Asian MS Newsletter Issue 3, 2014

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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales
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Asian MS Newsletter
ISSUE 3, 2014
.A Message From The Editor
It seems like just
yesterday that summer
was stretching ahead of
us. Its flown by and
were already into
autumn, with the media
telling us that Christmas
is just around the corner!
Asian MSers have stayed busy over the
summer, not least myself and Uzma Naz who
were training for the MS Societys Thames Walk
Challenge on 28
th
September. You can read
about our fundraising efforts on p.4.
Congratulations to Yusuf Ola, who was the
winner of the 30 worth of John Lewis vouchers
from the feedback survey prize draw. Your prize
should be with you soon!
Finally, the Asian MS team would like to wish
good luck to Rani, our Support Officer, who has
been shortlisted for an MS Society Award this
year! Fingers crossed for 6
th
October!
~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

Fundraising with two Asian MSers who took
on the MS Societys Thames Walk Challenge
and how to donate to Asian MS

Shining the spotlight on depression

Breathing deeply with hyperbaric oxygen
therapy

News and happenings from Asian MS

Hanya Gordon checks out some MS blogs for
Asian MS

Tea with Dee Dee chats with Karim Laljee

MS in the media

Our resident columnist ponders the more
difficult issues surrounding MS

The latest research studies and clinical
trials

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USEFUL INFORMATION & QUICK LINKS
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

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

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:
asianms@mssociety.org.uk

PSSST... HEARD ONLINE...

Topics being discussed on the
Asian MS Facebook Group*
include: potential new treatments
in the news, staying active with
MS and various surveys, focus
groups and events that are
happening in and around the UK
for MSers.

https://www.facebook.com/groups/2
416402103/

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

DEADLINE for the next edition
of the newsletter is 30
th

November 2014. Please email
us your stories, links, photos
and news!

Thank you to everyone who filled out our
survey, asking for your feedback about the
newsletter. The winner of the 30 of John
Lewis gift vouchers is Yusuf Ola. The
survey will remain open for you to add your
views until the end of the year:

https://www.surveymonkey.com/s/GDTJ
N8F

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!
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 MSERS TAKE ON THAMES PATH CHALLENGE!
At the start of summer, your Asian MS Newsletter
Editor was enjoying a cuppa and
reading the latest edition of MS
Matters when she came across
a piece about the MS Society
holding a Thames Walk as part
of Challenge MS month in
September. In what could be
described as a moment of
madness, I decided to sign up for the 20km challenge
that would involve walking from the Cutty Sark
(Greenwich) to Battersea Park in London.

Ive always loved running but knee problems mean I
can no longer cover long distances. However, walking
is much gentler and I thought Id be able to challenge
myself in a different way by completing a longer
distance than if I was running.

Fellow Asian MSer, friend and fitness nut Uzma Naz
was really excited to hear all about my latest
challenge and also decided to sign up, but for the
10km route, which would start at London Bridge.

Over the next few months we excitedly swapped
training plans, progress and aches and pains! We
both have MS, so we were also able to swap tips
about coping with fatigue and fitting training around
demanding work and life commitments. My training
involved walking between 2-5 times a week for a
minimum of at least 4km, with my longer sessions
being up to 18km; whilst still going to my regular
Zumba classes up to three times a week. I also did
yoga and cycling to help keep the muscles loose.
Uzma, meanwhile, combined weights, spin classes
and powerplate training (her normal routine) with eight
mile walk/runs around three times a week.
The walk aimed to raise money for the MS Society to
direct into research. This is something that is close
to both mine and Uzmas hearts, as we are similar in
age and want to be part of a generation that sees a
cure for MS. Challenge MS month aims to raise
125,000 for research during September.

Both of us set up JustGiving pages and were active
about promoting them to friends, family and work
colleagues via any means possible. Social networks
proved to be particularly useful and enabled us to
share our stories with people. Special thanks goes to
all those who donated and who shared our
JustGiving pages. It all helped!

The day of the walk was very exciting, not least
because my parents and fellow Asian MS members,
Ila and Ramesh
Gangotra had
also decided to
sign up for the
10km walk. I was
setting off from
the Cutty Sark at
10am, whilst the
10kers were starting at 12pm from London Bridge.
Michelle Mitchell, the CEO of the MS Society, gave
us 20kers a very encouraging speech before we all
set off. She completed the full course in an orange
wig!

The route took in some of the major sights of
London, including the Golden Hinde, the London Eye
and Big Ben. It was a gloriously sunny day and our
orange MS Society tops attracted lots of attention!

