Parnasi – Her journey from Darkness to Light with VASA Concept
Updated on: 9th Aug 2011
Mr.Nitin Singala (Parnasi's father)
May 2008:
Our daughter, Parnasi suffered brain stroke in April 2005 at a very young age of 14. An immediate surgery was performed by a leading neurosurgeon to remove the AVM and blood clot. Her left side was completely paralyzed with almost zero power in her hands and legs. In hindsight, we were not properly explained why surgery was essential and whether there were any other options and possibility to avoid it. There was no caution about post surgery complication such as hydrocephalus.
Initially we consulted a leading physiotherapist from traditional Bobath School and continued her treatment for almost 8 months post the stroke. Now we realize that the passive therapy applied by the so called specialist therapist did not seem to be coherent. No guidance was given abut the recovery process and what it entails. There was too much dependence on passive work and props such as vibrator. This therapist did not identify that this approach was triggering Paraesthesia in Parnasi and the danger this would have caused to our child. The improper use of splints further aggravated the situation. The loading of the knee with flail weak muscles of the leg and practicing long distance out door walking with AFO, foot drop splint were premature and caused Parnasi’s knee to go in severe recurvatum.. The whole process was pushing Parnasi backwards and we were being led towards Botox as solution that was not convincing to even lay persons like us.
Parnasi started neglecting her left side as if it did not exist. At times she would hurt herself on left hand or leg without realizing. At time even smallest touch would result in significant pain sensation for her. Again, there was no explanation that this was caused by Paraesthesia and how it could be overcome.
Now in retrospect, therapy where Parnasi was a passive recipient and therapists were active delivering the technique seems to be a very shallow approach in this 21st century resulting in criminal waste of critical time, money and energy. The strategy seemed more to adapt and compromise and accept with time, left weaker side as a paralyzed side rather than fight this out and overcome the challenge. Further, some of the techniques such as vibrator and improper use of splints were retrograde and were causing more harm than help putting much wanted recovery on the reverse escalator, form where the upward journey towards recovery can simply remain a dream and not on sight unless one becomes fortunate to learn that she is on reverse escalator and manages to take a decision to get down from the reverse escalator and get on the upward escalator.
Moreover, there were no clues as to how to deal with the young child in her teens and her mind and her psychosocial behavior that was alarmingly becoming threatening. They wanted to pass the buck to others and never showed any inclination towards how we could deal with her mind specially when we as parents were also suffering inside to see our lovely child suffering and there was no light at the end of the tunnel in sight. Parnasi was developing more and more fear psychosis about her safety and she would take support of wall to climb down, to climb up the stairs and while walking in our living room she would get dragged towards wall for mental support.
Journey towards Light
We continued checking internet to find other options and stumbled upon Dr. Rajul Vasa’s website www.brainstrokes.com. This gave us a new hope when we learnt about her and the VASA Concept. Trupti started calling Dr. Rajul for an appointment and finally Dr. Rajul met Parnasi on 24th December, 2005, about 8 months after her stroke.
This was beginning of a new dawn for us. Dr. Rajul was the first and only doctor who gave confidence to Parnasi that she could recover completely. Dr. Rajul was categorical that her approach required the patient and the family to work extremely hard. She explained that Parnasi must be made to actively do prescribed exercises that would activate the neurons and pathways in the brain to get back the lost motor control. We found the best thing about the therapy through the VASA Concept is that it does not involve use of any medicine, machine, equipment or other prop.
Dr. Rajul also cautioned that by now Parnasi’s brain would have registered some wrong patterns and this would require that much more hard work and strong determination. Such patients are on reverse escalator and doing wrong therapy or wrongly doing the therapy can take such patients backwards.
Dr. Rajul’s approach was direct and seemed very logical and thus very assuring. Her immediate advice was to throw away all the splints as they were causing more harm to Parnasi than help her. Parnasi very happily discarded the splints immediately.
Dr. Rajul was also against the Botox treatment. We understood that Botox injections temporarily paralyze and de-nerve the muscles. The effect usually lasts only for 2 or 3 months each time and overuse of Botox over period would add on to the weakness already there from stroke in the brain and now add the weakness by paralyzing the muscle certainly, this is no solution, it looked simply one more symptomatic treatment and not treating the root cause.
