MS Life Volume II by MS Queensland

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VOLUME II, 2019

Thank you for being a part of MS Queensland’s 60 year history. It’s you, our community, that are at the heart of what we do.

MS LIFE

VOLUME II, 2019

EDITOR'S NOTE

Highlights...

I’m so pleased to bring you this edition of MS Life Volume II. Volume I looked back on MS Queensland’s 60year history and I hope you enjoy this edition which touches on the celebrations and milestones we shared throughout 2018. Along with the birthday celebrations, this edition takes us into the future of MS Life by bringing you health and lifestyle tips from the community and sharing stories of the many faces of MS.

Our 60th birthday year

World MS Day 2019

We often talk about how no one person with MS is the same. There’s no ‘benchmark’ to compare yourself to, or to know what to expect. What we do know is that the invisibility of MS is something all people in the MS community have in common. Whether your MS is “visible” or not, there are many symptoms that no one will ever be able to see. Even those in the community who are using a wheelchair live with invisible symptoms daily. This year’s theme for World MS Day on 30 May is #MyInvisibleMS. We hope this brings the invisibility of MS to the forefront of the minds of the world, to raise awareness, create understanding and reduce or hopefully stop discrimination.

F R O M

My Invisible MS

Nata scha Schwart z MS life

I hope you now enjoy looking back on the year that was with our 60th birthday reflection on page 4.

We remain as determined as ever and 2019/20 are full of new projects to improve the quality of life for the MS and neurological community. We’ve started the year by opening our latest and fifth housing solution. What’s more, I look forward to bringing you more announcements in this space soon!

E D I T O R

When joining MS Queensland just as it finished its 60th anniversary I thoroughly enjoyed learning about the history of the organisation.

Though we have 60 wonderful years of history. I say “hats off to our history but sleeves rolled up, to our future!”

I hope you enjoy this edition and we’d love to hear your feedback. This is your magazine as much as it is MS Queensland’s so please share with us what you want, what you like, and what you don’t like so much. We’re keen to hear it all!

Welcome

A day with an MS Queensland Neuro Physio

We’ve also opened additional Wellbeing Centres to make access easier. These centres have already made a great impact to individuals. What’s more we are demonstrating in excess a positive $12m impact to Qld Health and seeking a share of that through improved funding.

T H E

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We’ve introduced more innovative approaches across MS Queensland such as trialling a NeuroPhysio clinic on a Saturday. The trial is to respond to those who cannot access the service during working hours and is proving to be a success. We’ll be looking at additional trials based on your feedback. In the digital space, I hope those of you who subscribe to our MS Insight e-newsletter are enjoying its ‘reinvention’ as well as our new and much improved website msqld. org.au. World MS Day is on 30 May. The theme this year is ‘My Invisible MS’. We need to communicate the impact of MS to the community to increase awareness, grow support and encourage research. There’s plenty of ways you can get involved through spreading the word and fundraising. It’s an important and fun time. The excitement is building as we aim to make this the biggest World MS Day yet. I look forward to joining you in spreading the word and raising much needed funds this World fe MS Day.

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G E R A R D M E N S E S C E O , M S Q U E E N S L A N D

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VOLUME II, 2019

2018

Our 60th Birthday Year January February NDIS rolls out in Cairns, Maryborough and Rockhampton regions

May

We acknowledge World MS Day with activities across the state

Griffith Sport MS Swimathon raises $16k & Gold Coast MS Swimathon raises $13k

Our MS awareness campaign launches

March MS Queensland becomes IPWEAQ’s charity of choice raising $12k

June We farewell Granston Lodge

April MS Big Dinner Party raises $7k

We officially celebrate our 60th birthday

The Springfield Apartments open

Bridge to Brisbane raises $14k

MS Brissie to the Bay bike ride raises $950k

MS Moonlight Walk raises $420k

Toowoomba MS Swimathon raises $27k & Redcliffe MS life MS Swimathon raises $23k

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The Coloplast Continence Nursing Service expands

We open an office in North Lakes

September We welcome back the MS Readathon

November We open a Wellbeing Centre in Ipswich

Cairns MS Swimathon raises $16k & Townsville MS Swimathon raises $26k

July

August We celebrate Albany Creek Apartments’ first birthday

Rockhampton MS Swimathon raises $27k & Mackay MS Swimathon raises $14k

We host the first ‘Stem Cell Treatment Discussion’

Logan Walk2Cure MS raises $20k

MS Employment Support Service is introduced

NDIS rolls out across Brisbane and the Gold Coast

October We open an office in Cairns

Mosaic Property Group Sunshine Coast MS Swimathon raises $22k & Jindalee MS Swimathon raises $15k

December We open a Wellbeing Centre in Capalaba

We welcome Jemma Barsby as official MS Queensland ambassador

Results of the ‘Phase I EBV Adoptive T cell immunotherapy’ clinical trial are announced

We celebrate Toowoomba MSWellbeing life Centre’s first birthday

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We host a MS Queensland members lunch

We farewell Dutton Park

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VOLUME II, 2019

MS affects more young people in Australia than any other progressive neurological disease

The number of Australians diagnosed with MS has increased by more than 20% since 2010

The average age of diagnosis is just 30

Three out of four Australians with MS are women T H E L AT E S T O N

3970 Queenslanders are living with MS

Multiple Sclerosis

More than 2.3 million people live with MS globally

More than 10 Australians are diagnosed with MS every week

$1.75 billion annual cost of MS to individuals & the Australian community

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FA RE WEL L TO

Judy James More than 25k Australians live with MS

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This has increased by 41% since 2010 due to the increase in people living with MS and increased costs per person

Judy James was there when one of MS Queensland’s oldest support groups was formed, the ‘Toowoomba and District MS Support Group’.

Judy and her peers in the Toowoomba Support Group also lobbied MS Queensland for the establishment of the first Service Coordinator, a service which now exists across Queensland.

For more than 27 years Judy has dedicated her life to helping others living with MS to get the best out of life.

Advocacy and lobbying aside, Judy has been there for the countless people who have been diagnosed with MS, as well as their friends and family. She’s been there as a friend, support person, information source, counsellor, and has even opened her home to those living with a disability who couldn’t access appropriate disability accommodation.

Judy who is approaching her 80th birthday, and living with the long-term impacts of her MS, has decided it’s time to close her office. Judy is now retiring from her role as MS Disability Advocate and Toowoomba Support Group Committee member but will remain a friend of all of those living with MS, and MS Queensland. Not only has Judy provided support to people living with MS, their families and friends, she has also advocated on their behalf to create real change in the Toowoomba region, as well as at a state and national level. Judy’s motto of “always start at the top and don’t stop until the required result is achieved!” has created a life-changing impact on the MS community. Just some of Judy’s work includes lobbying Queensland Health to gain access to the local therapy pool for people with a disability followed by a $1.4 million refurbishment. She’s fought for improved accessibility and services, making many submissions for better airline, bus and train access, parking and health services, and ATM and public phone access.

We thank Judy for her service and unwavering dedication.