After about 5km it became apparent that myself and
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two other walkers, Alec and Paul, were breaking away
from the group quite quickly. My aim had always been
to complete the route in under three hours and I found
out that Alec and Pauls was the same. From that
moment on we spurred each other on, especially for
the final 2km when my legs were screaming with pain!

In the end, we crossed the finish line together in 2
hours 57 minutes, having completed 22.31km (we got
slightly lost and there was a diversion to the course!).
We were the first to complete the course and had
even reached the finish line before any of the MS
Society stewards had got there!

I then waited to cheer on
Uzma and my parents as they
finished the 10km route.
Uzma ran most of the route
and completed the course
(which worked out to be
11.91km) in 1 hour 15
minutes, while Ila and
Ramesh had taken it leisurely,
enjoyed some ice-cream along the way and even saw
Tom Cruise, who was filming the new Mission
Impossible movie, on the Embankment! Everyone
was really proud of themselves and we were definitely
ready for a drink and a good rest at the end of it!

Ila said that the highlight for her was when she started
to chat to a member of the Mission Impossible film
crew and discovered that his brother had been
diagnosed with MS just a month ago. She said that
they were feeling
very overwhelmed
by the diagnosis and
hadnt heard of the
MS Society or the
help and support it
can provide. She
says, knowing that
Ive now passed on the information and seeing the
look of relief on this mans face made the walk totally
worth it for me.
The 10km route was accessible so people came with
their wheelchairs, walkers and sticks too. There was
a brilliant atmosphere, with everyone encouraging
each other and cheering them on as they reached
the finish line. People came from all over the country
to take part. Some had links to MS, while others had
just seen the walk advertised and decided it was a
good cause to raise money for.

Speaking of which...... altogether, the walk has
raised around
25,000. Uzma
has so far raised
around 750,
while I have
raised over
1,900. Theres
still time to
sponsor either of us via JustGiving:

Trishna (20km) -
https://www.justgiving.com/Trishna-Bharadia/

Uzma (10km) -
https://www.justgiving.com/uzziwozzi/

Congratulations to all the walkers on their
achievements!

The MS Societys Strategic Lead for Diversity,
David Lusk, who some of you may have met
at Asian MS events, is planning to run the
Birmingham half-marathon in aid of Asian
MS. Hes aiming to raise at least 1,000 and if
youd like to sponsor him ahead of the event
on 19
th
October, his JustGiving link is:
https://www.justgiving.com/lusk13-1/

Asian MS would like to wish him the best of
luck!
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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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TALKING ABOUT DEPRESSION
The recent death of actor Robin Williams
sparked a huge amount of media attention
about depression and mental illness. Society is
generally not open about this topic, and among
Asians it seems to be even more taboo. If you
cant see it, it doesnt need fixing is,
unfortunately, an attitude that is still rife among
Asians and non-Asians alike.

According to the Royal College of Psychiatrists,
1 in 5 people will suffer from depression at
some point in their lives, and the MS Society
says that possibly 50% of people with MS
experience it at some time. Someone may have
a single episode or may have many.

Here at Asian MS we dont shy away from the
sensitive issues. MS can be an unpredictable,
life-changing and often very challenging
condition. Adjustment is important, however,
when youre diagnosed the focus can often be
on physical symptoms, while mental health is
put to one side. Even if counselling is offered,
there is still a stigma attached, especially as
within the Asian community there can be a
sense of keeping things within the family.

There is a fine line between
coping and not. Even if you feel
you may have adjusted well to a new
diagnosis, the timing of a subsequent
relapse may hit you hard. Or you
may have been trying to cope right from
the start but not managing very well.

THE BLACK HOLE

Depression isnt just about feeling a little sad.
Its a clinical condition and can become all
encompassing. One Asian MS member, Anjali
(she wishes to remain anonymous so its not
her real name), describes it as a black hole. Nobody can
see in and you cant see out. You smile but inside youre
being crushed by a pain that you cant even put your finger
on. You lose all interest in things that usually make you
happy. Sometimes youll cry for hours and you dont even
know why. Slowly the black hole swallows you up until you
feel like all hope of happiness has been extinguished.
Thats when you can feel like it would be better for you
and for the people around you if you were dead. You may
self-harm because its easier to deal with a tangible
physical pain than the mental pain. You know that theres
people who love and support you, yet in that moment in
time youre not thinking straight and you feel like nobody
will ever understand. Days can turn into weeks and you
just cant see when its ever going to end.

