Sunday, October 2, 2011

Trapped in a Body that refuses to Obey- Cerebral Palsy

Prachi looked at me from the corner of her eye and smiled as I entered the classroom. All other children were distracted too. One child got up and limped towards me, stretching his trembling hand towards me. I held his hand tight and guided him to his seat.

“Sit and do your work” I said giving him a soft pat on his head and then walked away towards the seat where Prachi was seated.

Prachi moved her stiff muscles, holding the pencil box under one arm while she struggled to extract the pencil with her tightly stretched fingers. Repeatedly she tried grasping the pencil to slide it out from plastic clasp of the box. Her movements were jerky and abrupt, it appeared to be uncontrolled and without purpose. Her body moved and suddenly she fell off the seat, with her legs in scissor-like position and her hands stiff, up in the air. Her classmates startled, all rushed and stood around her as she lay stiff on the floor, staring at children around her.
“Move back, go back to your seats” I said while I held her under her arms, lifted her heavy body and helped her sit on her seat again.

“You okay? Be careful” I said as I removed the pencil from her box and placed it between her fingers.

Being careful is not easy for Prachi, especially if she lives in a body that refuses to obey her.

Ten-year old Prachi suffers from Cerebral palsy, a condition caused by abnormal development of brain and nervous system due to which there is stiffness in the muscles and constriction of motor activity. She has problems with posture, balance, walking, speech, swallowing and other functional coordination.

“When Prachi was born, she did not cry” says her mother, Anita Chavan, “there was not enough oxygen to reach her brain as the result her brain was damaged.”

All her milestones were delayed; she could not control her head, roll over or sit without support. Over the years, she has shown little progress but she needs help in most of her activities.

Cerebral palsy can result from the damage to certain part of the brain which can be due to prenatal, natal or postnatal factors.

Risk factors linked with cerebral palsy can include Rh factor incompatibility where there is difference in blood between mother and fetus; however this is almost detected and treated in women who receive proper prenatal medical care, sometimes it can be genetic or hereditary condition, There is a bigger risk if there is complication during labor and delivery due to which the brain does not receive enough oxygen.

“She is quite normal in other ways,” says her mother, “She understands everything and is intelligent too. She is quite independent and does most of her thing on her own; I help her only with brushing her teeth and combing her hand.”

During the lunch time at school, her classmate brought for her a bowl of water and helped her wash her hands. She unlocked her lunch box independently and clapped her hands when she saw the Aloo Paratha in her lunch-box. Her classmate rolled out the Paratha into a small cone and placed it in her hands. She started to chew, masticating each bite slowly, with her saliva dripping from the side of her mouth.

The problems and disabilities related to Cerebral Palsy range from very mild to very severe. Their severity is related to the severity of the brain damage.

At the age of 7 months, Prachi suffered from minor fits. Her mom took her for many tests, visiting various doctors and hospitals. At Nanavati, Mumbai, she underwent EEG (Electroencephalography) for the diagnosis of seizure disorder. Physiotherapy was then suggested for relief. Once a year, her mom, Anita Chavan, regularly visits a hospital in Nagpur where parents of CP are given training in physiotherapy to help their child. To help her child further, Anita Chavan has even completed the special education Teacher’s course from NIMH at Navi Mumbai.

While special treatments are given to the child to develop specific skills, the overall goal of treatment is to help the individual to live the life as normal as possible. This can be accomplished by variety of different approaches managed by team of professionals like physical, occupational, psychological, medical, speech therapies, etc.

Physical therapy involves stretching, bending, yoga, and other physical exercises to strengthen the muscular reflexes. The focus is on developing specific skills such as holding the head straight, sitting without support and walking independently. Occupational therapy involves development of fine motor movements like feeding, grooming and personal care. Speech therapy is used to overcome communication problems. Many children with Cerebral Palsy have limited and slurred speech because of the poor muscle coordination of tongue and lips. Medical therapy comprises of all the medical problems like seizures, breathing, feeding and digestive problems and their treatment.

Prachi is mentally alert child and was admitted in a normal playschool in Bangalore at the age of 3 years. When her family shifted to Kharghar, Navi Mumbai, she could not locate any special schools for spastic in her area. “I want to integrate her into a normal school” says her mom, “the only special school for Spastic is in Bandra which is very far. I wish there were more school for such children in my area.” She was admitted to Swami Brahmanand Prathisthan, Centre for mentally challenged in 2010 where she is presently attending regularly. She is able to read and write alphabets and numbers, also knows to read and write her name and postal address and is learning many other activities.

Its play time and Prachi walks slowly down the stair, balancing her weight with both her hands on rails. She is social and follows children to the playroom. While other children run and jump, she squats on the floor, looking around for some Montessori equipment to pass her time.

Ps: National Cerebral Palsy Day is celebrated on 3rd October 2011. This is celebrated in memory of Late Dr. Dr.P. K. Mullaferoze

“Cerebral palsy is a multifaceted problem with many systems of the human body which are affected. This requires a team approach and infrastructure in its management. Sadly this is lacking. As a result of lack of awareness, patients present late, much beyond the golden period when a definite impact can be made by treatment. Hence the need to create social awareness and to sensitize our population and government to the problems of cerebral palsy patients is acute.”- Durga Mallikarjuna

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