SAMANTHA'S STORY SOCIAL CONNECTIONS AND WELLBEING - ALSO IN THIS ISSUE - MS Society SA/NT
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APRIL 2021
SAMANTHA’S
STORY
Opening herself up to
the MS community
ALSO IN THIS ISSUE
SOCIAL CONNECTIONS
AND WELLBEING
Nurturing your relationships
CONNECTING WITH
THE MS COMMUNITY
Learning more about
MS Peer Support
2
IN THIS ISSUE
CONNECTING WITH US /// Features
Editorial and
advertising enquiries
10
Network Editor:
Ashleigh Chapman
T (08) 7002 6500
12 16
E communication@ms.asn.au
Social connections
MS Society SA & NT Connecting with
and wellbeing
HEAD OFFICE Samantha’s story the MS community
341 North East Road
Hillcrest South Australia 5086
T (08) 7002 6500
News 24 NDIS
Free Call 1800 812 311
E msassist@ms.asn.au
W ms.asn.au
25
FIND US ONLINE
Employment
@mssocietysant
TALKING
ABOUT YOUR
Supporting research
DISABILITY
26
Cover photo by Gem
Photographics
Design by castondesign.com
4
YOUR WAY
A GUIDE TO SHARING YOUR INFORMATION
Fundraising
This guide has been created in collaboration with people with disability. Multiple Solutions
has worked with Feros Care, an NDIS partner in the community, on the development of this
MS Society SA & NT Privacy Policy: guide. It has been developed as a tool to empower people to have a voice in overcoming
The MS Society SA & NT is committed Living well roadblocks and to promote self-advocacy and inclusivity.
to the protection of private information.
A full copy of the MS Society Privacy
Policy is available over the phone
on (08) 7002 6500 or online
at www.ms.asn.au.
Disclaimer: Material published in
Network may not be reproduced in any
8
form without permission from the MS
Society SA & NT. Any views expressed
22
are not necessarily the views of the
MS Society. The MS Society does not
endorse any product over another, nor
do we receive any commission on sale of
items. The MS Society is not liable in the
event the product is not satisfactory.
THE OFFICIAL MAGAZINE OF MULTIPLE SCLEROSIS SOCIETY SA & NT
3
FROM THE CEO’S DESK
As recent times have One of our clients,
shown us, connections Samantha shares her
with family and friends are experiences with opening
so important to our mental herself up to the MS
and emotional health. The community and how it
ongoing World MS Day has had a profound
campaign is looking at impact on her life.
'Connections' and how we
I’ve had a lot of fun
keep connected to each
connecting with many We have been working
other and our community.
of you through MS Peer hard to create a jam-
World MS Day is coming up Support groups and at packed calendar of
on Sunday 30 May and this the MS Mighty Swim wellbeing programs and
is a time for us all to do our in February. What an workshops for you all,
part in raising awareness outstanding event and an with expert health and
about multiple sclerosis
in the community. The
incredible result raising
$134,000 towards MS
wellbeing information
coming to Adelaide, Let’s
chat
‘Connections’ theme allows services and research. I regional SA and the
us to talk openly about the am incredibly thankful that Northern Territory.
social barriers that leave in 2021 our Peer Support
I look forward to meeting
people affected by MS groups can get together
many more of you in this
feeling lonely and socially in person and that we can
coming year and hope you
isolated. have these face-to-face Tell us about your
enjoy reading this issue of
In this edition, we talk events for our community. experience with
Network as much as I did.
about the importance After a year of uncertainty, the MS Society
it is great to see us well TIM RYAN
of connections for our Do you have feedback about
and truly moving forward Chief Executive Officer
wellbeing and ways you a service you have received
can nurture relationships into our new normal.
recently? Please let us know
with loved ones. We Our team have entered so we can continue to improve
highlight peer support as a 2021 as committed as and expand our services for
valuable tool in connecting ever to continue making a people with MS.
with the MS community difference and supporting
If there’s something in
and hear from some of our people living with MS
Network you’d like to know
support groups about how across South Australia and
more about, contact us to
they connect. the Northern Territory.
chat to an MS Society staff
member.
MS Assist
1800 812 311
msassist@ms.asn.au
NETWORK /// APRIL 2021
4 MS SOCIE T Y NEWS
YOUR FEEDBACK ON THE
MS NETWORK MAGAZINE
The MS Network Magazine Thank you so much to Here’s what you had to say…
was started for the MS everyone who responded to
72% want to receive the MS Network
community as a regular our survey. Your feedback
Magazine three times per year
source of news and on how you would like to
95% enjoy reading the MS Network Magazine
information to help people receive Network, what you
live well with multiple would like to see more Top 5 topics you want to read about
sclerosis. Therefore, of and ways in which can 1. MS research updates
we wanted to hear your improve is so valuable 2. Health and wellbeing
thoughts on Network so and will help shape the 3. People living well with MS
we can continue to provide magazine in the future.
4. MS Society services and support
news that is interesting,
helpful and relevant to 5. MS community news
your needs. 13% find the magazine difficult to read
and recommended a larger font
“Thank you for seeking the feedback on what “Thank you, it reminds me there are people to help me and
I am sure is a magazine read not only by those that there are others having to deal with
of us facing the challenge, but certainly by our spouses, MS too as sometimes I feel alone. This helps.”
family and others simply seeking to
be informed about MS complexity.”
MS TREATMENT UPDATE
New MS medication, Kesimpta®, approved by TGA Zeposia® now accessible on the PBS
The Therapeutic Goods Association (TGA) has The Federal Health Minister, the Hon Greg Hunt MP
announced the approval of a new medication for has announced the listing of Zeposia® for the
relapsing MS: Kesimpta®. An application has been treatment of relapsing remitting MS on the PBS
made to the March 2021 meeting of the Pharmaceutical (Pharmaceutical Benefits Scheme), effective
Benefits Advisory Committee (PBAC) to have Kesimpta® from 1 March 2021.
listed on the PBS. The outcome of that application
is scheduled to be made public in late April.
