HugHug https://ramgvallath.com/wp-content/uploads/2021/08/Hug.jpg 635 454 ramgi@user ramgi@user https://secure.gravatar.com/avatar/ce46ffe3044831cca29cedcddd6c594f?s=96&d=mm&r=g
The Free Treatment for All Troubles
There is an easy-to-administer, highly effective way to inculcate several positive traits in children as they grow up. In fact, this simple treatment, if administered regularly, can help children to grow up to be smarter, healthier, happier, and more resilient. It can develop self-confidence, reduce anxiety and stress, improve risk-taking ability, improve collaborative skills, and even build better immunity. By now, I am sure you are willing to pay serious money to get this treatment. Well, you don’t need to. I am talking of a simple hug. Many hugs actually.
Yes, hugs, especially from the parent, can have remarkably positive effects on children.
It improves their cognitive development. Studies from orphanages show that children who aren’t touched or held much grow up with impaired cognitive abilities. On the other hand, children who received regular gentle hugs or touch developed better cognitive skills.
It helps in growth. Hugs release a hormone called oxytocin. One of the effects of oxytocin is to enhance physical growth.
Reduces anxiety and stress. Cortisol is called the stress hormone. Hugs can actually combat cortisol and this in turn reduces stress and anxiety.
Improves immunity. The reduction in stress has an additional benefit. Stress impacts the body’s immune function negatively. This opens up the body to more infections. Reduction of stress ensures that the immune system function isn’t impaired. This is why hugs can improve immunity.
Increases resilience and happiness. The same oxytocin can help improve optimism as well as self-belief. These are two essential ingredients of resilience and happiness. So the more you hug your children, the happier and more resilient they become.
Hugs help in raising children who feel secure and supported. Paradoxically, it is people who feel secure who are willing to take risks in life, such as trying out new ways of doing things or treading an untrodden path. Thus hugs can improve risk-taking ability and innovation.
So what are you waiting for?? Grab your kids and hug them. Be they 1 year old or 21 years old.
Be BoundlessBe Boundless https://ramgvallath.com/wp-content/uploads/2021/08/Be-Boundless-1.jpg 635 454 ramgi@user ramgi@user https://secure.gravatar.com/avatar/ce46ffe3044831cca29cedcddd6c594f?s=96&d=mm&r=g
Be Boundless is a philosophy. A philosophy of life that I have been unearthing for the last eight years. One could say that fate violently shoved me (kicked my backside might be a more appropriate term) in the direction of this philosophy about a decade back. That is when I was completely paralysed by an autoimmune disorder. Even though medication and an expensive clinical trial in the US made my condition better, I had to give up my corporate dreams — that of becoming the global CEO of a Fortune 500 company by the age of 45. Not a ridiculous dream, I can assure you. With my blue-chip credentials from IIT Madras and XLRI and my phenomenal career growth that saw me become the youngest telecom circle head in India at 34, I could have been well on track for that.
The sudden shattering of all my dreams meant I had to find coping mechanisms. So as not to be overwhelmed by disappointment, despair, and dread. Disappointment at having my dreams shattered, despair at the physical challenges I face every day (I have fallen about 50 times in the last 8 years and have had about 10 fractures) and dread at the thought of impending immobility that could happen any day.
‘Being Boundless’ emerged in part as a coping mechanism. After all, every dark cloud has a silver lining. Except that in my case, the silver lining expanded prodigiously and soon swallowed up the cloud and has gone on to fill my life with the brightest light. Following are the pillars of the Be Boundless philosophy that I practise…
I am completely happy with myself. I constantly think I am awesome. And I try to do whatever that makes me happy and avoid dwelling on thoughts that make me sad, anxious, worried, stressed, or angry. In fact, I find happiness in whatever circumstance I find myself in.
I try and make others around me happy. I go out of my way to make others happy. I invest time and effort in adding value to other people’s lives. By the way, this is also the best way to keep myself happy. Happiness is one commodity that the more you give, the more you get.
I try and do my best for the larger society by focusing on how I can leverage my strengths to help the larger society.
And last but not the least, I immerse myself in whatever I do and maximise every minute of my life, without wasting my life on anger, jealousy, anxiety, regret, or fear, as much as possible.
So, how does one build these traits? How does one develop the mindset to be like this? And what are the benefits of being like this? These are some of the aspects I hope to cover in these blogs, so that you can also truly Be Boundless.