“I have enjoyed the friendship, the company, emails, and phone calls from so many wonderful people with MS, their families and carers, from all round Australia and many parts of the globe. It has been a great and rewarding journey because of having met so many great people with all forms of disabilities along the way.” TOOWOOMBA MS SUPPORT GROUP, LIFE

Judy, along with the Toowoomba Support Group MEMBER OF MS QUEENSLAND, WOMEN lobbied for first Beta-feron treatment to be MS li fe DISABILITIES AUSTRALIA, PEOPLE WITH WITH included on the Pharmaceutical Benefits DISABILITIES AUSTRALIA, PHYSICAL DISABILITY Scheme, as well as the critical Continence Aids COUNCIL, AUSTRALIAN FEDERATION OF MS li fe Payment Scheme, and the Medical Cooling and DISABILITY ORGANISATIONS, 2010-11 VOLUNTEER Heating Electricity Concession Scheme. OF THE YEAR

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COMMUNITY 2019

World MS Day We’re really excited about this year’s World MS Day theme as we know the invisibility of the disease can be enormously frustrating and leads to misconceptions. This year we want you to join us in raising awareness of the invisible symptoms of MS and their unseen impact on quality of life. “You don’t have to see my MS symptoms to believe them.” The ‘My Invisible MS’ campaign gives a voice to everyone affected by MS to share your invisible MS symptoms and express what you want others to know and understand about MS. We want to challenge the common misconceptions and help people understand how to provide the right support. You can get involved in spreading awareness of MS across Queensland!

HOW CAN YOU GET INVOLVED?

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Your story Share your MS story or something as simple as your most frustrating symptom on social media - tag @msqld and use the hashtag #MyInvisibleMS Share Share MS Queensland’s World MS Day social media posts with your friends.

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Educate Download some of the posters available at worldmsday.org/tools and put them MS life up around your community.

Wear MS life Wear red on World MS Day and tell people why. MS life

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Snap Take a photo of one of the Queensland landmarks in red lighting and share it. You can find the landmarks at worldmsday.org/events Shake Shake a donation tin in your local community. Get in touch with us if you want a donation tin sent to you. Host Host a ‘Go Red for MS’ event. Visit msqld.org.au/go-red-for-ms Share the facts Encourage your friends and family to share facts about MS.

How will you Go Red? AT WORK • AT SCHOOL • WITH FRIENDS

How creative can you be to help fundraise for MS research? A fun staff wear red day, a casual lunchtime barbecue or a red themed morning tea, the possibilities are endless...

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VOLUME II, 2019

COMMUNITY W O R L D M S D AY 2 0 1 9

My Invisible MS For this year’s World MS Day we chatted to some of the MS community to hear what their frustrating symptoms are and what World MS Day means to them.

Jenny Bennett MOST FRUSTRATING MS SYMPTOM/S

Eleanor Rigden MOST FRUSTRATING MS SYMPTOM/S

Fatigue is something that people don’t understand. When you’re tired you can keep going where as with fatigue, your body melts. Your body doesn’t function properly. You can’t even stand. You can hardly lift your head. It can happen instantly and no matter where you are.

In the early years I had a lot of brain fog. Now it’s more so the giant hand on my head pushing me down and the razor blade that pops up under my skin. One of the things I’ve resolved to do is really to live in the moment – MS doesn’t change the way I’m carrying out my life, so when there’s a stab of pain, it pulls me out of the moment.

My world is shrinking because my MS symptoms prevent my inclusion in society and family events. TO ME, WORLD MS DAY MEANS... I feel proud that we have World MS Day. I want people to know… us. I want people to know the disease and how we live our life with this disease.

TO ME, WORLD MS DAY MEANS... To me World MS Day is the big rally call. You need those days of gathering and a big day for everyone to shout at once. It reminds you that you’re not alone.

It’s not like we’re not talking on other days of the year or even that we don’t have MS on other People will be getting diagnosed with MS this days of the year, but there’s something in a week. Young people with jobs, mortgages and communal push. It’s a burst of energy that children. It’s life changing. I think it’s the fearMS and li fe the unknown that’s the worst. The more people reminds you that you’re not alone and that there are other people. It’s just an exciting day. that know about it, it’s got to help. The links MS we li fe It’s kind of your day to stand up with other can make with more people knowing can help people and say, “YES! We’re doing this!” us down the line. We’ll paint the city red.

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Jenni Saunders MOST FRUSTRATING MS SYMPTOM/S

Jemma Barsby MOST FRUSTRATING MS SYMPTOM/S

The depression and the pain.

The pins and needles in my arms and legs.

TO ME, WORLD MS DAY MEANS...

Community awareness.

A day of awareness and making sure people check in with those that have MS. Being a silent disease a lot of people put on a brave face each and every day.

Gary Allen MOST FRUSTRATING MS SYMPTOM/S

Wendy Lovelace MOST FRUSTRATING MS SYMPTOM/S

Fatigue and pain. Only people who know me very well could spot those. At the moment it’s my vision as well…I’m sort of looking through an old TV screen in terms of extra colour in my vision.

The perpetual cycle of loss, grief, adjustment and acceptance as things always change. Also, all of the invisible symptoms and the complication of living with disability.

TO ME, WORLD MS DAY MEANS... If there was an advantage to MS which is maybe a strange thing to say, one of the advantages of World MS Day is that there are lots of people that are supporting you and lots of people that want to make a difference in your life.

TO ME, WORLD MS DAY MEANS... It is a great opportunity to share the MS Journey with as many people as possible. To share the broad spectrum of people’s experience for people living with MS. To share the challenging, ambitious and the overwhelming potential for positiveness in living with MS.

Even someone making a small gesture on the day, wearing some red or making a donation, SHARE YOUR MS STORY OR SOMETHING that actually is a massive boost for people that MS li ASfe SIMPLE AS YOUR MOST FRUSTRATING live with MS. When I say people that live with SYMPTOM ON SOCIAL MEDIA - TAG @MSQLD MS that includes carers and family membersMS as li AND feUSE THE HASHTAG #MYINVISIBLEMS well as individuals. It’ s a huge boost to your day. It’s just fantastic.

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VOLUME II, 2019

COMMUNITY FUNDRAISING

Get Involved Have you thought about joining a fundraising event or even volunteering but you’re not sure where to start or what’s right for you? Here’s some options!

MS Brissie to the Bay bike ride Join the ride with a 10km, 25km, 50km and 100km option. Join Cheer Club and cheer our riders across the finish line. Volunteer as a course marshal, drink station attendant, photographer or help out at home base in the registration or merchandise tents. Distribute promotion post cards across your area.

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World MS Day Volunteer to join us tin shaking at Brisbane train stations or in your local community. MS Big Dinner Party Host a dinner party, morning tea, a BBQ or even a picnic and raise money for MS. Create your own fundraising event You can host a morning tea at your work Organise a trivia night

Distribute promotion post cards across your area.

MS Swimathons Join one of the swims across 10 locations in Queensland.

Join a community fundraising event Run for MS Queensland in the Bridge to Brisbane

Join a Walk2Cure MS in Weipa or Logan Join any of the other events across Queensland and choose to fundraise for MS Queensland.

MS Readathon Encourage your children, grandchildren, nieces or nephews and their school to join.

MS life Come along to one of the swims in your area to say hi and support the swimmers. FOR MORE INFO VISIT MSQLD.ORG.AU/ OR CALL 07 3840 0828 MS liGETINVOLVED fe

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Sell raffle tickets

MS Moonlight Walk Join the walk to fight MS in Brisbane. Accessible options available. Volunteer as a course marshal, drink station attendant, photographer or help out at home base in the registration or merchandise tents.