We always recommend people living with MS speak to their neurologist
about what treatment best suits their individual circumstances.
THE OFFICIAL MAGAZINE OF MULTIPLE SCLEROSIS SOCIETY SA & NT
5
WORLD MS DAY,
SUNDAY 30 MAY
World MS Day is officially marked on 30 May. It brings
the global MS community together to share stories,
raise awareness and campaign with everyone affected
by multiple sclerosis. The three-year MS Connections
campaign (2020-2022) challenges social barriers that
leave people affected by MS feeling lonely and socially
isolated.
Last year we focussed
nationally on connection
SPREAD THE WORD
to self and self-care – HOW CAN I GET INVOLVED?
on Facebook and
taking care of your mental,
Instagram throughout
emotional and physical
the month of May 1 REGISTER to attend our World MS Day movie
health. This year we
nights, visit our volunteers in shopping centres and
encourage you to think
catch up with your local MS Peer Support group.
about your connections to
friends, family and the MS
community. This theme is 2 SPREAD THE WORD on Facebook and Instagram
all about maintaining these throughout the month of May with the
important connections and hashtag #MSconnections. Don’t forget to
building new ones. tag @mssocietysant
This year, the MS Society
SA & NT is encouraging 3 SHARE AND WIN! Show us how you’re celebrating
our MS Peer Support World MS Day! Snap a photo, share it to Facebook
groups to get together on or Instagram and tag us @mssocietysant. We
World MS Day. We’re also have a prize to give away to one lucky person.
planning movie nights and
awareness activities in
4 HOST A WEAR RED FOR MS MORNING TEA or
local shopping centres.
event in the month of May and raise money for the
Follow us on Facebook for MS Society SA & NT. Contact events@ms.asn.au
updates @mssocietysant to find out more.
NETWORK /// APRIL 2021
6 MS SOCIE T Y NEWS
FRAN CELEBRATES
25 YEARS WITH MS
Fran is so proud of everything she has achieved since
she was diagnosed with MS. From a moment in time
that she thought she wouldn’t come back from; she
has since achieved goals that she is really proud of.
She completed study, started her own business,
travelled to England and Europe several times,
and was an MS Readathon ambassador educating
children at schools – just to name a few!
It was for this reason that Fran was determined to
get all her family and friends together for a party to
celebrate 25 years since her diagnosis with MS. Fran’s
loved ones travelled from all over South Australia and
Interstate to celebrate this milestone with her.
While MS, of course, impacts her life, Fran has
found ways to adapt as her hobbies become more
challenging. She enjoys sewing and painting but
with lessened sensation in the right side of her body,
finer details are more difficult. That hasn’t stopped
her though. She instead uses a bigger needle with
a bigger eye and experiments with larger, abstract
paintings using a bigger brush.
In recent years, Fran has begun to see the importance
of connecting with people on a regular basis as a way
to get out of the house and keep her brain stimulated.
She likes to fill her time by catching up with friends
and taking art classes, and recently has spent time
with her local MS Peer Support Group in Victor Harbor.
Fran wanted us to pass on a simple message to
others living with MS.
Fran says, “There is life after diagnosis.”
“I think my life has sort of been divided by before
MS and after MS. In the 25 years after MS I’ve
certainly achieved a lot, and I’ve definitely had
the love and support around me that’s enabled
me to do so many things.”
THE OFFICIAL MAGAZINE OF MULTIPLE SCLEROSIS SOCIETY SA & NT
7
MS FAMILY FUN DAY
Thank you so much to all the children and families who
participated in the 2020 MS Readathon. All funds raised
help the MS Society support families affected by MS.
We would love to invite you Come along and join us for
to this year’s MS Family Fun a fun family-day out with
Day funded by the 2020 MS heaps of activities including:
Readathon!
Mindfulness drumming
This is a free event that workshop
gives children and families Canvas paint pouring
the opportunity to spend
Beginners yoga
quality time together and
Mindfulness activity with
connect with other families
an MS Nurse
affected by MS in a fun, REGISTER NOW
relaxed atmosphere. Face painting and balloon to attend the MS
animals Family Fun Day.
The MS Family Fun Day will
Waterslides, dodgem cars, There are limited
be held at The Beach House,
bumper boats, mini golf, spots available so
Glenelg on Saturday 14 MS Family Fun Day
carousel, play castle and please RSVP by
August, 10am-2pm. at The Beach House,
arcade games! Friday 16 July by
Glenelg on Saturday
contacting
14 August, 10am-2pm.
events@ms.asn.au
CHRISTMAS Several of our MS Peer
Support groups got together
FUN! over the Christmas period
for a meal and celebration.
We heard tales of baking,
Kris Kringle, decorations and
lots of fun! Our CEO Tim and
Peer Support Coordinator
Linda joined as many groups
as possible. Take a look at
the photos they shared
with us.
NETWORK /// APRIL 2021
8 LIVING WELL
COVID-19 VACCINATION AND MS –
EVERYTHING YOU NEED TO KNOW
Written by MS Research Australia
Never in our history has there ever been such a mass vaccination program as the Should someone with
COVID-19 vaccination program. There is a mountain of information about vaccines out MS have the COVID-19
there and it is often confusing and complicated. Here we try to break down some of the vaccination?
basics on the COVID-19 vaccination and how it will affect people with MS. This article is
It is currently recommended
designed to complement MS Research Australia’s more clinical advice around COVID-19
that everyone over the
vaccination for people with MS, which you can read at, msra.org.au/covid-19-vaccination-
age of 16 years should
guidance-for-people-with-ms
be vaccinated against
What is vaccination? How does COVID-19. There is no
vaccination work? specific data relating to the
Vaccination is the safest
administration of any of
way, and sometimes, as in There are many different
the vaccines to a person
the case of COVID-19, the types of vaccines, but
with MS, but studies in the
only way to protect yourself generally, they use a
US, EU and Australia are
against some specific harmless form of the virus,
currently being conducted.
