Asian MS Newsletter

HIGHLIGHTS OF THIS ISSUE.......

ISSUE 2, 2015

.A Message From The

Editor

All the usual useful numbers and

Its summer again and we always like

to hear about peoples travelling
experiences, in anticipation of the
summer holidays. Abhishek uses
travel to stay positive about MS and
you can read his story on p.3.

Travelling with MS Abhisheks

Were saying farewell to Vinnie Kochhar, who has come

to the end of her term as Chair. We wish her well and also
welcome Rani Kaur who has stepped into the role
temporarily.

Believe & Achieve a project

Finally, the month of Ramadan has started and one

Muslim Asian MS member was kind enough to send me a
link about what you can get out of Ramadan if youre
unable to fast. Do check it out! http://seekershub.org/ansblog/2011/09/01/how-can-i-benefit-from-ramadan-when-icant-fast-due-to-being-ill/ You can also find out
information about fasting and MS here:
http://www.mssociety.org.uk/ms-resources/fasting-andms-factsheet

News and Happenings

contacts
story

Farewell Vinnie
World MS Day a roundup
by the EMSP

Staying in the driving seat

Tea with Dee Dee chats with

Manie Walia

MS in the News
The latest research studies and

clinical trials

Have a safe, healthy and happy summer, and as always

please past this newsletter on to whoever may be
interested!
~Trishna x

www.facebook.com/trishnabharadia2015
@TrishnaBharadia
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.

Rani Kaur - Support Officer & Acting Chair

Mukesh Jethwa - Treasurer
Trishna Bharadia - Newsletter Editor
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
Page 2

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Travel - The new positive inspiration to see the world

Travel is an activity
lots of us love
experiencing.
Being disabled can
certainly cause a
hindrance to
seeing the world.
There are so many
questions that come to mind when planning or
just thinking of travelling somewhere exciting.
You need to plan and know where you want to
go. Is the place you are staying accessible?
What medications should you take while
travelling? All these questions can certainly make
a person living with a disability even more
stressed.
It used to make me stressed, but now no more!
Being disabled does not stop me from stepping
out of my comfort zone.

spearheaded a program in Indias seven tiger

reserves. I travelled everywhere within India and
abroad, and I received
numerous honours/awards in
the field of wildlife
conservation. However, many
a time I used to get tired very
quickly and did not know that
it was MS.
In 2007, while tracking tigers in a tiger reserve, I lost
vision in my left eye and after an MRI Scan, various
tests and my past history, the Indian doctors confirmed
I had optic neuritis and diagnosed me with RRMS. I
got married to Katherine, my then girlfriend for over
nine years, in 2009 and we came to stay in Edinburgh
permanently. In 2010 I had an episode in Edinburgh,
where officially I was diagnosed with MS.
Travelling with MS

Being diagnosed with MS

I believe that staying positive is very important, and

while it is easy to say this, it is often inspiration from
My name is Abhishek Behl and I was born in
something or someone that enables people to do just
India, where I experienced my first MS relapse
that. My inspiration comes from travel. The adventures
when I was 21, in 2000. I was not sure what it
I encounter on my travels, the people that I meet all
was. Half my body went numb and I had difficulty add to this positive outlook. Travel for me makes
with movement and coordination of my fingers. I disability the new ability to see the world.
ignored all the symptoms and the flares slowly
went away. In 2003, I came to the UK to study an In 2013, I experienced another episode and lost the
MSc in Wildlife Conservation from the Durrell
ability to walk for four months. I was depressed and
Institute of Conservation & Ecology (University of housebound, eager to do something. After starting
Kent) and I undertook research on tiger
medication and receiving support from the Lothian
conservation in Indias Ranthambhore tiger
Centre for Inclusive Living, a local disability charity,
reserve.
my confidence returned and early this year I launched
my blog focusing on disability travel, Traveling with
I graduated and for the next six years carried on MS: Stepping out with Disability.
working in the field of tiger conservation and
Page 3

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

Traveling with MS is the start of my new journey.