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COMMUNITY YOUNG FUNDRAISERS

Bringing Hope Whoever said that young people these days are less hard-working or more selfabsorbed are being challenged by this group of dedicated, passionate, and generous young fundraisers. Meet the young Queenslanders committed to helping people living with MS...

Archie Five-year-old Archie was back this year for his fourth MS Swimathon. Yes…his fourth out of his five years! This year, Archie reached a special milestone with the MS Swimathon t-shirt finally fitting him.

Aimee 13-year-old Aimee has been raising money for her local MS community and swimming in the Townsville MS Swimathon for half of her life, but this year was a different one for Aimee. When the devastating floods washed through Townsville, Aimee and her family were one of the unlucky ones who lost their home. Despite the devastation faced by Aimee and her family, Aimee was committed to push through and fundraise for MS Queensland regardless. “I understand that all Townsvillians have been left distraught and stressed after the floods, so I understand that fundraising this year won’t be as high as usual, but I still wanted to participate and raise money for MS,” said Aimee.

Connor 11-year-old Connor was committed to raising $200 and reading as many books as he could in last year’s MS Readathon. Instead he raised over $2,500! Connor whose grandmother lives with MS, inspired him to help other people living with MS. Connor, at just 11, confronted his fears of public speaking to talk about his fundraising at his school assembly. He also sold chocolates and organised raffles. “I’m so proud of Connor and it’s very special that he wanted to raise money because of me. MS can be tough not only on the person living with MS but also the family and friends of those living with MS and it impacts everyone differently. I’m just so delighted that Connor has put so much effort in to help the thousands fe li of other people living with MS,” said Connor’s grandma Ruth.

MS Aimee, you epitomise strength and generosity. MS Queensland and all the MS community thank you! MS life MS life

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JUST CAUSE

Rachel Kerr, MS Queensland Ambassador, is a family friend of Archie’s and inspired little Archie to help other people living with MS.

bunch

Archie fundraises by collecting 5 cent coins and rallying friends, and family to help his collection.

Thinking of buying flowers for someone?

Although the Rockhampton Swim has just finished, Archie is already preparing for next year by handing out buckets across Rocky to collect 5 cent pieces for the 2020 MS Swimathon!

Buy them from ‘Just Cause Bunch’ and enter MS Queensland’s code:

MSQLD

Archie’s mum Carmen, is beyond proud. “We are so proud of Archie! We feel that him getting involved in fundraising and the Swimathon is great for his social skills and selfconfidence.

100% of profits go directly to MS Queensland!

It teaches him that giving to others is important and the benefits of that are great. He has made new friends (young and old) and he loves to show his improved swimming skills each year. MS

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He started prep this year so counting the 5c has been great for his maths skills too,” Carmen said. MS life

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COMMUNITY MS QUEENSL AND’S

Housing Solution It all started with Granston Lodge when MS Queensland first began addressing the disability housing crisis facing Queensland. Now, the latest solution is the Wellbridge Apartments on the Gold Coast. The Wellbridge Apartments are funded and owned by a group of investors under a social impact investing model. The apartments were an existing building that was customised to provide Specialist Disability Accommodation. MS Queensland provides 24-hour care including nursing support giving both the residents and their families the peace of mind of knowing help is just a button press away. One resident whose life was changed with the opening of the apartments is Michael Kourasias. Michael moved himself into aged care in late 2017 as he said he no longer wanted to be a burden on his family. Thankfully Michael’s time in aged care was short lived as he soon realised it wasn’t the place for a person of his age. As Michael’s MS progressed his care needs were becoming more than his wife Isabelle could manage at home and he was again facing the prospect of returning to aged care.

disability accommodation funding was included in his NDIS package which allowed the move to become a reality. “Even on the first day, Michael said ‘oh my goodness I actually do feel like this will be my home.’ It felt that comfortable straight away and that’s the main difference. It does feel like a home rather than just a bed and a room. MS Queensland has provided that opportunity of not only a space where people can be cared for but a space where the whole family can come and Michael can still be a part of the family,” Isabelle said. Not only has the move meant Michael has 24hour care, but it’s also allowed Isabelle to return to work to support the family and it’s restored their relationship to husband and wife rather than patient and carer. Michael can live his life without the feeling of burdening his family. “For me personally, it’s the best I’ve felt in ages. I don’t have any ambitions to go elsewhere for the first time [in a long time]. For most MS patients or any patient, they don’t deserve what they’re dished out in life but you learn to live with it. A place like this just makes it a lot easier to cope.”

Michael continues to live his life and enjoys his morning coffee by the beach regularly while Isabelle goes to work and their daughter heads off to school. A life as normal and as comfortable as they could have wished. As Isabelle That was until the Wellbridge Apartments says, “For us this has meant became available and MS Queensland offered the total difference between MS li fe Michael an alternative to aged care. a life, and a family, and being Our accommodation and service coordination together.” MS li fe teams worked with Michael to ensure specialist “When we initially knew that Michael had to go into care, the only option really on the Gold Coast was a nursing home and it just wasn’t set up for someone like Michael who still wanted to live life and still had a family and wanted to do family things,” Isabelle said.

MS liRIGHT: fe THE WELLBRIDGE APARTMENTS

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“You feel like you can do what you want, when you want. You don’t feel restricted at all andMS that’s lifethe big thing for me.” MS life

MICHAEL WITH HIS DAUGHTER AND WIFE ISABELLE

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HEALTH & LIFESTYLE

D AY I N T H E L I F E O F A

Neuro Physio Our NeuroPhysio team do amazing things to help the community maintain their quality of life and so much work happens behind the scenes, so we thought we’d take you through a day in the life of a Neuro Physio. MS Queensland Neurological Physiotherapist Morris Gambiza kindly took us through a normal working day for him.

8:30am Morris arrives at the physiotherapy clinic. If he has clients coming in that morning, he will set up the gym equipment and make sure everything is ready for them. Morris then prepares for any upcoming appointments with new clients. He usually prepares at least 3 days in advance, so he can conduct additional research if needed. His preparation for a new client assessment involves reading through the client’s responses to MS Queensland’s questionnaire. Important things the questionnaire asks you about are what you’re hoping to get out of NeuroPhysio, what kinds of symptoms you’re experiencing, what activities you currently undertake, if you have access to a gym/exercise equipment, how you spend your time and any challenges or obstacles you currently face.

This may also involve liaising with other service providers to investigate complementary services.

10:00am Morris has a new client assessment, so he reviews his notes from the client’s questionnaire in preparation for the meeting. Morris meets with the new client, hears more of their story and talks them through what to expect. “Initially I try to get as much background as possible. I want to understand what they hope to get out of physio and I explain how I can help. I want us to be on the same page so we both know what one another is expecting,” says Morris. Morris then undertakes some physical assessments with the client. “I look at some basic things like the person’s range of motion, strength, balance, their general mobility and we do a few tests so we can understand their abilities and needs. It is also important to get a baseline of functional ability.” Morris then finishes the assessment by summarising the plan and what he recommends for their NeuroPhysio program.