infections. Vaccination or part of the virus to train
However, there is no
aims to train your immune the immune system without
theoretical reason why any
system against a virus or making you sick. The
of the presently available
bacteria that otherwise immune system remembers
vaccines should pose any
would cause disease if this bug, so if a vaccinated
particular risk to a person
you were to encounter it. person encounters the virus
with MS. The chances of
In other words, vaccinations later, the immune system
developing COVID-19 are
give you immunity to already knows how to
genuine, and the risks may
those bugs. mount a suitable response.
be higher in a person with
MS who also has some
How effective are the different vaccines? disability or other health
Like any medical reduction of disease in virus responsible conditions.
intervention, no medicine is a vaccinated group of for COVID-19. The risks in contracting the
100% effective, but vaccines people compared to an disease far outweigh any
Previously, diseases such
are the most effective way unvaccinated group.
as smallpox and polio conceivable risks from the
of preventing COVID-19, Among the COVID-19 vaccines. The current advice
have been eradicated
especially severe COVID-19. vaccine candidates, there is that people living with MS
There are variations in from Australia by effective
have been different should be vaccinated unless
people’s immune systems, vaccination strategies, and
efficacies reported. This is advised not to do so by their
there are variations in the without any other options,
varied and depends on the treating neurologist.
virus caused by mutations, vaccine, the study, and the COVID-19 vaccination is
and there are variations in population they are being the only line of defence
the vaccines themselves. used in. But generally, they we have. Vaccination
Vaccine “efficacy” is are all considered to have protects yourself and the
indicated by the percentage a significant impact on the community around you.
THE OFFICIAL MAGAZINE OF MULTIPLE SCLEROSIS SOCIETY SA & NT
9
Where do people with MS fit into the vaccine rollout? What is Herd Immunity? MS Australia's COVID-19
The Australian government Initially, the first rounds Herd immunity is the web page, is reviewed
commenced vaccinations of vaccines will be made idea that if a large daily and addresses many
at the end of February available in a small number enough percentage of the common questions about
2021 and have created a of locations, gradually population is vaccinated, it is the vaccine and living with
rollout plan for the vaccine building to around 50 difficult for the virus to find MS from the Australian and
depending on the level hospital hubs in urban and an unvaccinated person to New Zealand Association of
of risk of contracting the rural areas around Australia infect and spread. Not only Neurologists.
disease. as experience is gained does this limit the spread To stay up to date visit,
and logistics are organised. of infection but it also limits msaustralia.com.au
The first group of people
Therefore, it is likely that the chance of the virus
to be vaccinated consists Read the full article
people with MS will need to mutating or changing. Herd
of border and quarantine at msra.org.au
go to one of these centres immunity is also essential
staff, frontline medical staff,
to be vaccinated. The in protecting people
and aged care workers and
location of these centres who can’t be vaccinated
residents (approximately
will be decided by state themselves for various
678,000 people). The IF YOU HAVE
and territory governments. reasons, such as age or
second group contains ANY CONCERNS
Later waves are likely to be immunological diseases.
people with underlying about vaccination,
carried at GPs and other It is currently unknown
medical conditions, which is it is essential
local healthcare clinics exactly what percentage
made up of around 2 million to talk to your
and possibly community of the population needs to
people. People with MS will healthcare team.
pharmacies. be vaccinated to produce
fit in the second group for
herd immunity, but experts
vaccinations.
believe it to be around 75%.
NETWORK /// APRIL 2021
10 LIVING WELL
SAMANTHA’S STORY
From the moment Samantha opened herself up to the MS
community through her Instagram blog, sharing her highs
and lows with MS, she felt a wave of support and hope.
Since then she has dedicated herself to being a support
for others living with MS and sharing that hope, as an
MS Peer Support group coordinator and most recently
joining an initiative with key members of the MS medical
community to educate people living with MS.
Samantha was born in the UK, getting her first taste of
travel on a University exchange program to Europe. It
wasn’t long before she caught the travel bug and jumped
on a plane to Australia for a 12-month backpacking holiday,
where she found her home in Darwin.
As a fit and healthy young woman in her mid-twenties,
travelling around Australia fruit picking and living an active
lifestyle. She was always fit and healthy. She had just
decided to give Gaelic Football a try when she noticed
changes in her body. During a training session she felt her
legs start to buckle beneath her. She felt numbness and
tingling as well. Something didn’t feel right.
She was no stranger to living with a chronic health
condition, having been diagnosed with a chronic blood
disorder when she was 15 years old. But her multiple
sclerosis diagnosis felt unexpected and scary. She says
the biggest mistake she made in that moment was turning
straight to Google. What she saw there was people
suffering, no stories of hope. She felt frightened and
defeated for the first time in her life.
Three years later, her perspective had changed. With some
experience under her belt of what living with MS can really
We’d love to share
be like, Samantha knew she wanted to help people who
your living with MS
felt the fear she felt when she was diagnosed. In 2017
story in the next issue
she started blogging her MS experience on Instagram as
of Network! Contact
@ms_butterfly89 and she says it was one of the best
our Marketing team
things she ever did.
at communication@
ms.asn.au.
Samantha says, “I wanted to lead the way by advocating,
informing and get real about my MS experience. I just
wanted others to feel hope. I want you to be able to see
that it's possible to live a good life with MS.”
THE OFFICIAL MAGAZINE OF MULTIPLE SCLEROSIS SOCIETY SA & NT11
Not long after her blog Samantha joined a small there are less treatment It reaffirmed the importance
went live, she nervously group of influential options available to of taking control of my own
attended her first MS Peer members of the Australian Samantha, so the process
MS even though that meant
Support meeting with our MS community, including was handled very carefully.
group in Darwin. Samantha people with MS, world- This initial transition was re-thinking my own lifestyle
was amazed by how leading doctors, stakeholder incredibly hard on her body, and how best I can adapt to
welcoming everyone was. groups and MS supporters but she has since come out help my body be as healthy
The more she continued to review the latest the other side feeling really as possible.”
to open herself up to the scientific findings and positive about the future.