Hope for Multiple Sclerosis Patients in IndiaHope for Multiple Sclerosis Patients in India https://ramgvallath.com/wp-content/uploads/2021/08/Hope-for-Multiple-Sclerosis.jpg 635 454 ramgi@user ramgi@user https://secure.gravatar.com/avatar/ce46ffe3044831cca29cedcddd6c594f?s=96&d=mm&r=g
Launching HSCT for Multiple Sclerosis at BLK Super Speciality Hospital, New Delhi
It has been close to six years since I had a rebirth, when my body was literally rebooted. Six years since I shrugged off the debilitating clutches of a rare and incurable autoimmune disorder. Today, I am glad to say that I have managed to facilitate the process that might bring in a cure for hundreds of Multiple Sclerosis patients in India, who have lost hope. It is my hope that it will eventually bring about an effective treatment to patients suffering from other autoimmune disorders such as CIDP, Lupus, Systemic Sclerosis, Rheumatoid Arthritis, etc. You might have already read my blog post on how I was derailed by a crippling autoimmune disorder, CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) at the height of my extremely successful career. It was a clinical trial conducted by Dr Richard Burt, head of immunology at Northwestern Memorial Hospital, Chicago that gave me my life back. The treatment involved a Haematopoietic Stem Cell Transplant (HSCT) to regenerate the immune system after destroying it using Chemo, Rituximab, ATG, etc. It gave me a new lease of life. My body finally stopped attacking itself. It also helped me reinvent my life as a bestselling author, motivational speaker, startup co-founder, and science editor. Most importantly, I discovered that when one goes through extraordinary difficulties in life, one becomes very compassionate. I became obsessed with helping others – especially people suffering from physical or mental challenges be it children or adults who require counselling and motivation. I started seeking out people whom I can support. Today I am the India liaison for the GBS/CIDP foundation and every week, I come across two to three people who need support. I help them to the best of my abilities. But my overriding dream has been to convince hospitals in India to adopt Dr Burt’s HSCT treatment, so that it can be accessible to thousands of patients. For the last five years, I have been reaching out to various hospitals in the country to adopt this treatment. Unfortunately, time and again, I came up against stone walls. Not one to be easily discouraged, I continued my search. I would talk about my dream during my motivational talks in corporates, hoping that someone in the audience would have some hospital contacts. Finally, when I was addressing a global leadership team of Dr Reddy’s Laboratory, I hit gold. Rebu Ninan, one of the employees, promised to use his contacts to connect me to various hospitals. He was true to his word and within a few months, connected me to Dr Dharma Chaudhary, the head of Haematology at BLK Super Speciality Hospital in Delhi. I was delighted to find out that Dr Dharma was keen on rolling out the treatment for MS. He also wanted to do it the best way possible. He was happy to take the support of Dr Burt to ensure that his time-tested protocol and the experience Dr Burt had garnered treating hundreds of patients was utilised for launching the treatment in India. Yesterday, after months of email and telephonic discussions from halfway across the globe, we had the pleasure of having Dr Richard Burt in Delhi, addressing some of the top neurologists, haematologists and other doctors in Delhi. The treatment is now officially on for MS. Dr Burt’s data indicates that the treatment reverses the condition in over 80% of RRMS patients. This will bring succour to hundreds of patients who have otherwise lost hope. I also hope this creates a domino effect where many more hospitals adopt the treatment. After that, it will only be a matter of time before these hospitals start similar treatments for Lupus, CIDP, Rheumatoid Arthritis, Systemic Sclerosis, Scleroderma, etc. I have helped set in motion a tide of hope that will spread wings as time goes. I am a firm believer that every downturn can be converted into an opportunity and eventually into a success. In this case, surely my downturn seems to have transformed into a great success. Those interested in understanding more on the treatment can contact me on my mail ID: email@example.com. Please share this post so that it reaches as many people as possible. For a more detailed description of my disorder and the treatment, and how I managed to reinvent my life, please read my book From Ouch to Oops.