12:00pm Lunch break

This helps Morris to start considering what kind 12:30pm of support he can offer you before you meet Morris spends 30 minutes writing some file face-to-face for your assessment. Depending notes on the detail in the questionnaire and the MS li fe from his new client assessment and prepares the gym for the physio group session complexity of the identified needs, Morris will atfe 1pm. sometimes contact your GP and/or neurologist MS li to understand more about current symptoms.

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“NeuroPhysio can slow down and prevent complications. We can make a difference in your life and yes, NeuroPhysio will pay off whether you’re newly diagnosed or have been living with your disease for a long time. All anyone has to do is speak to any of our clients to understand the difference NeuroPhysio can make.” 1:00pm Morris has a group of 3 clients who attend a group physio session. These sessions are for clients who don’t need direct hands-on support throughout the session.

4:30pm Morris finalises some of the administration he has from the day and reviews his calendar for the next day which includes a rehab session, a home visit and a new client assessment.

Morris sets each of the clients up at an activity station and they each rotate through the activities. These may include some balancing exercises, strength training and time on the bike.

What we learned from talking to Morris is the importance of neurological physiotherapy. It is important because it recognises that there are a unique set of challenges for a person with a neurological disease and they are not just muscular skeletal. NeuroPhysio recognises the neurological impacts and focuses on helping people to maintain their quality of life by building their physical capacities to continue to participate in day to day activities.

2:00pm Morris spends time writing file notes following the group physio session. He also spends time working on NDIS reports. These reports cover what the physio found in the assessment and what supports are recommended. 3:00pm Morris prepares for his next client which is an existing client who is coming in for a neurological physio rehabilitation session. He reviews his file notes and the program he has designed for this client.

WANT TO KNOW MORE ABOUT NEUROPHYSIO? VISIT MSQLD.ORG.AU/ SERVICE/PHYSIOTHERAPY

ABOUT MORRIS Morris hails from Zimbabwe where his initial interest in Neuro Physio begin, via New Zealand where he spent six years working across paediatric and adult neurological conditions before moving to Australia.

3:30pm Morris works one-on-one with this client to direct them through some exercises to improve their balance, mobility and range of motion. This client is having difficulty as they are He continued to expand his neurological experiencing muscle stiffness from their MS experience and has spent the past 10 so Morris focuses on assisting them with this so they can function better. In other sessions, MS lifeyears working with people living with progressive neurological diseases like MS. Morris has worked with the client on their cardio fitness by using their bike and introducing some MS lifeMorris currently works from MS strength and conditioning exercises. Queensland’s Capalaba Wellbeing Centre.

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HEALTH & LIFESTYLE

LISA TRENDLE

Setting Goals Hello Fellow MS’ers, I thought I’d impart some of the knowledge and wisdom learnt along my MS journey. I thought I’d kick it off by talking about goal setting, not that I’m an expert by any means but it’s one of many life lessons learnt along the way. If only I knew at the time of my MS diagnosis, what I now know, life would certainly have been much simpler. The quote “Fall seven times, stand up eight” could indeed refer to myself. Every time I put on a particular work uniform, down I’d go and fall on the carpet floor. After the second or third episode it was not much fun. At the time I was diagnosed I felt I was in ‘noman’s-land’ and with no real direction to head towards. Fast forward almost 18 years and a hive of knowledge and wisdom and a few goals of my own achieved. “No man is happy without a goal and no man can be happy without faith in his own ability to reach that goal.” L Ron Hubbard. This is why I’d like to share some information about goals. The simple principle of goal setting is the ancronym SMART:

S – Simple M – Measurable A – Achievable R – Realistic T – Target

Simple • First things first, set your goal. • Write it down, stick up notes, tell your support network. • By keeping it simple you can work out little baby steps, to set you on your way. • Work backwards from your goal (for me i.e. 6 weeks until race day). • Write out a plan (in my case training sessions for 6 weeks including mock races, sprints and practice every race I’ve entered including dives, starts, finishes, turns etc).

Measurable • Have tiny steps to your goal. • Say, 2-3 weeks in, see how far you have come and what you need to get yourself there. • Keep working on your goal and step up to the next level to get you there, whatever it may be – and only if you need to. • Remember! Less is more, and listen to your body.

Achievable • Make your goal achievable. • Breathe, sleep, eat and feel it – hunger for the success of the goal outcome.

• Don’t put added pressure on yourself - if at MS li fe first you do not succeed, try again.

• fe We are only human, and sometimes MS li

external factors are beyond our control and

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“My advice is, if you have fallen short of what it is you want to do, dust yourself off so to speak, regroup and get back to the path of your dream, because it will be worth it.” hinder our progress i.e. lack of rest/sleep, we may have not fuelled our body correctly, we may have set the bar just a tad too high this time or our MS may have flared up. • Give yourself a pat on the back for having the courage to step outside your comfort zone and do something out of the ‘norm’.

Realistic • Is it realistic? • Nothing worth going for is ever easy but it’s worth it. I promise. • It gives you drive and hunger to want to do better and accomplish what it is that we wanted to achieve. • Yes, we have MS, but we are a unique breed and seem to move mountains to get to where we are going to, and I’ve met a few of you over the years and continue to be inspired by what you have achieved.

Target • Mission accomplished. • You did it.

Finally, self-belief is an incredible gift we can give to ourselves. Remember, you are ‘BUF’ Beautiful, Unstoppable, Fearless and ‘FEAR’ is simply - Feel Everything And Rise. Until next time, Cheers, Lisa

ABOUT LISA

• Be proud of who you are and what you have achieved.

Lisa is a fantastic MS Ambassador who lives positively with MS. Lisa competes in the Queensland State Swimming • Savour the moment. Championships and has won 6 gold • Don’t let anybody tell you, you can’t do medals. Lisa has been referred to as a something. MS lifetrail blazer for her club and for others with disabilities to get classified and • It may not be the ‘normal/conventional’ way to do it, but with some adaptation it can MS be lifecompete. done.

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The most preferred and compact catheter for women.

HEALTH & LIFESTYLE EMPLOYMEN T SERVI CE S

FREE SAMPLE

MS and Employment Finding employment and retaining employment can be challenging when you’re living with a disease like MS. We don’t want your MS diagnosis to mean the end of your career, or a halting of your progression in the job that you’ve already built experience and knowledge in. Of the people living with MS who were not in employment, 43% had stopped working within three years of their diagnosis. This figure rose to 70% after 10 years.

• equipment to make your job easier such as a stand-up desk or adaptive technologies

The MS International Federation’s (MSIF) Global MS Employment Report shows that the MS community’s employment is significantly impacted by their MS.

• financial assistance to access services, treatment or therapies • simple processes to help you think more clearly

Our MS Employment Support Service (ESS) is specifically designed to address the needs of people living with MS, whether you’re looking for work or just need some supports in your existing workplace. Our employment consultants can meet you in your home or at one of our Wellbeing Centres or office locations.

If you’re not currently working but you would like to be, we can help you to identify suitable employment, apply for jobs, write a resume and practice interview techniques with you.

The service is currently available in South East Queensland but please contact our NeuroAssist Team to find out how you can access the service regionally. Fatigue is one of the biggest reasons people leave their employment. 62% of people living with MS who were not in employment said fatigue prevented them from staying in work.