A journey
focusing on
disability travel.
Despite living
with this painful
neurological
condition, it does
not stop me from travelling the world. As I travel,
I campaign/advocate and create awareness
about MS, tips about ways to overcome daily
tasks and problems, experience and explore
destinations that are accessible for other
travellers with a disability. Taking in all the
positives that travel has to offer whereby the blog
acts as an encouraging and an inspirational
medium to many people. Its all about my
personal memoirs, while exploring accessible
friendly destinations, reviewing and giving my
final verdict as and when I travel. My travels have
taken me to Trinidad & Tobago, Jersey, Isle of
Man, Ireland, Dubai and India.
I have also become a projecteer with The
Ripple Movement - a travel media and social
campaigning platform, where I am currently
undertaking my project called the Sclerotic
Footprints.
My Advice on Travelling
Accessible travel is slowly becoming a reality in
the travel industry and many tourism boards,
operators and accommodation providers are
changing the way they operate and
accommodating people who need assistance so
that they can travel without any problems.

Page 4

Are you thinking of travelling? Not sure about how to

go about it? Do you have lots of questions in your
mind? I would just say - Go for it! And why not?
There are a few things to keep in mind when preparing
to travel.
Always plan ahead: Long journeys can be good but
need a lot of planning. If you are on medications,
always check you are carrying extra supplies with you
on your travels. If traveling to a sunny destination
always carry protection gear like ice bags (for
injections if needed), other medication which you may
not get over the counter, travel insurance and a
planned itinerary.
Safety checks: Its very important to check everything
is safe before travelling to your destination. Check the
accessibility of areas where you are staying. Check out
any activities that may exacerbate your symptoms,
such as heat, and make sure you plan for rest breaks if
required.
And finally the main thing is to have fun, as this will
always keep you going!
It does not matter what condition you are in,
confidence and positive thinking can really help. I also
welcome readers to share their stories on my blog
section called Inspire Others let your experience
with disability inspire someone else.
by Abhishek Behl
Email: abkbehl@gmail.com
Twitter: @TravelingwithMS

Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales
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FAREWELL VINNIE
Vinnie Kochhar has been a
lynchpin of Asian MS during
the six years she has been its
Chair. She has steered the
organisation through its
largest growth period in
history and has been at the
helm during some of its most significant
moments, including seeing several of its
members being nominated/chosen for MS
Society Awards, becoming an integral part of
the MS Societys MS Life event and having
Asian MS represented on national TV during
the Peoples Strictly for Comic Relief.
The time has come for
Vinnie to make way for a
new Chair. She will be
greatly missed by all at
Asian MS, particularly her
fellow committee members who know just how
much work she has put in over the years to
make sure that Asian MS runs smoothly and is
put on the map. Often holding committee
meetings at her own house, spending
numerous hours of her free time down at MS
National Centre and travelling here, there and
everywhere, when theres been events to
organise, her dedication to Asian MS has
been second to none.
A big thank-you goes to Vinnie and her family
for everything theyve done for Asian MS!
Asian MS Support Officer, Rani Kaur,
will become Acting Chair until a new
Chair is formally voted in at the next
Annual Meeting.
Page 5

SO WHAT?
~A collection of my thoughts and
feelings by Dee Popat
So what if there are times when I have no sensation in my
legs, but I am fortunate that I have a supportive husband
who is always there to hold my hand through the ups and
downs.
So what if sometimes my energy levels are so low that I can
barely stand, but I am fortunate that I have a loving family
who will hold me up and help me to do any task I want.
So what if sometimes I cannot attend every social function
that I would like to, but I am fortunate that I have amazing
friends who grasp how I feel and tell me that it is ok.
So what if sometimes my eyes play games with me,
showing me doubles of things or even blocking the full or
partial view, but I am fortunate that I have family, friends,
work colleagues and even a friendly passerby who takes
time out of their busy routine to provide me with any
assistance that I need.
So what if sometimes I am in so much pain that I just want
to sleep until the pain goes away, but I am fortunate that I
have enthusiasm that picks me up and pushes me to "go for
it" and do whatever makes me happy.
So what if sometimes I don't know what to do but cry, I am
fortunate that I have a constant desire to "laugh, smile and
be happy".
So what I am really trying to say is no matter how we feel
and what we go through, we must always stay positive and
be grateful for all the things that we have, all the people in
our lives and most of all a drive within us which will help you
achieve whatever you desire. ~Dee Popat

Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales
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WORLD MS DAY
World MS Day took place on 27th May and was
The MS Society managed to secure awarenessmarked by events and awareness-raising all over the raising slots during World MS Day on national
media, including on Sky
world. This years theme was access, which not
News, Channel 4 News
only included physical access but also access to
and the Lorraine show.
healthcare teams, access to medicines and access to
Asian MSs very own
training and employment. Here in the UK, the MS
Trishna Bharadia
Society was particularly active, issuing a press
featured in the Sky
News report, while
release to the media that included the results of a
Radio 1 DJ Scott Mills,
survey of over 1,500 MS patients in the UK that
whose Mum has primary
looked at early symptoms and diagnosis.
progressive MS, chatted
The main findings of the survey included:
1 in 4 people with MS misdiagnosed with
having a trapped nerve
1 in 10 people with MS told theyd had a
stroke
39% of people with MS left waiting a year
or more for diagnosis
1 in 5 (20%) people had to wait between 1
and 3 years for a diagnosis following their
first visit to their GP with early MS
symptoms
1 in 4 people (25%) visited their GP over
four times before they were referred to a
neurologist for further examination
Upon receiving diagnosis, although 81% of
people had heard of MS before, one in
three (32%) didnt understand what it was
and over half (52%) said they felt anxious,
with many commenting they thought they
would end up in a wheelchair

on the Lorraine show.

There were lots of tweets
and Facebook posts
throughout the day, with MS patients, carers,
healthcare teams and supporters seeking to
educate the public about the condition. You can
watch the Sky News report here:
http://news.sky.com/story/1491255/four-out-offive-ms-sufferers-misdiagnosed
Trishna with Sky News
correspondent Enda Brady

The MS Society also produced two videos that are

available on its YouTube channels and website.
Carrying the hashtag #inthedark, the two videos
explore peoples experiences with early symptoms
and the limbo-land of waiting for a diagnosis. The
videos received a good response on social media,
with many people being able to relate to the
experiences of those in the films. You can watch
both videos here:
https://www.youtube.com/watch?v=rFonPDofQ
NI

With increasing evidence to show that early treatment https://www.youtube.com/watch?v=oOgkxn7L

Cb4
can be beneficial in the long run, it is supremely
important that people are diagnosed as early as
possible.
Page 6

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

The European MS
Platform (EMSP) is the
umbrella organisation for
39 MS societies from 34 European countries.
EMSP represents their interests at the
European level and works to achieve its goals of
high quality equitable treatment and support for
people with MS throughout Europe.

To find out more about what happened at the EMSPs

annual conference, they have put together the Top 10
conference highlights on their website:
http://www.emsp.org/news/emsp-membernews/307-top-10-from-2015-annual-conference
See Trishna speaking about the importance of getting
young people involved and engaged, and the important
role that employment can play for a young person with
MS:
https://www.youtube.com/watch?v=FuX1TF1nctk

They recently held their annual conference in

Warsaw, Poland, with the theme being
Reaching forward. Access to employment and
participation. Running in parallel to the main
conference was the EMSP Youth Forum, the
WHAT DOES THE NEW UK
theme for which was Identity, where
GOVERNMENT MEAN FOR PEOPLE
employment can play a key role. Asian MS
WITH MS?
Trishna Bharadia was honored to be asked to
speak at and help to convene the workshops for
The votes have been counted, the new government has
the Youth Forum and was very impressed by
been elected and World MS Day on 27th May also
the session on the EMSPs Believe &
happened to be the State Opening of Parliament, when
Achieve project.
the Queens Speech outlines the immediate plans of the
incoming government. Health, welfare and devolution
Aimed at providing young people with MS the
were all included and could all have an impact on
opportunities to work in supportive
people with MS. The MS Societys Public Affairs Officer,
environments, through partnerships with
business across Europe, the project has made Alfie Boe, has put together a blog post to break it down
and tell us what it all means. Read it here:
16 paid internships available to young people
with MS Europe-wide. The internships vary and http://www.mssociety.org.uk/getthe EMSP is still looking to get more businesses involved/campaigns/campaignsblog/2015/06/queen%E2%80%99s-speech-2015on board, as well to encourage more young
people with MS to apply for the roles. In order to new-parliament-raises-more-questio
apply, you must be 18-35 years old and be
diagnosed with MS. To register, go to:
http://www.emsp.org/projects/believe-andachieve/266-registration-form

