Asian MS Newsletter Issue 2, 2014

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

Asian MS Newsletter
ISSUE 2, 2014
.A Message From The Editor
The last few months
have been packed, what
with MS Life, MS Week
and the Asian MS Annual
Meeting. Many of our
members have been
getting active and
becoming involved in
MS-related activities, whether its to do with
raising awareness or raising funds, its all
reported here!
We are still very interested in hearing your views
about our newsletter and theres a chance to win
a 30 John Lewis voucher if you take just a few
minutes to fill in our online survey. It would be
much appreciated. The deadline for entry into
the prize draw is 31
st
August, however, the
survey will be available to fill in beyond that
date.
~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

Report on the Asian MS Annual Meeting
2014

Calming the Mind; how mindfulness can
help in MS

Fundraising with tea and running (not at the
same time!) and how to donate to Asian MS

Looking to try something new? Why not
Volunteer with us?

All the news from MS Life and MS Week

What have our members been up to?

Tea with Dee Dee chats with Sonal Patel

Getting ready for the holiday season

MS in the News

Our resident columnist ponders the more
difficult MS issues

The latest research studies and clinical
trials

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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 - Treasurer
Trishna - Newsletter Editor
Rani - Support Officer
Abul - 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
Saher Usmani, MS Society Support Groups Officer:
0208 438 0856 or susmani@mssociety.org.uk
MS Society Website: http://www.mssociety.org.uk

MS Therapy Centres:
http://www.msntc.org.uk/
Shift.ms (an online community for younger
MSers): 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

http://twitter.com/AsianswithMS

http://www.facebook.com/AsiansWithMS

EMOTIONAL SUPPORT
The MS Helpline is available to give free and
confidential advice 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 visit the
website: www.mssociety.org.uk/ms-
resources/key-publications or call 0300 1000
801.

To contact the MS Society Information Team:
Email infoteam@mssociety.org.uk or call 020
8438 0799 (weekdays 9am-4pm)

Please contact Saher Usmani on 0208 438 0856
or susmani@mssociety.org.uk if you would like
booklets in Asian languages
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Do YOU have a
personal story to tell?

If you would like to
share your personal
journey with MS
then please do get
in touch with us
here at Asian MS. Email:

PSSST... HEARD ONLINE...
Topics being discussed on the
Asian MS Facebook Group*
include: The Treat Me Right
campaign, What age were you
diagnosed?, Are you a sun lover
or sun hater?, blood letting
(hijama), MS and Lyme disease,
among other things. You can join
the discussion at:
https://www.facebook.com/groups/2
416402103/

(*You need to be a Facebook member to access this
group)

WIN 30 of JOHN LEWIS
VOUCHERS!

We need your feedback on our
newsletter to help develop it further.
Please take 10 minutes to fill out this
online survey for us. Everyone who
fills one in will be entered into a prize
draw to win 30 of John Lewis
vouchers! Deadline for entry into the
prize draw is 31
st
August 2014. Click
here or paste this link into your
browser:
https://www.surveymonkey.com/s/GDT
JN8F
DEADLINE for the next edition
of the newsletter is 31
st
August
2014. Please email us your
stories, links, photos and
news!

Asian MS has recently received several
suggestions about possible social events. If
you have an idea that you would like to put
forward to the committee about organising a
possible outing, then please get in touch
with us. One of the purposes of Asian MS is
to facilitate interaction and the development
of ties between people with MS. So whether
its a coach trip to the seaside or a visit to a
famous attraction, let us know and well take
it on board when organising our next social.
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ASIAN MS ANNUAL MEETING 2014
The longest day of the year was also the date for the
Asian MS Annual Meeting
2014. Held at MS
National Centre on 21
st

June, we were happy to
see some new faces, as
well as welcoming back
old ones. As always,
there was lots of food and drink, kindly organised by
Mukesh Jethwa, with Rita Sharma being in charge of
the kitchen on the day.

ROUND-UP OF THE YEAR
After guests were welcomed by Petula Storey, Head
of Volunteering at the MS Society, Asian MS Chair,
Vinnie Kochhar,
offered guests a
round-up of the
year.

Asian MS now has
180 families on its
database. We say families because behind each
name that is registered is often children, spouses,
siblings and parents who also get involved in Asian
MS. To address this increase in members, the
committee has expanded.

