Page 1 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571)

Asian MS Newsletter

ISSUE 1, 2015

…….A Message From The Editor……

This is the first

newsletter of 2015 and

already lots has been

happening! We’ve had

to say a sad farewell to

Saher Usmani who is off

to pastures new and

who has played a key

role in the development

of Asian MS over recent years. We wish her well!

Our Annual Meeting will be upon us soon and

Vinnie’s time as Chair will be coming to an end.

If you think you have what it takes to fill this role,

please get in touch with us. We also still have a

real need for a Membership Secretary.

MS was given a national platform in March when

I appeared (and danced!) in the first ever “The

People’s Strictly for Comic Relief” on BBC1. It

was truly the most amazing and best experience

of my life and I’m so happy it allowed us to have

such a prominent platform for MS in the national

media. My experience on the show really is a

testament to the idea that dreams can come true!

~Trishna x

PS. As always, please do pass this newsletter on to anyone who may be interested

HIGHLIGHTS OF THIS ISSUE.......

All the usual useful numbers and contacts

Dancing for Comic Relief and MS Letter from the Chair – Asian MS past, present & future Farewell Saher Sanjay wins an Oscar (sort of!)

News and Happenings

Tea with Dee – Dee chats with Bipin Vaghela

MS in the News MS Awareness Week & World MS Day Carers Update The Progressive MS Alliance

Our resident columnist ponders the more difficult MS issues

The latest research studies and clinical trials

During dress rehearsals for ‘The People's Strictly’

Page 2 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571)

Asian MS is a national support group for Asians

with MS, their carers, friends and family. We seek to

increase awareness and dispel ignorance of MS in

the Asian community, as well as put fun and dignity

into the lives of Asians with MS and their carers. We

also raise money for people affected by MS within

the Asian community. We produce online and

printed information in various languages and offer

an interpreting service.

Vinnie Kochhar - Chair

Mukesh Jethwa - Treasurer

Trishna Bharadia - Newsletter Editor

Rani Kaur - Support Officer

Abul Kamali - Website Officer

USEFUL INFORMATION & QUICK LINKS

General and Membership Enquiries:

asianms@mssociety.org.uk

Asian MS Website: http://www.mssociety.org.uk/ms-

support/support-groups/asian-ms

Asian MS newsletters online:

http://www.scribd.com/AsianMS_SupportGroup

MS Society Website: http://www.mssociety.org.uk

MS Therapy Centres:

http://www.msntc.org.uk/

Shift.ms (an online community for younger

MS’ers): http://www.shift.ms/index.php

MS Research Blog: http://multiple-sclerosis-

research.blogspot.com

Carers Trust: http://www.carers.org/

MS Register: http://www.ukmsregister.org

Map of UK public toilets:

http://greatbritishpublictoiletmap.rca.ac.uk/

http://twitter.com/AsianswithMS

http://www.facebook.com/AsiansWithMS

EMOTIONAL SUPPORT

The MS Helpline is available to give free and confidential information and support to anyone affected by MS from 9am-9pm, Monday-Friday. The helpline number is

freephone 0808 800 8000. Please specify if you would like to speak with someone from Asian MS and you will be directed to one of

our support officers.

PUBLICATIONS For a list of all the MS Society’s key publications showing the latest editions and revisions, and to

order, visit the website: http://oscos2.bmc-ics.com/mss2/public/index.php

There are also publications available in many of

the Asian languages including Bengali, Hindi, Gujerati, Punjabi, Farsi and Urdu.

Page 3 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571)

DANCING FOR COMIC RELIEF AND MS – by Manisha Chandarana Trishna Bharadia, Editor for the Asian MS Newsletter

and an active member of Asian MS, has just

completed an

exciting adventure

with the team at

BBC1's Strictly

Come Dancing

television show.

The first ever ‘The

People's Strictly for

Comic Relief’, was a spin-off from the celebrity version

of the programme, this time honouring and recognising

everyday people who have done extraordinary things.

Trishna was one of just six people chosen from over

11,000 nominations to take part in the programme and

get the full

Strictly

experience.

