations of the genes, as can radiation. These genetic changes can lead to developmental changes, which were not passed from their parents. Most cases of genetically caused hydrocephalus lead to several malformations, one, or more, of these will affect the nervous system.

In Hydrocephalic adults whom the skull bones have fused, the head size usually doesn't grow abnormally. The increased intracranial pressure can cause headaches, irritability, sleepiness, nausea or vomiting, visual problems, neck pain, seizures (rarely), or a change in behavior, personality or school performance. An inability to concentrate or remember things may also develop. Lethargy, drowsiness, balance problems, and double vision are common symptoms.


Detail information on Hydrocephalus, causes, treatment, history and surgical procedures can be found here

Case study of an autistic child

Vinesh lives in his own world, playing with his fingers and shaking involuntarily, sometimes throwing temper tantrums and other times destroying what ever comes in his hand. I see him pull out cane-threads from the mat under him, joining it to make a long string and then stretching and pulling and rolling it over and over. His teacher asks him to stop fidgeting and he folds the string and stuffs it into his pocket, but only momentarily and then, he is again, unrolling the string and playing with it over and over again. He shows no interest in the class activities and will respond only when his instructor gives him a personal attention. His teacher says that he is very cooperative only when given 'one-to-one' attention and he is quite independent in his self care activities. He can paint, draw and perform pre-vocational skills. He is able to follow instructions and is able to ape the actions if given individual help, but for most part of the day, he is hyperactive and lives in a world of his own.

Vinesh is a case of an autistic child.

Autism is a brain development disorder characterized by impaired social interaction and communication, and by restricted and repetitive behavior.

Autism is a complex lifelong developmental disorder, and has no cure, medical or therapeutic. However, through early intervention, many children have been able to lead productive and meaningful lives with support from their family, friends and professionals

Research indicates that giving early intervention in the form of specific and appropriate training methods that are tailored to your child's needs and learning style is the one way to help your child reach his/her maximum potential. Prior to this, it is important that a special educator take a detailed assessment of your child's strengths and difficulties to develop an individual education plan for your child. There are a number of intervention styles/methods, and you would want to choose that would benefit your child most.

Autism primarily affects the areas of communication, social skills, and thought and behaviour.


About a third to a half of individuals with autism do not develop enough natural speech to meet their daily communication needs. Differences in communication may be present from the first year of life, and may include delayed onset of babbling, unusual gestures, diminished responsiveness, and vocal patterns that are not synchronized with the caregiver. for example, they may look at a pointing hand instead of the pointed-at object and they consistently fail to point at objects in order to comment on or share an experience. Autistic children may have difficulty with imaginative play and with developing symbols into language.

Autistic individuals display many forms of repetitive or restricted behavior, such as:

Stereotypy is repetitive movement, such as hand flapping, making sounds, head rolling, or body rocking.

Compulsive behavior is intended and appears to follow rules, such as arranging objects in a certain way.

Sameness is resistance to change; for example, insisting that the furniture not be moved or refusing to be interrupted.

Ritualistic behavior involves the performance of daily activities the same way each time, such as an unvarying menu or dressing ritual. This is closely associated with sameness and an independent validation has suggested combining the two factors.

Restricted behavior is limited in focus, interest, or activity, such as preoccupation with a single television program or toy.

Self-injury includes movements that injure or can injure the person, such as eye poking, skin picking, hand biting, and head banging.

For many children, autism symptoms improve with treatment and with age. Some children with autism grow up to lead normal or near-normal lives. Children, whose language skills regress early in life, usually before the age of 3, appear to be at risk of developing epilepsy or seizure-like brain activity. During adolescence, some children with autism may become depressed or experience behavioral problems. Parents of these children should be ready to adjust treatment for their child as needed.

For further support and help in managing autistic child, read the answer as many questions about autism, dealing with behaviors, and other issues raised by families in India HERE
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