Highlights of 2013-14 include a successful Asian MS
presence at MS Life, where we added around 30 new
members; and a strong presence at the 2013 MS
Society Awards, with Priyal Raja and Trishna
Bharadia being shortlisted in the Young Person of the
Year and Volunteer of the Year categories,
respectively, and Trishna going on to win in her
category. This has really helped to raise the profile of
Asian MS. Meanwhile, our December social at Indali
Lounge, London, celebrated the MS Societys 60
th

Anniversary. We had over 100 people attend and
there was also a waiting list! There were also
numerous fundraising efforts, including Shiv
Sharmas Challenge 60, which saw him take to the
gym and raise 8,000 for the MS Society and Asian
MS. Altogether, Asian MS received around 4,000 in
donations during the year, for which we are very
grateful. This enabled us to make significant
contributions towards some key research
projects (more information on p.9).

LOOKING AHEAD
With an eye to the year ahead, Vinnie highlighted
two main areas of focus for the group. Firstly, we
plan to set up a grants scheme, which will help Asian
MS members to attend events. This will be facilitated
by a donation from member Kanti Kalidas, who has
been fundraising for Asian MS through his Masons
Lodge. More information will be provided once the
scheme has been set up.

We are also looking to regionalise, as we are
conscious that currently most meet-ups happen in
the south-east region.

A FOCUS ON SOCIAL MEDIA
Social media has played a particularly important role
this year, with Asian MS being extremely active on
both Facebook and Twitter. The Facebook page
has reached over 500 likes, while the Facebook
group now has over 250 members. The Twitter
account has over 270 followers. All have been
fantastic ways of engaging with members and non-
members, often prompting discussions on important
topics relating to MS issues. Meanwhile, the
newsletter is now available globally via Scribd, as
well as being uploaded to the Barts research blog
and the Facebook group.
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THINKING POSITIVE WITH MS
The theme for this years
Annual Meeting was living
well with MS and we were
privileged to have two fantastic
speakers: Angeliki Bogosian,
who was speaking about
mindfulness (see p.6) and
Priyal Raja, one of our members who at 21 years old
has already achieved so much despite being
diagnosed with MS
at the age of 14.
Click here to see
Priyals talk on
YouTube.
Angeliki also gave
us a taster of a
mindfulness
session that left us all feeling very calm and relaxed!
Katie Tuite-Dalton from the MS Register also told
guests about this MS Society project and urged all
Asian MS members who have MS to join.

NEW COMMITTEE
We were sorry to see several Asian MS committee
members stepping down this year. Shiv Sharma,
Samir Ahmed and Vicki Rose have decided to leave
their posts. Shiv and Vicki were particularly thanked
for their long service towards Asian MS. We were
pleased to welcome back Abul Kamali as Website
Officer, while Saleem Quadri is joining the committee
for the first time. For key Asian MS personnel see
opposite.

We still need a Membership Secretary. If you believe
you have what it takes and would like to volunteer for
this position, please contact Vinnie Kochhar via

As always wed like to thank the MS Society and its
staff for their continued support throughout the year!
Chair
Vinnie Kochhar
Treasurer
Mukesh Jethwa
Newsletter Editor
Trishna Bharadia

Support Officer
Rani Kaur

Website Officer
Abul Kamali

Co-Founder
Sanjay Chadha

Committee Member
Saleem Quadri

Committee Member
Ila Gangotra
MS Society Support
Groups Officer
Saher Usmani
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CALMING THE MIND
Angeliki Bogosian, Research Fellow at Kings College Londons
Institute of Psychiatry talks about mindfulness and how it can
help in MS

What does mindfulness involve?
Mindfulness is a technique that allows us to respond
with more skilful control to whatever is happening right
now, whether that is good or bad. It involves
redirecting our attention from worrying about what has
happened or may happen, and instead focusing on
the present with an open-minded curiosity.
Mindfulness is a simple concept. During a
mindfulness practice, participants are asked to sit
upright and to focus on something straightforward, like
their breathing. The aim is to nurture a curiosity about
these sensations not to explain them, but to know
them.

