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Reconciliation Action

By Jodi Haartsen, Executive Manager, Client Engagement and Wellbeing

At MSL’s World MS Day livestream, I spoke with Associate Professor Tomas Kalincik about the challenges to connection experienced by people living with MS and the ways in which neurologists and researchers are supporting people to overcome them. Here are the key takeaways from our discussion

First with the head, then with the heart” - Bryce Courtenay, The Power of One

This past fiscal year, MSL has been blessed by the generosity of 42 individuals who spoke with their heart and left a statement of their love for people with MS.

For many of us, COVID-19 has increased our feelings of uncertainty and worry, leading us to feel anxious and mentally fatigued. While these are normal feelings to be having during this time, they can increase our mental health risk if left unchecked. That’s where mental fitness – a practical way to build a sense of wellbeing – comes in. Kate Lawrence from Converge International explains how a focus on our mental fitness can help us respond more positively to all that’s happening right now. 

My beautiful Mum suffered with MS for a very long time.  Sadly, she passed in 2012.  I also had a dear friend Row who was only a little older than me who also suffered from MS and sadly she passed also at such a young age leaving behind two small boys.  I have friends with the disease, and it is something I have been very passionate about and involved with for a very long time.  It’s something that is so incredibly close to my heart.

Even if you can't see us face-to-face, our team is still here to support you via telehealth – a safe way to receive a quality service during restrictions. All you need is a phone or computer to access support this way.

Steven Koutsodontis is a Melbourne father of two whose been living with MS for 31 years. He wrote “A Conversation About Multiple Sclerosis with my Family” so his children can better understand why their father can’t do many of the things that other fathers can do. He hopes his book will help other children by providing them with an easy to understand and more positive message about MS.

Multiple sclerosis! This was the announcement that greeted me when I went to see my dear friend Katie. She and her daughter had just returned from a visit to the doctor. We were both devastated at the news.

It was a gut-wrenching day for Allan, Margaret and their family. They’d just found out that Margaret had been diagnosed with MS. For years Margaret had various symptoms, including loss of balance.  As a trained nurse, she understood well what this diagnosis meant.

The good news is that exercise does not make heat sensitivity or fatigue worse and there’s a lot you can do to help mitigate their effects whilst exercising, as Eric Morales, Exercise Physiologist at our MS Gym in Lidcombe NSW, explains

It stands to reason that anxiety is going to be a problem for many people with MS, given the unpredictability of MS in the way that symptoms will affect your everyday life, but there are ways of working through the anxiety that you experience, and you can definitely make it more manageable. Some strategies will take time and effort to put into practice, but like most skills, the more effort you put in, the more successful become your strategies.

After a day of gardening, I was washing my hands at the outdoor tap. Bent at the waist, I realised I couldn’t get back up. I crumbled to the ground, turned to my husband and said, “what if it’s MS?”
 
At this stage, I had no reason to think that. I was working with a physiotherapist to improve my lower back pain, to help with my ‘weird walking.’ I was 32, with a 3-year-old son, my background was in outdoor education, where I led multi-day hikes for a living. I was working as a relief teacher and had just finished owner-building our home.
 
I was going to fix my issues and get back to regular programming.

Three strategies for overcoming your anxiety...

If you've been diagnosed for three years or more and have experienced disease progression or a relapse since your diagnosis, our free Taking Control of your MS Telelink will create a safe space for you to share, support and learn.

We can never underestimate the importance of giving and receiving support from others on a similar journey. Peer support can help you understand a recent diagnosis, manage your symptoms and live well with MS. 

Howard is 86 years old and was diagnosed with MS in 1979.

The Australian Government's National Mental Health Commission identifies pandemic fatigue as a real challenge facing Australians right now.

At MSL's World MS Day livestream, I spoke with Associate Professor Tomas Kalincik about the challenges to connection experienced by people living with MS and ways in which neurologists and researchers are supporting people to overcome them. Here are the key takeaways from our discussion.
 
The role of MS Symptoms on people’s ability to make meaningful connections with others

Being a parent can sometimes feel like being on a rollercoaster, where both rewarding and challenging experiences are encountered in a single breath. Here are some strategies to raising happy children and keeping yourself baanced.

On Friday 14 May 2021, the Rotary Club of Moorabbin in Victoria will be holding its annual Charity Golf Day at the prestigious and world-renowned Kingston Heath Golf Club. 

Successful relationships come down to three basic questions about needs: “What do I need in order to feel loved, happy, fulfilled and secure?” “What do you need to feel the same?” “Are we willing to work towards understanding and meeting each other’s needs?”

Virginia is 56 years old and lives in Canberra with her husband. She works as a business development manager at an interior styling company.

An MS diagnosis or a sudden worsening of symptoms can be stressful both emotionally and financially, especially when we don’t know what options are available. We spoke to Senior Financial Adviser, Nicola Beswick, to explore the role of financial planning in making the most out of our money when life takes an unexpected turn. 

The Dalai Lama once said "My religion is very simple. My religion is kindness" He could have been thinking of people like Jean Fraser.
 