Nominated by

her younger

sister, Anisha

(also an Asian MS member), in recognition of the work

she has done to raise awareness of and fundraise for

the MS cause, Trishna was surprised at a 'pretend'

Zumba DVD

recording by

professional dancer

Natalie Lowe and

Olympic gymnast

Louis Smith, who

later became her mentor for the Strictly journey. Her

friends and family were in on the surprise and a

number of Asian MS members including Vinnie

Kochhar, Kanti Kalidas, Uzma Naz, and the Gangotra

family, and MS Society representatives Sarah

Westlake and Lauren

Conners, were there to share the wonderful

experience.

Trishna was joined by another five deserving

participants in the competition (Cassidy Little,

Heather Parsons, Anna Kennedy, Michael Pattie

and Phil

Barnett), and

they were all

paired with a

celebrity dance

partner,

Trishna's being

the popular

Aljaž Škorjanec, and given a dance which they

would have to perform in front of the Strictly judges

and a live

studio

audience,

Trishna's being

the high-energy

jive.

As well as training for the dance performance,

Trishna also had the opportunity to dance

personally at Wembley for Strictly judge Craig

Revel-Horwood, show Aljaž some of the work she

does to help raise awareness of MS, and get the full

Strictly makeover treatment, including glitter, sparkle

and wonderful dresses.

“@TrishnaBharadia Woohoo. You've done us MSers proud. Fantastic job. Thanks for raising awareness” “Well done @TrishnaBharadia! You did all MS'ers proud. You were our champion of #peoplesstrictly xx”

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The experience culminated in a show broadcast to the

nation and watched

by a live studio

audience (including

friends and family)

which saw all six

participants dancing

and being scored in

true Strictly-style by

Anton du Beke,

Darcey Bussel, Len

Goodman and

Bruno Tonioli. Their

scores were only a guidance, however, as voting was

then opened to the public, with money raised from

phone voting going to Comic Relief.

The results were announced on Comic Relief night

at a star-studded event on stage at the London

Palladium. Although Trishna did not win the

competition, being pipped to the glitter-ball trophy by

Cassidy Little, the whole experience has had a very

positive impact on raising awareness of MS. Asian

MS has seen an increase in membership requests,

people have

been talking

about MS on

social media

and MS has

been given a

positive platform in the national media, something

which will hopefully benefit the MS community as a

whole. Here at Asian MS we are proud of the work

Trishna has done and continues to do within the MS

community, and hope that she will continue to

inspire other people to take an active part in

bringing MS onto the national agenda.

-“Fantastic dancing Trishna - that must have been hard! - I too am in your situation and it's great to see that you are able to raise more awareness of MS” -“I cried, my you two looked fabulous. We're all so proud of you in our home, as I'm sure many other families living with MS are too!” -“Really enjoyed the whole show, you were fantastic and all six of you are amazing, inspirational people. Good to see such positive role models.”

If you missed Trishna on “The People’s Strictly for Comic Relief,” you can still catch

up on the BBC iPlayer. She appears in Episodes 2, 3 and 4 and you can access them

via this link:

http://www.bbc.co.uk/programmes/p02glql8/episodes/guide

She is also on Facebook www.facebook.com/trishnabharadia2015 and

Twitter @TrishnaBharadia

Also see “Letters to the Editor” on p.11

Page 5 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571)

ASIAN MS - PAST, PRESENT AND FUTURE

Letter from the Chair, Vinnie Kochhar

As my time as Chair is drawing to a close over the next few months, I want to share with you some of my thoughts about Asian MS past, present and future.

Asian MS was founded in 1997 by Sanjay Chadha and Gurjit Sihota,

both Asian people with MS who met by chance. Sanjay and Gurjit had both felt that they were the only Asians in the UK with MS! They felt isolated and misunderstood by their own communities. Together they decided to form Asian MS to raise awareness in the Asian communities from which they originated, in East London and the Midlands, with a handful of others. Sanjay contacted the MS Society in 1997 and has ensured that Asian MS has remained very closely linked ever since.

Asian MS became a national support group from its inception; it had the wholehearted backing of the MS Society, even sharing its charity number. It is a unique support group as it has always remained and still operates under the auspices of the MS Society.

There are around 180 families who regularly support

and who are supported by Asian MS. We have over

300 followers on Twitter and over 600 followers on

Facebook. It is a very active and young group. Our

members come from all over the UK and we

represent all the major ethnic groups and main

religions of the South Asian continent. We also have

good links with our counterparts on the Indian sub-

continent. Our sphere of influence is even greater as

we often support the Asian diaspora with MS around

the world.