Page 7

If youre interested in helping the MS Society to

campaign for change or would just like to know
more about the various issues that the society has
on its agenda, then check out the campaigns page
on the website: http://www.mssociety.org.uk/getinvolved/campaigns

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

STAYING IN THE DRIVING SEAT

The
Regional
Driving
Assessment
Centre has been in existence since 1998 and is
one of 17 driving assessment centres throughout
the country. It is also an accredited member of the
Forum of Mobility Centers. It helps in excess of
1500 people a year, most of whom are able to
return to driving or begin driving for the first time.
The head office is in Birmingham and there are
outreach centres in Oxford, Hull, Cannock,
Northampton, Worcester, Leamington Spa and
Shrewsbury

It also offers assessments for those who have

difficulty getting in and out of a vehicle as either a
passenger or a driver, or for those assisting people
to load equipment, such as wheelchairs, into
vehicles.

Motability:
If you are in receipt of the high rate mobility
component of the disability living allowance or the
enhanced personal independence payment you
can get a free assessment if you wish to lease a
car through the Motability scheme. Help is
available for the cost of adaptations too.
The RDAC and other centres around the country
should be your first point of contact to have your
RDAC sees a large number of people with various needs assessed. They will produce a report which
conditions, including MS.
you can send to the DVLA for their records which
will usually support your case for keeping your
MS symptoms that can affect a persons
licence.
driving include the following:
You must notify the (DVLA) and your insurance
Sensory (touch) problems such as
company that you have been diagnosed with MS.
numbness or tingling hands and feet
If you do not comply, your licence and insurance
Blurred or double vision, or a temporary
will be invalid and you could be fined up to 1000.
loss of sight caused by optic neuritis
Please do not be afraid to notify the DVLA as
Fatigue an overwhelming sense of
usually people with MS continue to hold a licence.
tiredness making physical or mental
activity difficult
REMEMBER RDAC are here to help keep your
Loss of muscle strength and dexterity
independent mobility!
problems with walking, balance and
coordination
If you have any questions please contact:
Muscle stiffness and spasms, tightening or
RDAC
rigidity in particular muscle groups,
Unit 11 Network Park
difficulty with memory and thinking.
Duddeston Mill Road
Birmingham
How can the RDAC help you?
B8 1AU
The centre is able to offer a confidential
Tel: 08453371540
assessment of your ability to continue driving and
Email: info@rdac.co.uk
also enable you to try out adaptations that you
Web: at www.rdac.co.uk
could have fitted to your car. Numerous clients
Twitter: @_RDAC
with MS continue driving for many years with the
proper advice and necessary adaptations.
Page 8

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(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

Page 9

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NEWS AND HAPPENINGS

LIVING WITH MS EVENTS
The MS Society is running a number of Living with MS
information days around the country. These are always very
popular and enable people with MS, their carers, family and
friends, to learn more about various aspects of living with
the condition. MS Society staff are always on hand during
the day to answer questions and its a great opportunity to
meet other people with MS. To find one near you, check out
the MS Societys events page (set the filter to Information
Events): http://www.mssociety.org.uk/events
Asian MS Trishna Bharadia will be speaking at the event in
Reading on 18th July.

NEW E-ZINE ABOUT PROGRESSIVE MS

BUILDING BRIDGES WITH

BUSINESS
When Asian MS puts on large events, we are
always looking for support from businesses
so that we are able to give our guests the
best time possible. That may be via
sponsorship, subsidised catering, raffle
prizes, printing of posters or publicity. If
youre a business that may be able to help
and you would like to be kept up to date with
upcoming events then please do email and
let us know so that you can be added to our
mailing list!