MSCEC-VIC is the voice of the MS Community in Victoria. The Council members are people living with MS and/or carers and family members of people living with MS.

People with MS Victoria provides information and support for, and campaigns on behalf of people living with MS.

Communicating difficult emotions with family members can help build trust, understanding and provide some perspective. Whilst sharing difficult emotions may not always be easy, it's important for family members to try to have these conversations. Here are some simple strategies to help you get started.

Should you tell someone about your MS on your first date, or should you wait till things get more serious? Professor Anneke van der Walt, Neurologist at Alfred Health in Melbourne, discusses dating and MS and when and how to disclose to someone you’re dating.

Wondering how MS impacts pregnancy and fertility? Senior staff specialist in the Department of Neurology and Conjoint Professor at the University of Newcastle Dr Jeanette Lechner-Scott discusses the impact of family planning, hormonal changes and pregnancy on MS.

We have recently conducted a client survey seeking feedback about the resources and activities MSL has delivered through 2020 aimed at helping the MS community be informed and feel supported and connected during COVID-19.

We’re excited to welcome you back to the MS Walk Run + Roll in 2021! Let's walk, run and roll together so no one faces MS alone

ACT Region Newsletter - February 2021

Tasmania Region Newsletter - February 2021

Living and working with MS isn’t always easy. MS symptoms like fatigue, pain and brain fog can make for hurdles in the workplace. A national study conducted in 2019 showed that 64% of people living with multiple sclerosis reported an effect on their employment and their ability to earn an income.

Exercise. It’s something we all know we should do more regularly, but often find it difficult to fit into our daily lives. For people living with MS, these challenges can be even greater. 

MSL’s ACT COVID Safe Guidelines

Management of your MS is a team effort with you in charge. Here are some simple strategies to help you stay in control and get involved in your healthcare plan.

ACT Region Newsletter - December 2020

Tasmania Region Newsletter - December 2020

Allyson Brown, owner of everheal - an online business offering healthy food for people living with autoimmune conditions, was diagnosed with MS in 2005. After intermittently struggling with numerous symptoms over the next 14 years, she was forced to resign from her corporate job in 2018, due to chronic fatigue and brain fog. Feeling like her brain and body would never recover, she decided to change her diet. We spoke to Allyson about her journey with MS and the impact that changing the food she ate had on her MS symptoms.

Being part of a community and connecting with others can positively impact mental health and emotional wellbeing, promoting a sense of purpose, belonging and social connectedness. We asked AFL Wheelchair player for Richmond and person with MS Chris Henderson (Hendo), to share his thoughts on the impact that simply being part of something has had on his personal outlook and wellbeing.

Dancing is a great way to de-stress and feel good. It can also help improve MS symptoms and positively impact emotional health. To unpack the benefits of dance for people with MS, we had a chat with Gwen Korebrits, CEO and Co-Founder of Dance Health Alliance (DHA) - a nonprofit organisation that provides people with the opportunity to regain freedom through movement, and Dr Ameeta Gajjar, medical advisor to DHA.

Have you done the MS Gong Ride before?
Two years ago I trained to do the Gong Ride, but I had some extensions of already existing MS attacks, so I was encouraged by my neurologist not to do the full 82 kilometres, so I did the start, the middle and the end. I think I did around 22 kms of the Gong Ride back then.

Why is it important to preserve brain health? In MS, the science tells us that even though we may not see relapses and disability until later, nerve damage can be accumulating over time. 

Management of your MS is a team effort with you in charge. Here are some simple strategies to help you stay in control and get involved in your healthcare plan.

1 November 2020 - MS & Resilience: What the research tells us
Studies show that building resilience can be beneficial for people with multiple sclerosis When a person is diagnosed with multiple sclerosis, treatment plans often become the immediate and predominant focus

ACT Region Newsletter - November 2020

Tasmania Region Newsletter - November 2020

25 October 2020 - Bright Ideas - Strategies for becoming more resilient 
Ever wondered how it is that some people can face overwhelming life challenges and seemingly bounce back at least as strong, if not stronger than before? Are they just lucky? Were they simply born with a quality that the rest of us missed out on?

From 2–6 October 2021
 
This spectacular fundraising trek will take place in Tasmania’s Wilderness World Heritage Area.
 

Kentucky south is a very small country town in NSW located 21 km from the larger Uralla.  In the 1950’s it only had a post office, a railroad shed and a bus shelter. This is where Lindsay was born. As the third youngest from a family of ten children, Lindsay grew up within a close-knit family group. He especially recalls the affection and closeness of his aunt and uncle.

People with MS – Victoria Spring 2020 Conference will be held on Saturday, 14 November. 

Our organisation wishes to extend its condolences to the family and friends of cricket great Dean Jones, who passed away on Thursday, 24 September after suffering a heart attack in India. He was 59. 

Tasmania Region Newsletter - October 2020

ACT Region Newsletter - October 2020

What motivates you to make art? I love making other people happy through my art. I love their smiles; it brings a smile to my face. Creating and then giving it to others to show my appreciation of them is part of the joy I get from art. I want to be positive; I want people to smile.