Our committee is now made up of eight members; when I first joined Asian MS there were only three! The committee is diverse and professional with a legal, accounting, marketing and voluntary sector skills base. Several of our members have been awarded or shortlisted for awards by the MS Society. We also have many other talents, Saleem Quadri is a full time artist and our own Trishna Bharadia danced her way into the hearts of the nation by being nominated and chosen to take part in the first ever “People's Strictly for Comic Relief” recently! There is a serious side to our work but it is also about having fun! We seek to talk about serious issues in an engaging way. We welcome everyone's contribution great or small. It makes us the team we are!

We have a quarterly newsletter which has a wide circulation. It is a detailed and very informative publication. We are a language resource and have helped with publications in many different languages. We support our members and the MS Society by providing “cultural intelligence” as we have a unique understanding of many cultural issues. We like everyone to have a voice so we encourage our members from all walks of life to get involved in any way they choose.

Our contacts range from some of the best medical names in the world of MS, Dr. Raj Kapoor, Dr. Omar Malik, Prof. Gavin Giovannoni and Dr. Sreeram Ramagopalan, to celebrities such as Kulvinder Ghir of “Goodness Gracious Me” fame and DJ Rav Patti! We have been supported by Lord Bilimoria, Lady Bagri, and Dr. Ram Gidoomal from the world of politics. Dr. Lalvani of Vitabiotics has sponsored several of our events.

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We have reached a key point in our evolution and we are aspiring to reach the next level. This has only been possible with the help and resources of the MS Society which has always promoted our interests. It has ensured that we are transparent, accountable and democratic and is therefore a critical link.

Asian MS has so much potential to reach new heights and achieve even more for its members and the wider MS community. With the high profile that our younger committee members have given us and the experience of us older ones, make no mistake Asian MS needs you to join us to get loud and proud.

EDITOR’S NOTE:

As Vinnie’s time as Chair comes to an end, we at Asian MS would like to say a wholehearted thank-you for everything that she has done. Vinnie has worked tirelessly in her spare time to ensure that the group’s aims and objectives are met, often holding committee meetings at her own home in order to make it convenient for everyone to be able to attend.

Being part of Asian MS is often a family thing, and Vinnie’s family is no exception. Her husband, daughters, sisters and extended family have all supported Asian MS, whether it’s on a day-to-day basis when she’s been dealing with Asian MS business or it’s been through attending our events.

She has been a crucial part of the success of Asian MS events, making a formidable team with Saher! I’m sure she will continue to support us and all that we strive to achieve!

MS AWARENESS WEEK AND WORLD

MS DAY MS Awareness Week will run between 27th April-3rd May 2015, while World MS Day will be on 27th May. Both initiatives aim to raise awareness and the profile of MS on the national and international stages. For MS Awareness Week, the MS Trust wants to emphasise the importance of MS specialist services and ensure that those affected by MS can access the best possible care. To get involved with their activities for MS Awareness Week, visit their website: http://www.mstrust.org.uk/msawareness/ Meanwhile, World MS Day unites the global MS

community to raise awareness, share stories and campaign with and for those affected by MS. It is

the only global campaign to raise awareness for the condition. It started in 2009 and has since grown from strength to strength. This year’s theme will be “access.” Equality of access isn’t just about physical access to buildings, but also access to the same facilities, services and tools enjoyed by people who don’t have MS. The campaign will focus on access to diagnosis, treatment and support, leisure and travel facilities, buildings, training and employment, and education. For more information visit the World MS Day website: http://worldmsday.org/

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FAREWELL SAHER

After seven amazing years at the MS Society, Saher Usmani, the Support Groups Officer, has decided it is time for a change.

Saher has been the first point of contact for many Asian MS members. Several new recruits

commented on her warm smile and friendly manner! She was always sensitive about how a newly diagnosed person might be feeling. Saher put Asian MS at the heart of what she did, always trying to raise our profile with many different interest groups and even with the MS Society itself. Being a part of the Diversity team along with David Lusk, she tirelessly served our interests wherever and with whoever she could. She had the ability to reach out to many different people with MS from all walks of life, from all religious faiths and from varied communities. She gave many talks at schools, places of worship and melas, so she could connect people with MS and raise awareness.