Anjali has been severely depressed at least twice in her
life. Both times were triggered by huge personal upheaval.
The first time (which was before she was diagnosed with
MS) she didnt seek help, purely because she didnt
understand what was happening. She says it crept up on
her and from feeling a little down due to things that had
happened, she gradually found it increasingly difficult to
cope. Before she knew it, shed been swallowed up.
Shed never known anyone with depression and its not
something that had ever been talked about. She was a
bright, intelligent, healthy young lady who felt like she was
being mentally weak for letting all these emotions get the
better of her. Eventually she says that she came out of it
after about a year, but she wasn't even sure how.
However, it was one of the toughest years of her life.

DIFFERENT SYMPTOMS

The second time Anjali fell into her black hole she also
had her MS to cope with. This led to a whole new set of
issues, as she realised that while she and everyone else
believed that shed come to terms with her diagnosis, in
fact she hadnt. At the time of diagnosis shed not been
offered any type of counselling and did not even realise
she was ever going to need it.
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Asian MS Support Officer, Rani Kaur,
can be contacted via the Asian MS
email address or on Facebook. She
will treat all enquiries in the strictest
of confidence.

This time she went to extremes. There
were days when all I wanted to do was
sleep because it felt like an escape from
reality. When I was asleep I could forget
how I was feeling, how scared I was about
what the future may hold. On the other
hand, there were times when I was afraid
to sleep because I may have had one or
two nights when my feelings would seep
into my dreams, and Id be feeling just as
bad in my unconscious state as I was in
my conscious one. When that happened,
Id be going to be bed as late as possible,
even on work nights. I remember once
staying out until 4am and having to work
the next day, purely because I didnt want
to go back to the four walls of my
bedroom and risk having nightmares.
The same thing would happen with my
eating patterns. There were times when
Id completely lose my appetite and I
could go a whole day without eating
anything. Id lie to my family and say Id
eaten outside, as I didnt want them to
worry. But then there were also times
when I wanted to eat all the time not just
junk food but anything. Just because it
would take my mind off things and the
food made me happy.

SEEKING HELP

This time Anjali was determined not to
spend another year battling on her own.
She spoke to her healthcare team, which
included her GP, MS nurse and
neurologist, and together they came up
with an action plan that included
counselling sessions, alternative therapies
to help with stress management, and a
solid exercise programme to help promote
overall wellbeing, self confidence and the
production of endorphins. She was offered
anti-depressants, however, while she
wasnt opposed to the idea, she decided
she wanted to do it on her own first. Plus she wanted to take
a holistic approach and explore various alternative and
complementary therapies.

Anjali says it was tough. Her parents, while concerned about
her wellbeing, never seemed to fully understand what was
going on.
Plus they
didnt like the
idea of her
talking about
her problems
outside the
family. She had to explain to them that sometimes its better
to be talking to someone who is completely neutral, in a
neutral environment, in order to gain perspective. Plus, she
felt she really needed professional help to develop coping
strategies that shed be able use again if she ever felt herself
falling down that black hole. I always knew that Id come out
of the depression eventually but seeking help meant
accelerating the process. Im so glad that I did, as its set me
up for the future and I feel so much more secure and
supported knowing that if it happens again I will be able to
deal with it and come out the other side a much stronger and
happier person. Id say to anyone going through a difficult
time to be aware of whether they are truly coping and to seek
help earlier rather than later, if necessary.

MS Society: http://www.mssociety.org.uk/what-is-ms/signs-
and-symptoms/mental-health/depression

MS Essentials Mood, Depression & Emotions:
http://www.mssociety.org.uk/sites/default/files/Documents/
Essentials/Mood-depression-and-emotions-May-11.pdf

MS Society Helpline: 0808 800 8000

Royal College of Psychiatrists:
http://www.rcpsych.ac.uk/healthadvice/problemsdisorders/
depressionkeyfacts.aspx

MIND: http://www.mind.org.uk/

Talking Therapies: http://www.mentalhealth.org.uk/help-
information/mental-health-a-z/T/talking-therapies/

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......AND BREATHE!
Here at Asian MS we like to make our members and
newsletter readers aware of some of the lesser
known forms of complementary/alternative
therapies (CAMs).

An Asian MS member who has recently been
diagnosed with PPMS got in touch with us to say he
was trying Hyperbaric Oxygen Therapy (HBOT) and
what did we think?

As with many CAMs, HBOT has little actual scientific
evidence to support its use in MS, which is why it is
not recommended by NICE. However, anecdotally,
many people with MS say that it helps to improve
their symptoms, including bladder issues and
fatigue. So here at Asian MS, were going to take a
closer look.

