Cerebral Palsy is such a drastic turn of fortune for any family. The poorer the family, the more challenging. With her back to the closed door, symbolising all the lost life oppurtunities, a mother steadfastly leads her child along the well lit path of medical care with darkness of either side.
This tale repeats with so many children I see in my clinic. It is mind wrenching. Promise of quick cure lures any number of parents from that narrow path to dark streets of quackery and extorsion rackets who promise magical cures.
This is my tribute to so many parents who lead their child along the narrow lit path
Even when treatment of cerebral palsy is widely available, it is not uncommon to see severe deformities due to improper or delayed referral to a treating centre, lack of awareness of simply neglect. Quite often patients live in far flung villages with poor access to healthcare or broken families compounding the difficulties.
I have seen that through these storms invariably the mother stands and guides the child unwavering.
Before the pandemic struck and wrought drastic stop to treatment of children with cerebral palsy.
Two years have passed and we hobble back to restart our work and pick up pieces. Many children have lost the improvements that they had attained as they lost out of treatment due to lack of money, travel restrictions and physiotherapy.
This is October 2019 we hosted a live painting workshop at ICCONS to raise awareness about Cerebral Palsy.
I am writing to this now after I had composed an artwork. It had been brewing for about a week since my friend forwarded me an appeal for medical/financial help by a patient with #AnkylosingSpondylitis a medical disease which causes destruction of joints and loss of movement at spine and hips.
This particular patient was bedridden for past several years and last few months have been extremely troubling
He lives in a small tin roof hut built by kind neighbours with his young family. He himself is in prime of hia youth abd his ilness had crept in on him and progresses considerably. Without medical and financial help he is not taking any, and cannot afford any. As a result his joints have become immobile and he requires somebody to come to turn him around in bed or prop him up. The pain while moving is excruciating he says.
He has been fighting it out though and making paper Ballpen abd Umbrella for a living. There are some steady clients but past few months have been terrible. He has been unable to send his products due to lockdown since courier and speed post services also have been stopped due to #COVID.
I had bought a small number of pens under my personal capacity to encourage this chap and give him a morale boost.
Today I decided to doodle it for #ArztForACause project and raise awareness about Ankylosing Spondylitis a medical condition where joints lose mobility and spine hunches forwards and bend over acutely; so acutely that one cannot even look up
What I’ve attached below if the drawing I made just now.
About Ankylosing Spondylitis
It’s a medical condition where there is an inflammatory process in the tissues and joints.
This inflammation is relentless, progresses fast and is an extremely painful process.
Usually this disease affects spine and other major joints like Hip Joints causing pain, inflammation and stiffness. Overtime the joint itself ‘fuses’ much like how a metal hinge can we welded and rendered immobile.
This happens frequently in spine and hips. As a result the patient becomes completely immobile at those joints and cannot move about.
The entire process starts around the twenties and progresses fast and by late thirties or forties patient is bedridden.
There are basic medications and some expensive injections called ‘biologicals’ which can ease or slow down the process but none can stop it. Supervised Yoga or exercises have be extremely gentle as risk of fracture of spine is very high. Deep breathing exercises for chest is very important as all the ribs tend to join at the breastbone instead of staying flexible. When ribs fuse with breastbone the chest wall becomes rigid and doesn’t expand when patient breaths. As a result he has to use his diaphragm muscle and abdomen muscles to breath.
Early intervention is paramount along with physical therapy and supervised exercises.
Consult your Doctor to know more about Ankylosing Spondylitis if you’ve symptoms of back or upper back pain, tightness in chest, early morning pain, pain while sleeping and joint pains with swelling.
Some patients also have symptoms of irritable bowel, inflammation inside their eyes which causes them to water and many other symptoms.
Cerebral Palsy is such a difficult disease to handle and treat for the health care professionals.
The treatment process needs to take the parents and family members along so that these children get optimal care. It’s important to reinforce on the parents and lift their morale throughout the course of long and arduous treatment.
I routinely arrange seminars and medical camps and arrange public events in association with groups serving these children to help them and keep caregiver morale high. It’s a fight, a relentless fight against Cerebral Palsy.
It never ceases to amaze and move me that the mother , however humble or rich , illiterate or well educated, they may be cares for the child and stays with child through thick and thin.
My Digital Art on a mother caring for her child with Cerebral Palsy – Drawn using Wacom One CTL 472 and MyPaint Open Source Software.
This painting is part of the #ArztForACause fundraiser for children with Cerebral Palsy , Autism and Movement Disorders
She literally is the guiding light of the treatment, showing the way and proving that she’s the true representative of the all giving , ever loving Divine Mother
Delighted to announce an Art Project with Dr. Suresh (Director , Neurologist , ICCONS) , Dr. Sekar Michael ( Pediatric Anesthetist, ICCONS) and Dr. Easwar TR (Pediatric Orthopedic & Spine Surgeon , ICCONS) as fund raising campaign for treatment of children with #CerebralPalsy, Movement Disorders, Chronic Pain and #Autism. This will be an ongoing project.
First day was today. Wonderful experience at ICCONS, Shoranur.
Lovely to see that many of the staff from Speech and Audiology participated as well.
We plan to improve this in the next iteration and pool all the paintings we paint ( Dr. Suresh, Dr. Sekar and myself ) to help build a fundraiser.
We will be holding these painting sprints at frequent intervals.