"I don't need easy. I just need possible." - Bethany Hamilton
Spasticity is truly a monster. Spastic Cerebral Palsy is one of the most common types of cerebral palsy.
When people without cerebral palsy perform a movement, some groups of muscles turn on and some groups of muscles turn off. In people with spastic cerebral palsy, both groups of muscles may become turned on at the same time. In some instances, the wrong muscle groups may turn on. This makes movement difficult or even impossible.
Muscles appear stiff because the messages to the muscles are sent incorrectly through the damaged part of the brain. When a muscle is affected by spasticity, the faster the limb is moved, the stiffer it seems.
It is caused by damage to the motor cortex of the brain. Spasticity arises as a result of injury to bundles of neurons in the brain and spinal cord called the corticospinal tracts and corticobulbar tracts.
Spasticity in the upper arms can lead to difficulties with tasks involving the hands and the arms like getting dressed, washing and toileting oneself, eating or drinking, writing and manipulating objects. Spasticity in the legs may affect the person's ability to stand upright, sit upright, transfer from one position to another, move and reposition in bed, walk and run. It can also affect speech.
Early years......
We first noticed stiffness in Yatish's legs when he was a few months old. We did regular physiotherapy sessions. However, as the days went by the stiffness seemed to increase in both his limbs. It was an effort to carry him with his stiff little body coupled with no neck control. The easiest way to carry him we found was to face forward.
As expected Yatish did not achieve any of his physical milestones except for the social smile, which is a sight to behold even now. We continued his physical therapy and occupational therapy sessions at the early childhood Intervention centre with the hope that he might catch up.
When Yatish was 2 years old we went to Mumbai to explore Botox treatment. We consulted Dr Ashok Johari, a very well-known Pediatric Orthopedic Surgeon, who was offering it. Once the Botox was given, it was to be followed with rigorous physiotherapy and it had to be repeated every 6 months as the effect of Botox would wear off. Since Yatish was too young, he told us to come back when he was older.
We also slowly realised the full impact of his spasticity. He had no speech, constantly drooled due to poor head control and poor control of the oral muscles. He could not sit nor stand, nor crawl or rollover. We had to constantly carry him as he could not sit in the conventional baby seats and also we had very few options 20 years back in India.
Between all this, we met quite a few specialists to get opinions on his treatment and how to manage his condition. While everyone mostly recommended physiotherapy and occupational therapy. no one had any clue as to how to gain significant improvements in Yatish's condition beyond conventional methods, which did not work.
Yatish by now had AFOs (Ankle-Foot Orthosis) to help support or align the foot and ankle and prevent muscle contractures in the calf.
During this time, we met an Emergency Pediatric doctor from Chicago Children's Hospital who was visiting his family in India. He took a look at Yatish's MRI scans and told us Yatish's cognitive ability was not compromised and that we should not give up on him. We should ensure that he gets an education and gets an opportunity to explore his cognitive abilities. This only reinforced our belief that Yatish was extremely smart, which we knew all along.
Now, this posed a bigger problem for us, we not only had to cater to his medical needs and management of his condition but also now had to look for a school. It also meant we needed to somehow make him sit so he could participate in the school activities. The wheelchairs at the time did not cater to his small body and it was extremely expensive to import them from other countries due to customs duty of 150%, which has been scrapped now thankfully.
We approached Mobility India which provides rehabilitation services and also make prosthetics, orthotics and wheelchair modifications. They built a small wooden chair with very basic materials and straps to hold him in place. Yatish was very uncomfortable in it and the foam material used in lining the chair made it extremely hot and he could not sit in it for a long time. However, we had no choice.
During this time it was noticed that he had a sternocleidomastoid tumour on the right side of his neck, which made him turn his face to the left. Although they say it goes away within 6 months, in Yatish's case it lingered on making it difficult to feed him and get his vision to the centre. As a result of this, it seems he has developed a strong peripheral vision 😊.
Between the wooden chair and a stroller, we managed his early school at the Headstart Montessori.
Mid Years...(to be continued)