HBOT involves inhaling pure oxygen within a
pressurised chamber. This raises oxygen levels
within the blood and bodily tissues and is described
by John Bedford, who coordinates HBOT sessions
and inductions at the Chiltern MS Therapy Centre
(CMSTC), as almost saturating the blood with
oxygen. It is an accepted treatment option for some
conditions, such as severe infections and burns. In
MS, it is very much down to the individual and
whether they feel they are benefitting.

The therapy requires commitment. Available at most
MS Therapy Centres, John says usually the initial
treatment requires 15 sessions in a row - five
sessions per week for three weeks at increasing
pressure levels (although some therapy centres do
three sessions per week for five weeks). For the first
week the sessions are conducted at P2 (equivalent
to 16ft below sea level), the second week they are
conducted at P3 (equivalent to 24ft below sea level)
and the third week and beyond they are conducted
at P4 (equivalent to 32ft below sea level). After the
initial 15 sessions, one session per week is usually
sufficient. Most people are generally suitable for the
therapy and have no serious side effects. However,
if you are thinking of giving HBOT a go, make sure
you consult your healthcare professionals first to
ensure it is OK for you to do so.

Karim Laljee, Asian MS member and founder of the
Positive About MS website, underwent HBOT at
the North West MS Therapy Centre in Greater
Manchester. Although he completed the initial 15
sessions, he didnt find it particularly helped him.
However, other followers of his website have had
positive experiences. Ali Thompson says shes
been having the therapy for
four years and that its helped
with her pain. She particularly
notices it if she misses a
session. Likewise, Amy
Sandford, who has had 33
sessions, was suffering badly
from fatigue when she
started. At first she didnt think it made much
difference, however, when she looks back she says
she feels much better in herself and is able to do
more now than before. Other people shes spoken
to during sessions have said its improved their
bladder function and fatigue too.

CMSTCs John has pointed towards the increasing
popularity of the therapy. In July 2014 the centre
ran a record 325 sessions, which was double that
of July 2013. Some 25% of people being treated
were looking for help with conditions other than
MS. John believes this is because there is now
much more information about HBOT available
online and the word is spreading. However, he also
said that hed like more MS nurses and
neurologists to point patients towards therapy
centres so that they can be made aware of HBOT
and also other treatments the centres have to offer.

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NEWS AND HAPPENINGS
RANI IS SHORTLISTED FOR MS
VOLUNTEER OF THE YEAR!

Following Asian MSs sucess at
the MS Society Awards in 2013,
another member has been
shortlisted for an award this year.
Rani Kaur, the Asian MS Support
Officer, has been shortlisted in the
Volunteer of the Year category.
Now 45, she was diagnosed with MS 13 years ago.

One of her nominators, Boy Chana, says that Rani has
been a great ambassador for the MS Society across the
UK. She has held talks with community leaders, spoken
to the elderly in Asian communities to help them
understand MS and spoken to young people at local
places of worship to give them guidance and
reassurance. She has also taken campaigns arranged by
the MS Society to the communities who are not reached
by mainstream marketing and she has arranged for
people to talk in mother tongue languages at events and
fundraisers.

The Awards ceremony takes place on 6
th
October in
London and Asian MS wishes Rani lots of luck!

CHECK OUT TRISHNAS LATEST BLOGS

Your Newsletter Editor has now become a regular
contributor to the MS Societys
community blog. Her latest posts
cover why she blogs and her alter ego
Google Girl. Check them out here:
http://www.mssociety.org.uk/ms-
support/community-blog

Also check out Hanya Gordons blogs review on the next
page!
RESEARCH DAY VIDEOS
AVAILABLE ONLINE

UCLPartners 5
th
MS Research Day was held in
London in June and was attended by Asian MSs
Rani Kaur and Trishna Bharadia. Topics included
progressive MS, current and future MS
treatments, bladder control therapies, and diet
and MS. Videos of the talks can be viewed here:
http://www.ucl.ac.uk/ion/queen-square-
multiple-sclerosis-centre/research-day-talks

Also check out MS Question Time at
ACTRIMS/ECTRIMS, in which Rani participated:
https://www.youtube.com/channel/UCyTAs55
E__NlUmDeWs66Jeg

WILL YOU TALK TO THE MEDIA?

The MS Society is always
looking for people who would
be willing to share their story
with the media or liaise with
production companies,
sometimes anonymously, to provide information
and advice when they want to run a storyline that
contains MS.