As you may know, the MS Gong Ride has been postponed until next year due to COVID-19. So, this year, the Gong Ride is going virtual, which means that not only can you still ride for MS, but you can take part wherever you are. 

Tasmania Region Newsletter - September 2020

If you’re interested in connecting with others in a similar situation to yourself, here are our upcoming Telegroups.

Philanthropist and advocate for people living with MS, Zona Tripp, left an impressive mark on the MS Community.

Celebrating resilience through art   

Joseph Vargetto, Chef, and owner of iconic Melbourne restaurants Mister Bianco and Massi, found out he had MS quite literally by accident - when a bicycle collision with a car caused him to be taken to hospital five years ago, he underwent some tests which revealed his condition. Since then, his dedication to serving others has remained steadfast, even in these uncertain times. We spoke to Joseph about how resilience plays out in his own life, both as a business owner and as a person living with MS.

Dr Sally Shaw is a Melbourne-based psychologist who focuses on supporting people with MS. Sally works with clients to increase their ability to be strategic while moving forward in life, using positive psychological frameworks which centre on building resilience. Here, she shares some practical insights on how we can build our resilience to help us cope with MS as well as any other challenge we may be facing.

Jodi Haartsen and Natalie Francis have both recently joined MSL as executive managers and bring to the organisation a wealth of clinical knowledge and understanding about people living with MS, both having extensive careers in the health sector. We asked Natalie and Jodi about their experiences with resilience and their views on how resilience relates to people living with MS. 

Dr Amy-Lee Sesel is a Psychologist and PhD graduate from the University of Sydney. She has clinical experience treating chronic pain and is deeply committed to this area of health psychology. In 2019, she received a co-funded post-graduate scholarship from MS Research Australia and the NMHRC to develop and evaluate an online mindfulness program for people with MS. We spoke to Amy-Lee about pain management, mindfulness, and practical solutions we can access in order to help build our resilience whilst experiencing pain.

ACT Region Newsletter - August 2020

Tasmania Region Newsletter - August 2020

More than ever, we need to keep connected with each other and share stories and ideas about new ways of doing things to overcome the unprecedented life challenges we are all facing – and our Telelink groups are a great way to feel supported.

ACT Region Newsletter - July 2020

Tasmania Region Newsletter - July 2020

In order to live an active and fulfilling life, people need to remain as physically active as possible. However, this can be challenging for people with ongoing pain as they might find that certain activities can make their pain worse. As a result, they tend to rest more and are less active. While rest can help relieve pain, long periods of rest or inactivity can lead to physical deconditioning – the gradual loss of strength and fitness that comes from reduced activity levels.

Yasmine Gray’s passion for travel and her commitment to helping make travel accessible to all those with a disability led her to apply for an MS Society “Go for Gold Scholarship” in 2014. She successfully applied for funding to allow her to purchase a personal travel scooter and to start a small internet business.

We are pleased to confirm that following the latest advice from government health authorities, MS has decided to resume some of our face-to-face activities from June as described below.

Join our online exercise programs!

In 2014 Jennifer Severn was awarded a Go for Gold Scholarship to engage a life-writing mentor. She'd been writing snippets of her life story for years and wanted to turn them into a book.

Tasmania Region Newsletter - June 2020

ACT Region Newsletter - June 2020

All gifts, big or small can make a difference to the lives of people living with multiple sclerosis.

Connection and empathy are what make our Peer Support Program successful. Our peer support groups create a safe space where participants can share experiences, and give and receive emotional and practical support, helping each other to overcome the challenges of living with multiple sclerosis or caring for someone with the condition.  

Bushfires and COVID-19: Researchers want to hear from you

20 Years of MS Research

Living with Multiple Sclerosis in 2019: The national research findings

Moving forward: Sharing MSL’s Strategic Directions 2020 – 2025

The changing landscape of MS: A neurologist’s point of view

Looking back: What an MS diagnosis meant 20 years ago and what it means today

Media Release: Australia - Japan Information Exchange

My story: One step ahead of MS

Fishing for all abilities

Victoria’s newly expanded Community Engagement Council has hit the ground running, initiating a project to support and better understand the needs of young carers.

Dr Luke Smith, a clinical neuropsychologist with experience in supporting people with MS, discusses the factors that can contribute to a decline in cognitive functioning as well as practical strategies you can implement to improve your cognitive abilities right now.

Top symptom management tips from our Physiotherapist

Supporting the MS community: Australia’s largest trucking firm gives back

MS Go for Gold Scholarships: Helping you achieve your dreams

I choose MSL because multiple sclerosis chose Amanda

Supporting you to successfully navigate the National Disability Insurance Scheme (NDIS)

GoFish Nagambie

The power of love

Finding friendship on unsteady ground

Are you in a current bushfire area?
If you are experiencing wheezing, chest tightness and difficulty breathing you should call triple zero (000). 

Supporting couples to face the challenges of MS together

An innovative approach to managing fatigue

Our NDIS Support Coordination Service reaches a milestone!

Food for thought: Clinical trials on diet in MS