Over the past few months,
MS community, the more translate these into easy
“The experience made me Samantha has been actively
she wanted to be involved. to understand social media
feel very proud of my MS fundraising for MS services
So, she offered to help resources for the MS
diagnosis, and thankful that and research. She recently
coordinate the Darwin community.
I was given a voice to help held a Team MS birthday
group and start a Darwin
Samantha’s own MS create those much needed fundraiser and is now
peer support Facebook
treatment journey was resources to put out into the participating in the May
page.
the reason she felt so MS community – resources 50K raising money for MS
It was through her passionate about the MS that will help people like Research Australia.
Instagram account that Motion initiative. Last myself to make the best,
You can follow
she was approached to year, she documented her informed decisions about
Samantha’s journey
participate in the ‘MS transition to a new MS managing their own health
on Instagram
Motion: Moving Faster treatment on Instagram. care,” Samantha says.
@ms_butterfly89
to Protect Brain Health’ This transition required
“The guidance from
initiative. This initiative extensive planning with
international MS experts
aims to raise awareness her medical team over
reinforced to me, the
of the positive impact early 12 months. Living with a
importance of time and
treatment can have on chronic blood condition in
speed in the effective
brain health in people living addition to MS, means that
management of MS.
with MS.
MS MOTION:
Moving Faster to Protect Brain Health
The ‘MS Motion: Moving The initiative encourages us
Faster to Protect Brain to share this message with
Health’ initiative was built the wider MS community,
by the MS community, for educating people with MS
the MS community, to raise about the impact on brain
awareness about how early health over time and how
To learn more or to join
intervention and prompt early effective treatment
the initiative and help
treatment can improve the may prevent MS from
spread the message, go to
lives of people with MS. getting worse.
msmotion.com.au
NETWORK /// APRIL 202112 LIVING WELL
SOCIAL CONNECTIONS AND WELLBEING
Strong ties with our family and friends provide us with feelings of happiness, security and
support. Nurturing these relationships can give us a greater sense of purpose and allow
us to feel stronger in our self and self-worth.
Our Nursing team say, ‘MS does not exist in a bubble’. Those with MS know that, while this
condition affects them in ways many people cannot understand, it is not only the person
with the disease whose life is touched. Their loved ones are also affected, and, frequently,
that brings about changes to social dynamics or the way family members relate to and
interact with one another.
But not all change will be negative. While there may well be challenges for people affected
by MS, there are also times when MS might be a blessing in disguise, binding families and
friendships together with a bond that cannot be broken.
Communication
Sometimes, loved ones may attempt to help Children of all ages will also pick up that
you when that really isn’t what you need at something is wrong. It is best to be open
the time. Or there may be other times when with children to make sure they hear it
your loved ones may not know what you from you first. Your actions, more than your
need, and they might pull away when you words, will tell a story that your children can
really need support. This is where open and believe. Get out and be as active as you can,
honest communication is so important. participate as much as you can and take
care of yourself as only you can.13
Get out there!
Sharing good times with Ask people what they
others and being supported think about your situation
in the not-so-good times is and show them you value
what good friendships are their opinion.
about. There is a saying that Listen and respond. Ask
‘friends are good medicine’. about someone else’s
Which means having several day. Follow up on previous
close friends is very good conversations. Offer
for our mental health and help or advice if asked.
wellbeing. Here are some Listening to other people’s
ideas to be more socially concerns can often
active: shed light on your own
Make a list of all friends challenges.
and family members Ask your friends to
who are supportive and introduce you to other
positive. friendship circles so you
Create a separate list can meet new people and
of people who you try new activities.
need to stay in touch Join an MS Peer Support
with regularly, such as group or another local
parents, a close friend, community group. Ask for help Your GP, MS Nurse,
your child who lives far These groups are a great Physiotherapist or
If you are feeling lonely
away or an aging relative opportunity to meet new Occupational Therapist
or isolated from family
who lives alone. Make a people, share common can give you strategies to
and friends, there are
commitment to call, email interests and hear about manage any symptoms
professionals you can
or get together with them situations similar to yours. that may impact your
reach out to for advice and
on a regular basis. In cases ability to get out and
support.
of long-distance use social participate in activities.
Speak to an MS Nurse,
‘friends are
media to keep in touch. Always keep your doctor
GP or Social Worker to
Reach out and make up to date on how you
discuss family dynamics,
a least one emotional good medicine’. changes in your normal
feel, physically and
mentally. They may
connection each day. routine and any other
find that a combination
Share what is on your feelings you may have.
of counselling and
mind honestly and talk
prescription medication
about your concerns
may be just what
openly. Don’t hesitate
you need.
to ask for help.
NETWORK /// APRIL 202114 LIVING WELL
Expert health and wellbeing
education for people living
PROGRAMS AND
with multiple sclerosis WORKSHOPS
Sleep and Mindfulness MS staff visit Darwin
3-6 week program
27 & 28 May
Weekly on Tuesdays Anglicare, Winnellie
27 Apr - 11 May, 6:00pm Join us over two days for
18 May - 1 Jun, 5:30pm expert advice on diet,
Mitcham Memorial Library stress management,
Join us for three weeks falls prevention, fatigue
of sleep workshops management and sleep
followed by a three-week hygiene.
mindfulness course. Come There will also be limited
along for the full six weeks one-on-one appointments
or choose a three-week available with an MS Nurse
course to suit you. Learn and an NDIS Support
techniques to manage Coordinator. Thanks
stress and find relaxation. to grants from the NT
Department of Attorney
General and Justice’s
Wellness Series Community Benefit Fund.