We support you through the whole recruitment process so you can find a job you are satisfied with and once you are employed, we’re also here to support you to stay employed. Our MS Employment Support consultants understand MS, and they understand that some symptoms seem invisible to others, but can make working difficult. We have a number of strategies for coping with these impacts. Ultimately, we want to empower you to take control of your working life and not allow MS to stop you from doing what you want to.

To combat this it may be as simple as taking regular breaks, modifying hours, starting to do regular exercise, managing heat or using MS a life cleaner or gardener at home to reduce your FIND OUT MORE AT MSQLD.ORG.AU OR fatigue. CALL MS li fe 1800 177 591 There are also many other strategies available such as: MS 22

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MS LIFE

VOLUME II, 2019

HEALTH & LIFESTYLE

J A C

A T

B Y

Live For Now Jackie Weatherby is a vibrant 23-year-old who, despite being diagnosed with MS in August 2018, hasn’t let MS define her. Jackie was always an active and healthy person, but her MS diagnosis has motivated her even more. She now shares her health and wellness journey along with her MS journey on her own video blog. We sat down with Jackie to talk about her diagnosis and how she’s now managing a life with MS.

How was the path to diagnosis for you? I cannot remember any symptoms prior to my first relapse last year. The whole right side of my body felt really heavy and I was having trouble walking. I had done a 15km run the day prior, so I thought maybe something had happened to my muscles. I was about to go on an overseas holiday, so I couldn’t just keep ignoring the symptom. I went to my doctor the day I was flying out and asked if there were any stretches I could do to improve it. My doctor did say they thought it was more than just muscles and more likely to be associated with my brain so they told me to come back when I returned from my holiday. When I was overseas the symptoms worsened. My face and body were tingly but I didn’t want to ruin my holiday so I just relaxed by the pool.

How did you and your friends and family react to your diagnosis? The scariest part was that I didn’t know much about MS and I had these awful symptoms that were affecting my ability to move and be active. All I could think about was how I would function if these symptoms were part of my regular life, which felt pretty life-changing.

How has MS impacted your life? Initially, I thought I wouldn’t be able to do all of the things I loved. I cancelled my gym membership because I was lifting a weight and nearly dropped it on my head! I focused on activities I could safely do, and gradually incorporated more activities back into my routine.

My friends and family were really upset, but incredibly supportive. One of my best friends is studying neuro psychology, so she was the perfect person to talk to. After talking with her, my family and I focused on educating ourselves to understand MS and what it might mean for me.

Eight months into my diagnosis, the only real lifestyle change is that I get my treatment every four weeks which means I have to take time off work. I won’t go on many long runs anymore to avoid getting over-fatigued, I am back in the gym safely lifting weights, and I am definitely more conscious of how much body is feeling before and after exercise. I am practicing listening to my body, and feel great for it.

How did you keep a positive and focused attitude in the whirlwind of your diagnosis? After my diagnosis, I was put on drugs that I went to my doctor when I came back from started to improve my symptoms, so this fe my attitude quite quickly. I could see holidays. I had an MRI and was told that theyMS li changed suspected it was MS. I was diagnosed relatively that things could get better, so I began to focus quickly because my MRI showed typical MS MS li fe on the next steps rather than looking too far lesions. ahead and getting caught in my own head.

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I also don’t attribute things to my MS so it can’t define me. If I’m feeling fatigued, I’d prefer to not attribute it to MS as that only gives the power to my MS. I truly believe that your mindset and attitude is half of the battle when it comes to facing any difficult or uncomfortable situation.

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I am more grateful for my body and what it can do for me. I appreciate that I can move and I think movement is so important. I’m in charge of my own health so I accept that my MS may affect my body and I’m not too hard on myself. I make sure I stay active but I listen to my body and don’t stress it more than it needs.

What is your advice for someone who is newly diagnosed? Don’t think too far into the future. Instead, focus on what you can do now. Take it day-by-day then week-by-week. Thinking about the ‘what ifs’ is not helpful and it’s not going to change anything for you today. You can’t live in the future, but you can live in the now. Where possible, stay active, have a daily routine that you thrive on, have a support network that focuses on the positive, listen to your body and don’t be too hard on yourself! When it comes to Jackie’s future, she says she doesn’t know, but she’s okay with that, like most 23-year-olds. She’s happy to live in the now, keep enjoying her career, using her vlog as a creative outlet, and is thinking about undertaking some study in the health industry. FOLLOW JACKIE’S JOURNEY @JACWEATHERBY JACKIE WEATHERBY

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MS LIFE

VOLUME II, 2019

HEALTH & LIFESTYLE W H AT Y O U W A N T T O K N O W

Diet and MS It doesn’t matter if you’ve been living with MS for a long time or you’re newly diagnosed, diet and its impact on MS seems to be a topic that continues to come up. You may have received advice from wellmeaning friends and family and there’s often new articles or blogs on how diet and particular vitamins affect MS. There’s a lot of information available and it can be difficult to navigate the overwhelming amount of advice but there’s some simple key points that you can take away to help you to look after yourself as best you can. You can use this information to make positive lifestyle decisions and aim to be as well as humanly possible. Dietary changes may have a positive impact on your MS but what we know for sure is, they will impact your general health – and the healthier you are the better you will manage with the things that MS throws your way. If you’re thinking about changing your diet, there’s a couple of questions to consider as you go: • What am I expecting from a dietary change? • Can I stick to it (how will it impact your social life)? • Are you trying to manage MS or keep other things away? The “keeping other things away” point is a very important one. Living with MS is challenging enough without having to manage another MS illness.

Most of us have some room for improvement in our diet to avoid potential future health complications. When we talk about other health complications, this can include heart disease, stroke, Type 2 diabetes and Osteoporosis which in most cases are preventable. It is important to keep your body healthy to avoid health complications like this in addition to your MS. For example, evidence shows that a “single vascular comorbidity” i.e. heart disease or stroke can cause your MS to progress more rapidly. Specifically, a person with MS that also experiences heart disease or stroke is likely to reach an Expanded Disability Status Scale (EDSS) of 6 (need an aide to walk 100 metres), 6 years earlier than those without heart disease or stroke. The great news is, that most of these are preventable. One thing we know for sure, is that salt is not good, whether you add it yourself or it’s in the food you eat.

MS is unique, one diet may work for one person and not the other. Please also remember that a dietary change is not going to make a difference in few weeks, it is more so months and years. They are long-term solutions and you may not see benefits immediately.

VISIT OUR WEBSITE FOR MORE INFO ON DIET AND EXERCISE MSQLD.ORG.AU

High salt diets have an impact on MS over a long period of time as it triggers an inflammatory response. It is not just the inflammatory response though; it is also salt’s impact on other health complications like heart disease etc.

The scientific evidence is debatable for any specific MS diet and if you’ve spoken to your neurologist or GP about this you may not have received an enthusiastic response but that doesn’t mean there isn’t value in these diets.

Alcohol and caffeine often come into the debate as well and the advice seems to be consistently changing. With alcohol and caffeine simply apply the moderation principle... everything in moderation.

Please note that what we share with you in this article is at this point in time and any significant changes should be done in consultation with your health care team and in some instances a dietician/ MS fe li nutritionist. Please remember, you may have MS but you are also allowed to have a life.