The 8-week course
Mindfulness has been consistently shown to improve
health and wellbeing. It can be used to feel calmer,
less anxious, less depressed and to think more
clearly. The National Institute of Clinical Excellence
(NICE, 2004) now recommends mindfulness, with
GPs referring adults to 8-week courses designed to
reduce stress and help prevent recurrent depression.
Mindfulness evolved as an aid to people who had
chronic conditions to which there were no medical
solutions. It has grown in its use for physical and
mental health conditions ever since.
Brain imaging studies have shown that consistent
mindful practice profoundly changes the structure and
function of the brain, improving the quality of thought,
feeling and concern for others. Mindfulness can also
help strengthen the immune system, which could be

welcome news to anyone with a chronic illness
(Davidson, 2003). A previous trial has also found
that mindfulness is of benefit to those with multiple
sclerosis, easing fatigue, depression and overall
quality of life (Grossman et al., 2010).

The 3-minute breathing space: a simple
exercise to try

Bring awareness to your posture. The weight of you
going down, the height of you going up.

STEP 1: NOTICING. Ask yourself the question,
what is going on for me at the moment? and
notice and acknowledge whatever is there,
maybe in the mind or in the body or in the
events around you.

STEP 2: GATHERING. Gather the awareness
and bring attention directly to the breath. Feel
the sensations of breathing deep in the belly and
whenever you notice that the mind has
wondered, just connect with wherever it has got
to and gently return to the anchor of the breath
in the belly.

STEP 3: EXPANDING. Expand your awareness
around the breath to include the body as a
whole sitting and a sense of the breath
breathing in the whole body. Becoming aware of
the space your body occupies in the room.
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Why can mindfulness be useful for people
with MS and their family/carers?

By becoming more mindful and more aware of
our thoughts, feelings, and body sensations, we
give ourselves the chance of greater freedom
and choice. It also means that we are less likely
to strive for too long towards goals that it may be
wiser to let go of for a while. Mindful awareness
helps us to become fully conscious of the world
as it is, rather than how we wish it could be.

Difficult things are part of life. It is how we handle
those things that makes the difference between
whether they control our lives or whether we can
relate more lightly to them. Living with a condition
like MS, it may sometimes be difficult to stay
positive, especially when you feel unwell, your
life has become restricted or your future appears
uncertain. Therefore, you may feel frustrated,
angry, demoralised, worried, anxious or
depressed.

Feeling tense, angry, stressed, anxious or low in
mood produces physiological changes like
increased fatigue and muscle pain, impaired
memory and concentration, and poor sleep. Even
if we try to shut out these emotions or ignore
them, we usually still suffer the physiological
effects.

MS symptoms plus your feelings about them can
be viewed as messengers coming to tell you
something important about your body or about
your mind. Tuning into your symptoms gives you
much more of a chance to remember to honour
your body and listen to the messages it is trying
to give you.
How can people access mindfulness courses?

References
-Davidson, et al. (2003). Alterations in brain and immune function produced by
mindfulness meditation. Psychosomatic Medicine;65(4):564-570.
-Grossman P, et al. (2010). MS quality of life, depression, and fatigue improve
after mindfulness training: a randomized trial. Neurology;75(13):1141-1149.
-National Institute for Clinical Excellence (NICE, 2004). Depression: management
in primary and secondary care. Guideline 23. London
BOOKS

Mindfulness for Health, a practical guide to relieving
pain, reducing stress and restoring wellbeing, by
Vidyamala Burch and Danny Penman.

Full Catastrophe living, how to cope with stress, pain
and illness using mindfulness meditation, by Jon
Kabat-Zinn.

The mindful way through depression: freeing yourself
from chronic unhappiness, by Mark Williams, John D.
Teasdale & Jon Kabat-Zinn
WEBSITES

http://www.breathworks-mindfulness.org.uk The
Breathworks courses are for people experiencing
chronic pain.

http://www.everyday-mindfulness.org A blog about
mindfulness, written by Gareth who has MS.

http://www.mindful.org This website contains articles,
news and short mindfulness practices.

http://www.getsomeheadspace.com Here, you can
find a free course called Take10, which is ten minute
long meditations that will give you some of the basics
of mindfulness.
NHS COURSES/ RESEARCH TRIALS
Some NHS services offer mindfulness courses for free
or at a low cost. Ask your GP, neurologist or MS nurse
to find out whether there are any available in your area.

