If you have cancer, you know that you will either die or go through chemotherapy and get well enough to go on with life. Talk to Madhulika and she will tell how, if she had a choice, she would have preferred cancer. You tend to agree with her because she, and a growing number of Indians, are being struck with a hitherto unknown disease called Multiple Sclerosis which basically cripples your nerves. It’s origin is unknown and a cure, even medication, has defied intense global research. Nidhi Mittal tells you how this devastating, degenerative and yet death-defying disease is fast catching up
If you heard her singing from a distance, you would be convinced that Geeta Dutt had come back to life; her bold strokes would often make a canvas come alive; parties never really took off without her as she would be the showstopper on the dance floor. Her laughter was as infectious as her personality was vivacious. Back home she was an uncomplicated, simple girl who prayed religiously, took care of her widowed mother and was honest to her journalistic job.
Then came December 2004 and everything changed without a warning. She was married now to a gem of a person and had a 10-month-old son on whom she doted. A patch of numbness above her knees did not bother to tell her that her horror story had begun.
From unstable gait, to loss of vision to incoherent vocal chords, to loss of bladder control. From the floor to the wheel chair to the bed. From cooking herself for the family to being fed with a spoon that too with a lot of difficulty, she had been reduced to someone you would have never known.
Friends fell off her radar, hope died a slow agonising death before her eyes; and soon her son too would not want to come near her. On very good days, she could be made to sit up for a while with pillow support. On bad days, she would fall off her wheel chair due to violent and uncontrollable body convulsions.
In the five years that this couple went from doctor to doctor, hospital to hospital, Madhulika lost everything — her vision, her legs, her body functions and soon she was reduced to constantly beg for death — something no one, not even destiny was willing to accord to her.
In all this, it was either superhuman or plain incredible that her husband, who was married to her for just one year when MS struck her, has stood by her like the rock of Gibralter. Such is his commitment to his ailing wife that doctors attending on Madhulika have bestowed him with sainthood.
Sitting next to his depressed wife, Shankar looks amazingly matter of factly. He tells you how for an entire year he took Madhulika from one top hospital to another but no one could relieve his wife from what kept happening to her.
A year of these senseless rounds later, in December 2005 the couple finally got to know what Madhulika had been afflicted with. It was Multiple Sclerosis (MS), a deadlier than deadly disease which hits the central nervous system. It does not kill you but slowly degenerates your muscles and nerves, crippling you forever.
“I had no idea what it meant. I was hearing the word MS for the first time,” recalls Shankar five years later. As he recounts their travails, a bed-ridden Madhulika tries to focus on this reporter — she has all but lost her vision as she has cataract in both eyes but can’t be operated as this would interfere with her intense MS medication.
“Everything went on smooth till this tragedy struck us,” she says. Dressed in a hooded orange sweatshirt covering her head and blue lowers, feet in socks, she asks her husband to put on the room heater as she tries to adjust to the sunlight pouring in from the balcony.
Initially, it got difficult for her to walk and she went to an orthopedist. Nothing came of it. A few days later she had a bad viral attack. On medication for that, everything around her started looking blurry and she would constantly feel there was not enough light around. “We suspected it was something serious. I took her to her doctor uncle in Apollo Hospital who made her undergo tests,” Shankar tells you. The diagnosis? Brain tuberculosis. The couple were devastated even though doctors said it was curable.
Of course, the worst was yet to come. Madhulika was put on steroids to help her weak legs gain strength and restore her vision too. “The strong TB medicines made her feel worse and she decided to be off them. As soon as she did that, her legs started giving way suddenly.
She could, meanwhile, barely see. Several bouts of infections later, she was a broken and scared person — she went back to her TB medication. Finally, some super-speciality tests and MRIs revealed that it was never TB but an unknown disease called MS.
For 40-year-old Madhulika today, life is a burden which she says “my husband is carrying on his shoulders.” Bed-ridden for most of the last five years, Madhulika cannot read or watch TV and has nothing else to keep herself involved with the whole day. Such is the effect of MS which is in the secondary progressive stage in her case.
MS is an auto-immune condition in which the immune system attacks the central nervous system (CNS), leading to demyelination. The disease affects the ability of nerve cells in the brain and spinal cord to communicate with each other. Nerve cells communicate by sending electrical signals called action potentials down long fibers called axons which are wrapped in an insulating substance called myelin. In MS, the body’s own immune system attacks and damages the myelin. When myelin is lost, the axons can no longer send signals.
MS takes several forms, with new symptoms occurring either in discrete attacks (relapses) or slowly accumulating over time (progression). Between attacks, symptoms may go away completely, but permanent neurological problems occur, especially when the disease advances.
MS is a mysterious disease which affects almost 1,00,000 people in the UK, 4,00,000 in the US and several million worldwide. There are no figures from India as no survey or study has yet been conducted but it is alarming to know from doctors that incidence of MS are getting fast paced in India despite it earlier being tagged as “the White man’s burden.”