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Many people living with MS would have heard of Reviewing and managing your diet can be more the MS li fedifferent diets from Swank, Jelenik and so about making sure you’re the healthiest Whal which are summarised on page 28. Each version of yourself to avoid any other illness. of them has merit and we know everyone with

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Did you know? Many “low-fat” products are high in sugar…always check the labels!

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REMINDER

There is nothing unsafe in the diets described in this article. If you try it and you don’t feel any different then perhaps it’s not for you, but if you notice a benefit and you feel better from a diet then it can’t be a bad thing.

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VOLUME II, 2019

DIET Dr. Swank/Dr. Jelenik Diet

WHAT IS IT? low fat diet advocates reduction in saturated fats wholegrain cereals recommended two serves of fruit and vegetables daily

WHAT DOES IT REMOVE?

POSSIBLE DEFICIENCIES

processed foods with saturated fats

none expected

high-fat dairy products

possibly Vitamins A, C, E and folate

red meat for first year

white fish, shellfish and trimmed poultry allowed small quantities of red meat permissible post-first year emphasises consumption of game meats (30-35% daily caloric intake) and plant foods (besides cereals) multiple daily servings of green, sulfur-rich and intensly colour fruit and vegetables

processed foods domesticated meats and dairy

folic acid Thiamine Vitamin B6 Calcium Vitamin D insufficient caloric intake

high intake of polyunsaturated fatty acids to target particular ratio of saturated to unsaturated fats Gluten Free Diet

avoidance of all foods containing wheat, barley, triticales or their derivatives

foods containing wheat, barley or triticales or their derivatives

none expected

McDougall Diet

high carbohydrate

dairy

iron

low fat

eggs

Vitamin B12

low sodium vegan diet with cereals, potatoes and legumes as staples

meat

Calcium

poultry

Vitamin D

fish

fatty acids

fruits and vegetables are allowed in any amount

observational none data from a single cohort of patients treated with the diet suggested an improvement in relapses and functional status.

single observation study demonstrating possible improvement in fatigue in progressive MS.

none

all oils

high intake of wholegrains, no specific vegetables, fruits, exclusions legumes, olive oil, and fish low intake of saturated fats (butter and other animal fats), red meat, poultry, dairy products regular but moderate intake of ethanol (mainly red wine)

single study showed improvement in cardiovascular risk factors

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none

Healthy Cooking Jodie was just 17 when she began getting pains so intense she could barely move her eyes. It took six frustrating years for Jodie to get her MS diagnosis and it forced her and her partner Robert to make some tough decisions. Jodie gave up her stressful career as a chef and channelled her knowledge of food and cooking into creating healthy recipes.

FOLLOW JODIE’S JOURNEY THEALMOSTVEGANAUSSIE.COM @THE_ALMOST_VEGAN_AUSSIE @THEALMOSTVEGANAUSSIE

Vegan Spaghetti and Meatballs treatment for Celiac disease and nonCeliac gluten sensitivity one study showed improvement in cardiovascular risk factors with one week of the diet. *did not look at long term effects

none

JODIE’S

Jodie has her own blog where she shares her experiences with MS and amazing creative recipes. Jodie was kind enough to share one of her favourite recipes for us to publish.

*diet was bundled with other interventions and there was no comparison group.

low sodium intake and small amounts of sugar recommended Mediterranean Diet

OTHER DISEASES?

*there was no controlcomparison group

low-fat dairy allowed

Dr. Whal’s Protocol

EVIDENCE FOR MS

extensive evidence for a benefit on cardiovascular health, diabetes and possibly on cancer risk

INGREDIENTS Meatballs 1x400g tin of lentils, drained 3 cloves of garlic, diced 1 onion, diced 1/2 bunch of parsley or 1/2 cup 1 cup of mushrooms, roughly chopped 3/4 cup of breadcrumbs, (I used a garlic and herb blended crumb) Tomato Sauce 2x 400g tins of quality crushed tomatoes 100ml of water 1 x onion, finely diced 3 garlic cloves, finely diced 1 tsp of ground oregano 1 tsp of thyme 1/4 tsp of bicarb soda 1/2 bunch of fresh basil 1/2 bunch of fresh parsley Pasta 1 quantity of cooked pasta, (enough for how many people will be eating)

INSTRUCTIONS Pre-heat oven to 170 degrees Celsius In a pan over medium heat add a dash of water as well as onion, garlic and mushrooms. Let cook for 3 minutes or until just soft. To a food processor, add the onion mix, lentils and parsley. Blend until well combined. Now add in breadcrumbs, pulse until the mix is starting to hold together. Add more breadcrumbs if needed. Roll into desired sized balls and place on a lined baking tray and bake in a pre-heated oven for 20 minutes. For sauce, In a fry pan over medium heat add a dash of water, onion and garlic. Let cook for 2-3 minutes. Add in crushed tomatoes, oregano, thyme and water. Lower heat to the lowest setting and let slowly cook for 20-30 minutes. Add in bicarb soda and let foam, mix through.

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Remove from heat and add fresh herbs. Season.fe MS li Pour sauce over cooked spaghetti and top with meatballs.

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MS LIFE

VOLUME II, 2019

HEALTH & LIFESTYLE

S A U

Art as an Outlet Many of you in the MS community have probably come across Jenni Saunders at one time or another. She’s the convenor of MS Support Groups and has been a vital part of the MS community. What you may not know about her though, is that she’s an artist, using her art as an outlet and a distraction from her MS and its symptoms. We sat down with Jenni to talk about her art, how she found herself as an artist, and her advice for others who may want to give art a go.

How long have you been doing art and what made you start? I’ve been doing it for many years. When I first moved to Queensland, I joined a local art group. To start, I was just playing a bit and as my interested grew, I took a number of art classes. I would still call my art a hobby, it just so happens that sometimes I sell some of my work. Were you always an artistic person or did you have to train yourself to be artistic? I was a hairdresser when I was younger, and have spent most of my life working with horses including show horses so I had some creativity in my life. I’ve also always seemed to have an affinity with colours. If I don’t have colour in my life, then it’s pretty boring so I like to bring colour into my art as well.

This is especially difficult on days where I have lots of pain and fatigue. I also have a dexterity issue with my right hand but I push through. Depression is probably the worst and most limiting symptom I experience, and it can be a big barrier. It’s the worst because it controls everything and can take over because it is telling your brain what to think. It’s those days that I need my art the most, but I also sometimes just can’t face it. My art is also quite big and I use gloss and resin so it’s not easy. I also need to immerse myself in it for a couple of hours to get the results I want so if I’m not in the right frame of mind, I can’t commit to it.

How do you feel when you are painting and creating? It’s my outlet. It’s such a positive thing and it takes you somewhere, where you’re not stuck Does your MS affect your ability to do your in your own head. If you’re living with a disease art? MS lilike feMS, you can get stuck in your head and find My fatigue can get in the way of doing art. yourself procrastinating. When I’m working on There’s also some days where I’ve just lost my MS my feart, I get lost in the colours, textures and mojo to get up out of bed and get into my art. li movement.

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Do you think art can act as therapy? Absolutely. It doesn’t matter what it is – it’s just a switch to get you out of your own head and is something fun and positive that you can do and you see a product at the end. I’m part of an art group and you can see that it keeps people vibrant and brings colour to your life. When I see everyone in the group doing their art that reflects who they are, I get a lot of joy and that’s got to be a good thing.