I Am Unchallenged
RamG: Parents!RamG: Parents! https://ramgvallath.com/wp-content/uploads/2021/08/RamG-Parents.jpg 635 454 ramgi@user ramgi@user https://secure.gravatar.com/avatar/ce46ffe3044831cca29cedcddd6c594f?s=96&d=mm&r=g
One month has passed since my father left us. The last three months, two months of his illness and then one month after his departure, have been the toughest in my life: and believe me, I have faced way more than my share of tough situations in life. It is only when a parent passes away, that you realise that you have just lost the most precious possession you ever had. The deep void that settles in your life is unlike anything you ever experience, the grief is heart-rending. After all it is to your parents that you owe everything in life – including life itself. It is they who teach you everything,starting with the first steps you take, to the first words you utter, to every value and belief that you possess. It is to them you owe every morsel of food you eat and the education that made you someone. My mind has been reliving every wonderful moment with my father the stories that he told, painstakingly ensuring that I understood and internalised the morals and messages he couched in them; the innumerable hours we (the four of us) spent together repairing our old second-hand car, then painting it ourselves, building a car shed ourselves; creating working science models for our school projects. All these demonstrated that every problem can be solved and this nurtured my inculcating problem-solving skills.I fondly remember the many times I accompanied him to his workplaces and watched in wonder how a great leader manages his people. Not just that, but the many hours he spent recounting to me stories about his work. In the process, imparting 35 years of extra professional experience to me by teaching me how to convert every job into a fun challenge and every uncertainty into an opportunity. As I became an adult, I was pleasantly surprised when the knowledge transfer and sometimes value-transfer went both ways, that is he would actually seek my advice on professional matters and sometimes change his own deep-rooted beliefs because he saw merit in my arguments pointing out fallacies in his belief. Of course, this was another lesson to me that one should always be open to learning, however painful and contradictory to one’s existing beliefs the lessons are, and whomever the lesson might come from. And then came a time when, to my delight, every time I told him how much he inspired me, he would tell me in turn how much I inspired him. I believe I am a dutiful son. More importantly, I love my parents unconditionally and wholeheartedly and I never hesitated from telling them this truth, time and again. Almost every day, I would spend at least half an hour to one hour speaking to my parents on the phone. I made it a point to tell my father and mother how much they mean to me, and how much I loved them, each and every day. But let me tell you, this is not nearly enough to stop the immense feeling of regret and guilt when a parent ultimately leaves. My mind is filled with thoughts of how much more I could have told him, how much more time I could have spent with him, and what all I could have done to postpone my father’s departure. And this is me, a person who has mastered the art of never thinking of what could have been. I lie awake at night, talking to my father, telling him how much I love him. I have discovered that when it comes to powerful emotions, scientific rationality flies out of the window and I find myself hoping against hope that my father’s spirit can hear me. When I speak to my brother, I know that he is going through the exact same feelings. But both of us are united in one more way, we will move heaven and earth to ensure that we will take the greatest care of that most precious asset that my father has left in our care – our mother. Theirs was a 53 year long romance: a romance filled with love and respect, of giving, sharing, and of taking every step together. The next generation in me would sometimes baulk at the division of duties in their marriage and also how much my father protected my mother from the day-to-day management of life. She still cannot write a cheque, operate an ATM, or even cross the road herself. But deep down inside, I know that they had reached their own unique equilibrium, one of perfect harmony and love. Neither of them would go out anywhere on their own, neither of them had a friend who was not a shared friend; neither of them would eat a meal on their own or watch a TV serial on their own. If they went out to a restaurant, they would always share a dish. If that was not enough, they would order a second dish and share that too. So now when I look at my mother and see how she is able to cope with her grief with so much dignity and courage, my heart swells with pride, at the same time it awakens my grief. For I know that her grief must be equal to mine amplified infinite times. I grieve as much for her grief as for the loss of my father. In my quest for a balm to assuage my grief, I have hit upon a thought that I would like to share. Our parents will always live within us. Genetically, it is their exact set of DNA that exists within us, nothing more, nothing less. And more importantly, every personality trait and value we have formed is a result of what we have learned by observing our parents. So while we mourn their loss, we can also focus on nurturing those values, polishing them up, and passing them down to the next generation. To all my friends whose parents are alive, my humble request is this : each of you must be having a unique relationship with your parents, speak to them today, right now, and tell them just how much you love them and how much you appreciate everything they have done for you. Then repeat that action every single day of your life. You might just be able to minimise your regret when the time comes. To read more about my father and his influence in my life, read my humorous, yet inspiring autobiography From Ouch to Oops.