2 week program
Weekly on Saturdays
MS staff
1 & 8 May, 10:00am
visit Alice Springs
Country Wide Health,
Nuriootpa 16 & 17 June
This two-week Wellness
Series gives you the tools Book 1-on-1 appointments
to live well with MS. with specialist MS Staff at
your home. There will also
Join us for expert advice be limited appointments
on MS Get a Head Start, available with our MS
exercise, mindfulness and Nurse, Physiotherapist
fatigue management. and Wellbeing and Social
Support Coordinator
(NDIS support).
Thanks to grants from the
NT Department of Attorney
General and Justice’s
Community Benefit Fund.
THE OFFICIAL MAGAZINE OF MULTIPLE SCLEROSIS SOCIETY SA & NT15
WEEKLY EXERCISE
PROGRAMS
Pregnancy and MS
Thursday 24 June, 6:00pm Contact MS Assist
Mitcham Memorial library to register your
Join our MS Nurse, who is interest for our
also an experienced fertility upcoming programs
nurse, for information and and workshops!
guidance around preparing
for pregnancy, pregnancy,
breastfeeding, and MS
treatments and pregnancy.
Virtual MS Hydrotherapy
Exercise Groups
Virtual MS Falls Daw Park, Klemzig
MS Falls Prevention Prevention Tuesdays and Fridays, and Victor Harbor
6 week program 6 week, online program 9:30am Water based, group exercise
Our MS Physios are classes held in three
Weekly on Tuesdays Weekly on Wednesdays
running 30 minute online, location in Adelaide and
29 Jun - 3 Aug, 10:30am 30 Jun - 4 Aug, 10:30am
exercise classes via Zoom. regional South Australia.
Venue TBA Learn exercises and Exercises can be done
Learn exercises and strategies to improve sitting or standing, and Gym classes with
strategies to improve your balance and mobility, focus on mobility, strength a personal trainer
your balance and mobility, and reduce your risk of and balance.
and reduce your risk of falls in this six-week at- MS Society SA & NT,
falls in this six-week at- home program led by an Virtual Yoga Hillcrest
home program led by an experienced neurological
Personalised exercise
experienced neurological physiotherapist. Mondays 1pm,
sessions with a personal
physiotherapist. Wednesdays 6:30pm &
trainer using specialised,
Saturdays 9am
accessible gym equipment.
Join us for virtual yoga
classes via Zoom. Learn Exercise classes
yoga poses and breathing
exercises from qualified Aldinga, Nuriootpa,
yoga instructors. Payneham, Port Pirie
and Reynella
Group exercise classes
held in various locations
in Adelaide and regional
South Australia.
NETWORK /// APRIL 202116 LIVING WELL
CONNECTING WITH
THE MS COMMUNITY
Research shows people cope better with chronic
conditions when they’re open with others about
their fears and concerns. We have 22 MS Peer
Support groups meeting at various locations in
Adelaide, regional South Australia and Darwin.
Groups usually meet monthly over coffee or a
meal. Some groups gather to discuss specific
multiple sclerosis issues and others get together
for activities such as tennis and crafts.
As we draw our focus to building connections in
2021, we want to shine the spotlight on a few of
our MS Peer Support groups.
If you have an idea
for a new MS Peer
Support Group,
please contact
MS Assist on
1800 812 311 or
msassist@ms.asn.au
THE OFFICIAL MAGAZINE OF MULTIPLE SCLEROSIS SOCIETY SA & NT17
MOUNT
BARKER
Regr initserteset r
Mount Barker Support Group
In February 2014, David founded the Adelaide Hills Peer Support group which has
you
now grown to 18 members who all meet monthly for a meal and conversation.
One of the amazing things about this group is that they have all grown to be good
friends, helping each other out with various projects and fundraising. David says the Creative Writing Group
group is all about just having a fun night out with some good friends. There is never
Carolyn Cordon is a writer,
any pressure for people to talk about their MS, but if they feel comfortable, they
poet and editor. She has
know they are talking to a group who is ready to listen and offer support.
had eight books published
including two poetry
collections and a self-
published memoir about
Barossa Support Group her life with MS.
The Barossa Peer Support Carolyn is interested in
group is one of our longest running regular creative
standing groups having been writing sessions with
getting together for about members of the MS
40 years. community, at the MS
The group love to get Society office in Hillcrest
together for coffee and lunch or at other Adelaide
every month. The group's BAROSSA venues.
coordinator Penny says If you are interested in
it’s all about friendship and joining a Creative Writing
fellowship, not just for people living with MS but also carers and family members who are Group for people with MS,
able to share their challenges too. They give each other little hints on different things that please contact MS Assist.
can help with MS, supports they are using and gadgets that have worked for them.
Henley Beach Tennis Group – Break Back Program
Francy is a qualified tennis coach and this year decided to
share her passion with others living with MS. Francy says that
tennis has been the best thing for her, not just her career but
her mental health too, so she took some inspiration from her
situation and formed the ‘Break Back Program’.
Once a month the group gets together for tennis followed
by some time to socialise. They have a drink, play some HENLEY
lawn games and have a chat. Everyone is welcome to share BEACH
their stories, or just sit and listen.
NETWORK /// APRIL 202118
MS PEER SUPPORT
Join a support group in your area
REGION SPECIAL INTEREST CONTACT PHONE NUMBER
Adelaide CBD Workers Jess 0403 155 696
Barossa Penny 0488 952 211
Clovelly Park Christine 0408 808 284
Darwin Sarah 0439 885 604
Gawler Helen 0403 295 348
Gawler Evening group Helen 0403 295 348
Henley Beach Tennis Group Francy 0432 333 511
Kapunda MS Assist 1800 812 311
Kidman Park Enza 0433 972 312
Modbury/Gilles Plains Peter 0418 206 163
Morphett Vale Craft Group Karen 0458 445 503
Mount Barker David 0410 451 301
Mount Gambier Jim 0409 336 455
Naracoorte Kay 0407 615 118
Noarlunga Jude 8322 5441
Port Pirie Anne 0448 321 610
Riverland Crystal 0418 690 013
Strathalbyn/Goolwa Jill 0428 843 327
St Morris Overcoming MS Pam 0412 190 609
Tailem Bend Sue 8572 3914
Victor Harbor/Encounter Bay Ros 0458 541 774
Under 37s Tony 0466 409 289
FACEBOOK ONLINE PEER SUPPORT GROUPS
My Society – People Living with MS
This is a private and safe place for people living with multiple sclerosis in SA and NT to chat, seek advice and share stories.