You can also visit the MS Society and MS Trust
websites for any mindfulness trials for people with MS
and/or their family members.
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FUNDRAISING ROUND-UP
FREE CHAI DRUMS UP DONATIONS
In February, to
mark Indias 65th
Republic Day,
UCLU Indian
Society held its
very first India
Week at University
College London. It was packed with a lots of campus-
wide events, with the aim of raising awareness and
knowledge of the rich culture, heritage and history
that India has to offer.

To kick off the week, we set up a chai (tea) stall in
UCLs Main Quad. There was MS bunting, balloons,
spiced tea and Laxman the Mascot dancing to
Bollywood with an Asian MS Collection box! As we
handed out free cups of chai, individuals added to the
collection box and received further information about
MS. We raised further awareness of the condition
and its presence in the Asian population via posts on
our social media networks. In total, UCLU Indian
Society raised 109 for Asian MS and we hope to
create a tradition of collecting for the charity over the
next few years.

The MS Society is a charity that I hold close to my
heart. My mum was diagnosed with multiple sclerosis
in 2001 and I remember the MS Society and our local
branch providing my family with invaluable
information and support. Over the years, the society
has become an integral part of our family life and has
helped each one of us in different ways. For this
reason, any time that an organisation in which I am
an active member looks into choosing a charity to
support, the MS Society is always at the top of the
list! ~by Malti Bipin Vaghela
SABRINAS GREAT MANCHESTER RUN

On 18
th
May, Asian MS member Sabrina Naz ran
another BUPA Great Manchester run.

Sabrina runs for the MS Society because it is a
cause dear to her heart.
She has been involved
with Asian MS since
2012, after meeting
committee members at
the MS Societys MS Life
event in Manchester.

Speaking about the run, she says, it was really
hot, which made it hard but the atmosphere and all
the cheering got me around. Plus I was motivated
to get around for my charity. It was lovely to swap
stories at the end with the MS team and runners.
Melissa Tindle and her team of cheerers and
volunteers gave me an extra boost on the way
around.

You can still sponsor Sabrina by visiting her
Just Giving page:

https://www.justgiving.com/SabN101

Feeling inspired? Why not join the MS
Walk in London on 28
th
September? There
are two routes, a 20km one and an
accessible 10km one. You can take in
some of the capitals major landmarks
whilst raising money for the MS Society.
For more information visit:
http://www.mssociety.org.uk/ms-
events/2013/08/ms-walk-2014
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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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WE NEED YOU! MS LIFE ROUND-UP
Asian MS and the MS Society are always looking for
volunteers. Trishna Bharadia, the Asian MS
Newsletter Editor,
was promoting the
benefits of
volunteering during
MS Life and has also
recently helped to
film the societys new
welcome video for
volunteers.

There are many
different volunteering opportunities available at both
the MS Society and Asian MS. At the MS Society you
could be part of the Research Network, become a
trained helpline volunteer or fill one of the many
posts available at your local branch. Meanwhile, at
Asian MS you could run for a committee post, help
out at an event or become a support volunteer, to
name but a few options.

Benefits of volunteering include personal
development,
meeting new
people, involving
family and friends,
skills development
and personal
enjoyment and
fulfillment.
For more information contact the MS Society at
volunteering@mssociety.org.uk or Asian MS at

MS Life 2014 was a huge success. The biggest
free lifestyle and information event for people with
MS in Europe took place in Manchester over the
weekend of 26
th
-27
th
April. It is run every two years
by the MS Society.
The event was filled with exhibitors, workshops,
research talks, seminars and there was even a
cookery theatre. Asian MS was present with a
colourful stand and free mithai (Asian sweets).
We signed up many new members and everyone
who visited said they had found something useful,
whether it was information, a friendly face to chat
to or the discovery of opportunities to volunteer.
We were also well-represented in the presentation
timetable. Committee member Sanjay Chadha
spoke about Planning for the Future in the Family
and Carers zone, while Trishna Bharadia spoke
about the benefits of volunteering in the Work,
Benefits and Grants zone. Sanjays video All of
Me (see p.11) was also launched and Trishna
could be seen pinned up on various walls as she
was part of the MS Societys poster campaign to
attract new volunteers (see left).
Asian MS would like to say congratulations to the
MS Society for putting on such a fantastic event.
We would also like to say a huge thanks to
everyone who helped out with the Asian MS stand,
both in the run-up to the event and during the
weekend itself. We were lucky to have a number
of Asian MS members volunteer their time to help
man the stand and it is greatly appreciated.