RamG: Winning at Love AllRamG: Winning at Love All https://ramgvallath.com/wp-content/uploads/2021/08/RamG-Winning-at-Love-All.jpg 635 454 ramgi@user ramgi@user https://secure.gravatar.com/avatar/ce46ffe3044831cca29cedcddd6c594f?s=96&d=mm&r=g
I just spent two traumatic weeks in Rajagiri hospital in Cochin.This time I was not the chief guest of the proceedings. It was my dad who was admitted there with cardiac failure. He was brought to the hospital with a urinary tract infection but with further examination,his doctor had to immediately place him in the ICU. I am extremely close to my parents. My father has been an inspiration to me all my life, having instilled in me a love for science through many experiments conducted at home and also having ignited my sense of humour by reading out and translating P G Wodehouse stories into Malayalam for me at a very young age. It was from him that I learned the importance of tenacity and people skills through relationship building. I have learned the art of converting every downturn into a success by observing him. He was always a larger-than-life figure for me. My mother, on the other hand, is the epitome of love. With her, I share an amazingly easy relationship. As a sickly child, I spent many nights struggling for breath. It was my mother who kept vigil all night, warming my chest with hot towels and cleaning me up, sometimes a dozen times in 24 hours after bouts of vomiting. Over the last few years, I realised that the best way to keep them happy is by calling them every single day and speaking to them at length, sharing in their daily lives. I would call them every day at around 8.30 and speak to them till 9.15. With my dad, I would discuss my speaking assignments, my science magazine, my plans for touching a million lives positively, about our startup, etc. With my mom, it is a completely different story. We would talk about inane stuff and end up laughing non-stop for about 20-25 minutes. One call with my parents and I would end up getting inspired, getting enveloped in love, getting my daily dose of advice that would lighten my heart. So when dad went through a near fatal crisis, it was a huge shock. But I was lucky that the flexibility in all my different activities allowed me time to spend 12 days in the hospital along with mom, looking after dad. Meeting him twice a day in the ICU for the first five days, and motivating him. Once he got into the room, feeding him, pushing him to start walking, helping him to the bathroom, helping clean him, etc. I was incredibly lucky that during these 12 days, I spent so much time with my mom (Amma) and got a chance to observe her closely, maybe for the first time as an adult. And I was totally amazed. To me, hitherto she had appeared to be fairly scatterbrained and always dependent on my father for taking any decision or even for any day-to-day activity. For instance, she didn’t know how to operate a bank account, how to draw money from an ATM, how to use a credit card or even how to cross a road. So protected was she by her husband, well meaning and obviously from a different era and mindset. So I had expected Amma to be in pieces when dad was hospitalised. Especially on day three when the doctor informed us that dad had taken a turn for the worse and anything could happen. Over the years, going through many downturns myself, has taught me how to handle tough situations, by keeping the mind firmly on the solution and not on the problem. Even then, I couldn’t help but dwell on the worst possible outcome and almost ended up in tears. I thought Amma would break down completely. But she surprised me. Even though she understood the full import of what was happening, she bounced back fast. I realised that throughout the ordeal, she was tapping the biggest strength that she ever had – love and compassion. Every single time she stepped out of the room, she would make a bunch of friends – from the nurses who took care of our floor, to the sweepers and cleaners to the security guard to the lift operator to the cafeteria server, each and every person she would enquire after them, prioritising their well-being in the moment, creating an envelope of warmth everywhere she went. By day two, all of them would be, in turn, smiling at her and asking after her and dad’s health. She must have made about 25-30 friends in those 12 days. With her, it was not a superficial act. She felt deep compassion for each of them. I realised that she never felt alone in the world. She had a huge family everywhere she went. For me, who delivers talks on creating positivity and happiness, this was not only an affirmation and proof of the efficacy of my messaging, it was also a lesson in how to take it to the next level. Thus, at the age of 73, my mother taught a valuable lesson in motivation to me, a 48-year-old, successful motivational speaker and compulsive gyan-giver: the lesson that deep compassion and acts of kindness always keep the giver happy and positive. I guess it is never too late to learn, if you follow the time-tested scientific method of observation, collection of data, hypothesis, experiment, and proof. You can also learn from anyone and any incident if you keep your eyes and mind wide open.