Symptoms include loss of physical skills, sensation, vision, bladder control and intellectual abilities. There are several types of MS. Most will only vary in the extent it affects the CNS. The most frequent type of MS is Remitting Relapsing MS (RRMS). People with RRMS experience relapses followed by complete or partial recoveries. This type of MS affects 85 per cent of all MS patients. And the people recovering partially from relapses, which is 50 per cent of the patients, move into the next stage and experience progressive MS with or without recovery.
Till date, the cause of MS is unknown and there is no cure for the debilitating disease. Some researchers say it might be genetic, others talk of environmental triggers.
With no cure in sight, it is the family which needs to be a pillar of strength for patients fighting this progressively debilitating ailment.
Though Madhulika’s husband is clinging to hope, she has all but given up. What hurts her the most is that she could never be mother to her son. “I want to teach him how to paint and sing. I want to help him with his studies. He comes to me and say ‘mumma don’t worry. You’ll be fine one day and we will also go for an outing like others.’ I just want to get a little well so that I can at least give him what he deserves,” Madhulika tells you as her eyes well up and she raises her shawl with her shaky hands to wipe off the tears.
She points out to the once white walls of her drawing room which are now full of colours put on by her son Yash. The crayon and sketch pen marks all across make her smile and she resists her husband’s suggestion of a whitewash saying: “He is a true Piscean like me. He likes to paint and is creative in his own way. We both don’t like eating banana and we both love apples.”
All of six, Yash has now started understanding what ails his mother. “He sits with her now and they also share a joke or two but there was a time when he would come and question me why she never walks and plays with him like other mothers. He would not go near her and would prefer to watch TV instead. That worried me a lot,” recalls Shankar. Neurologist Dr CS Agarwal of the Sri Ganga Ram Hospital, who had briefly treated Madhulika, says men like Shankar are rare. “I have never seen such a caring and loving husband. There were times when Madhulika would lose her temper and insist on giving up the treatment, but this man never gave up,” says Dr Agarwal who treats the largest number of MS patients in Delhi. That’s what took Madhulika to him, though his treatment didn’t work well with her.
According to Dr Agarwal, India has progressed from the low-intensity to the medium intensity zone of MS. The number of MS cases coming to neurologists in India has increased in the last 10 years. Dr Agarwal alone gets three to four new MS cases every month.
“Unfortunately in India, we do not have epidemiolo-gical studies and there is limited literature from the West. In India, the number of benign cases is higher and the response to treatment is different from other countries. Patients under my observation are reacting better to treatment than patients in north European countries where the percentage of MS patients suffering from disabilities is the highest,” he tells you.
Optic neuritis, i.e. loss of vision in one or both eyes, is the most common symptom that patients come up with initially. “Everytime someone is diagnosed with MS, what follows is denial and then patients go doctor shopping, taking second opinions, which is not wrong but it leads to delay in starting the treatment,” Dr Agarwal says. Pumping in drugs like Avonex which produce interferons in the body that modify the immune system of an MS patient is the pre-requisite, he explains.
Available at almost Rs 7,000 an injection, Avonex and other medicines for MS make it a very expensive disease, unaffordable for many. The onset occurs in young adults, and it is more common in women at a ratio of 2:1. MS treatment attempts to return function after an attack, prevent new attacks and disability. The medication can have adverse effect and is poorly tolerated.
Many patients pursue alternative treatments too, despite the lack of supporting scientific study. There have been some successful cases with homeopathy, naturopathy and ayurvedic treatments.
MS is not easily diagnosed. Since it can include a broad range of symptoms, it is difficult to close in on. The initial symptoms can vary from mild to severe and can come and go with time, typically for two to five years before it can be determined if, indeed, it is MS. Before tests for MS are done, doctors usually take the multiple-query route, quizzing patients about a body of symptoms. Physical tests follow which include testing body balance, ability to stand and walk, the degree of numbness and its location, unexplained nerve pain, and whatever else appears to be amiss. Indeed, a long and uncertain procedure.
Take the case of IAF group commander Prabal Malaker who took two years to be diagnosed with MS. Posted in Udhampur in 1995, it was during one of his routine jogs that he felt exhausted. It got worse by the day and he thought it fit to start walking instead. But after two or three km, Prabal’s feet would start dragging. He was 38 years old then and 18 years into his service.
“This sudden exercise stress perplexed me. I kept trying to walk but finally decided to visit the doctor. I was not in the flying job at that time. The doctor thought something was wrong with my bones and recommended me to a surgeon. He started his treatment but I felt no pain in the bones. My weakness kept growing but trusting the doctor I carried on with the treatment for two years,” he tells you.
Gradually Prabal started finding it very difficult to walk. He was posted at Bhuj in 1998 where he had a bout of viral. "When I went to the doctor he found me dragging my foot. He sent me to a medical specialist in the Mumbai Army hospital in August who took an MRI of the spine, which came clear. Of course on hindsight, he should have done a brain MRI too. However, the doctor suspected MS and put me on steroids — a standard treatment for MS attacks. My condition only worsened and I went to a private hospital," says Prabal, trying to adjust his stiff as wood legs, sitting on a couch in his GK-II flat.