Immediately, Parnasi started rigorous exercises everyday under guidance and care from Dr. Rajul. In this process, the family is also required to actively participate and support the patient at physical as well as psychological levels. Initially, it was very difficult and Parnasi would get tired very soon. She was used to passive exercise. Earlier, Parnasi worked hardly at all as she had been a passive recipient and therefore it was difficult for her to digest such a big change where she had to work very hard. It was also tiring for the persons helping Parnasi with the exercise as she required a lot of support.
The results started showing very quickly. Parnasi’s body started staying much more relaxed and she could walk without any support. Her foot drop was almost gone, the heels started touching the ground and the toes would not curl up. Her left foot was no longer just a prop and would actively participate when she walked. Also her eyes would remain completely shut while asleep. Parnasi would require lesser support during the exercise. As a part of therapy, she also did dancing lessons with a trainer for bilateral movements. Parnasi’s studies also continued very well without any break. Parnasi sailed through her final school exams with excellent grades in June 2007. She also got admission to the college of her choice. This success helped our beautiful child regain her confidence which was possible only because of the therapy under the VASA Concept. Parnasi could mix very well in the environment and quickly made new friends. She also started actively participating in various college activities.
Dr. Rajul continued to remind that recovery of Parnasi’s fingers and thumb is closely linked to her hip muscle and the shoulder and that she needs to go through earlier exercises to strengthen her hip and shoulder muscles. It was also essential that Parnasi to keep written records of various exercise, maintains her log, notes down observations and communicates to Dr. Rajul. It would be very helpful to monitor the progress through periodic video recordings and reviewing them from time to time.
Key learning
Treatments in contemporary medicine are symptom based and not on identifying and removing the root cause of symptoms that one sees and encounters for days and days. One feels helpless on seeing symptoms getting worst and out of control despite doing all that the doctors have advised. The parents do get panicky when they hear negative and pessimistic undertone in the talks of doctors and when they experiment on their child with drugs with terrible consequences on the brain which already suffered in the hands of nature and now gets further abused by the so called medical experts.
The Vasa Concept requires the patients to actively do vigorous active exercises, specially designed exercise to influence the brain as desired. The initial support should be gradually reduced and finally withdrawn to make the brain connectivity to consolidate as required. The patient should have extremely positive attitude and should be committed to achieving the victory. In contrast, the passive exercise would make the brain dependant and send simultaneously ongoing external sensory stimuli that chaotic brain can not handle and may respond un-proportionately as is spasticity and Paraesthesia.
The increasing self awareness and complete dedication are keys to success in this battle for victory over stroke where the modern medical science does not have any concrete answer. But with VASA Concept for motor control following stroke treats the brain using same muscles which are paralyzed. Muscles are used as a tool to reorganize and modulate the brain connectivity to get desired results and victory over stroke.
It is important to know the Don’ts as it gets more difficult to undo the wrong patterns that get set in. The log book, written records of the exercise and communication of the observations are effective tools for ensuring greater benefits from therapy under the Vasa Concept.
Thank you, Dr. Vasa
It would be very difficult for us to imagine what would have happened if we had not meet Dr. Rajul. The VASA Concept therapy has improved Parnasi at all levels – physical, bio-mechanical and psychological. She is near normal with her self confidence very high, sharp as ever, very matured and understanding and physically much more strong. All of us are indeed extremely grateful and devoted to the cause of the Vasa Concept.
We wish Parnasi had this benefit of VASA Concept immediately following the stroke. It would have at least avoided the reverse escalator and therefore saved time, money, energy and big emotional trauma to her. Also, the trauma faced by the whole family attached to her emotionally could have been largely avoided if we would have been properly guided about this by our neurosurgeon who was our first contact doctor. While the neurosurgeons did advise us about need for Gardinal medicine to prevent convulsion though there were none, they did not warn us about the long road for rehabilitation and the right direction.
We hope sharing of our experience would help passengers in similar journeys take correct path and avoid the miseries.