RamG:My Struggle With CIDP (Episode 2, Season 1)RamG:My Struggle With CIDP (Episode 2, Season 1) https://ramgvallath.com/wp-content/uploads/2021/08/Episode-2-Season-1.jpg 635 454 ramgi@user ramgi@user https://secure.gravatar.com/avatar/ce46ffe3044831cca29cedcddd6c594f?s=96&d=mm&r=g
You might have read my earlier blog on how when I was 34, at the peak of my career and on top of the world, I was struck down by CIDP — a crippling autoimmune disorder. This was caused by my white blood corpuscles, my immune system, going rogue and attacking my own body, specifically my peripheral nerves. You can read the details here E1S1
If you already have, please skip the next three paragraphs. The story so far… For those who hate to click on hyperlinks, here is the story in a nutshell: CIDP gradually wasted away my muscles, weakened my body, destroyed my balance, making it difficult for me to walk and stand. It was almost impossible for me to perform mundane tasks such as buttoning my shirt and eating with my hand, etc. Normal medications – IVIG, Steroids (prednisone) Azoran (Azathioprine), etc., had no discernible effect in terms of improving my condition. Seven years after being afflicted, I enrolled for a clinical trial of a hematopoietic stem cell transplant (HSCT) procedure being conducted in the US. In 2011, at the age of 42, I went for the treatment. The process involved removing the blood stem cells (Hematopoietic Stem Cells) from my blood, then rebooting the body by first killing all the treacherous WBCs using chemo, Rituximab, ATG, and then injecting back the removed stem cells. The theory being that the new WBCs would not be corrupted by the rogue memory of the earlier lot and the body would begin to heal. The treatment substantially reversed my condition, albeit not fully. After the treatment, over the next few months, I worked out like a madman, building back my lost muscles. By the end of one year, my balance was substantially better, the strength in my hands, arms, and legs were hugely improved and I was off all medications. Now here is the current update, i.e., season 1, episode 2. It has now been five years since I got the second lease of life. In these five years, I managed to completely reinvent my life – I published two books, became a bestselling author, became the cofounder of an exciting start-up, launched a science magazine for school teachers, and became a much-sought-after motivational speaker for schools, colleges, and corporates. My health no longer permitted me to become the CEO of a Fortune 500 company, but it did not stop me from dreaming of even bigger goals. I firmly believe that there is no point crying over the untimely demise of my successful corporate career; one has to accept reality and maximise it. So I have filled up every moment of my life with positive things to do. I have a new purpose in life – to touch a million lives positively. This makes me incredibly positive and ridiculously happy, always. It was good that I learned the art of focusing on solutions instead of letting the problems take over my life, because three years after the stem cell transplant, CIDP started creeping in again. Nowhere near as bad as earlier, but I started feeling some deterioration in strength and balance. As my body started slipping downward, I started the quest for fresh solutions. I underwent one round of IVIG again – it cost Rs. 6 lacs (thankfully covered by my wife Jayu’s insurance). This arrested the downward trend. After two months, I had two courses of Rituximab – my favourite rat extract! I also started on two grams of Cellcept every day. My condition seemed to stabilise, albeit at a slightly lower level than what I had reached after my stem cell transplant (HSCT). My discussion with Dr Burt also indicated that some percentage of patients who undergo HSCT do get a mild relapse, but they stabilise back and have mostly gone off medication again. Determined to leave no stone unturned for a complete cure, I went for a two-week naturopathy retreat at Dharmasthala – a six-hour drive from Bangalore. My heart was filled with hope. On the fifth day, I slipped on the oily floor, fell down and fractured my wrist and my knuckle. Calling up Jayu (my wife) and telling her I was heading back was tough; I could barely control tears of self-pity and frustration. But I have the ability to try and always focus on the way forward, and within five hours, I was on the long, 6-hour drive back home with my friend, Srini (whose treatment had come to an early closure thanks to me) driving the car. We completely enjoyed the drive and ended up singing Hindi, Tamil, and Malayalam songs non-stop all the way. By the time I reached Bangalore, I was ready to take on the world and my CIDP. Unfortunately, the fracture set me back in every way – since it was the right hand, I couldn’t type; I found walking more difficult, since one arm in cast created an imbalance and the last thing I wanted to do was trip and fall again. However, I continued to attend