Different projects require different people with
MS, depending on their symptoms and
experiences. Would you be willing to become a
media representative? Jenna Mahoney at the MS
Societys Press Office, would be very happy to
hear from you if you are. You can contact her for
more information by emailing:
pressoffice@mssociety.org.uk
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BEST OF THE BLOGS by Hanya Gordon
I edit a feature called 'Blog Post of the
Week' for Shift.ms where a blog that
I choose is featured every Thursday
on their Facebook Page, so I was
asked if I'd like to do a roundup of
some of the MS blogs online for Asian
MS.

Blimey, where do I start? There are so many blogs. So
many good and useful and informative and funny blogs
about MS. I will try and choose just a few. This is just a
personal selection. Get online and find blogs that you
enjoy. Why not start your own blog? 'Blogspot' and
'Wordpress' are two really popular sites to visit for anyone
thinking of starting a blog.

If you find a really great blog, or if you write a really great
blog (!) then do email me at hanya@shift.ms and I could
feature your blog as Blog Post of the Week' on the
Shift.ms Facebook page. I'd love to hear from you!

http://positivelivingwithms.com/2014/04/27/what-ms-really-
feels-like/

This is actually a blog post and it is called, 'What MS really
feels like.' It is a great entry by 'Positive Living with MS'
outlining some of the symptoms that we live with 'every
day'. Those of us with MS know what it feels like, but it is
worth having a read and reminding yourself of the wide
range of symptoms, many of which are hidden, that people
experience and which makes MS the 'snowflake disease,'
as 'no two are the same' (cue hashtag #notwothesame). It
is also a great introduction if you are trying to explain MS
to a friend or colleague.

http://swimminginstormyweather.wordpress.com/2014/06/0
3/we-stumble-and-fall-in-the-fullness-of-time/

I love this blog. This really is one of my most favourite! I
love the style, and the way that it is written. I love the use
of language.
http://www.msconnection.org/Blog/April-
2014/Simple-Pleasures
This is a blog from 'MS Connection' looking at
the 'simple pleasures' and reminding us to
take note of them, to take joy from them, and
to take pleasure from them. We are so busy
living our lives, and perhaps especially living
with MS, dealing with frustrations and flare-
ups and everyday symptoms, that it can be
easy to forget to take time and take note of the
simple pleasures; of those simple everyday
things that make us happy and that perhaps
we take for granted. A cup of tea. A cuddle
with the cat. A giggle with a friend. This
reminded me of a quote by Robert Brault, a
quote that I love: Enjoy the little things, for
one day you may look back and realize they
were the big things.

http://kingdomofthesick.blogspot.co.uk/2014/0
7/rests-relapses-and-restarts.html?spref=fb

This blog articulates what it can feel like living
with MS. It highlights some of the daily
struggles, and disappointments that we might
experience. It talks about the loss of
independence and using a wheelchair. But it
remains positive, dealing with whatever MS
throws at them. It offers the opportunity for all
of us to reflect on how and what we are doing.
The message is not to lose hope. To take
each day at a time, and to enjoy the journey.

Dont forget the MS Trust blog, featuring
various posts, from fundraising to research:
http://www.mstrust.org.uk/interactive/ms
trust/
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http://pinsandprocrastination.com/15-things-not-
to-say-to-someone-with-a-chronic-illness-or-
invisible-illness/

MS can be an invisible illness. You cannot tell
that I am ill just by looking at me. Chronic illness
includes: chronic migraines, lupus, fibromyalgia
and, of course, MS. It can be difficult to know how
to deal with a friend or loved one who has a
chronic or invisible illness. It may be difficult to
show support or know what to say. In this blog
Susie helps by explaining 15 things you should
never say to someone with a chronic illness.

http://seeingms.com/

This isn't exactly a blog. This is 'Seeing MS'. It is
a website, and app, and a video entitled
'Exposing the Invisible Disease.' 'Seeing MS' is a
project that invited nine photographers to each
depict a symptom of MS in a single image. The
images were inspired by stories of those touched
by the disease. I find the film very powerful, and I
just wanted to share it with others. I do urge you
to watch it. I like the way the photographs visually
capture some symptoms that are not always easy
to put down in words. This project acknowledges
that many symptoms of multiple sclerosis are
'invisible;' they go unnoticed by everyone except
the person living with them.

http://multiplesclerosis.net/infographic/top-10-
most-common-ms-symptoms/2/

This blog post looks at the ten most common
symptoms. Yes, you probably know them all too
well. Yes, you probably live them, and yes, they
are unpleasant and actually, you really don't need
reminding. But somehow it is worth having a look,
worth being reminded and certainly it is useful as
a way of explaining to others who may not know.