Family and Friends of People Living with MS
This is a private place for family, friends and carers of people living with MS to chat, share information and connect with
others who are supporting someone with MS.
THE OFFICIAL MAGAZINE OF MULTIPLE SCLEROSIS SOCIETY SA & NT19
MAXIMISE
YOUR HEALTHCARE
APPOINTMENTS
Management of your MS is a team
effort with you in charge.
It’s important to discuss all health concerns with your healthcare practitioner and ensure you get heard. However some
people can feel dismissed or intimidated during healthcare appointments, whilst others stay quiet, aren’t sure what to
say or don’t want to make a ‘big deal’ of a health concern, even though their symptoms are troubling or getting worse.
Here are 10 strategies to help speak up and maximise your healthcare appointments.
1 Book a long appointment. 6 If you don’t understand something,
Ensure you have adequate time to discuss your ask your GP to repeat or rephrase it.
concerns but make sure to ask and understand At the end of the appointment ask for
the costs first. a run through of key points again.
2 Be prepared. 7 Expect your GP...
Write a checklist of questions, medications and to examine your neurological system and discuss
any prior tests. Describe how you feel, your symptoms, any findings and how they relate to any other
include any changes and when they occurred. health conditions you might have.
3 It’s ok to speak up. 8 Ask your GP...
Many people feel emotional and struggle to what sort of investigations or specialist referrals could
be assertive or clear about a health concern. assist in addressing your concerns and the likely cost.
Be open, voice your feelings and explain the
impact on your daily life. 9 Understand the next steps.
Ask how the process works and what you need to do
4 Stay calm and breathe. for each matter raised. Get info to read at home about
Take your time and refer to your notes and being a patient, tests, results and/or diagnosis.
questions. Speak calmly and clearly. Explain how
you’re feeling and discuss what’s best for you. 10 Seek clarification and/or a second opinion.
If you don’t feel your concerns have been addressed,
5 Clarify your expectations. it’s ok to re-state questions. You may wish to seek a
What would you like from the consultation? second opinion.
Write it down in advance. Being certain will help
get the outcome you want from the appointment.
NETWORK /// APRIL 202120 LIVING WELL
EDUCATION. SUPPORT.
UNDERSTANDING.
The important role of an MS Nurse
MS Nurses are passionate An MS Nurse can provide Short-term counselling can More discussion and
about supporting you at all advice, tools and resources be provided for people who information from a nurse
stages of your life with MS. to tackle issues that arise, are experiencing feelings can help clarify thoughts
They are there to provide and their hope is to support of loss and grief following and realistic expectations.
support with managing and ultimately empower you a diagnosis and who may
An MS Nurse may also
symptoms and improving to live as well as possible need extra support. A
prompt you to consult your
your quality of life as well with MS. Sometimes Continence Nurse can also
neurologist again when it
as ensuring you have this involves connecting help to manage any bladder
becomes necessary. Your
quality information and you with other health and bowel concerns.
MS management plan
emotional support available professionals and services We are very fortunate in may need to be adjusted
when you need it. suited to your needs. Australia to have so many if you are going through
You will no doubt go through Emotions vary when a affordable treatments life changes, or if you
many changes in your life available for MS. This are experiencing new
person first receives the
with MS and MS Nurses means that, unlike even a symptoms or relapses.
diagnosis of MS and feelings
can provide support and decade ago, there are more
of uncertainty, shock and MS Nurses are here for
specialist information when options available. There
anxiety are common. MS you, providing knowledge,
it comes to symptoms, is so much information to
Nurses are often the first support and understanding
absorb in collaboration with
treatments, managing point of contact after a at different stages of
the neurologist and medical
relapses, planning for person is diagnosed by your journey with MS.
team that this can become
pregnancy and making a neurologist, and are You can speak to an MS
overwhelming to process,
lifestyle changes that can here to provide support, Nurse whenever you have
especially in the early days.
have a long-term positive reassurance and reliable a question or concern by
impact on MS. education. contacting MS Assist on
1800 812 311.
THE OFFICIAL MAGAZINE OF MULTIPLE SCLEROSIS SOCIETY SA & NTA MESSAGE FROM OUR MS NURSES 21
laide
, based in Ade
Hi everyone e rrito ry a re
hern T
u th A u s tr a lia and Nort is it s and telehe
alth
e s in S o ring h o m e v
Our MS Nurs hile also offe nd
st an d B rig h to n , w
to vis it A lice Springs a
re able
suburbs, Hillc . W e a re excited to be n with our clie
nts
a ll c lie n ts c t in p e rs o
ts to conne
appointmen is y e ar and hope to
f th
e first half o
Darwin in th velop
e N o rth e rn Territory. rm re la tio n ships we de
in th ng-te
, w e g re a tly value the lo t p eople living w
ith
rsin g T e a m nce a m o n g s
As an MS Nu n d build confide , so
n d w a n t to em p o w e r a
a y s w e c a n support you
with you a here are ma
ny w ed
e y o u r w e lln e s s . T
o r w h e n y o u feel the ne
g way if
MS to mana n ly a phone call a
a re o
mber we
please reme g
r e x tra su p port. w e lo o k fo rward to bein
fo ible an d
is g o in g a s well as poss
r year
We hope you a s th e year contin
ues!
many o f y o u
in touch with
s to you all,
Warm Regard nda
Jo h a n n a , June and Ama
Emma ,
NETWORK /// APRIL 202122 RESEARCH
HOW DO ADDITIONAL MEDICAL
CONDITIONS IMPACT A PERSON’S MS?