MAGNA CARTA 800TH

ANNIVERSARY CELEBRATIONS

Ian Cook, a 56 year old journalist

from Birmingham, has set up a free Asian MS was well represented during the
e-magazine for people like him who Magna Carta 800th Anniversary celebrations.
Ila Gangotra, Anisha
have progressive MS.
Gangotra and Trishna
Bharadia were chosen
Ian says: I have secondary
for their work in the
progressive MS and the elocal community for
magazine contains news (mainly
various charities,
about research for new treatments for progressive MS), as
including Asian MS, to
well as my tips on how I manage my progressive MS, based
be charter bearers
on things I do to help myself. The e-magazine is something I
during the River Relay
do by myself for people like me. There is no commercial
Pageant that went along the Thames from
sponsor and no commercial agenda.
Hurley to Runnymede over the weekend of
13th-14th June. The flotilla of boats included
If you would like Ian to put you on the mailing list for free
the Royal Row Barge Gloriana
copies of the e-magazine, which comes out every two
months, then email Ian at iancookjournalist@yahoo.co.uk (commissioned for the Queens Diamond
Jubilee). Ila, Anisha and Trishna were
carrying a replica Magna Carta aboard the
On the Asian MS Facebook Group
Royal Shallop Jubilant on the leg between
were talking about tysabri, new
Bisham Abbey and Cookham. It was a
neurological guidelines and much
wonderful experience that put Asian MS at
more! Come and join us!
the heart of a moment in history!
Page 10

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TEA WITH DEE

~ Dee Popat has chai and a chat with our members
I hope you are all in good health and spirits ? How time
flies and how the newsletter has flourished in the past
few months. Thanks again Trishna for bringing us all the
news, events, updates, features and tips.
In the past I have spoken to a few of you who have MS.
Continuing on from the last edition, where Im asking
carers, family members and friends to get in touch to
share their journeys, experiences and advice about
living with someone with MS, this time I had the
pleasure of having tea with Manie Singh Walia. As
always, I continue to look for people to share their
stories, so if you have MS or know someone who does
and would like to have your say, please email either
myself (on facebook) or Trishna. Hope to hear from you
soon! Dee x
Name: Manie Singh Walia
Marital status: Single
Relationship to MS: Mum
has had it for 15 years
Occupation: Restaurant
owner

working person and she didnt let things get to her, her
reaction was pretty positive, always believing that she
will get over this and get better.

How familiar are you with any symptoms that Kiran

has or may have and what do you do to help? My
mum has a lot of stiffness in her legs which is
temperamental but when it occurs it can be painful for
her, so we try to make things as easy as we can for
What was your initial reaction when your mum her, for example she has her own bedroom with
was diagnosed? I was confused, I didnt know
shelves next to her bed so that she can access things
what MS was but my dad seemed serious
easily. She also has space to move around with her
about the subject and then that is when I
walking frame.
researched it and realised what MS was really all
about.
My mum also has blurry vision and bladder issues. We
have had to build a toilet downstairs as we know that
How old were you when your Mum was
her symptoms can sometimes have her going to the
diagnosed? I was 15.
toilet often. As for her blurry vision, we have provided
her with black markers and large notepads so that she
What was your Mums reaction to the
can clearly see what she writes down otherwise it
diagnosis? Although everything seemed weird to would be difficult for her.
her at first, for example the blurry vision and the
weak nerve reaction, she didnt think much of it.
She has always been a very strong and hard
Page 11

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(07451571)

What changes adaptations did your family have

to make (if any) following the diagnosis? We just
had to be more vigilant with her and make sure she
doesnt over do things as she was previously a very
pro-active person.
What support do you and your family provide to
your mum? We provide her with fresh food all the
time, so that she gets all the vitamins and minerals
she possibly can. We also do all her shopping and
take care of all the house cleaning and general
duties. However, she still likes to help out and that
provides her with a little bit of exercise.

Are you involved with Asian MS? No, however I

do receive the newsletters. I have been to one
event and know that the organisers are doing a
great job. I would also like to thank Trishna for all
her help and all the positive energy she always
provides. She is a positive bumble bee, buzzing
around helping others! She leads a great example
for someone who has MS. I would also like to
thank my cousin Punam for her contribution with
MS - she works for an MS organisation and does
regular charity work for MS.