The new doctor suggested a brain MRI which Prabal didn’t go ahead with as anything to do with the brain could have caused problems at work. Fortunately, he was soon posted to Delhi, where in his physical review he was prescribed a brain MRI by the Army neurologist. The MRI revealed multiple white patches, indicating scarring of the nerves. By that time, Prabal had started experiencing spasticity of the right side of his body. Since then it has been one big slide into physical problems even though he has been on constant medication.
Having flown fighter planes, including the fastest MiG 25, it kills his family to see Prabal struggling for every step he takes. But heis not one who gave up. Prabal not only goes to swim every alternate day at the Gymkhana Club, (even though that takes everything out of him) but is also regular with the gym where he does stationary cycling and taken physiotherapy. His house is on the second floor and his bedroom on the third. He prefers to take the stairs up and down daily, dragging his legs through every step.
“One has to continue with life. People go into depression when they get to know that they have MS. They know there is no cure and it is a debilitating disease as it cripples life — you may land up in a wheel chair or get bedridden, and all this is a hope crasher. But one needs to fight it,” he insists, with example.
Prabal is also the vice-chairman of the Multiple Sclerosis Society Of India (MSSI), New Delhi. This voluntary society alone has 3,000 registered MS patients all over India.
Prabal suffers from primary progressive MS and is an inspiration for patients who lose hope. He continues to swim in winters too and has to take care that his body temperature doesn't increase because that makes it stiffer. "If I have fever I can't get out of bed for anything. I can't go out in too much heat and in all this swimming helps, though I find it very difficult to move around the entire day after a swim,” he tells you, adding how he went to the UK and France in September last year.
“I took a wheelchair there because I knew I had to walk a lot. Here I know if I have to go to the club, I need to walk so many steps, so I can hold the wall or a chair and manage,” he says.
He says he hasn’t gone to the neurologist for two-and-a-half-years because everytime something new comes up in the tests. After all, there is nothing that can cure primary progressive MS.
“The anti-spasticity drug they give me is supposed to reduce spasticity but I haven’t seen any improvement. I just take it for everyone’s satisfaction and that's about it,” he adds with a smile, trying to hide all the pain and anguish of a once active man reduced to measuring every step that he takes.
Talking to Prabal may make you feel it's all very easy to handle but reality is quite the opposite. “Only when you get something you figure out how to cope with it. One may sympathise with an MS patient but you can’t put yourself in his place,” he says.
He leads by example. One is sure Madhulika, if and whenever she gets somewhat okay, would love to do the same.
Hope floats
Rajiv Virat was diagnosed at the tender age of 17. He managed to complete his studies despite being confined to a wheelchair, went on to become three-time champion (wheelchair category) of Delhi Half Marathon and got nominated for the prestigious Wolfensohn Award for International MS person in 2005. Rajiv is also the youngest wheelchair tennis player to represent India in Malaysian Open where he won a bronze. He’s now a professional trainer in wheelchair management at spinal injuries centres in the Capital.
25-year-old Rahul was suspected to have MS at 21. As his neurologist was not entirely convinced, Rahul lived life like any other guy his age. “I smoke and drank occasionally too,” he tells you. He got the shock of his life in April 2009, when he had a relapse and underwent an MRI test which confirmed MS. Life changed completely. His family was determined to see him happy and cured of MS. His maternal uncle made him undergo naturopathy treatment under an expert. “After reading everything about MS on the Internet, I had lost hope that anything on this Earth can help. Meanwhile, I started with my Avonex treatment in July 2009. I got my next MRI done on February 18. My consulting neurologist was surprised to see the results. He called for all my reports since 2006 and compared them. He said that worst of lesions found in my April scans had reduced and many disappeared,” a happy Rahul says. Naturopathy has worked for him even though allopathy still has no answer to this crippling ailments. Rahul, all fortified with hope, is determined to continue with it along with other medication. Simply put, he is on hydro-therapy as also air, mud and sunlight treatments.
Group Captain Prabal Malaker (Retd), a fighter pilot with the Indian Air Force, and a flying instructor was diagnosed with MS in 1995. He was immediately ejected from a great career. But some years down the line, Malaker is an inspiration many MS patients would like to learn from. The fighter pilot never gave up, against all odds. He tells you how “I just don’t believe in crash landings!” As Vice-Chairperson of MSSI, he is now actively involved in advocacy and awareness drives for MS. “My struggle with MS is ongoing. But I’m not disheartened, I have to take life how it comes and my spirits remain high. I want to tell all victims — don’t give up, live life to the fullest. Things can be bad, but not as bad!” Yes, Captain!
Zarina Khatoon is a dutiful daughter, a devoted wife and a doting mother. All she ever wanted was a happy home and to care for her family. She lost her vision, hearing and mobility when she got MS. However, Zarina tries to keep up the work at home. Though she is now dependent on her children, she struggles to not be a burden on them all the time. For now, her entire family has joined in her struggle and they do their best to keep her spirits and her fight against this debilitating disease alive.
