Call Sign July 2009 - Page 21 - CAN MND BE DEFEATED?

Motor Neurone Disease (MND) is undoubtedly a killer. Former DaC driver Paul Bishop used to run marathons along with Call Sign’s Bob Woodford in aid of BLISS, the baby life support charity. Then one day he came down with MND symptoms and it took his life soon after. That was on 17 May 1999. One of Paul’s last wishes was that more money be put into finding a cure for this appalling illness that gradually and methodically affects every muscle in the patient’s body, so that even eating and breathing become a problem. Now a doctor in India is claiming some success, so much so that Dial-a-Cab driver Maurice Karter (W46) took his partner of 27 years - now his wife of one year – Janet to see Dr Geeta Shroff at her Delhi clinic. Dr Shroff carries out embryonic stem cell (ESC) treatment, which many scientists hope one day will cure everything from spinal injury to diabetes, by growing into a replacement part after being transplanted into the body. The treatment is expensive and while most of the world’s scientists are still experimenting with ESC, India allows the use of the technology on incurably or terminally ill patients. At 53, Janet suddenly found the strength in one of her hands had become so weak that she could no longer play the clarinet – an instrument she played in an amateur orchestra. The diagnosis for Janet shocked both her and Maurice. She had MND and was given a prognosis that would see her life end within two to five years. Previously a very active woman, Janet was soon confined to a wheelchair and unable to carry out tasks that most would consider just a normality of life. Through this heartbreak, Maurice, together with Janet’s daughter Charlotte, stood by her doing all they could to help. They sought medical opinions that all came back totally negative. According to Maurice, although Janet was given various pills etc, consultants were claiming there was no effective treatment and in reality, they were all just watching Janet slowly die. Then Maurice heard stories on the internet about an Indian doctor who had been helping people such as Janet with remarkable results.	CAN MND BE DEFEATED? Dial-a-Cab driver takes his wife to India to find out…
	Janet and Maurice at Dr Shroff's Clinic The stories revolved around Australian rugby player, Perry Cross, who became a quadriplegic after a rugby injury at the age of 19. He had no movement below his neck and had to use a ventilator to breathe. After 14 years in that situation, he went to Geeta Shroff and now is able to breathe unaided. Some British scientists have voiced concern and scepticism over his claims and have labelled Dr Shroff a dangerous maverick, claiming she has produced no data in what cells she is using or how they are prepared or even injected into the body. However her technology is patented and has been in use for over 7 years. And with over 600 patients benefiting from this treatment, patients report that they have not experienced any side effects. Janet and Maurice were convinced that it had to be better than just waiting to die, so they went to India. By the time they arrived, Janet could no longer speak or even cough – more dangerous than it sounds because that is nature’s way of keeping the lungs clear and failing to do so would lead to suffocation. However, she showed improvement soon after treatment began and regained that vital ability to cough. At the time of writing, the couple were on their third trip to Geeta Shroff’s clinic. Call Sign spoke to Maurice to ask how Janet was. He surprised us by saying that at the end of November 2008, Janet had weighed just 44 kilos, but within 5 months her weight had increased to 53.65 kilos – an astonishing weight gain for someone suffering with MND! Maurice told us: "I have been on DaC for over 20 years, although I have not driven the cab for a year because I’ve been looking after	Janet 24/7. When we arrived back in Delhi for our third trip and the doctors and nurses saw her again, they immediately noticed the difference. Her face was fuller and she had more muscles and strength on her than she’d had 6 weeks previous - especially on the left hand between her thumb and forefinger where the muscle had wasted away, but is now gradually returning. The clinic says her body is responding well and is starting to regenerate." Call Sign asked Maurice about the costs involved, because their second visit lasted two months, with this third one taking up the whole of May. Currently there is no time limit on how long the treatment could take. "I stay in the same room as Janet in the clinic," he told us, "and yes, it is very expensive. But the cost includes all treatment, accommodation, food and physio. We get assistance 24 hours a day if needed. It is also air-conditioned and with the outside temperature in May reaching 40C (104F), going out isn’t something I miss out over here! " And what if the money runs out? According to Maurice, Dr Shroff’s main concern is to see her patients do well and she would never abandon them. She would like to see Janet treated in London, but the UK medical profession will not allow the treatment. The stem cells could be imported under licence to treat Janet over here, but no one would help to administer them. Dr Shroff’s vision is to see that HESC therapy is made available globally. So how long will they be going back to India for the treatment? "When we get to a point where Janet can talk, eat properly again and walk unaided, then that will be our aim - for Janet to have a better quality of life and if that means travelling to India, then so be it." Now, following recent treatment, Janet has showed further improvement. Her walking is better – although obviously still aided and her tongue has now begun moving again, allowing her to speak clearer. Her strength and muscles continue to grow with doctors and physios commenting on her amazing progress. All Call Sign can do is to wish Janet the very best. That is certainly something Paul Bishop would also have said…

Call Sign Home Page

Page 23