She was keen to give Asians with MS a voice in

many key discussions at the MS Society. She

would represent our interests at many important

meetings and yet she always had time to make a

cup of tea and chat to anyone who turned up at

the MS National Centre with a problem.

Always quick to play down her hard work and

dedication, I would like to stress that Asian MS

owes Saher a great debt of gratitude. She has

been instrumental in her gentle way in

bringing Asian MS to a prominent position in the

world of MS. We all wish her well in her new

endeavours and will miss her greatly. –Vinnie

Kochhar

Some more messages of thanks!

Saher there are many words I could say however,

you are simply a wonderful soul that has and

always will be cherished by all. A loyal and special

friend. Thank you, thank you. –Sanjay Chadha

Saher, you have helped me out so many times

when I’ve been frantically trying to get the

newsletter out on time. You were the first person

who I met from Asian MS and the day that I sat

next to you at that MS event in Oxford pretty much

changed my life! Thank you for all the work you’ve

put in over the years and the support that you’ve

given to me and my family! You’re a star! –Trishna

Bharadia and the Gangotra family

We at Asian MS would like to wish Saher all the best for the future, in whatever she

does! She’ll be missed greatly!

Page 8 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571)

FUNDRAISING FOR ASIAN MS

Where do the funds go?

Asian MS is funded purely by donations, which are used for various purposes. They include holding information and social events, contributions to research projects, and administration costs.

The Amiloride and Phenytoin projects

Asian MS has donated £1,500 to the Amiloride and Phenytoin projects, both of which are drugs that are being tested in

clinical trials for use in MS. Amiloride is a high blood pressure and congestive heart

failure treatment that has been in use for over 30 years. It could also have a neuroprotective and myeloprotective effect. Phenytoin is an

epilepsy drug that has been in use for over 60 years. It is being tested to see if it can protect the optic nerve in people with optic neuritis and, therefore, prevent nerve damage in MS.

Asian MS are proud to announce that they now have the facilities to allow people to make donations in an easier and quicker way.

Donations by credit card via the internet site justgiving.com: www.justgiving.com/AsianMS

How to make donations by text message :

Send a text message to 70070 Remember to include the subject of the text: as AMSS89

and send it with the amount you wish to donate up to a maximum of £10

If you wish to donate £10 your message would read AMSS89 £10 If you wish to donate £5 your message would read AMSS89 £5 and so on.

You may donate with any number from £1-5, and the money will go directly to the MS Society, which

will transfer the cash generated to Asian MS. We at Asian MS then decide how to allocate the funds.

You can also raise funds every time you shop through EasyFundraising:

http://www.easyfundraising.org.uk/causes/asianms

We thank you kindly in advance for your support

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SANJAY WINS AN OSCAR (sort of!) The MS Society Digital Team hosted the first of a series of internal staff talks on 18th February to highlight different areas of digital work to a staff audience. For the first of these we decided to look back on 2014 – drawing out highlights of the year. We wanted to profile key successes, areas that other staff may not be aware of, and excellent examples of ways in which we’ve worked with other teams. In order to make this staff talk more interesting, we took inspiration from the ‘awards season’ and held our very own ‘Oscars’ ceremony, giving out ‘awards’ to some of the people involved in the various projects we were talking about. Sanjay Chadha received an award for his performance in ‘All of Me’; a short film based on his real-life experience of what should have been a standard hospital admission. The film tells the true story of how Sanjay was taken into hospital for a UTI - not an unexpected thing for a man of his age, especially as a man with MS. But the care, or lack of care, he experienced was something unexpected. Some of the staff at the hospital failed to take his MS into consideration, didn't appreciate what he was going through, and generally misinterpreted his reactions. The MS Society worked with Sanjay, his friend Cynthia Benz (who is also the narrator in the film) and an external production agency to really bring the film to life and make sure the message came across loud and clear. The film was originally made for an audience of MS professionals, who have engaged with the film and the points it has raised. But it also continues to resonate with people affected by MS themselves. The Digital Team wanted to thank Sanjay for telling

his story, to honour his bravery and to raise the

profile of the project; ensuring more people saw the

film. –Ben Noble (MS Society Digital Team)

Sanjay kindly spoke to

Ben Noble from the digital

team at the MS Society

and here is his interview:

BN: Congratulations Sanjay! So this video was

obviously based on a true story; how was it to re-enact your real life experience?