http://multiple-sclerosis-research.blogspot.ch/

The aim of this blog is for the Barts and The London
Neuroimmunology Group to update you on the latest
research in MS, with an emphasis on the research
that they are involved in and with new clinical trends
in the field of MS. So, all of the posts are clinically
relevant, and this is a great way for those more
scientifically-minded to keep up-to-date of what is
new.

iamnotdrunkihavems.blogspot.co.uk/?m=1

This is perhaps a little bit cheeky, but, I really can't
do a roundup of blogs without at least mentioning my
own! Yes I write a blog about various things in my life
and how MS has had a huge impact all areas of it. I'd
be thrilled if you'd visit my blog, have a read, and
perhaps leave me a comment. Im also on Twitter
under @HanyaGordon.

EDITORS NOTE: The MS Societys own
blogs include a community blog and
research blog. In the community blog you
can join regular bloggers like Trevis,
Ann, Barbara and Chris in their musings,
stories and journey with MS. Many of
them also have their own separate blogs,
details of which can be found on their
individual entries. Select posts from the
community blog are also published in the
MS Societys membership magazine MS
Matters.

***********************************

Meanwhile, Carnival of MS Bloggers,
which can be found at
http://www.msbloggers.com/, provides a
monthly compendium of MS-related blog
posts from around the web.

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TEA WITH DEE

~ Dee Popat has chai and a chat with our members
I hope you are all doing well and yes, Im back with my
next guest Karim Laljee who thought he would try out
some Tea with me. As always, Im eager to interview
more of you so that your experiences can be shared
and your wisdom spread. If you would be interested in
having Tea with me, please email either myself (on
Facebook) or Trishna and together we will share your
knowledge, tips and experiences. Now sit back, grab a
cuppa and happy reading! ~Dee x

How long you have been diagnosed with MS?
Almost 8 years, and prior to being diagnosed I
had these strange symptoms which I am sure are
common to many of you!

What was your initial reaction when you were
diagnosed? When I was diagnosed with PPMS,
in all honesty it was a relief. I was just so pleased
to find out what was going on with my body. I felt
like it gave me a starting point and at least I knew
what I was dealing with.

When you were diagnosed did you feel there
was enough information available to help you
manage your MS? I knew nothing about MS at
all. I got to see my MS Nurse very quickly after
diagnosis and she explained a bit and gave me a
nice orange lever-arch folder with the words MS
Society on the front. I then got home and did
what most people do and Googled it. So the
information was there, but you had to find it.

How do you manage your MS? I have come to learn
the hard way. What I now believe to be a fundamental
part of MS, is to listen to your body! I never used to,
and just pushed myself all the time, having the attitude
of keeping going and not giving up. Together with pride,
this is a not an advisable combination, as eventually it
got to a point where my body said thats enough.
I also had to let go of my pride and allow myself to use
aids and adaptations, like my mobility scooter, which
for me is worth its weight in gold.

Are you on any medication? I take vitamin B12
injections and vitamin D tablets. After looking at the
pros/cons, I've chosen not to use DMTs or symptom
management drugs. I have tried drugs like Famprya
(Fampridine) to help with walking, but it didnt agree
with me and currently Im not on anything.

Do you use alternative therapies? Yes, Im a big fan,
especially of remedial massage, as its so helpful for
easing tension in muscles around the body which have
become strained and tight due to lifting yourself and
moving about. These are areas like neck, shoulders
and back. It is also very relaxing and I believe this is
the biggest reason I was able to work for as long as I
did.

What is your support network? Luckily I have a great
support network, especially, my wife and direct family.
My friends are also great when we meet up.
Name: Karim Laljee
Marital status: Married
Children: 2-yr.old son
Occupation:
Charity/Voluntary sector

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Do you have any experiences/achievements that
youd like to share? One of the biggest things Im
pleased with is the organisation I set up, called
Positive About MS. The aim is to help others
affected by MS to take a can do and positive
approach. I was thrilled to find most MSers were
already positive and this has helped grow the
organisation. It is a great website that people can visit
and also an active community across a number of
different social media platforms. Im especially
pleased with the outcome, as the initial aim was to
help just one person with MS and now we have
thousands of supporters and people who have been
helped.

Also, I couldnt answer this question, without
mentioning the MS Societys amazing MS Life event.
It really is a life changer and something that Ive been
directly involved with for the past two events. More
recently, I was very proud and honoured to be an
Ambassador of MS Life 2014.

