St Valentine’s Day

Valentine’s Day is a very well celebrated event in India, with 80% of the world’s roses sent Valentine’s day coming from Bangalore.

Happy Valentine’s Day to all our partners from the UK Team, and just to let you know, we don’t plan on bringing our own roses back with us!

Our last day’s training and the whole team is feeling quite sad that we will leave so many of the wonderful people we have met, behind. In some ways, the time seems to have passed so quickly, but in others, it seems ages since we left the UK. Despite many of the team members not knowing each other beforehand we have really gelled as a team and could definitely recommend India for an MS Society teambuilding awayday! All team members have contributed a lot and have truly worked in a multidisciplinary way, supporting each other in sometimes challenging situations. We have all learnt a lot from this experience and are keen to implement what we have learnt, back in the UK. In the words of Eli, “one cannot play cricket on one’s own”.

One of the saddest consequences of MS and disability in India is that once people are unable to walk, many places are out of reach for them. Disabled access to buildings and public places is virtually non–existent, especially in the less affluent areas and outside the major cities. Since we have been here none of us have seen a person using a wheelchair (outside of the training days) and from what we have learnt, many people become “homebound” as mobility decreases. Even people with minor mobility problems are disabled by their environment. We have also learnt that nursing at home, one of the major success stories in the UK, is seen as menial and not something that the vast majority of nurses in India want to do. Therefore, the person with MS has a double burden of not being able to get out, and also having very limited (if any) access to care.

The MSSI is addressing these issues by employing nurses and counsellors to visit people at home. Currently seven MS nurses are working in India, but many, many more are needed. They are also campaigning to the government to get better access for people with disabilities and have a number of programmes to improve the lives of people with MS and their families.

The last day’s training was again a sell out and our programme was complemented by a session on rehabilitation, presented by Dr Singh and Dr Handa. The day finished on a happy note with a session on laughter therapy from Mrs Neelam Wadera and her team.

We are up at 8am tomorrow for our flight back to the UK. We hope you enjoy reading about our travels in India – please do feel free to leave us your comments.

Full House!

After a sleepless night, due to the loudest thunder storms any of us had ever experienced, we met in the morning to talk about the final two days' programme and to discuss our personal highs (and lows) of the trip.

All of us felt that there was huge interest about what we were doing and a thirst for knowledge amongst the MS population in India. We felt we had only just scratched the surface and there was much more work to be done. This was borne out when we arrived at the training venue in Delhi and people were being turned away from the day, as there wasn’t even standing room available in the venue.
The audience was comprised of many physiotherapists, but also nurses and some people with MS. There was the usual number of questions and people were keen to find out more, particularly around physiotherapy techniques used in the UK. Another recurring theme was the long-term use of steroids in relapsing remitting MS.

The training finished at 7pm and we went back to the hotel to pack, as tomorrow we are training from 9am, through to 6:30pm, finishing with a kind invitation to join the MSSI Delhi Chapter and Mrs Sheela Chitnis for a farewell dinner in the evening.

"A drop of tear on the cheek of history" *

Today was the day that we off to Agra to visit the magnificent Taj Mahal. With full training programmes planned for the next two days this was our last opportunity to see a bit more of India.

We were collected from the hotel lobby at 5:30am and driven towards New Delhi train station. However, our plan was thwarted by early gridlock and we had to cover the last few 100m by foot, weaving through an assortment of hooting drivers, people, animals and numerous other obstacles. The train station was a heaving mass and Alison will never complain about the crowds at London Bridge ever again! Our train pulled in on time and we clambered into a coach with more legroom than we had ever experienced, as we were lucky enough to get seats in the “executive” coach. AS we pulled out of the station for our 2 hour journey we were firstly given a bottle of water each, followed by a bone china cup of tea, followed by cornflakes and hot milk, followed by some curry and bread and marmalade. More tea and bananas were on hand in case we were still hungry after our feast. Apart from the food the other highlight was the sighting of our first elephant, out of the train window!

We were met off the train by a guide who drove us to the Taj Mahal. All of us had seen pictures of the Taj Mahal but none of us were prepared for the awesome sight of it, as we walked through the entrance gate. We spent a couple of hours walking around, taking photos and soaking up the atmosphere. Our guide explained about the Mogul empire and the history of the tomb. The marble carving was unbelievable and inlaid with intricate precious stones. Eventually we had to leave to carry on with our trip, but all of us were very sorry to leave such a beautiful monument.

Next, our guide took us to the Red Fort, from which we could see the Taj in the distance. He told us about the emperor and his harem, including his three wives, a Hindu, a Muslim and a Christian. On the way out we saw a giant, 30ft diameter, 5’6” deep bathtub, honed out of one single piece of rock, with steps inside and out to get in. Apparently this was portable, although no one is quite sure how many elephants it took to move it!