SC: I’d sum it up with, firstly, feeling very surreal, that this did actually happen to me. Very angry, that it was so unnecessary for me to have gone through the suffering that I had to go through. And; sad, that actually there were really good NHS staff, that were trying to help, wanted to help; but because of the pressures they’re under, because of their managers, that they were unable to give the counsel that they would have liked to have given. But from my point of view; it was a very difficult period in my life.

BN: Well obviously your performance was what really made the film. How did the project initially come about?

SC: Well it really came about from an informal conversation, with Cynthia Benz, a long standing volunteer at the Society at a Palliative and End of Life Care Working Group meeting. I think she heard a little bit of what I experienced and thought it was a real story to be told to be able to help everybody across the UK, help campaigning and areas like that. So it was really by chance, a conversation

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that was grabbed hold of by Cynthia.

BN: And of course Cynthia was the narrator on the film as well… How did working with the Digital Team help develop the project?

SC: I must say, it did take us quite a bit of time to get to the truth of the story, to write and re-write, but the Digital Team gave us that time, that space for us to really work it out and bat it around. And actually, then engaging other partner organisations to help us with the whole process, was invaluable…and Ben was fantastic!

BN: Well we worked with an external agency, Malt Films, didn’t we? So…initially you came to me and said; we’ve got this story and we want to do it as a conversation, and I said well how about we do it with some different sort of visuals, and in the end we thought doing it as a re-enactment would be the best way to do it. So that’s what happened. And finally I’d just like to ask you; what’s the reaction to the film been?

SC: I’ve had some very variable reaction, but the majority has been of shock. That… “did this really happen to you?” and I think some people being horrified that this kind of thing does happen in NHS hospitals. And that’s even from people from NHS England who’ve seen the video and tried to use it in some of their training. So overall for the MS Society, I’m hoping it’s had an even wider impact around the world.

BN: It continues to have an impact with professionals and people online. I’ve just got a few comments to read, from people who have seen it online;

‘I was once in this man’s shoes. This can happen to anyone of us with MS.’

‘Its not just hospital, but rehab too.’

‘Thank you for this video Sanjay, I will share it for all the nurses to see, it is a disgrace that you had

to go through it!’

‘I've seen this sort of treatment (neglect) when I was working with people with profound disabilities….Why are 'caring professions' being so uncaring to those with no voice, the most vulnerable??! Having secondary progressive MS the video has made me more aware of my future but with the help of my daughter, the MS society and hopefully a change in staff attitude, things will be less painful, confusing, dangerous and stressful when staying in hospital.’

So that’s just a few of the comments; I just want to say thank you very much, it’s been a pleasure working with you on it, and thanks very much for telling your story to us all.

CARERS UPDATE

The ‘State of Caring’ survey focuses on how caring affects finances,

health and a person's ability to live their own life. By completing and/or sharing this survey with carers, you can help us expose the reality of caring in 2015. Carers Week is an annual campaign to raise

awareness of caring, highlight the challenges

carers face and recognise the contribution they

make to families and communities throughout the

UK. It will run between 8th and 14th June 2015 and

is supported by the MS Society. Go to:

http://www.carersweek.org/

Check out Tea with Dee’s latest guest Bipin,

who is a full-time carer for his wife Kiran, on p.

13.

The Care Act comes into force from 1 April. For

more information visit: http://www.carersuk.org

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LETTERS TO THE EDITOR The publicity surrounding The People's Strictly in

which Asian MS newsletter editor, Trishna, was

taking part, has got people talking about MS. In the

main part, support for her work to raise awareness of

MS has been overwhelmingly positive, but I have

noticed a few comments being made about how she

is misrepresenting MS as 'her' MS is nothing like the

pain and disability being experienced by other MS

patients out there.

Whether or not

these people

have actually

listened to what

Trishna has been

saying ("No two people with MS are the same - their

disease progression and symptoms are different so

you can never have a 'typical' case of MS") is

debatable, but nevertheless it does throw up the

question, how can we truly represent MS on a

national platform so people understand what this

illness is about and how it affects people's lives.