the office. I am sorry to say I ignored my workouts and walks during the two months that I had the cast on and it took me a couple of months after that to get back to a routine. I started experimenting with diets. I had heard that giving up grains and sticking to a protein heavy diet (paleo diet) helps autoimmune conditions. Dr Terry Wahls in the US had cured herself of Multiple Sclerosis by following this paleo diet. I tried the Wahls protocol. It did not work. I started taking regular yoga lessons. This seemed to help, as slowly my balance started improving again. This was when I came across a book — The Autoimmune Solution — by Dr Amy Myers. She was again a victim of an autoimmune disorder, but had managed to cure herself of the disorder with a regimen of supplements and strict diet. The idea was to help heal the gut, reduce toxins, cure yeast overgrowth, and reduce inflammation. Many of the supplements were not available in India, but when Jayu went to the US for a conference, she brought all these supplements from there. Thus, seven months back, I embarked on one of the toughest diets I have ever tried. What I couldn’t have – all grains (wheat, refined flour, rice, oats, quinoa etc.); potato, tomato, zucchini, brinjal, tapioca and other nightshades; all types of sugars, honey, sugar-free, jaggery; all dairy products and eggs; all legumes and all types of lentils; all peppers except black pepper; and all nuts and seeds. You might well ask what on earth I could have. What I could have was sweet potato, green leafy vegetables, cauliflower, broccoli, cabbage, coconut, all fruits, meat, poultry and seafood. Being one who loves curd (yogurt), I also innovated — created curd from coconut milk. I also had tonnes of supplements in the first month to heal the gut, improve detoxification, reduce yeast overgrowth, contain inflammation, etc. At the end of one month, I could feel a discernible difference. The good effect was that I lost 10 kilos in 4 months and 2 more kilos subsequently. My balance started improving. Initially, I put it down to weight loss. However, it soon became apparent that it was not just the balance, but also the overall strength that was improving – in my legs, my arms, my fingers, etc. Over a period of time, I slowly reintroduced tapioca, tomato, potato, chilli (peppers), and an extremely limited quantity of rice and lentils (once a week). I pressed the advantage home and stepped up my exercising: now, I workout for 90 minutes in the gym every alternate day and every other day, I do 70 minutes of yoga in the morning and go for a walk in the evening. Over the last 2 months, the distance I walk has gone up from 2.5 km to 5 km. The speed has improved from 15 mins/km to 11 mins/km. I feel on top of the world (of course, no surprise there, since I never left the top of the world, even in the worst of times). I have realised that holistic methods of treating disorders are as effective as they are unexplored and unprescribed by specialists. I have also been dabbling with meditation techniques and intend to explore that. I don’t know how much my body would continue to heal; maybe this is the best it will ever get. But I can assure you, it will not be for lack of trying. So, by actively seeking solutions, taking risks, and experimenting with myself, I managed to identify two outstanding treatments – stem cell transplant which got me back from 0% functionality to about 90% and, now, the Myers Method, which got me back from the 70% functionality I had slipped to, back to 90%. Would I recommend HSCT to others suffering from autoimmune disorders? Undoubtedly and unhesitatingly. It gave me my life back. But I would also tell them not to stop there, but try and address the root cause, embarking on a journey of holistic healing, regular exercise, and yoga. Most importantly, I would request people to maximise happiness and find a positive and energising purpose in life. I will share more on my experience with this in my next blog. Do share these with as many people as you can. You might be saving someone’s life. If you or your near and dear are suffering from an autoimmune disorder, or are going through a crucible experience in life, I will be happy to be a sounding board and try my level best to help you find positivity. Do reach out on my email ID firstname.lastname@example.org You can also read my bestselling book From Ouch to Oops. It is my life story and I promise you it will make you laugh. But I also promise you that it will make you want to embrace and enjoy life. To buy, click here, From Ouch to Oops.
My struggle with CIDP- an autoimmune disorder (Season-1, Episode-1)My struggle with CIDP- an autoimmune disorder (Season-1, Episode-1) https://ramgvallath.com/wp-content/uploads/2021/08/Season-1-Episode-1.jpg 635 454 ramgi@user ramgi@user https://secure.gravatar.com/avatar/ce46ffe3044831cca29cedcddd6c594f?s=96&d=mm&r=g
The pictures taken before my treatment and after six months of intense body rebuilding post my treatment.