If you were unable to attend MS Life, you can view
some of the talks on the MS Societys YouTube
channel:
https://www.youtube.com/user/MSSociety/videos
Trishna speaks to The Guardian about how
volunteering can help your career:
http://careers.theguardian.com/how-volunteering-boost-
career-job
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MS LIFE IN PICTURES
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MS WEEK 2014
CHECK OUT PRIYAL IN NEW
ONLINE VIDEO
Asian MS member Priyal Raja was asked to take part
in two films produced by Shift.ms
in time for MS Awareness Week.
It features six MSers, including
BBC Radio 1s Beccy Huxtable
and Shift.ms founder George
Pepper, talking about their
diagnosis, coping with MS and some of the issues
raised by another Shift.ms short film Gallop. That
short film is a story about what life can throw at you
and how you get back up. You can watch Priyal and
the others speaking here:
http://shift.ms/resources/gallop-by-msers/

http://shift.ms/resources/msers-on-belong/

ASIAN MS MEMBERS JOIN
TREAT ME RIGHT CAMPAIGN
The MS Societys
campaign for MS
Awareness week, which
took place from 28
th
April
to 2
nd
May, focused on
taking action to help
people with MS to gain fair and equal access to the
right treatments at the right time, regardless of their
situation or where they live. Currently this does not
happen, despite the licensing of new drugs and the
fact there are more in the
pipeline. Asian MS
members have been
signing up to the
campaign, which asks MPs
to support this initiative.
They have been sharing
the campaign on Facebook and Twitter and helping
the MS Society to spread the word. You too can join
the campaign:
http://www.treatmerightms.org.uk/about/

You can also check out Priyals journey
with MS in more detail in the MS Societys
magazine MS Matters. He features in the
March-April edition that is available to
download at:
http://www.mssociety.org.uk/get-
involved/membership/ms-matters-
magazine
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NEWS AND HAPPENINGS
WHEN ALL-ROUND CARE MATTERS

Asian MS committee member and co-founder Sanjay
Chadha has featured in a video put together by the MS
Society that highlights the importance of all-round care.
All of me is based on a true story.
Please do watch it. It is a poignant
and stark reminder of how important
it is that health care providers
remember to look at the whole
person and not just one particular
ailment or symptom. You can view the video here:
http://youtu.be/csvTIFp_2Dk

Sanjay has also been speaking to eHospice about
palliative care, an issue that often we dont want to think
or talk about. Check out his video here:
http://www.ehospice.com/uk/ArticleView/tabid/10697/
ArticleId/10438/language/en-GB/View.aspx

BLOGGING DEBUT FOR YOUR EDITOR

The MS Society has asked your Newsletter Editor to start
contributing to its community blog.
Trishna will be blogging about all
aspects of living with MS, with her first
few posts covering fatigue,
volunteering and side-effects from
medications. Check it out here:
http://www.mssociety.org.uk/ms-support/community-
blog

WEVE HIT THE BIG 500!

The Asian MS Facebook
page has hit the milestone
of over 500 likes! Thanks to
everyone who has liked the
page so far and please do invite your
friends to join us. Liking and sharing
our posts is a great way of keeping up
to date with what were up to and
raising awareness about MS. Join us
here:

https://www.facebook.com/AsiansWi
thMS?fref=ts

DWP PUBLISHES PIP HANDBOOK

The Department for Work and Pensions has
published the Personal Independence Payment
Booklet. This is the benefit that is replacing the
Disability Living Allowance. To download the
handbook online, please visit:

https://www.gov.uk/government/publication
s/personal-independence-payment-fact-
sheets

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 about it!
There are also free PIP
booklets available from the MS
Society. Visit the MS Societys
online shop at:
http://shop.mssociety.org.uk
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TEA WITH DEE

~ Dee Popat has chai and a chat with our members
I hope you all enjoy my first Tea with Sonal, who kindly
agreed to participate in our new venture. Im eager to
interview more of you so if you would like to have a
piece of cake, please contact me on Facebook (Dee
Popat), or via Trishna and together we will share your
experiences, thoughts and ideas with the Asian MS
community. ~Dee x

What was your initial reaction when you were
diagnosed? I was in denial and upset as I had
been diagnosed with this new illness and
needed to come to terms with how it was going to
affect me, the people around me and my life.