Do you know anyone else who has MS and

what interaction do you have with them? Yes,
my cousin Bobby and friend Rakesh, who are
Are there any particular experiences that you
both in their 30s, have been diagnosed with MS. I
have gone through with your mum that you want am always here for them when they need me and
to share? I feel that sometimes she can be
hope that they will remain positive and optimistic
vulnerable to strangers or something that she has
for the future; they are not alone.
seen on TV offering the wrong advice. She
sometimes doesnt like to believe that she actually
has MS, but we as a family deal with this in a kind
Does your mum interact with others with MS ?
and appropriate manner and offer as much support If so when/ where do they meet? Unfortunately
as we can.
she doesnt, however, whatever research I do for
her, I would explain it to her in an easier fashion
so that she understands everything.
What advice, if any, can you give to anyone
living with someone who has MS? Exercise,
exercise, exercise! Keep the blood flowing! I always Any special message for your mum? Before
encourage my mum to do regular stretches and
my mum was diagnosed with MS she was as
move around as much as possible. Eat well, and try strong as steel and as quick as a horse. She is an
to stay as pro-active as possible. I would also
inspiration and I cant help but love her positive
recommend reading; knowledge is power as they
energy even though all these things have slowed
say and there are many excellent books on health
down due to the MS.
and general wellbeing.
My message to my mum and anyone else
I would also advise people to always be positive.
suffering from MS would be to always remain
My mum is a great example of this and, although
optimistic and have faith. We are a team and we
she sometimes feels poorly, she is always grateful of will figure things out to ease the symptoms, until
what good health she actually has and I believe that we find a cure.
is the right attitude. With MS you have good days
and bad days and with the right positive mind-set
I would like to leave you with a quote that my
you can change even the bad days to good days.
mum always says to me before I leave the house:
Be Happy.
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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

Investigating physiotherapy and rehabilitation

services for people with progressive MS an
MS Register survey, University of Glasgow:
Will explore how people with progressive MS feel
about current physiotherapy services, how the
services vary across the UK and what other types
of rehabilitation services are currently being used.
Participants need to register with the UK MS
Register and all those with progressive MS will
receive an email notification when the survey is
live (expected to be June 2015). The survey will
remain live for three months.

Social economic costs, quality of life, and

experience in multiple sclerosis patients and
their carers - the IMPRESS (International
Multiple Sclerosis) study, The London School of
Economics: Explores the experiences of people
affected by MS, gathering evidence and generating
debate on the merits of moving away from using
relapse as a measure of disease progression to
using a more accurate diagnostic follow-up. It will
also assess the socio-economic impact of such a
change. There are two surveys, one for patients and
one for carers, which can be found here,
respectively:
https://lse.qualtrics.com/SE/?SID=SV_0ILBCnlW
0bk4Qbr and
https://lse.qualtrics.com/SE/?SID=SV_cYFCYVT
4I2po1Mx

Researching the risks and benefits of disease

modifying therapies (DMTs) in MS, Royal
Holloway: This study is part of a PhD project that
hopes to find the best way of providing information
about the risks and benefits of disease-modifying
medications to people with MS. To do this, a survey
has been set up to ask people with MS about their
experience of receiving risk and benefit information
Abdominal massage for neurogenic bowel
about their medication and their current level of
dysfunction in people with MS, Glasgow
awareness. It also aims to find out the sources that
Caledonian University: Will explore whether
people with MS use for information about
abdominal massage in addition to advice can
medication risks and benefits and how these could
improve faecal incontinence and related symptoms be improved.
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
The MS Society Tissue Bank allows both people
research nurse will take place at one of ten MS
with and without MS to donate their brain and spinal
clinics or hospital sites in the UK.
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/getThe UK Clinical Trials gateway allows you to
involved-research/ms-tissue-bank
search for clinical trials and studies related to MS.
Type multiple sclerosis into the search box:
http://www.ukctg.nihr.ac.uk/default.aspx
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales
(07451571)

LATEST RESEARCH & MS

IN THE NEWS
Dating and Disability
MS Warriors: A documentary about how people in India cope with MS
Lottery winner Peter Congdon to fund multiple sclerosis facility
Massage for multiple sclerosis
Life after Strictly, MS and plans for the future: an interview with Trishna Bharadia
Landmark Study Finds Previously Unknown Link Between The Brain And Immune System
New curated information resource for people with MS is launched
Jack Osbourne and Teva Launch New Educational Multiple Sclerosis Website
Innate Lymphoid Cell Identified As Cause of Multiple Sclerosis Gender Differences
First ever awards launched for multiple sclerosis care
Former nurse starts MS awareness campaign
MS Hug, What You Should Know
Bone Loss, Osteopenia and Multiple Sclerosis Explored in New Scholarly Review
Carers needs must not be forgotten, says wife of man with multiple sclerosis
Multidisciplinary Team Approach Improves Multiple Sclerosis Relapse Care
Scientists identify cause of movement, balance problems in MS

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