What advice would you give to someone who wants to try art but doesn’t know how? Look up an artist group in your area and just get involved. Many people are going for therapy, whilst others are there purely for the art. I often go to my art group without my art as my art is quite large, so instead of painting, I have a chat to people and get ideas from them. It’s very relaxing. Art groups can also offer general support and the sharing of ideas so if you’re not sure what medium you want to try, visit a group and they may inspire you.

What would you say to the person who’s thinking they can’t do art? Just have a go…you can paint with anything. You don’t need the right tool to achieve your goal. When you think of art, it’s easy to assume it’s all about the complicated details and using a paint brush but there’s so many other options. It’s also not about how technically perfect any art is. It’s about what you get out of that painting and what it says to you and how it reflects you. It may not be perfect, as long as it has given you something. If you’re on the Sunshine Coast you’re welcome to come and have a chat and join my art group at Buderim Craft Cottage. You can even just come to have a look – we do all kinds of things like paintings, jewellery, sculpting etc. TOP: ARTWORK BY JENNI SAUNDERS

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MS LIFE

VOLUME II, 2019

HEALTH & LIFESTYLE REVISITED

MS Treatments Much has changed in the world of MS treatments since our last edition of MS Life so we thought we’d revisit the last article we shared with you summarising the options. Over the past 20 years, treatment options have expanded significantly going from no options to multiple disease modifying treatments (DMT) that can reduce relapse rates and mitigate disability. With ‘choice’ also comes confusion about which one for me? How they are given (injection, tablet or infusion), how often and how they work, are all considerations for both you and your Neurologist. Immunotherapy is the broad term that encompasses any drug that changes the way your immune system responds to the disease that you have. An immunomodulating therapy will alter or change immune functions without destroying the actual immune cell itself where as an immunosuppressing therapy will block, bind or kill immune cells, meaning it works by reducing the number of those immune cells that are circulating. Regardless of which treatment option you choose, all therapies approved in Australia have demonstrated a reduction in relapse rates and MRI activity meaning they have reduced the inflammatory side of the disease. However, one size doesn’t fit all, and we can’t compare these therapies directly against each other.

This makes your choice of treatment a personal one and is largely reliant on your confidence as to what you are comfortable doing along with your Neurologist’s advice. Unlike many other chronic conditions, with the current range of therapy options for Relapsing MS you and your Neurologist have the opportunity to share in the decision-making about treatments that may be best for you. After having some of these therapies available for 20 years, there is growing evidence that these therapies are delaying or preventing the progression of the disease. The basis of DMTs for MS is that we are trying to achieve No Evidence of Disease Activity (NEDA) and the current baseline that we are using is known as ‘NEDA-3’ ( a criteria of three ways to monitor your disease) which means:

Lematrada (Alemtuzumab) Ocrevus (Ocrelizumab)

Mavenclad (Cladribine)

ADMINISTERED Oral medication Oral medication Injection

TGA APPROVED Yes for RRMS Yes for RRMS Yes for RRMS

PBS APPROVED Yes for RRMS Yes for RRMS Yes for RRMS

Injection

Yes for RRMS

Oral medication Infusion

Yes for RRMS Yes for RRMS

Infusion Infusion

Yes for RRMS Yes – for both RRMS & PPMS

Yes for RRMS Yes – only for RRMS

Oral medication

Yes for RRMS

(pending further consideration for PPMS) Yes for RRMS

1. No clinical relapses/no new episodes 2. No new MRI lesions 3. No increase in your disability score (disability score is a number assigned to your level of function) As our MRI technology improves, we may start to move to ‘NEDA-4’ which adds a fourth criterion of ‘no increase in brain atrophy’. If technology allows us to measure this, it will allow a more comprehensive assessment of disease activity and worsening and structural damage.

With more treatment options than ever, making the right choice for you can be a difficult one Other symptomatic treatments that may at especially because each person’s journey with times be recommended for people living with MS is unique. A challenge for all of us is that MS MS. These may include Baclofen for muscle life we are not at a point where we can say that a control and to alleviate spasticity, Naltrexone to particular treatment will work for a particular address fe fatigue and depression, Ditropan and person nor can we compare one treatment MS to li Betmiga for bladder dysfunction. another in terms of efficacy.

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THERAPY Aubagio Gilenya Glatiramer Acetate: Copaxone 40 Interferon Beta: Avonex, Betaferon, Plegridy, Rebif Tecfidera (Dimethyl Fumarate) Tysabri (Natalizumab)

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When considering your choice of therapy there are a number of factors to consider and there are different considerations for your neurologist and for you.

Medical Considerations • Burden of disease • Enhancing lesions • Disease course • Number of relapses

Patient Considerations • Lifestyle • Expectations • Capabilities • Support system

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Immunotherapy... The overall treatment of disease by inducing, enhancing, or suppressing an immune response. Immunomodulating... Having the ability to alter or regulate on or more immune functions. Immunosuppressing... Involves an act that reduces the activation or efficacy of the immune system.

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MS LIFE

VOLUME II, 2019

HEALTH & LIFESTYLE G O O D TO K N OW

Rebates, Concessions & Access Living with a chronic disease shouldn’t mean that you have to worry about additional expenses because of your disease.

The Medical Cooling and Heating Electricity Concession Scheme helps with electricity costs for people with a chronic medical condition affected by changes in temperature

MS Queensland continues to advocate for better concessions and rebates for people living with MS and especially ones that are not means-tested. We’ve put together a summary for you about the current concessions, rebates and other schemes to help people living with a chronic disease and/or disability. CONCESSIONS, REBATES & SCHEMES

Medical Cooling and Heating Electricity Concession Scheme The Medical Cooling and Heating Electricity Concession Scheme helps with electricity costs for people who have a chronic medical condition, such as multiple sclerosis that is affected by changes in temperature.

Medical Aids Subsidy Scheme (MASS) MASS provides funding for medical aids and equipment to people who have a permanent and stabilised condition or a disability. The scheme helps people to live at home and avoid early or inappropriate residential care or hospitalisation.

The Patient Travel Subsidy Scheme (PTSS) The PTSS provides financial assistance for patients who are referred to specialist medical services not available at their local public hospital or health facility. Eligible patients can apply for a subsidy to assist with travel and accommodation costs of accessing specialist medical services.

Home Assist Secure Home Assist Secure provides safety related referrals and subsidised assistance to people aged 60 years and over, or people with a disability who are unable to undertake or pay for critical maintenance services to their homes.

Taxi Subsidy Scheme (TSS) The TSS subsidises taxi travel for people with severe disabilities. Membership lasts for a maximum of 5 years. If you have a temporary disability, membership ranges from 6-12 months.

change

If eligible, you may receive a financial contribution towards labour costs for minor home maintenance or modifications relating to your health, safety or security which are required, so that you can remain in your home.

Drop your containers at your nearest depot and enter MS Queensland’s code:

Master Locksmith Access Key (MLAK) The MLAK opens all toilets, playgrounds and MS Queensland and other disability other facilities which are fitted with the specially organisations are currently lobbying the designed lock. This includes most council and Queensland Government to extend the TSS MS as li government owned facilities. fe it expires on 30 June 2019. Visit our website for updates. MS life

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FOR MORE INFORMATION VISIT OUR WEBSITE MSQLD.ORG.AU

CONTAINERS FOR

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C10089908 MS life

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All the money will go to MS Queensland!