Trupti & Nitin Shingala
May, 2008
904, Wallace Apartments – I
Sleater Road, Grant Road
Mumbai 400 007
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Tel. +919820022589
Parnasi Singala
Apr 2011:
I am Parnasi Shingala, a teenage stroke survivor who has regained tremendously with kind help and guidance from Dr. Rajul Vasa and rigorous application of VASA CONCEPT.
I suffered a stroke in April 2005 at the age of 14. This is my story which I would like to share. I had an AVM burst in the right parietal lobe. A brain surgery was performed on me and a leading neurosurgeon of the city who explained this was done to remove the AVM and the clot in the brain. I lost all power in my left side of the body from head to toe. My mouth had deviated to the left side. I was discharged from the hospital after about 10 days. I had to undergo another surgery within about six months and a shunt was inserted in the operative area of my brain to drain excess fluid accumulated therein. My parents and I were not warned about possibilities of developing encephalitis, which we understand is highly probable post the brain surgery performed to remove AVM/clot. At times now I ponder whether the first surgery was inevitable and whether the neurosurgeon did explore other non-operative options as I feel such a debate was required then before fiddling with my brain of only 14 years with surgical knife in order to prevent post surgical hazards like encephalitis an undesirable gift to me from my neurosurgeon for making my dad pay heavily for the 1st surgery craniotomy and then for shunting to drain the CSF after getting infective encephalitis. I wonder whether surgical interference hampered my recovery by giving me added encephalitis and by tampering with some of my normal neuronal connections during surgery that may not have been affected by the stroke and AVM bleed.
At the time of my stroke none of the doctors or physiotherapist made me or my parents understand the gravity of the situation. I distinctly remember the neuro surgeon saying that I should be up and about walking around in one-two months. Everybody seemed so casual about it that I was delusional that the stroke is just about a hospital vacation of few weeks without any lasting damages.
I started with regular physiotherapy almost immediately at the hospital and at home. The therapist would come home everyday initially and do passive exercises with me. Retrospectively I don’t see the point of any of the exercises and now feel it was a big waste of very precious time. After some period I would go to the therapist’s clinic four times a week for an hour each. I was made to do lots of passive movements. I had my leg moving after a month of my stroke but it was very abnormal movement This went on for over six months post my surgery but I still did not have balance and I couldn't take weight on the leg therefore I could not walk.
However, the movement of my leg was an abnormal circular one and I was then made to wear a splint for foot drop whenever I walked. This made my walk worse. My heel tendon became very tight. My heel didn’t stay on the ground when I walked; I was walking on my forefoot. My knee used to go into recurvatum also. This is the super locking of the knee while walking I developed from walking when my knee muscles were very flail and flaccid and I began to load the bones and super locked the knee from fear of falling and in order not to buckle at the knee and thereby prevent fall. I was also made to wear two hand splints, one for my arm and the other for my fingers. Whenever I wore the splints my hand would stay open and straight but as soon as they were removed it would bend from the elbow, and fingers would fist. My fingers stayed in a fist almost all the time. Opening my fingers passively was very difficult even for the Bobath therapist. The weight of the splints was very much, I also got atrophy in my shoulder muscles with slight subluxtation of shoulder. Also there was use of a vibrator on my body every time before a therapy session begins. This was done when I was yet flail, later I developed spasticity. The use of the vibrator made my body develop the abnormal sensations or hyper sensations called as Paraesthesia.
I had also met two of the top Bobath physiotherapists from USA who were attending a child disability conference in Mumbai in December 2005. They also said the same thing that I was told all this while by Indian Bobath therapist. I was told to do the same things I had been doing for the past few months. I was also suggested to do couple of alternative therapies like acupuncture, acupressure, magnet therapy etc. (These did not make any sense to me or my parents) and get Botox injections. At that moment what struck me was why should I do the same Bobath things again if I have been doing it for six months without any result???
Also by now my body had developed particular abnormal patterns which are very difficult to change. Spasticity had made my body very tight. My hand would remain in a fist all the time. I was very depressed and as being a child did not understand and had become a very difficult person at home and in school.
In retrospect, the previous therapy not only seems a complete waste of time, energy but seems like missing the golden opportunity of quick recovery and instead works in a reverse direction by developing abnormal movements that sets wrong patterns in the brain.