When you were diagnosed, did you feel that
there was enough information/literature to
help you manage MS? Yes. I was provided with
a lot of information from the hospital and there
was lots to read on the internet

How do you manage your MS? As the MS was
causing fatigue, I gave up work. I found that
resting helped and of course, the medication
helped a great deal. My husband has been a
tremendous source of additional support. He has
encouraged me to overcome my denial of MS.

What is your support network? My husband
and my family.

Do you have any experiences/achievements that
you want to share? As my legs had become very
weak, I had to use a wheelchair for a while. This was a
life changing experience. I am grateful that I no longer
need to use it and would not want to be there again.

Have you had any set backs due to your MS? I felt
sad that I had to give up a job that I enjoyed very much.
There were also a lot of lifestyle changes due to the
pain and fatigue that I constantly experienced. I have
less energy and less time to do the things I used to
enjoy. I used to love shopping in the mall however, now
most of my shopping is done online.

How did you hear about Asian MS? Through my
friend, Dee!!!!!

What has been your involvement (if any)? I have
attended some MS seminars where I have been able to
meet and make friends with others who have MS.

Do you have a message for fellow MSers?
I have been taking LDN (low dose naltrexone) for some
time now and feel that it has worked for me. I have also
found high doses of Vitamin D and as much sunshine
as you can get to be beneficial!

Name: Sonal Patel
Marital status: Married
Occupation: Medical
Sales Rep.
Diagnosed: 2009

For information about LDN and Vitamin D in MS, please
visit the Emerging Research section of the MS Societys
website: http://www.mssociety.org.uk/ms-
research/emerging-areas
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BRING ON THE HOLIDAY SEASON!
We received some very positive feedback from
readers about the holidays feature we included in
the newsletter last year and many of you wanted to
see more like it. As a follow-up and in preparation for
the upcoming holiday season, we at Asian MS have
had a look at what information and help there is
available for people with MS in general and people
with access needs in particular when it comes to
going on holiday.

Tourism For All is a
national charity that helps
people with access needs to find places to visit, stay,
eat or drink. Members are entitled to discounts on
accessible hotel rooms at certain properties in the
UK and Europe, can save money on travel insurance
policies, are able to obtain discounts on the hire of
mobility equipment, and can access time-limited
exclusive offers on accessible accommodation,
guide books, overseas holidays and travel products.
Other advantages include access to a members
forum and regular eNews bulletins, to name but a
few. To find out more information and to become a
member, please visit:
https://www.tourismforall.org.uk/
OpenBritain is a one-
stop shop for accessible
tourism in the UK, offering
a simple way to find
accessible destinations
and accommodation. It enables you to create a
personalised holiday that is specifically tailored to
your access requirements. All the properties on the
site are self-assessed. Visit them here:
http://www.openbritain.net/
Most National Trust
properties have good
accessibility, with many
providing manual
wheelchairs for loan. A
companion/carer of a paying
disabled visitor will be admitted free of charge.
For more information, visit the Visitors with
disabilities section of the National Trusts
website:
http://www.nationaltrust.org.uk/article-
1356394063324/

The Calvert Trust
runs three centers
(Exmoor, Kielder and the Lake District) that
specialise in offering adventure/activity holidays
for people with disabilities and access needs, as
well as their families and carers. There are often
specific packages that are run throughout the year
for people with MS. Activities can include sailing,
kayaking, horse riding, archery, abseiling, zip
wires and bushcraft. The centers provide
specialist equipment such as hoists, shower
chairs, commodes and mattress elevators. For
more information, please visit:
http://www.calvert-trust.org.uk

The MS Society website has a whole section
dedicated to holidays, short breaks and respite
care, including how to request financial
assistance. Visit:
http://www.mssociety.org.uk/ms-
support/practical-and-financial-
help/holidays-short-breaks-respite-care
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NEW PHONE APP CHARTS
YOUR MS PROGRESSION
A new phone app has been
launched that aims to help
MSers chart the progress
of their condition. Initially
available for users of the iOS platform, the app is free
to download from Apples app store. A version for
Android users will be launched soon.

The app has been developed by pharmaceutical
company Novartis, with the help of MS patients. It is
being backed by GB Paralympic swimmer Stephanie
Millward. It features a diary where users can log
specific symptoms and how severe they are on a daily
basis. This can then be shared with healthcare
providers, with the data being stored in easy to
understand charts.