Have you had any setbacks due to your MS? I
believe that everything happens for a reason and truly
believe MS is a journey that I was meant to take. If I
had one thing I could mention it would be a regret that
it was only after having MS that I became a better
person, as having MS has opened my eyes and made
me think in a different way. Its a shame that it took
me having MS, for this to happen.

How did you hear about Asian MS? I heard via
Twitter and Facebook, as I got chatting to Trishna
[Asian MS Newsletter Editor] and Rani [Asian MS
Support Officer]. Subsequently I met the founder,
Sanjay at MS Life 2012 and I was just so impressed
by him and what he has done. He truly is an
inspirational guy.

Have you had any involvement in Asian MS? Id
love to be more involved and am very keen on setting
something up for Asian MS in the Manchester area.
Currently I am quite involved with interacting with the
Asian MS group on Facebook and Twitter.

Do you have a message for fellow MSers? An
anonymous quote that I read, that I just love. Be
strong, you never know who you are inspiring.

Is there any information that youd like to share
about MS? I am a big believer in freedom and
independence, so I urge all MSers to use whatever
aids & adaptations they need to remain
independent. Dont worry about your pride or what
people might say. You just need to live your life!

Editors Note: Kaz has Primary
Progressive MS, which affects around
10-15% of people who are diagnosed
with MS. If you would like to find out
more about this type of MS then the MS
Society and the MS Trust have very
informative pages on their websites:

http://www.mssociety.org.uk/what-is-
ms/types-of-ms/primary-progressive-ppms

http://oscos2.bmc-
ics.com/mss2/public/image_popup.php?vrC
ode=GI14

http://www.mstrust.org.uk/information/newly
-diagnosed/primary-progressive-ms.jsp

The MS Society is working with MS
charities globally to help fund 22
research projects that focus on the
development of successful treatments
for people with PPMS. Four of those
projects are based in the UK. You can
find out more information here:

news/2014/09/progressive-ms-22-new-
research-projects-funded

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TACKLING THE TOUGH QUESTIONS BY T
3
Q
This is the situation. You've been diagnosed with
MS. You're feeling confused, scared and unsure
what to do next. Your newly introduced MS Nurse
suggests you go to one of the
drop-in sessions for the local
branch of the MS Society. Do you
go or not? Hmmm......

Everyone is advising you that you
need support - from your doctors, friends, family
and other people with MS. But how can you tell
them that you're scared of going to a place full of
other people with MS because all you want to do
is carry on 'as normal'? The thought of possibly
seeing other people who are far worse off than
you are is scary because it can make you think
'that could be me in the future'? It's not exactly the
politically correct thing to think, is it?

Few people actually come out and say it, but it's
hard to see other people who are more affected by
their MS than you are. For someone who is still
mobile, it's scary to see someone else with the
same illness in a wheelchair. For someone who
values the strength in their limbs, it's hard to see
others using a stick to get around or having to
concentrate to lift a cup of tea. For someone who
has an intense dislike of public toilets, it's
concerning to hear stories of people having to
rush to the loo wherever they may be because
their bladder was attacked in their latest relapse.

This fear of seeing people in a situation which
could be you in the future can lead to all kinds of
other issues such as depression, personality
changes and strains on relationships. The most
important thing to remember is that there's no right
or wrong way to how you should be feeling.

Support groups are there if you need them, but it
doesn't mean you should immerse yourself in
them if they're not for you just because others are
telling you 'You have MS so you should go'.

I'm not afraid to say that going to my first drop-in
session at my local branch of the MS Society was
one of the triggers to a bout of depression soon
after I was diagnosed. Now, every time I go to a
gathering of other people with MS, I have to
consciously tell myself to keep things in
perspective. I find it useful to concentrate on my
own state of health rather than worrying about
what may happen when I see other people. And I
pick and choose which support groups I go to so
that they meet my current needs, rather than scare
me about my possible needs in the future.

If youd like to meet others with MS, there is
a wide range of ways to do so. Below are
links to some support groups that you may
find useful:

MS Society local branch network:
http://www.mssociety.org.uk/about-
us/about-the-ms-society/how-we-are-
run/branches

Services and support near you:
http://www.mssociety.org.uk/near-me

Women Against MS (London):
http://www.mssociety.org.uk/near-
me/localservices/women-against-ms

MS Society Support Groups (including
military personnel and LGBT):
support/support-groups
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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

Incontinence associated with Progressive
Multiple Sclerosis (IMPAQTS), North Bristol
NHS Trust: Seeks to evaluate incontinence
symptoms linked with progressive MS and their
impact on quality of life and sexual matters.
Participants will be asked to complete six
questionnaires over a four week period. Each
questionnaire should take 10-15 minutes to
complete.