Soon thereafter (around after seven months of my stroke) I was extremely lucky to meet Dr. Vasa, a fairy sent by God, whom my father found while surfing on the internet and my mother pursued continuously for several weeks before she agreed to see me. Dr. Vasa was the person who told me that I could achieve recovery if I worked hard. She warned me that this will require at least 6 to 8 hrs of exercise every day for which I should be ready. (This is the reason Dr. Vasa would like to ensure commitment on part of the patient and the family before readily agreeing to give appointment.) Dr. Vasa also advised me to stop wearing all my splints and stop Gardinal, the anti-convulsion medicine that the neurosurgeon had prescribed me for lifetime.
Dr. Vasa’s motto which is "brain responds / learns here and now" struck me the most. The results were instantaneous. I and my parents were able to immediately connect with Dr. Vasa and developed tremendous confidence as we saw immediate results by following her therapy and advice. My body started staying very relaxed; I could walk much better that too without any help. Earlier I would always walk with a fear of falling, so I would walk holding walls and any thing that came to hand. I now walk independently and confidently. My fingers hand has also started to function.
Dr. Vasa has a razor sharp and analytical mind with strong memory. Under her guidance, I started building power, stamina and body control by performing various exercises that she would prescribe from time to time. All the exercises that I did were active as against passive ones under the previous therapist. I soon realized that passive exercises were an utter waste of time when the movement is not there and also the muscles aren't powerful enough to support passive movements. I now firmly believe that VASA CONCEPT therapy is the only solution in this world to recover sensory motor cognitive perceptual recovery post stroke and achieve normalcy.
I had also developed the queer sensations of hyper and mostly pain sensations all over my left side post my stroke. These sensations as I understood from Dr.Vasa were parastheisia. My sensations would be hyper and very abnormal. A simple touch on my hand would feel like a slap. Hot and cold sensations would be very aggravated. I would feel very cold very soon. I remember once the Bobath therapist had asked my mom to put ice on my left hand to see if I could “feel” the cold sensation. That had felt like a knife cutting through my hand. I could not even bear the fan switched on in the room at times. With Dr. Vasa’s guidance and exercise regime all these hyper sensations slowly began to fade away. Slowly I started becoming more comfortable and at ease in different environments. The cold sensation came back to normal. I can now hold ice with my left hand now without feeling any abnormal discomfort and with the same sensations as with my right hand.
My studies continued uninterrupted and I have been able to pass various examinations including my school board and higher secondary board exams with flying colors solely due to this recovery by working under Dr. Vasa’s guidance. I was asked by the neuro-surgeon to take Gardinal, the anti-convulsion medicine for all my life for fear of developing epileptic seizures right from the start though I never had one but for sure it made me very lethargic and drowsy and I could not pay much attention in my studies at school from effect of the drug. Under new therapy I stopped the anti-convulsant and here I am now studying in a very well known law school in Mumbai University on my path to becoming a good lawyer and wish to contribute to the Society.
Post my stroke I used to have a fear of going out of the house. I would get apprehensive of crossing the roads and even travelling by buses and trains. I used to be scared that if I wouldn’t be able to get to the other side fast enough or would fall on the road and get hit. Similarly I would have a fear of falling down from trains. Now I have overcome all that. I can cross the roads with ease and I travel almost daily by train to get to college.
I would like to share with you one of my experiences while travelling by train. I got on the train in the afternoon from my usual station to get home. What I did not realize is that particular train was going to the yard for service. As soon as the train started moving one of my co-passengers on the train pointed it out. I did not jump out on the platform when the train was moving as I deemed it to be unsafe. The train stopped ahead in the middle of two station to get to the yard and the only option I had was to jump off and walk back to the station. I jumped on to the tracks from the train and walked back to the station on the tracks. The train is at a height of about 7 -8 feet from the ground. I jumped landing on my feet. My leg did not twist nor did I sprain my foot and ankle. I was very confident in walking back on the tracks and not once did I stumble or falter in my walk.
