Asian MS Newsletter

HIGHLIGHTS OF THIS ISSUE.......

ISSUE 1, 2015

.A Message From The Editor

This is the first
newsletter of 2015 and
already lots has been
happening! Weve 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!
During dress rehearsals for
The People's Strictly

Our Annual Meeting will be upon us soon and

Vinnies 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
Peoples Strictly for Comic Relief on BBC1. It
was truly the most amazing and best experience
of my life and Im 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

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

PS. As always, please do pass this newsletter on

to anyone who may be interested

Page 1

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

MS Therapy Centres:
http://www.msntc.org.uk/

Asian MS Website: http://www.mssociety.org.uk/mssupport/support-groups/asian-ms

Shift.ms (an online community for younger

MSers): http://www.shift.ms/index.php

Asian MS newsletters online:

http://www.scribd.com/AsianMS_SupportGroup

MS Research Blog: http://multiple-sclerosisresearch.blogspot.com

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

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

MS Register: http://www.ukmsregister.org
Map of UK public toilets:
http://greatbritishpublictoiletmap.rca.ac.uk/

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 Societys key publications
showing the latest editions and revisions, and to
order, visit the website: http://oscos2.bmcics.com/mss2/public/index.php
There are also publications available in many of
the Asian languages including Bengali, Hindi,
Gujerati, Punjabi, Farsi and Urdu.

http://twitter.com/AsianswithMS
http://www.facebook.com/AsiansWithMS
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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
Page 3

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
Alja korjanec, 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 Alja 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.

-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.

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.
If you missed Trishna on The Peoples
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/e
pisodes/guide
She is also on Facebook
www.facebook.com/trishnabharadia2015 and
Twitter @TrishnaBharadia
Also see Letters to the Editor on p.11

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ASIAN MS - PAST, PRESENT AND

FUTURE
Letter from the Chair, Vinnie Kochhar

Our committee is now made up of eight members;

when I first joined Asian MS there were only three!
As my time as Chair is drawing to The committee is diverse and professional with a
a close over the next few months, I legal, accounting, marketing and voluntary sector
want to share with you some of my skills base. Several of our members have been
thoughts about Asian MS past,
awarded or shortlisted for awards by the MS
present and future.
Society. We also have many other talents, Saleem
Quadri is a full time artist and our own Trishna
Asian MS was founded in 1997 by Bharadia danced her way into the hearts of the
Sanjay Chadha and Gurjit Sihota, nation by being nominated and chosen to take part
both Asian people with MS who met by chance.
in the first ever People's Strictly for Comic Relief
Sanjay and Gurjit had both felt that they were the
recently! There is a serious side to our work but it
only Asians in the UK with MS! They felt isolated and is also about having fun! We seek to talk about
misunderstood by their own communities. Together
serious issues in an engaging way. We welcome
they decided to form Asian MS to raise awareness in everyone's contribution great or small. It makes us
the Asian communities from which they originated, in the team we are!
East London and the Midlands, with a handful of
others. Sanjay contacted the MS Society in 1997 and We have a quarterly newsletter which has a wide
has ensured that Asian MS has remained very
circulation. It is a detailed and very informative
closely linked ever since.
publication. We are a language resource and have
helped with publications in many different
Asian MS became a national support group from its
languages. We support our members and the MS
inception; it had the wholehearted backing of the MS Society by providing cultural intelligence as we
Society, even sharing its charity number. It is a
have a unique understanding of many cultural
unique support group as it has always remained and issues. We like everyone to have a voice so we
still operates under the auspices of the MS Society.
encourage our members from all walks of life to
get involved in any way they choose.
There are around 180 families who regularly support
and who are supported by Asian MS. We have over
Our contacts range from some of the best medical
names in the world of MS, Dr. Raj Kapoor, Dr.
300 followers on Twitter and over 600 followers on
Omar Malik, Prof. Gavin Giovannoni and Dr.
Facebook. It is a very active and young group. Our
Sreeram Ramagopalan, to celebrities such as
members come from all over the UK and we
Kulvinder Ghir of Goodness Gracious Me fame
represent all the major ethnic groups and main
and DJ Rav Patti! We have been supported by
religions of the South Asian continent. We also have Lord Bilimoria, Lady Bagri, and Dr. Ram Gidoomal
good links with our counterparts on the Indian subfrom the world of politics. Dr. Lalvani of Vitabiotics
continent. Our sphere of influence is even greater as has sponsored several of our events.
we often support the Asian diaspora with MS around
the world.
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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.