MS LIFE

VOLUME II, 2019

HEALTH & LIFESTYLE OUR

NDIS Tips Many of the MS community are eligible for the NDIS, but we often chat to people who have assumed they’re not eligible or are concerned about the enormity of the process. Whilst there is no one-size-fits-all solution for accessing the NDIS and receiving the plan you deserve, there’s a few things you can do to give yourself the best chance of a smooth and successful process. There are generally six stages to the NDIS process and we encourage you to get in touch with us at MS Queensland before you even start the process. Please do not feel that you cannot reach out to us until you have access. We’re here to help from the very beginning and when this is the case, we’ve seen positive results.

STAGES OF THE NDIS PROCESS

1 2 3

Information and evidence gathering The process prior to applying for access to the NDIS. This includes completing an ‘Evidence of Disability Form’ which is designed to detail the impact of your disease on your everyday life. This is a very important part of the process. Eligibility and access The actual application process where you submit all of the required evidence to the National Disability Insurance Agency (NDIA).

4 5 6

Plan commencement The stage where after all of your hard work you are provided your plan and you can begin accessing supports. Plan review When your existing plan is reviewed 12 months following your plan commencement.

Pre-planning The stage where you prepare for the MS life kinds of supports you need included in TOP: OUR TEAM CAN HELP YOU your plan before you meet with an NDIA NAVIGATE THE NDIS PROCESS MS fe li representative.

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Planning The stage where you meet with an NDIA representative and talk through your goals and the supports you need.

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Tip #1 – ensure you provide clear and concise information Our NeuroAssist Team and Service Coordinators can help you with the kinds of information you will need and how you need to communicate these. Unfortunately, we have seen many instances where a lack of clear and concise information has delayed the process and, in some cases, led to applications being rejected. The NDIA has some specific terminology and unfortunately using different terminology or language can create unwanted complications.

Tip #4 – remember, the NDIS exists for you, be empowered to ask questions and confirm details During your planning meeting you will go through a series of questions and the NDIA representative will record your responses to these. You can ask if the representative will repeat your answers back to you so you can check if you think they’ve understood your response. This will give you the opportunity to clarify anything they may have misinterpreted or not put enough emphasis on.

Tip #2 – understand your goals, what you hope to get from your plan and how to communicate this Our Service Coordinators can help you with this. They will work with you in your pre-planning so you can be prepared for your planning meeting. They will help you to think about how the NDIS can help you in your everyday life and the best way to communicate this to the NDIA as well as the evidence you may need to help justify the supports.

Tip #5 – request a review of your plan if it doesn’t meet your needs If you feel the plan doesn’t adequately address your goals and the supports you need or the funding is insufficient to cover the costs of your supports, then you can ask for it to be reviewed. It may mean the NDIA didn’t understand your requests well enough. Our Service Coordinators can help you through this process and their support up front means you are less likely to receive a plan that is inadequate.

Tip #3 – go to your planning meeting prepared Tip #6 – don’t forget the importance of the plan review Again, our Service Coordinators can help you with this and even come to your planning Once you’re in the scheme, accessing supports meeting with you. Before your meeting keep and getting on with life, it’s easy to forget that notes about your day-to-day schedule and the you’ll have an annual review of your plan. Don’t things you need help with or have difficulty forget how important this is, especially with a doing. Be as detailed as possible and don’t disease like MS that can be unpredictable and assume that the NDIA representative will know. consistently changing. Take the time to review Bringing any relevant health assessments, the supports you’ve received so far. Do you medical reports, quotes for services and want to try some new things, are there some supports, and information about how the supports you now wish you’d had over the past support can help you to be more independent. 12 months or have you got new symptoms or If there’s any evidence of how supports can help challenges that you need support for? It helps to you, take that along as well. For your planning take notes throughout the year as it can be a lot meeting, you want to be able to have your goals tofe recall. MS li clearly articulated and have information to show what you need to help with your goals and why FOR MS li feMORE INFORMATION VISIT OUR it is important. WEBSITE MSQLD.ORG.AU OR CALL NEURO ASSIST ON 1800 177 591

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MS LIFE

VOLUME II, 2019

HEALTH & LIFESTYLE MS AND

Medicinal Cannabis There has been much talk across the MS community and in the media about medicinal cannabis products and their role in alleviating some MS symptoms. There are a range of medicinal cannabis products including oils, tinctures, and extracts, all of which are regulated by the Therapeutic Goods Administration (TGA). These products can be used in MS symptom management, mainly for neuropathic pain, as there is evidence that it may be effective in helping to manage these symptoms. Feedback from some of the MS community indicates that they are experiencing benefits from the use of cannabis oil to treat MS symptoms such as pain and spasticity. It has also been looked at to ease bladder spasms, sleep, ataxia and tremor but at this stage the evidence is still being collected. ‘Sativex’ is currently the only product approved by the TGA for use in symptom management in people living with MS, but it is not listed on the Pharmaceutical Benefits Scheme (PBS). At this stage Sativex is recommended for treatment only when all other treatments have failed, and is not appropriate for people with conditions such as mood or psychotic disorders. There are ways to legally access alternative imported medicinal cannabis products via the Special Access and Authorised Prescriber Schemes.

It’s important to discuss medicinal cannabis with your doctor and if they agree it is appropriate, they will need to decide which product they want to prescribe for you as well as organise the appropriate approvals. You should discuss your ability to access a pharmacy that is able to dispense medicinal cannabis products. You should also be aware that as these products are not listed on the PBS, they are costing approximately $400 - $500 per month.

Call us… 1800 177 591 Monday – Friday 7:30am – 6:30pm

Email us… hello@msqld.org.au

MS Queensland is keen to see the expansion of the treatment options available for people living with MS and importantly, for those to be accessible and affordable.

WHERE YOU CAN GO FOR MORE INFORMATION… Medicinal Cannabis Council medicinalcannabiscouncil.org.au Therapeutic Goods Administration tga.gov.au MS Research Australia msra.org.au/medicinal-cannabis-ms

Legal medicinal cannabis products can only be accessed via your treating doctor or specialist, MS life and only if they believe medicinal cannabis will be beneficial in the treatment of your MS. MS life

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Get In Touch!

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@msqld @msqld

Visit us…

+ Unit 2, 3-5 McLennan Court, North Lakes + 10 Russell Street, Toowoomba + Varsity Lakes Community Centre – Jim Harris Park, 20 Mattocks Road, Varsity Lakes

Ground floor, 252 Annerley Road, Dutton Park

+ Suite 1, 27 Mount Cotton Road, Capalaba + 10 Bolsover Street, Rockhampton + Units 2-3, 616-638 Lutwyche Road, Lutwyche

+ Bundaberg Enterprise Centre, Suite 9, Corner Quay and Tantitha Street, Bundaberg

Salisbury Road, Boiler House Q Block, + 11 Ground Floor University of Southern

+ Level 1, Clinical Practice Building, James

+ Community Capital Centre, 100 Sportsman

+ Suite 3, Calana Whole Health Group, 600

Queensland, Ipswich Parade, Bokarina

Cook University, Corner of James Cook Drive and Mount Stuart Street, Douglas

MS lifeBruce Highway, Woree

MS life MS life

MS life