Written by MS Research Australia
The Australian MS Longitudinal Study (AMSLS) is MS Research Australia’s collaborative research platform that has been
running for almost twenty years. Our goal is to provide real-life data on Australians living with MS to assist medical
and support services in providing better support for people with MS, their families and carers. In recent years there has
been increasing interest in the role of additional medical conditions (or “comorbidities”) in people with MS. There are
many reports that they can delay a MS diagnosis, alter the progression of disability, affect treatment use, limit physical
activity and significantly reduce quality of life.
Three new AMSLS studies MS in Australia. Of the 19 relapsing- and progressive- Will additional medical
by Dr Lara Lo from the conditions analysed, 14 of onset disease, but the conditions impact MS
University of Tasmania these were significantly prevalence was higher symptoms?
published in the Journal more common in people in those with a longer The second study examined
of Neurology investigated with MS than in the general duration of MS. the impact of additional
how other medical population (after taking medical conditions on the
MS might contribute to the
conditions impact into account the effects severity of MS symptoms.
risk of developing other
Australians living with MS. of age and gender). These The researchers found
conditions, or there might
included cancer, heart that MS symptoms were
be shared factors that
Does having MS lead to a and vascular diseases, more severe in people
predispose people either
greater chance of having anxiety, depression, and with a higher number of
directly or indirectly
other medical conditions? gastrointestinal disorders. other medical conditions,
to several conditions
The first study surveyed There was no difference with the greatest effects
including MS.
additional medical in the prevalence of these on depression, anxiety
conditions in people with medical conditions between and pain.
THE OFFICIAL MAGAZINE OF MULTIPLE SCLEROSIS SOCIETY SA & NT23
When these conditions Do additional medical What does this mean for people with MS?
were analysed individually, conditions impact These studies highlight For more information on
mental health disorders quality of life? the huge impact additional these, and other lifestyle
(such as diagnosed The final study measured medical conditions have factors that can be modified
depression) and quality of life in people on a person’s MS and their for optimal management
musculoskeletal disorders with MS, including factors quality of life, as well as the of MS, please see MS
(such as osteoporosis) had
such as happiness, coping, importance of identifying Research Australia’s
the most influence on MS
relationships, self-worth, and actively managing free guide: Adapting
symptoms. Mental health
mental health, independent these conditions. Early your lifestyle: a guide
disorders were linked to
living, senses and pain. and routine screening for for people with MS.
increased severity of MS
Not surprisingly, having a other medical conditions
symptoms including anxiety, For more MS research
higher number of additional should be integral to
cognitive issues, fatigue and news, visit the MS Research
medical conditions was monitoring. Mental health
sexual dysfunction; while Australia website,
musculoskeletal disorders associated with reduced and musculoskeletal
msra.org.au
were associated with quality of life, with mental conditions had the greatest
increased pain, walking and health disorders having impact for people with MS, Our goal is to provide real-
balance issues, and bowel the greatest impact, and so successful monitoring life data on Australians
and bladder issues. musculoskeletal disorders and management is vital to
living with MS to assist
the second largest improving quality of life.
contributor. medical and support
services in providing better
support for people with MS,
their families and carers.
MS Research Australia and
MS Society SA & NT gratefully
acknowledges the nearly
3,000 Australians with
MS who generously donate
their time and data to the
Australian MS Longitudinal
Study (AMSLS) to support
evidence-based management
of MS in Australia. For more
information or to register
please visit msra.org.au/amsls24 E M P L OY M E N T
TALKING
ABOUT YOUR
DISABILITY,
YOUR WAY
GUIDE MANAGING YOUR MS AT WORK
Multiple Solutions, the When it comes to managing your MS at work so you can
MS Society’s Disability stay there, it’s important to identify your goals and the
Employment Service, has support you may need to achieve that goal. Often this
teamed up with people involves deciding whether you want or need to share
living with disability information about your MS.
to develop a practical
What is your goal? It is important to identify your goals and the
guide to help you on your
path to achieving your Identify your goals for support you may need to achieve that goal.
employment, study or employment, study or
volunteer goals. volunteer work and how
to make them achievable.
The ‘Talking about your
To reach these goals, time Sharing information Who will support me?
disability, your way’ guide
provides tools to assist frames need to be set so Think about what possible A supporter is someone
you to discuss your MS and that you can keep on track support you may need to helping you to
identify and articulate your and motivated to achieve achieve your goal. What are understand and put into
goals, and the supports them by the deadline. the roadblocks and how place the supports you
available to help you can you adjust to overcome might need to reach your
achieve them. those roadblocks? goal. As goals can have
The guide can be used Sharing information about many steps you may
as a working document, your MS is completely need to have multiple
with pages to take notes up to you. It is important supporters to help
and various tools to help to understand that achieve your goal.
you better understand and sometimes we need A supporter can be a
gather your thoughts. Use to share information family member or friend,
the guide independently legally to an employer a paid support such as
or with someone who to keep ourselves and a support worker or can
is supporting you. everyone safe. Other be someone helping you
The guide aims to reasons people share navigate a service such
empower people to have information is to gain as employment or the
a voice in overcoming support for adjustments NDIS e.g. an Employment
roadblocks and to in the workplace or for Consultant, Local Area
promote self-advocacy learning. Coordinator, Employer,
and inclusivity. Multiple TALKING OUR Co-Worker, Teacher/
Solutions has worked ABOUTILYITY Student Support Officer
with Feros Care, an NDIS DISABWAY
YOUR ION
or Volunteer Buddy.
partner in the community, FOUND
YOUR INFORMAT
SHARING bility. Multipl
e Solutions
A GUIDE TO ple with disa
on with peo munity, on the develop rcoming
ment of this
collaborati
on the development of ONLINE
created in in the com voice in ove
guid e has been e, an ND IS partner peo ple to have a
This
with Feros
Car power
wor ked ed as a tool to em usivity.