EDITORS NOTE:

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/

As Vinnies time as Chair comes to an end, we

Meanwhile, World MS Day unites the global MS
at Asian MS would like to say a wholehearted
community to raise
thank-you for everything that she has done.
awareness, share
Vinnie has worked tirelessly in her spare time to
stories and campaign
ensure that the groups aims and objectives are
with and for those
met, often holding committee meetings at her
affected by MS. It is
own home in order to make it convenient for
the only global campaign to raise awareness for the
everyone to be able to attend.
condition. It started in 2009 and has since grown from
strength to strength. This years theme will be access.
Being part of Asian MS is often a family thing,
Equality of access isnt just about physical access to
and Vinnies family is no exception. Her
buildings, but also access to the same facilities, services
husband, daughters, sisters and extended
family have all supported Asian MS, whether its and tools enjoyed by people who dont have MS.
on a day-to-day basis when shes been dealing
The campaign will focus on access to diagnosis,
with Asian MS business or its been through
treatment and support, leisure and travel facilities,
attending our events.
buildings, training and employment, and education. For
She has been a crucial part of the success of
more information visit the World MS Day website:
Asian MS events, making a formidable team
http://worldmsday.org/
with Saher! Im sure she will continue to support
us and all that we strive to achieve!

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FAREWELL SAHER
After seven amazing years at the MS Society, Saher She was keen to give Asians with MS a voice in
Usmani, the Support Groups Officer, has decided it is many key discussions at the MS Society. She
time for a change.
would represent our interests at many important
meetings and yet she always had time to make a
Saher has been cup of tea and chat to anyone who turned up at
the first point of the MS National Centre with a problem.
contact for
Always quick to play down her hard work and
many Asian MS
dedication, I would like to stress that Asian MS
members.
owes Saher a great debt of gratitude. She has
Several new
been instrumental in her gentle way in
recruits
commented on her warm smile and friendly manner! bringing Asian MS to a prominent position in the
She was always sensitive about how a newly
world of MS. We all wish her well in her new
diagnosed person might be feeling.
endeavours and will miss her greatly. Vinnie
Kochhar
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.

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 Ive 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 youve
put in over the years and the support that youve
given to me and my family! Youre 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! Shell be missed greatly!

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FUNDRAISING FOR ASIAN MS

Where do the funds go?

The Amiloride and Phenytoin projects

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.

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 weve 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.

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 reenact your real life experience?

Sanjay Chadha received an award for his

performance in All of Me; a short film based on his
SC: Id sum it up with, firstly, feeling very surreal,
real-life experience of what should have been a
that this did actually happen to me. Very angry, that
standard hospital admission.
it was so unnecessary for me to have gone through
The film tells the true story of how Sanjay was taken the suffering that I had to go through. And; sad, that
into hospital for a UTI - not an unexpected thing for actually there were really good NHS staff, that were
a man of his age, especially as a man with MS. But trying to help, wanted to help; but because of the
pressures theyre under, because of their
the care, or lack of care, he experienced was
managers, that they were unable to give the
something unexpected. Some of the staff at the
counsel that they would have liked to have given.
hospital failed to take his MS into consideration,
But from my point of view; it was a very difficult
didn't appreciate what he was going through, and
period in my life.
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
Page 9

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.

to go through it!

BN: And of course Cynthia was the narrator on the

film as well How did working with the Digital Team
help develop the project?

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
SC: I must say, it did take us quite a bit of time to get vulnerable??! Having secondary progressive MS
to the truth of the story, to write and re-write, but the the video has made me more aware of my future
Digital Team gave us that time, that space for us to but with the help of my daughter, the MS society
really work it out and bat it around. And actually,
and hopefully a change in staff attitude, things will
then engaging other partner organisations to help us be less painful, confusing, dangerous and stressful
with the whole process, was invaluableand Ben
when staying in hospital.
was fantastic!
So thats just a few of the comments; I just want to
BN: Well we worked with an external agency, Malt
say thank you very much, its been a pleasure
Films, didnt we? Soinitially you came to me and
working with you on it, and thanks very much for
said; weve got this story and we want to do it as a
telling your story to us all.
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 thats what happened.
CARERS UPDATE
And finally Id just like to ask you; whats the reaction
to the film been?
The State of Caring
survey focuses on how
SC: Ive had some very variable reaction, but the
caring affects finances,
majority has been of shock. That did this really
health and a person's ability to live their own life.
happen to you? and I think some people being
horrified that this kind of thing does happen in NHS By completing and/or sharing this survey with
hospitals. And thats even from people from NHS
carers, you can help us expose the reality of caring
England whove seen the video and tried to use it in in 2015.
some of their training. So overall for the MS Society,
Im hoping its had an even wider impact around the Carers Week is an annual campaign to raise
world.
awareness of caring, highlight the challenges
carers face and recognise the contribution they
BN: It continues to have an impact with
make to families and communities throughout the
professionals and people online. Ive just got a few
UK. It will run between 8th and 14th June 2015 and
comments to read, from people who have seen it
online;
is supported by the MS Society. Go to:
http://www.carersweek.org/
I was once in this mans shoes. This can happen to
anyone of us with MS.
Check out Tea with Dees latest guest Bipin,
who is a full-time carer for his wife Kiran, on p.
Its not just hospital, but rehab too.
13.
Thank you for this video Sanjay, I will share it for all
The Care Act comes into force from 1 April. For
the nurses to see, it is a disgrace that you had
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.
Trishna talking on the BBC's "One Show"