My view is that anyone with MS who takes the time

and trouble to get their story heard, is doing a service

for the MS community as we can never have a typical

case of MS. So why should one person have their

story heard and not someone else? Debbie Purdy

had primary progressive MS and was severely

affected by it, and she put her story onto the national

stage. Her MS did not represent the many people

with Relapsing Remitting MS who are still able to

walk, run, jump and play sports, for example. But this

did not mean she had any less right to have her case

heard. The only way we will get Joe Public to

understand more about the varied and uncertain

nature of this illness is by getting more people in

the national spotlight to

tell their story. They

should be applauded,

not criticised,

especially when they

reiterate the mantra

'#NoTwoTheSame'.

Without the likes of Debbie Purdy, Trishna

Bharadia, Shoshana Pezaro and others, we

would be missing out on national publicity,

conversation and education, which are the first

steps towards a greater understanding. I for one

am proud that these people are willing to stand

up and share their stories on such a massive

platform.

-Manisha Chandarana

EDITOR’S NOTE: If you would like to write to us

here at Asian MS we welcome your opinions and

feedback. Please email:

asianms@mssociety.org.uk

To read more about Trishna’s journey on the People’s Strictly, check out her blog

on the MS Society’s website:

http://www.mssociety.org.uk/ms-support/community-

blog/2015/03/%E2%80%8Bpeoples-strictly-trishnas-story

Trishna talking on the BBC's "One Show"

Trishna speaking about MS at an awareness-raising event

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NEWS AND HAPPENINGS

MS ON THE BBC The MS Society recently put together a slot for BBC News all about the MS-SMART trial, which is looking at the possibility of repurposing three drugs to see if they are effective in the treatment of progressive MS. The slot featured Asian MS’s Sanjay Chadha, Dr. Emma Gray from the MS Society and Dr. Jeremy Chataway from University College London, who is one of the lead researchers on the trial. The piece was well received, particularly as it gives hope to people with progressive MS, for which there are currently no effective treatments. Well done Sanjay for helping to bring this trial into the public spotlight! For more details you can also visit: http://www.bbc.co.uk/news/health-32136208

VOLUNTEERING UPDATE

Volunteers’ Week takes place from 1st until 7th June 2015 and will again celebrate the contributions of volunteers around the UK. Volunteering is a fantastic way of “giving back” to the community and can bring a number of benefits to individuals including learning new skills, building self-confidence, boosting career prospects, making you feel part of a community and helping you to make new friends and to meet people from all walks of life. Asian MS is solely run by volunteers and we are always in need of people who are willing to give up some time to help us out. It can be as little or as much as you can manage. It might be helping out at a specific event or you may want to stand for a committee role. With our Annual Meeting coming up soon, now is the time to start considering how you could help us out in the coming year! To find out more email us at: asianms@mssociety.org.uk For more information about Volunteers’ Week, go to the website: http://volunteersweek.org/

TRISHNA’S BLOGS

Read Trishna’s latest blogs, which include how she prepared for her People’s Strictly experience:

http://www.mssociety.org.uk/ms-support/community-blog

HAVE YOUR CAKE!

The MS Society Cake Break is an annual

initiative that

encourages

people to get

together,

have some cake and raise money for the MS

Society. The official Cake Break day this

year is 15th May so if you’d like to hold one

then check out the website to register for

your pack: http://cakebreak.org.uk/

Do you run a blog that details your journey with MS? Or are you an avid

tweeter? If so, let us know and we can tell our members!

On the Asian MS Facebook Group we’re talking about marriage and MS,

the Disabled Golf Association and optic neuritis and the repurposing of drugs

among other things!

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‘TEA WITH DEE’

~ Dee Popat has chai and a chat with our members

It feels like we have not been in touch for a while. I hope you are all doing just great! New year... new projects...

new faces... I thought this time, I would speak to a carer/relative and hear what they have to say, share their views and perhaps provide inspiration to others.

Please remember that I am always looking for people to come and have tea with me. As always, please email

either myself (on Facebook) or Trishna and together, we will enlighten the world.

BTW, speaking of Trishna, I just wanted to congratulate her for the People’s Strictly. You go girl and show them

what you are made of. Wishing you all the best.