Click here to download the app.

Are health apps good news? BBC News takes a look:
http://www.bbc.co.uk/news/health-27141119

Healthline gives its Top 15 apps for MS:
http://www.healthline.com/health-slideshow/top-
iphone-android-multiple-sclerosis-apps#2
DRAFT OF REVISED MS
CLINICAL GUIDELINE
PUBLISHED BY NICE
A draft of the revised
clinical guideline
Management of Multiple
Sclerosis in Primary and Secondary Care has
been published and registered stakeholders have
been invited to comment. Included in the draft
guideline are recommendations that cover support
and information, diagnosis, relapse treatment, MS-
related symptom management and services
provision for the NHS in England, Northern Ireland
and Wales.
There are two versions of the draft guideline
published on the NICE website. The full version
includes recommendations and full details of
evidence and methods used, while the shorter
version includes recommendations only. The
recommendations are provisional and could
change following consultation, the period for which
runs until 10
th
June 2014. The final guideline is
due to be published in October 2014.

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TACKLING THE TOUGH QUESTIONS BY T
3
Q
Does it make you feel guilty when people say to
you 'Wow, you have MS but you're doing so well -
you're still so active and we really
admire the way you've handled the
whole thing'? It makes me feel guilty
and a bit of a fraud. Why? Because
I don't think I've done anything out of
the ordinary. Plus, they don't actually know what
happens behind the scenes and that the outward
appearance of being strong, actually hides a great
deal of insecurity, fear and anger. Are there other
people in this boat but as it's not something we
talk about, we don't realise we have company?

I'll tell you a little about my journey. I was
diagnosed with RRMS, at a very early stage of
disease progression. I had some sensory
symptoms which were at worst 'uncomfortable' but
that was all. Yes, fatigue was slamming me into a
brick wall every so often (metaphorically
speaking!) but I was finding ways to cope with
that, just as my friends who were parents to
newborns were adjusting to sleep-deprivation
induced by that little bundle of 'joy'. So as far as
physical symptoms go, there weren't actually that
many things which were stopping me from being
active.

In fact, having MS gives me a reason to be even
more active as I want to build my muscles while I
can, just in case in the future it's more difficult! So
when people tell me 'you're still so active, well
done!' I think to myself, well that's nothing out of
the ordinary, why do they believe that's so
special? They then go on to say 'you've coped so
well with everything', which really makes me feel
bad because I don't think I've coped well at all!
I created this public front for my friends and
extended family, which showed a strong individual
who wasn't going to let MS turn into something
negative in my life or stop me from doing the
things I wanted to do. But people believe this
because I don't want to share with every Tom, Dick
and Harry the fact my MS diagnosis triggered
depression for many months, my emotional state
put a strain on my personal relationships and it
made me revaluate my life plans, the biggest of
which is when to have children - something which
to this day I still battle with.

So, should I share this with people and come clean
when they heap praise on my so-called strength
and determination, or am I being too hard on
myself and in fact people do realise that my
outward appearance will hide some demons, but
they're willing to accept those without questioning
and still believe I deserve the praise? What do you
think?

There is an MS Essentials booklet
available from the MS Society that deals
with mood, depression and emotions. It
gives information about the help that is
available and how you can access it. You
can download it here:

http://www.mssociety.org.uk/sites/defa
ult/files/Documents/Essentials/Mood-
depression-and-emotions-May-11.pdf

or contact the information team on 020
8438 0799 /
infoteam@mssociety.org.uk to be sent
a hard copy, large print version or audio
CD.

Page 18
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A CHANCE TO GET
INVOLVED
Research studies that are currently running are
listed below. For more information on any of these
studies, please visit the MS Societys research
page at: http://www.mssociety.org.uk/ms-
research/get-involved-research/be-in-a-study

Pain Experience in MS (PEMS), Kings College
London: Looking into the different types of pain
experienced by people with MS via a series of
questionnaires. Participants will be offered a 5
Marks & Spencers voucher as a thank you for
their time.
Personal experiences of Progressive MS,
Kings College London: A study to develop a
theoretical model of understanding adjustment
specific to SPMS and PPMS, which can then be
used to guide future interventions to help support
people with the conditions. It will consist of three
interviews and you will be given 20 for each
interview to compensate you for your time.