After lunch, we were taken to some local craft markets, where we all managed to part with a large number of Rupees! Laden with Indian handicrafts we then went to visit what is known as the “Baby Taj”, which provided inspiration for the full Taj Mahal. Like the Taj Mahal the walls were encrusted with semi precious stones but the precious jewels, such as rubies and emeralds had been taken. We realised the numerous monkeys had very good taste as they were living quite happily in these majestic settings! Seeing eagles, parrots and other exotic animals added to our enjoyment of the day. And the guide likened us to small children, for our enthusiasm for everything we saw.

We caught the train back, by the skin of our teeth and settled down in our reclining seats for a full three course curry dinner. We finally got back to the hotel at 11:30pm and toasted a superb day with a cold Indian beer.

(* Quote by the poet Tagore, a Nobel laureate)

The Last Leg

Unusually it was very cold wet and stormy in Delhi (not unlike the English weather we had been so delighted to leave behind!). After a quick freshen up we set off in a minibus to experience the true flavours of Delhi. We were dropped off in the old part of Delhi – it was extremely busy with many market stalls, traders, and small street vendors. We had a quick look around a fort in the city, similar to the Red Fort in Agra, before driving back to the hotel, in time for the evening programme.

The evening programme had been arranged by the MSSI Delhi branch and we arrived to TV cameras and a flurry of activity. After a quick interview Eli took the floor and spoke about the pathology of MS and treatments, including a section on possible future therapies. Dr Madhuri Behari, professor and head of neurology at the All India Institute of Medical Science, New Delhi then spoke about the prevalence of MS in ethnic communities and the different presentations of MS that have been documented. We have learnt that the prevalence of MS varies even between different Indian communities, such as Parsis and Hindis.

Dr Mendiratta, professor of neurology at GB Pant Hospital in Delhi, spoke about treatments in MS and it was apparent that availability of beta interferons was extremely limited and treatments used included mitoxantrone, azathioprine and a number of drugs used for epilepsy. We finished the evening with dinner with the MSSI Delhi and the delegates.

Leaving Hyderabad

We were very sorry to leave Hyderabad and Meena and Renu had come to the Hotel at 6:45 in the morning to wave us off to the airport, to fly to Delhi. Our flight was delayed and we arrived at 11:45pm to be met by the Delhi Chapter with flowers to welcome us.

Training and Powercuts and Chipmunks, Oh My!

A full day’s training lay ahead of the team today and we set off to our venue at 8am. The morning sessions were for Healthcare professionals and around 120 people attended. The morning followed along similar lines to previous ones. We were however saddened to hear that the Chair of the Hyderabad chapter’s, Meena Gupta’s father in law had died that morning. But she still insisted on attending our training as she didn’t want to let us down. The dedication of the members of the MS Society here in India has been humbling. They are all volunteers, without an office and simply work out of their homes. Their dream would be to have an office which they could work from and which with MS could visit.

Eli gave his first talk of the tour, which went really well and Jane gave a very lively presentation on seating and stretching. Not even a power cut mid way through could put her off her stride!

After lunch, we travelled to a local government hospital where at least 60 people with MS had gathered for a Q & A session with the team. We were also joined by a local neurologist Dr Meena, who had to translate some of the questions as some of the delegates found English difficult to follow. The room was very small and was absolutely packed. However, one slight distraction in proceedings, was when a chipmunk appeared through a hole in the ceiling!
Virtually all of the attendees had questions and they ranged from very specific questions about their own diagnoses and treatment to general questions about pregnancy. Many people had brought their medical records and scan results and were asking for advice. We all found it interesting but very difficult emotionally, and we all came away wanting to do more to help and wishing we had a longer to talk to people.

We left the hotel at 7pm to travel to the Taj Hotel for an evening lecture with local neurologists from Hyderabad. Caron opened the evening and thanked the Hyderabad chapter for their very warm welcome and presented them with a presentation plate. Meena Gupta, Chair of the chapter, spoke about the work of the Hyderabad branch of the Society, which was actually only inaugurated 18 months ago. We all felt they had achieved a phenomenal amount in this short time and we very impressed with the dedication of the volunteers. Eli then gave a lecture summarising recent developments in MS and future potential therapies. Afterwards, we enjoyed an excellent meal with the chapter and local neurologists and health professionals.

Hooray for Bollywood

At long last a day off! A fantastic day of sightseeing was arranged for us by the Hyderabad chapter, who couldn’t have been nicer or more helpful. We set off at 9am for a visit to Film City.

The film industry is huge in India and they are suitably proud of the number and quality of Bollywood films they produce each year. Film City was truly amazing and consisted of a variety of film sets that we used in various movie productions. These film sets ranged from the bizarre to the beautiful, the surreal to the authentic and our guide was very proud to tell us that nothing was real and everything was made of plaster of Paris. Time for another group photo outside an artificial hospital, before yet another wonderful Indian curry buffet lunch.

After lunch it was time for some more cultural input, after the frivolity of the morning. We visited Muslim tombs and a wonderful fort where, as the sunset, we watched a light show which illuminated the fort whilst we listened to the history of the Mogul empire. Wearily we arrived back at our hotel for dinner before turning in for the night.