This post was originally written in my blogspot blog on 1st April, 2013. I am sharing this now so that I can give an update in episode 2. I was 33 and on top of the world when the niggling worry started. It was nothing serious in the beginning. I found that my hand would tremble when I was holding up a spoon, a plate, a glass of beer, etc. My original self-diagnosis was that this was caused by work-related stress. When one becomes a country manager at 31, apart from being on top of the world, the by-product is stress. And when at 33, I had moved into a telecom operation as head of sales and marketing, the effect was approximately like moving from the frying pan into the fire. But stress did not explain the loss of balance I used to face while climbing down stairs, which was a second symptom that had started developing. But being very busy climbing the corporate ladder (I became one of the youngest COOs in a telecom operation in India in a couple of years), I ignored the symptoms. Finally, when I did meet a doctor, he examined me and said I was perfectly all right. In the next two years, the condition quickly worsened. My fingers started losing their strength and it also became difficult for me to climb stairs. The COO of a state telecom operation was a reasonably high profile position. I would be invited to various events and would feel a cold clammy feeling in the pit of my stomach if this involved climbing up onto a stage. I would be petrified of falling and would pray to God every step of the way. (Imagine being the chief guest at the Cochin Naval Ball and spending the whole time worrying about how I would climb up the stage instead of admiring the beauties I was judging.) I also started finding it difficult to do anything which required fine motor coordination, like putting on buttons. I had to stop driving, an activity which I loved. Over the next four years, the condition steadily worsened and I had to change roles so that I could still manage to deliver on my job. In the meanwhile, I had a couple of more wrong diagnoses from doctors and was told that the condition was genetic and untreatable. It was then that my uncle Dr Balakrishnan, a renowned doctor, helped me set up an appointment with the HOD of neurology at Amrita Institute in Cochin. Dr. Ananthakumar examined me and indicated that the condition was not congenital but was an acquired disorder called CIDP. To be 100% sure, he did a nerve biopsy. While waiting for the biopsy result, one day I contracted a viral fever. This triggered an acute case of the condition and I was laid up for about nine days. I could not lift my hands even 1 cm, sit up or even talk. Luckily, an angel by the name of Dr Monica Thomas, whom I had never met before and who was referred to us by Dr Ananthakumar, took the trouble to come all the way to my house after a full day’s work. She took one look at me and confirmed the condition as CIDP. She got me admitted to a hospital. CIDP — Chronic Inflammatory Demyelinating Polyneuropathy — is an autoimmune disorder. My own immune system was attacking my peripheral nerves and they were losing their conductivity. This in turn was making my muscles useless and over a period of time, the muscles were wasting away. For the first time in seven years, there was a tangible condition that I could fight. The standard treatment for the condition was to take an intravenous medication called IVIG. A full course was 2g/kg of weight which in my case worked out to 160g. This had to be taken over five days. It cost Rs.6 lacs!! But at the end of the five days, I was feeling much better. Over the next couple of weeks, my body was on the slow journey towards recovery. I was better than I had ever been in the past five years. I was on top of the world. I ran up 10 flights of stairs to my office, cooked pizzas for my kids, and buttoned up all the shirts with a vengeance! But in 45 days, the condition came crashing down again. The effect of the magic potion had worn off. The doctor had not warned me of this. For me, who thought the whole issue was behind me, this came as the rudest shock. I met the doctor again. He suggested I start on steroids. Steroids would suppress my immunity, and this would lead to an improvement in the condition. He also recommended another dose of IVIG. This time I took a fifth of the first dose, since we couldn’t afford to spend on a complete dosage. Over the next 3 years, I took IVIG once every two months (the truncated dosage due to financial reasons). The effect kept waning and I had to take it even more frequently. The dosage of steroids had to keep increasing from 30mg per day to 40, 50, 60 and, finally, 80. I put on about 14 kilos and bloated up like a balloon. My eyesight started fading (an effect of the steroid) and I finally had to undergo a cataract operation. In spite of all the medication, the condition steadily worsened. Before the condition, I had always walked with a spring in my steps. Now I could barely lift my legs. I found it impossible to lift even small weights. My wrist started flopping – it lost all articulation. My left foot started dropping – the ankle muscle stopped responding. I had to lift the leg up high and place it forward to avoid tripping over a flopping foot. It became impossible to button up my shirts. When travelling, I had to wake up at 5 am for an 8 am meeting, since it would take me 90 minutes to put on five buttons. Finally I had to stitch special shirts with concealed press buttons with dummy buttons stitched on the outside. The worst was when I had to go to the urinal. It would take time to find the zip with my nerveless fingers, while my bladder was screaming at me to go! And often, after the job was done, it would take as much as 10-15 minutes to zip back up. Through all this, there were a few important rules I created for myself.
- Never ever think of what could have been.
- Always be cheerful and be the provider of cheer – at home and at work
- Actively seek solutions instead of moaning about the problem
- At work, always do more than what is expected of me
- Thank God every day for a wonderful family, great friends, relatives and above all, for my unconquerable spirit.