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.
Trishna speaking about MS at an
awareness-raising event

-Manisha Chandarana

EDITORS NOTE: If you would like to write to us

here at Asian MS we welcome your opinions and
My view is that anyone with MS who takes the time
feedback. Please email:
and trouble to get their story heard, is doing a service
asianms@mssociety.org.uk
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
To read more about Trishnas journey on
had primary progressive MS and was severely
the Peoples Strictly, check out her blog
affected by it, and she put her story onto the national
on the MS Societys website:
stage. Her MS did not represent the many people
with Relapsing Remitting MS who are still able to
http://www.mssociety.org.uk/mswalk, run, jump and play sports, for example. But this
support/communityblog/2015/03/%E2%80%8Bpeoplesdid not mean she had any less right to have her case
strictly-trishnas-story
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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 MSs 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

TRISHNAS BLOGS
Read Trishnas latest
blogs, which include how
she prepared for her
Peoples Strictly
experience:
http://www.mssociety.org.uk/mssupport/community-blog
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!

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 selfconfidence, 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/

Page 12

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 youd like to hold one
then check out the website to register for
your pack: http://cakebreak.org.uk/

On the Asian MS Facebook Group

were talking about marriage and MS,
the Disabled Golf Association and optic
neuritis and the repurposing of drugs
among other things!

Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales
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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 Peoples Strictly. You go girl and show them
what you are made of. Wishing you all the best.
Dee x
preparing afternoon tea and snacks, preparing dinner,
Name: Bipin Vaghela
changing her clothes at night and putting her to bed. I
Marital status: Full time
also have to see to all her personal needs throughout
carer
the day. It is a full time job in itself but I love being there
Relationship to MS: Wife
for her whenever she needs.
has had it for 15 years
Children: Three!
How familiar are you with any symptoms that Kiran
has or may have? Very familiar (thats an
understatement). I have been through it all with her
from when Kiran had Relapsing Remitting MS, what to
What was your initial reaction when Kiran was do when she had a relapse, her secondary progressive
diagnosed? I was broken and confused but had diagnosis along with Trigeminal Neuralgia. I am also
to be strong for my wife and our children. (At the
fully aware of how to manage her medicines and
time, our children were only 6, 8, & 10). It was all dosage.
very new to us and there was a lot to learn
regarding the diagnosis.
How do you help Kiran manage her symptoms? I
am there to assist her with anything she wants from
How much do you know about MS/what have
helping her to walk and get about to holding her hand
you learnt? I did not know anything about MS
when she needs support.
initially but have learnt plenty over the years. A lot
more information and support is available now.
What support does Kiran receive from
family/friends? My children take over if I have to do
What support do you provide for Kiran? I
some work outside. I have to admit that friends find it
provide Kiran with complete support, from getting difficult to help physically but they provide us all with
her out of bed, making breakfast, showering her, the mental support.
putting on her clothes, brushing her hair,
preparing lunch, taking her out for shopping,
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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
It is often said that those with progressive MS
and her disabilities.
have been forgotten about, with much of the
Are there any particular experiences/obstacles
research and focus being on those with the
that you want to share? I feel that in the Asian
relapsing remitting form of the condition. This is
community people think that there is something
changing, however, not least due to the
wrong with Kirans legs or she has had a stroke. It is
Progressive MS Alliance, which was set up in
more so with the older generations. This is mainly
due to the fact that they do not know what MS is and 2012.
how it affects people. We need to spread the word
and also educate the community with regards to MS The six founding members are MS societies from
the UK, USA, the Netherlands, Italy and Canada
and even other illnesses.
and the MSIF (Multiple Sclerosis International
What tips, if any, can you give to anyone living
Federation). They jointly committed to
with someone who has MS? Most importantly, you accelerating the development of treatment for
need to have patience and keep calm. People need progressive MS (SPMS and PPMS) via the
to appreciate that movements in people with MS can
removal of technology and scientific barriers.
be slow or delayed. Physical and emotional support
is a must.
Formalised in 2013, the alliance has four strategic
aims: to raise the profile of progressive MS and
How did you hear about Asian MS ? Are you
accelerate progress; secure resources and
involved with Asian MS? I remember being there
when Asian MS was set up about 10 years ago. My globalise research funding; inspire, galvanise and
cousin, Mukesh Jethwa called us and asked for our engage; and deliver operational excellence. The
support. I am not involved on a day to day basis but alliance seeks to learn from the research being
do attend the AGM and other functions.
undertaken into progressive MS and connect
efforts to speed up progress.
Your personal feelings or thoughts on MS? I feel
that it is very difficult to look forward and plan ahead, If you would like to make a donation to help the
but I am staying positive and hoping that there is a
Progressive MS Alliances efforts, you can do so
cure just around the corner.
by visiting their website, where you will also find
more information about the collaboration:
Any special message for your wife? I love you
http://www.progressivemsalliance.org
and don't want you to ever lose hope.