has incl
been develop self-advocacy and
guide. It has mote
s and to pro
this guide.
roadblock
multiplesolutions.com.au/talking-
about-your-disability-your-way-guideNDIS 25
UNDERSTANDING
YOUR NDIS PLAN
Your NDIS plan gives you There are three support Your MS Services
access to the supports categories:
MS Society SA & NT is a What if I don’t have an NDIS
and services you need to
Core Supports budget registered provider of NDIS plan or my funding doesn’t
live well and pursue your
services offering a range cover these services?
goals. These supports may Core Supports are a flexible
of services and support to The MS Society SA &
change from plan to plan budget used to support your
people living with multiple NT are able to offer a
as your needs and goals everyday needs such as
sclerosis which may be range services for free
change. Your NDIS plan will daily activities and personal
funded in your NDIS plan. or subsidised, to people
be based on the discussion care; participation in social
Our NDIS services include: with MS who do not have
you had in your planning and community activities;
and every day, low cost NDIS Support NDIS funding, thanks
meeting and includes:
items or products you Coordination to the generosity of our
Your goals may need. Physiotherapy
fundraisers and supporters.
This section includes the Individual assessment
current goals you would Capital supports budget or consultation with an
like to achieve as part of Your capital supports MS Physiotherapist,
your plan and the long-term budget is for purchasing rehabilitation sessions,
goals you have identified for one-off items such as MS Society gym sessions,
your life. equipment, technology, hydrotherapy classes,
or home or vehicle online yoga and exercise
Funded supports modifications. classes, and the MS Falls
This section tells you what Prevention program.
Capacity building budget
funding you have been Occupational Therapy
The capacity building budget Individual assessment
allocated in each support
is to fund skill building with an Occupational
category and what this For more
activities, training and Therapist.
funding is for. You may information
learning you need to achieve
not have all the support Continence Support about the
your goals and is allocated
categories funded in your Individual continence services available
across various categories
plan. This will depend on assessment with an to you, contact
that align to your goals.
your individual needs. MS Continence Nurse, MS Assist.
Who can help me? product advice, and
catheter changes and
Your NDIS Support education.
Coordinator or Local Area
Coordinator will help you
start your NDIS plan and
understand what supports
and services you can pay for
with your NDIS funding.
NETWORK /// APRIL 202126 FUNDR AISING
MS MIGHTY SWIM
RAISES OVER
$134,000!
We were so grateful that this year’s MS
Mighty Swim was able to go ahead with
the current COVID-19 restriction in SA.
There were some changes to the day but
ultimately the event still had the same
incredible atmosphere with 430 swimmers
in 17 teams fundraising for people living
with MS in South Australia and Northern
Territory.
The event was held at Unley Swimming MESSAGE FROM TEAM MS
Centre on 13 and 14 February, with teams
taking on the challenge to swim the most
CAPTAIN, LEE O’CONNELL
lap in 24 hours. We love the sense of
community all coming together for one The 16th annual MS have swam with in previous
reason, to support people living with Mighty Swim was another years – hopefully next year
multiple sclerosis. outstanding success. we can all be one big, happy
We would like to acknowledge once again Weather for this year’s event family again!
the ongoing contribution of the City of was cooler than the last One of the truly amazing
Unley. A very special thanks to the Unley couple of years which meant aspects of the MS Mighty
Swimming Centre staff who have supported the late evening and early Swim is that people living
the MS Mighty Swim for 16 years working morning shifts were a bit with MS, who are the
tirelessly to ensure the event is safe challenging, however during beneficiaries of the funds
and runs smoothly. the day it was very pleasant raised, are also amazing
Thank you to participants, donors both in and out of the pool. participants and fundraisers
and volunteers for helping to Unfortunately, one of themselves.
make the 2021 MS Mighty the consequences of the Team MS has been an
Swim a huge success. COVID-19 restrictions was important part of the MS
that the yearly catch-ups of Mighty Swim since the
swimmers in Team MS were beginning. The MS Mighty
limited and sadly some of Swim itself is an extremely
you missed seeing others you successful fundraising event27
ALISON
DIVES IN
FOR MS
Alison does hydrotherapy
every week to help her MS
symptoms and her new love of
the water led her to join Team
MS in the MS Mighty Swim in
2019! In her third MS Mighty
Swim, she swam 6km and
raised $900 for people living
with MS.
“I did the Mighty Swim, and I
didn’t think I’d be able to do
any of it, but I did! I had a pool
noodle under my arms, I had
flippers on my feet and I kind
of doggy paddled through
however many laps I ended up
doing. Just being able to give
back and raise some money
– It was just such a good
weekend.”
for the MS Society, a fun support means, in the pool, have culminated in the MS I am looking forward to
swimming event for people it is willingness to give it Mighty Swim’s impressive being involved again in
of all ages and swimming a go that demonstrates total and we are so grateful the MS Mighty Swim in
abilities, and it has done ability and achievement. to all our generous donors February 2022, hopefully
a huge amount to raise who helped us achieve in a post COVID-19
As captain of Team MS for
awareness of MS in the this result. environment. As always, it
the last 16 years it is our
community. is a privilege and a pleasure
team member’s stories and Well-deserved
to captain a team of such
What makes Team MS achievements that motivate congratulations and a huge
inspirational participants.
unique, is that it motivates me to do whatever I can to thank you to the organisers,
and enables people help them fulfil their goals all our dedicated swimmers,
living with MS to achieve and continue to raise money supporters and sponsors.
personal goals often way for the MS Society.
above what they ever This year Team MS has
imagined or expected raised its highest total ever
they could do. There are of $20,871! We swam an
many long-time, and first equally impressive 852
time, Team MS members laps (over 85km) between
who have said that us all. What an amazing
participating in this event fundraising effort by all
has been a life changing members of Team MS.
experience. Our team spirit Those, and all teams,
of encouragement and fundraising effortsYou can also read