Dee x

What was your initial reaction when Kiran was diagnosed? I was broken and confused but had to be strong for my wife and our children. (At the time, our children were only 6, 8, & 10). It was all very new to us and there was a lot to learn regarding the diagnosis. How much do you know about MS/what have you learnt? I did not know anything about MS initially but have learnt plenty over the years. A lot more information and support is available now. What support do you provide for Kiran? I provide Kiran with complete support, from getting her out of bed, making breakfast, showering her, putting on her clothes, brushing her hair, preparing lunch, taking her out for shopping,

preparing afternoon tea and snacks, preparing dinner, changing her clothes at night and putting her to bed. I also have to see to all her personal needs throughout the day. It is a full time job in itself but I love being there for her whenever she needs. How familiar are you with any symptoms that Kiran has or may have? Very familiar (that’s an understatement). I have been through it all with her from when Kiran had Relapsing Remitting MS, what to do when she had a relapse, her secondary progressive diagnosis along with Trigeminal Neuralgia. I am also fully aware of how to manage her medicines and dosage. How do you help Kiran manage her symptoms? I am there to assist her with anything she wants from helping her to walk and get about to holding her hand when she needs support. What support does Kiran receive from family/friends? My children take over if I have to do some work outside. I have to admit that friends find it difficult to help physically but they provide us all with the mental support.

Name: Bipin Vaghela Marital status: Full time

carer Relationship to MS: Wife

has had it for 15 years Children: Three!

Page 14 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571)

Has family life changed since Kiran was diagnosed? Yes for sure. Due to the diagnosis, I had to give up my business and become a full time carer. Our social life and holidays were also reduced due to the difficulties that Kiran was experiencing and her disabilities. Are there any particular experiences/obstacles that you want to share? I feel that in the Asian community people think that there is something wrong with Kiran’s legs or she has had a stroke. It is more so with the older generations. This is mainly due to the fact that they do not know what MS is and how it affects people. We need to spread the word and also educate the community with regards to MS and even other illnesses. What tips, if any, can you give to anyone living with someone who has MS? Most importantly, you need to have patience and keep calm. People need to appreciate that movements in people with MS can be slow or delayed. Physical and emotional support is a must. How did you hear about Asian MS ? Are you involved with Asian MS? I remember being there when Asian MS was set up about 10 years ago. My cousin, Mukesh Jethwa called us and asked for our support. I am not involved on a day to day basis but do attend the AGM and other functions. Your personal feelings or thoughts on MS? I feel that it is very difficult to look forward and plan ahead, but I am staying positive and hoping that there is a cure just around the corner. Any special message for your wife? I love you and don't want you to ever lose hope.

PROGRESSIVE MS

ALLIANCE It is often said that those with progressive MS

have been forgotten about, with much of the

research and focus being on those with the

relapsing remitting form of the condition. This is

changing, however, not least due to the

Progressive MS Alliance, which was set up in

2012.

The six founding members are MS societies from

the UK, USA, the Netherlands, Italy and Canada

and the MSIF (Multiple Sclerosis International

Federation). They jointly committed to

accelerating the development of treatment for

progressive MS (SPMS and PPMS) via the

removal of technology and scientific barriers.

Formalised in 2013, the alliance has four strategic

aims: to raise the profile of progressive MS and

accelerate progress; secure resources and

globalise research funding; inspire, galvanise and

engage; and deliver operational excellence. The

alliance seeks to learn from the research being

undertaken into progressive MS and connect

efforts to speed up progress.

If you would like to make a donation to help the

Progressive MS Alliance’s efforts, you can do so

by visiting their website, where you will also find

more information about the collaboration:

http://www.progressivemsalliance.org

DEADLINE for the next edition of the

newsletter is 31st May 2015. Please email

us your stories, links, photos and news!

Page 15 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571)

TACKLING THE TOUGH QUESTIONS – BY T3Q

Why is it that when inspirational people with MS

are seen to do amazing things, along with the well

done's and congratulations, there

are always those who say 'I don't

want to see that because I can't do

it'? Is it jealousy? Is it despair? Is it

because these people would be

glass-half-empty people anyway,

despite their MS? Or is it just that human nature

makes us want to criticise rather than celebrate

success and achievement? I read a story recently

about a lady with MS who climbed Mt. Kilmajaro.

Now, achieving such a feat without MS is

admirable. Achieving it in spite of her MS is

inspirational. However, I don't pretend that I have

mountain climbing within my capabilities. So why

should I begrudge this lady her success? MS'er

Stephanie Millward is a Paralympic medallist who

has achieved great things in the swimming pool.