PROGRESSIVE MS
ALLIANCE

DEADLINE for the next edition of the

newsletter is 31st May 2015. Please email
us your stories, links, photos and news!
Page 14

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?
Page 15

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. Margarets
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 Peoples 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!

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
Societys research page at:
http://www.mssociety.org.uk/ms-research/getinvolved-research/be-in-a-study

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 faceto-face, online (email or Skype) or on the telephone.

Understanding fatigue in children and

adolescents with MS, Kings College London:
This interview study seeks to improve
Comparing Functional Electrical Stimulation
understanding of fatigue in childhood MS. Young
and Ankle Foot Orthosis in the management of people with MS and their caregivers will be asked to
foot drop in MS, NHS Ayrshire and Arran plus talk about their experiences of MS-related fatigue
various Scottish universities: Looks at FES and during a 30-60 minute interview with a researcher.
Children and primary caregivers will receive a 10
AFO in managing persistent foot drop in people
with MS. Will investigate effects of both on walking shopping voucher each as a thank you for their
participation. Children are classed as 18 years old
speed and oxygen consumption, as well on
or under. Interviews can be at home, over the
fatigue, physical activity levels, quality of life,
telephone, at Kings College London or at Great
stability and disability. It will involve being given
Ormond Street Hospital for Children if you are a
AFO or FES treatment depending on which group patient there.
you are assigned to. You need to be an MS patient
within certain Scottish NHS areas and have foot
drop.
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
Abdominal massage for neurogenic bowel
treatments. For more information please visit:
dysfunction in people with MS, Glasgow
http://www.mssociety.org.uk/ms-research/getCaledonian University: Will explore whether
involved-research/ms-tissue-bank
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 The UK Clinical Trials gateway allows you to
search for clinical trials and studies related to MS.
a carer to do it for you. Initial meeting with
Type multiple sclerosis into the search box:
research nurse will take place at one of ten MS
http://www.ukctg.nihr.ac.uk/default.aspx
clinics or hospital sites in the UK.
Page 16

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

LATEST RESEARCH & MS

IN THE NEWS
Living with the hidden symptoms of MS
Spinal Cord Protein Possible Drug Target for MS
Can Emotional Health Influence MS Treatment Outcomes?
Blood pressure drug protects against symptoms of multiple sclerosis in animal models
Shift.MS presents #GOOB (Good Out Of Bad)
Novel Switch for Autoimmune Diseases Could Play Role In MS
Infection with Helicobacter pylori may protect against MS risk in women
University of Cambridge's Alastair Compston wins 2015 John Dystel Prize for MS Research
Curcumin and Multiple Sclerosis
Exercise may improve cognitive performance in people with RRMS
Where's the New Research on Progressive MS?
UCLP 6th Research Day overview
Bladder Drug Re-Grows Myelin, Could Help Ease MS Symptoms
Coffee and MS
Two Years Ago, MS Hit The NBA
How do you raise awareness of MS when it varies so much from person to person?

Page 17

Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales
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