The AnTIC Study: Antibiotic Treatment for
Intermittent Bladder Catheterisation, Newcastle
University (plus various recruiting hubs
nationwide): Seeks to find out if a once-daily dose
of antibiotic is worthwhile to prevent repeated
urinary infections in people who use intermittent
catheterisation to empty their bladder. It will
involve taking antibiotics at two different
frequencies, depending on the group to which you
are assigned. Participants will be given a 20 gift
as a thank-you for their involvement.
Parents with MS and their children: Coping,
Parenting and Attachment, Royal Holloway
(Univ. of London): Seeks to explore experiences of
children from 9-12 years old who have a parent with
MS. It will look at mood and behaviour, as well as
parenting behaviour and attachment styles within
the family. Parents and children will have to
complete questionnaires, while the parent with MS
will also be asked to complete a short
neuropsychological screen. No travelling is
involved.

Investigation of social identity and mood in
people with MS, Univ. of Nottingham: Seeks to
increase understanding of the impact changes to
social groups have on the mood and psychological
wellbeing of people with MS. It could also have
implications for clinical intervention delivery
methods and the social context in which they take
place. Participation is via anonymous
questionnaires, which you can access directly
online here:
www.survey.bris.ac.uk/nottingham/msidentity_mood

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.

Page 17
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A CHANCE TO GET
INVOLVED
CLINICAL TRIALS (cont.)

WIRMS-1(Worms for Immune Regulation in
MS), Univ. of Nottingham: This project aims to
determine whether infection with a small number
of hookworms can lead to an improvement in the
severity of MS. If successful, these worms have
the potential to provide a simple, cheap, natural
and controllable treatment for MS. The study will
involve 30 people with MS, half of which will
receive 25 live hookworms applied via a gauze
pad on their forearm and half of whom will receive
a placebo (dummy treatment). Overall participation
will be for a year.

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

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
ASIANS ON THE MS REGISTER

Only 0.5% of UK MS Register
participants have stated that they
are an Asian with MS.

The UK MS Register, funded by the MS Society, is
not, as it may sound, a count of all those who have
MS in the UK, but a ground-breaking study being
run at Swansea University designed to increase our
knowledge of living with MS in the UK.

Nearly 11,000 people have signed up, however,
only 57 people have answered I am British Asian
(Indian / Pakistani / Bangladeshi) in the ethnicity
questionnaire. That works out to be just over 0.5%
of overall respondents. We need more
representation!

The Register currently has over 10% of the
estimated 100,000 people with MS in the UK on
board and we can see that the data that we are
getting from the questionnaires is representative of
the UK MS population (for example the number of
males and females with MS or the proportions of
MS type), so please help us to get Asians with MS
represented as accurately as possible. Data from
the Register works towards influencing policy and
improving care of MS in the UK.

Some of the reasons that are considered barriers to
the Register in general, are thought to be limited IT
access or skills and language barriers, but we are
trying to encourage family members of friends to
help their loved ones with MS to go online and
answer our questionnaires.

To get your voice heard and encourage anyone with
MS, log onto www.ukmsregister.org and start
helping to make sense of MS.

You can call Katie from the UK MS Register Team
on 01792 606 354 or email the team at
contact@ukmsregister.org if you need any help or
have any questions.
Page 18
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LATEST RESEARCH & MS
IN THE NEWS

NUC Reports Promising Results of Stem Cell Transplants in MS Patients

Soil-based bacteria discovered in humans 'may trigger MS'

TV Star Jack Osbourne Turns To Paleo Diet To Help With MS

Could HIV drugs help treat multiple sclerosis?

Multiple Sclerosis and Osteoporosis: What's the Connection?

Working It Out: A short film about managing MS at work

Study finds yoga can relieve MS symptoms

Retraining immune system may turn off autoimmune diseases

Cannabis-based drug gets green light in Wales

New MS radio station is launched

Anti-LINGO-1 drug may reverse demyelination

Could excessive salt intake affect progression of MS?

MS Diagnosis Inspires Miss Kentucky For 2015 Miss America Pageant

Seattle Woman Runs More Than Ever After Getting Multiple Sclerosis Diagnosis

How the Wii Balance Board is Helping Multiple Sclerosis Patients

Updates from ACTRIMS-ECTRIMS, the worlds biggest MS meeting

Asian MS Newsletter Issue 3, 2014

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