Depression Survey: It is estimated that around
50% of people with MS may experience symptoms
of depression at some point in their lives. The MS
Society is supporting a new national survey that
has been launched with the James Lind Alliance
to collect questions from people affected by
depression, their friends, family, carers and
clinicians. These questions will then inform the
creation of a 'top ten' list of priorities that will help
shape the direction of research into depression.
CLINICAL TRIALS

Gilenya (fingolimod) Pregnancy Registry Trial:
Aims to provide safety information on the effects of
fingolimod on pregnancy and the health and
development of the foetus and infant. Suitable for
women with MS who are currently pregnant and
who took fingolimod during the pregnancy or up to 8
weeks before their last menstrual period.

Preventing autoimmunity after alemtuzumab
treatment of MS: Aims to try to prevent side effects
of alemtuzumab (Campath/Lemtrada), namely
autoimmunity, through the use of a drug called
Kepivance (Palifermin), which alters the way in
which the immune system grows back after
someone is treated with alemtuzumab.

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

Are you interested in helping to shape the MS
Societys research programme? Why not join the
Research Network? It is a group of people affected
by MS who ensure that research funded by the
Society reflects the needs and interests of people
living with the condition, as well as helping to
communicate research in an accessible way to
everyone affected by MS. Activities might include
reviewing research applications, meeting
researchers and taking part in a research panel or
steering group. For more information, visit:
http://www.mssociety.org.uk/ms-research/get-
involved-in-research/research-network

Page 19
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Recipe from
Lubna

SPICY
MASHED
POTATO (ALOO KA BURTHA)

450g/1lb potatoes
1 medium onion, peeled and chopped
1 tomato, chopped
1 tsp ground cumin
1 tsp whole cumin seeds
1 tsp red chilli powder
Salt to taste
2 tsp lemon juice
2 tblsp chopped fresh coriander
1-2 green chillies finely chopped (optional)
1 tblsp sunflower oil
(SERVES 4 PEOPLE)

-Halve and then quarter the potatoes and boil until
they are cooked.

-Mash the potatoes, but not to a fine texture.

-Heat the oil in a non-stick frying pan and add the
whole cumin seeds, after a few seconds add the
onions.

-When the onions are soft and translucent, add
the ground cumin, chilli powder, green chillies and
salt then fry for a few moments, then add the
chopped tomatoes and stir until they have
softened.

-Add the mashed potato and mix well, continue to
fry until the spices are spread evenly through the
potatoes.

-Add the lemon juice and chopped coriander.

Lubna, an Asian MS member since 2005, has
been kindly sharing her delicious recipes
with Asian MS.

She was diagnosed with MS following an
MRI scan in 1991, with symptoms having
included optic neuritis and fatigue. While
she feels that shes slowed down a great
deal as shes grown older, she is still able-
bodied and considers herself to be very
lucky.

She joined Asian MS after she met Shiv
(former Asian MS Treasurer) at MS National
Centre. He was the first Asian person that
shed met who also had MS. She has
previously served on the Asian MS
committee.

This is Lubnas final recipe for Asian MS as
she is busy working on her website that is
filled with lots of delicious recipes like
these. Details will appear in the Asian MS
newsletter once the website has been
completed.

Do you have a favourite recipe that
youd like to share? Get in touch
with us at Asian MS if you have
something particularly yummy for
the tummy!
Page 20
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LATEST RESEARCH & MS
IN THE NEWS

Lemtrada receives NICE approval

Stem cell breakthrough sparks hope for MS cure

Care Bill is signed into law: what does it mean for you?

Empowering MS patients to follow their own path to pain relief

Seven-year old girl is diagnosed with MS

Could following a low-fat diet help with MS-related fatigue?

Singing with MS a Welsh choir of MSers

Combining estriol with Copaxone may improve MS symptoms, say initial study results

Dispelling the myth that MS is a white disease

MS discovery might explain gender gap

Bad fats may influence MS progression

Nerventra (Laquinimod) disapproved in the EU

The different facets of MS a full report in the Raconteur supplement of The Times

Fingolimod (Gilenya) licence is extended

Motor and Sensory Rehabilitation Training Benefits Multiple Sclerosis Patients Balance

Could the first sign of MS be a dodgy tummy?

Asian MS Newsletter Issue 2, 2014

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