I I would keep pushing myself to walk, exercise, do yoga, etc., while continuously searching for solutions on the web. Unfortunately, fate seemed to think I needed a few more knocks. At work, I had continued to take on extra responsibilities and work long hours, even though I could barely walk (I had to use a crutch) or use my fingers and hands (typing was a laborious process). One fine day, I got sacked for the unethical behaviour of some subordinates four levels below me. Life couldn’t get worse. Fortunately, I had the ability to seek solutions instead of wallowing in problems and quickly found myself another job. Also on one of my internet researches, I came across a clinical trial that was going on at Northwestern Memorial Hospital in Chicago. I reached out to them and the nurse got back immediately with all the details of the program. We also heard from her that the doctor, Dr. Richard Burt, the head of the Division of Immunotherapy and Autoimmune Diseases (DIAD) at Northwestern was slated to come to India for a talk. We attended the talk and he was kind enough to have dinner with us. He was as humble and down to earth as his achievements were lofty and life-changing. Over the years, he had treated many autoimmune disorders for which there were no real cures. These included Multiple Sclerosis (MS), Diabetes, Lupus, Crohn’s, Rheumatoid Arthritis, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Pemphigus, Dermatomyositis, Devic’s, Myasthenia Gravis, Polymyositis and Scleroderma. He had given life back to many patients who had lost all hope. Jayu (my wife) and I discussed and decided it was worth going for this. The procedure was ‘Autologous Nonmyeloablative Hematopoietic Stem Cell Transplant’ — a mouthful, I agree! But what it meant was usage of one’s own blood cell-producing stem cells to regenerate one’s blood cells. The term non-myeloablative meant the dosage of chemo was not very aggressive. The whole evaluation and treatment had to be in Chicago, spread out over 10 weeks.
For Jayu and I, the trip was, in a way, a nice holiday too. We enjoyed our stay in Chicago, right in the middle of the Magnificent Mile. Even though there was so much uncertainty, it was also a time of intense hope. The fact that my classmates, Manish and Radhika and another classmate Sridhar and his wife Vasudha made every effort to make us completely comfortable in Chicago was an immense help. Skyping with our parents, children, and family also kept us connected to loved ones, their best wishes, and prayers. The first two to three weeks were for evaluation — to make absolutely sure that the condition was CIDP. This was followed by mobilisation — where a dose of chemo was injected into the body to stimulate production of stem cells. About 10 days later, sufficient quantities of stem cells were then harvested and kept aside. Then four weeks later, the actual treatment started. This included injecting chemo and certain other substances into the body to completely knock out the entire immune system. After this, the stem cells were re-injected into the body and within about ten days, I was discharged. The staff at Northwestern was amazing. The nurses were the most professional I had ever seen in my life. Even in the hospital, the doctor was considered to be a miracle worker. But more than anything, he was a wonderful person: sensitive, empathetic, and extremely knowledgeable. My last four days in the hospital, I could start feeling my body responding. My will, which had been long shackled inside an unresponsive body, exulted. I embarked on a rigorous exercise routine. Back home, I spent the next year setting myself a blistering target to recover my lost muscles. I created a target sheet with daily increasing targets for the next six months for 28 different muscle workouts. Then, every day I pushed myself to do better than the target. The fact I was writing my first book — Oops the Mighty Gurgle — gave me a huge mental push. The book was so wacky, funny, and totally in the realm of the absurd that writing it kept my spirits soaring high. I jokingly tell my friends that it was a mix of the chemo, the rat and rabbit extracts that were pumped into me that made me write such a crazy wacky nutty novel. You can read it here (Caveat: be prepared to laugh your backside off!) Oops the Mighty Gurgle. I have been trying ever since to get some of the major hospitals in India interested in the treatment and collaboration with Dr. Burt so that many more people could have access to this life-changing treatment. I have run up against walls, but will not stop trying. In the meanwhile, I would like to spread awareness about this treatment to as many people as possible. If they can afford the treatment (it is expensive), they should consider this seriously. Today, I have almost completely regained most of my motor abilities. I can button up my shirts, drive a car, lift weights, travel alone, climb up steps without holding on to railings and can lead a pretty much normal life. I still can’t run or type very fast. My handwriting still sucks. But I am, to use slang, rocking. I am on my second book, am consulting in the education domain, and give motivational talks based on my life’s experiences. I continue to thank God for my wonderful wife, my lovely kids, my relatives, my friends, and my never-say-die spirit. But most of all, I thank God for Dr.Richard Burt and the wonderful work that he is doing, saving hundreds of lives every year.
I can be contacted on my email ID, email@example.com, and will be delighted to extend whatever help I can to anyone who is suffering from any autoimmune disorder or facing any other challenges, physically or mentally. I have subsequently completed my second book, From Ouch to Oops. It is my life story and it is meant to help people convert every downturn into a success. It is also humourous and I promise it will make you laugh a few times, even while making you think deeply. You can buy it here, From Ouch to Oops.
I Am Unchallenged