I'm lucky if I can make it across a pool on holiday

with something resembling a doggy paddle. The

fact she has MS, does not make me suddenly

believe that I could've been an Olympic swimmer

but my MS has stopped me from doing so, and so

she shouldn't be flaunting her achievements.

Instead, I look at the bigger picture and learn from

how she has coped with adversity and I take that

and make it relevant and applicable to my own

challenges. So why is that within the MS

community we criticise and knock people down?

Did we see fellow cancer sufferers tell Jane

Tomlinson to stop running marathons because it

made the rest of them look lazy and inadequate?

No. They got behind her and were thankful for the

money she raised and the publicity she brought to

the Cancer cause right up until when she died. So

why can't the MS community do the same?

Celebrate the successes of these people who are

achieving great things despite their MS, learn from

them and be thankful that they are doing things to

raise the profile of MS and raise funds which will

benefit all of us, rather than sit there and say 'why

should I be happy for them when I can't do that?'.

To end this piece, this is a perfect example of why

these people are inspirational:

A message from Tayside MS Therapy Centre

A £500 donation was handed in by a lovely couple,

Ann and Stewart McNab. They

have been organising tea

dances for a number of years.

They take place every couple of

weeks at St. Margaret’s

Church, Barnhill, Dundee. Funds raised are

donated to local charities. This year they raised

some additional funds and were considering who

to donate it to. As things happen Ann was

speaking to a friend who had MS, then she saw

Trishna Bharadia on the People’s Strictly for

Comic Relief and round about the same time she

was speaking to someone from her church who

also had MS.

She took this as a sign and undertook to donate

the funds to the Centre. She and Stewart popped

in, and Alwyn and Doug provided them with some

background to the Centre and gave them a tour of

the facilities. They were very pleased that their

fundraising would benefit local people and help to

make their lives a bit easier.

Thank you Ann & Stewart McNab and Trishna - so

much appreciated!

Page 16 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571)

A CHANCE TO GET

INVOLVED

Research studies that are currently running are

listed below. For more information on any of these

studies and clinical trials, please visit the MS

Society’s research page at:

http://www.mssociety.org.uk/ms-research/get-

involved-research/be-in-a-study

Comparing Functional Electrical Stimulation

and Ankle Foot Orthosis in the management of

foot drop in MS, NHS Ayrshire and Arran plus

various Scottish universities: Looks at FES and

AFO in managing persistent foot drop in people

with MS. Will investigate effects of both on walking

speed and oxygen consumption, as well on

fatigue, physical activity levels, quality of life,

stability and disability. It will involve being given

AFO or FES treatment depending on which group

you are assigned to. You need to be an MS patient

within certain Scottish NHS areas and have foot

drop.

Abdominal massage for neurogenic bowel

dysfunction in people with MS, Glasgow

Caledonian University: Will explore whether

abdominal massage in addition to advice can

improve faecal incontinence and related symptoms

in people with MS, as well as overall quality of life.

You need to be able to massage yourself or have

a carer to do it for you. Initial meeting with

research nurse will take place at one of ten MS

clinics or hospital sites in the UK.

Interview study to explore quality of life of informal carers of people with MS, University of Nottingham: Aims to explore the experiences of informal carers of people with MS, in order to help in the development of a new quality of life measurement scale. This scale will be useful when developing new strategies for reducing the strain put on carers and improving their quality of life. Will involve a 15-45 minute interview that can be face-to-face, online (email or Skype) or on the telephone.

Understanding fatigue in children and adolescents with MS, King’s College London: This interview study seeks to improve understanding of fatigue in childhood MS. Young people with MS and their caregivers will be asked to talk about their experiences of MS-related fatigue during a 30-60 minute interview with a researcher. Children and primary caregivers will receive a £10 shopping voucher each as a thank you for their participation. Children are classed as 18 years old or under. Interviews can be at home, over the telephone, at King’s College London or at Great Ormond Street Hospital for Children if you are a patient there.

The MS Society Tissue Bank allows both people with and without MS to donate their brain and spinal cord tissue after their death, helping researchers to understand MS damage and find more effective treatments. For more information please visit: http://www.mssociety.org.uk/ms-research/get-involved-research/ms-tissue-bank

The UK Clinical Trials gateway allows you to search for clinical trials and studies related to MS. Type “multiple sclerosis” into the search box: http://www.ukctg.nihr.ac.uk/default.aspx

Page 17 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571)

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