In summer of 2007 I went on a family holiday to Hong Kong, Bangkok and Pattaya where I participated in various outdoor activities including various rides in amusement park, parasailing and sea bed walking without any difficulty. I enjoyed this and did not miss out any fun activity. I could enjoy Disney-Land to the fullest without having any fear and physical limitations.
In May 2009 I had been invited to a friend’s elder brothers wedding in Navsari which is in the State of Gujarat. I went for the function alone by train. This was my first trip alone after my stroke. It was also my first long distance train journey alone. I was very scared and apprehensive about being able to get down on the station and also get my luggage out. But I managed just fine. I was also able to get dressed up in all the wedding finery all by myself.
Recently in May 2010 I attended a two week study seminar on International law in Delhi. This was my first long trip alone without my parents. Before this I had been to Goa and Aurangabad for 5-6 days trips from my law school. It had always been a dream of mine to live independently away from home and during this Delhi trip I have developed the self confidence of living alone including taking care of myself completely. I am now also able to wear my contact lens on my own.
Now my hand movements have become very quick and automatic. I don’t have to think to do any bilateral actions. They just come naturally. In the monsoon opening up my umbrella with two hands at the first drop of rain became automatic. I can also catch a tray full of hot tea cups with both my hands and bring it out from the kitchen to the dining table. I carry big plates and also huge utensils with both my hands.
I must share that Dr. Vasa is not only a world class neuro-motor control scientist but also very kind and full of love & compassion. I have been extremely lucky to find such a very rare person indeed! Dr. Vasa has been treating me and so many other deserving patients with utmost care and guidance. I was very amazed and astounded to learn that Dr. Vasa has not charged any children and other deserving patients from the beginning of her career and has been kind enough to treat me as a child.
I am very confident under guidance of Dr. Vasa I will be achieving complete normalcy and I need to stay focused, put in the required hard and intelligent work.
My London trip
July 2011:
Today is a dream come true for me as I am about to embark on a journey which I could not even imagine a few years ago because of my physical challenges. This day has come only due to You Dr. Vasa. Thank you Ma’am, for everything, for my new life.
The first time I heard about LSE SUMMER SCHOOL was in my 12th grade when I saw a poster of it in my college. I remember wishing to be able to do it but unsure because of my physical challenges and whether if my parents would agree for me to be living in a foreign city alone. Though I did keep this in the back of my head I did not actively pursue it.
After Class 12, I took admission in Government Law College, Mumbai to pursue studies in law. Little did I know that my first year of GLC would be full of independent trips taken by me for study and work purpose. I undertook three trips, going to Goa, Aurangabad and Delhi in that year. My longest trip was to Delhi for two weeks where I attended a course on International Law. By this time I had travelled long Distance alone by air and even overnight by train. After my Delhi trip I became more and more confident of my own self and also of traveling alone.
Then I happened to meet an old economics professor of mine from junior college a couple of months ago who had attended LSE Summer School and really enjoyed the experience and recommended it to me. LSE is one of the foremost universities in the world when it comes to legal education and thus it was a dream to be able to study here. I then found out all the details and saw that it was a three week course. Also the number of courses which were present was huge and over-whelming.. The options in my chosen field, Law were also extremely interesting. I was immediately drawn to the course “Commercial Law” as I feel it is one of the more challenging areas of law in a globalized world.
I spoke to my parents regarding this and they supported me wholeheartedly. They are extremely supportive of me in all of my dreams and decision and I remain eternally grateful to them for being themselves I was nervous excited and most of all high on the feeling that I would be studying at one of the premiere universities of the world and also living on my own.
After applying to the university and then also being selected made me believe a little that my dream might just turn into reality!!!! I selected an accommodation which was on campus itself so that I would get most of my LSE experience. Preparation started and went on in such a blur that sometimes I did not really believe all that was happening. All the shopping and packing was an experience in itself.
I am nervous and excited but more than anything I am really looking forward to be living the life that I’ve been dreaming for such a long time now!!! All of my ambitions and dreams have only come to reality because of YOU, Rajul Ma’am! Thank you so much! You have truly inspired me to think beyond my limitations and aspire for a higher orbit. I will be forever indebted to you!
Regards,
Parnasi!
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