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June 2017
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Hello and welcome to June’s edition of Vitality.
In this edition, we learn more about the medications that are being reviewed for inclusion on the PBS and potential new treatments for progressive MS.
Then, learn about the MS research work investigating exercise and balance that you could be involved in.
Find out more about the new MSWA massage services in Manjimup and RSVP for the MSWA meditation classes being held around Perth.
With World MS Day having just gone by, head to the World MS Day website to read more about the MS tips people from around the world have shared.
Until the next Vitality, take care!
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Here we bring you brief summaries on research updates found online from all around the world.
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Ocrelizumab and Copaxone, medications for relapsing MS and early MS, are being considered for inclusion on the Pharmaceutical Benefits Scheme (PBS). The PBAC, an independent expert body made up of doctors, health professionals, health economists and consumer representatives, reviews medications and makes recommendations to the Government on which medications should be subsidised via the PBS. The PBAC invites members of the public and professional bodies to provide their comments on Ocrelizumab and Copaxone. All submissions must be made by 7 June via the online form here. Read more on the medications here. Source: MSRA
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Re-purposing for progressive MS – A new trial on Simvastatin
A large-scale phase 3 trial is investigating whether a common and inexpensive cholesterol-lowering drug (Simvastatin) could be effective in slowing down the progression of MS. The trial is a global collaboration involving 1,000 people with MS worldwide. The potential re purposing of cheaper, proven therapies could lead to getting potential drugs to help people in a much faster timeline. Read more about the trial here. Source: MSRA
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Despite people living with MS being more likely to suffer from depression, especially when newly diagnosed, there are only a few treatments designed specifically for depression in people with MS. Researchers from University of Melbourne are conducting a trial comparing two different therapies to address this. One is a cognitive behavioural therapy while the other is a supportive listening therapy. While both are talk therapies the former helps individuals learn skills about thinking and behaviours while the latter involves talking about your problems. To find out more about these trials, click here. Source: MSRA
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Tysabri improves mental outlook for patients with secondary progressive MS
After a Tysabri trial found a significant positive effect on the mental and physical health-related quality of life with people with RRMS, a second trial was held to see if Tysabri would have the same effect for people with secondary progressive MS (SPMS). Patients took the drug for almost two years and it was found long-term therapy with Tysabri significantly improved the mental state of people with SPMS. Read more here. Source: Multiple Sclerosis News Today
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There is very little evidence to suggest who can safely stop taking disease modifying drugs (DMDs). An American study has compared the experiences of people who stopped taking DMDs - those advised to stop and those who chose to stop. 12% of those in advised group and 59% of those in chose group had recurrence of MS activity, within two years of stopping treatment. The investigator reported that while it may be safe to stop DMDs in older people who have been free of MS activity for at least two years, younger people with relapsing remitting MS choosing to stop their DMD have a 60% likelihood of further MS activity, underlining the importance of continuing with treatment for this group. Read more here. Source:
MS Trust
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Manjimup massage therapy
MSWA is pleased to announce that massage therapy services are now offered in the Manjimup/Pemberton region.
The massage services started on 29 May and will be available Mondays from 9am – 1pm, fortnightly at the Rose Centre, 12 Brockman St, Manjimup.
The next session will be held on 12 June. For more information and to make a booking, please contact Clare Boenke on 0437 165 715.
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Mindfulness Meditation
Join the growing number of people who are enjoying the many benefits from practicing mindfulness.
Mindful meditation will allow you to:
• Replenish and nourish yourself
• Increase focus and awareness
• Experience deep rest
• Gain awareness of the mind-body connection
• Explore the heart of self compassion
Sessions will include a combination of guided meditations, relaxation and mindfulness techniques. The classes are suitable for beginners and those who wish to deepen their current practice. Partners and significant others are welcome. Cost is a gold coin donation. All sessions will be held from 10am – 12pm.
Dates and locations
Rockingham – June 1, August 31, October 16
Armadale – July 20, September 7, November 2
Currambine – July 20, September 21, November 16
Mirrabooka – June 15, August 17, October 19
Registration is essential! Please RSVP to Sarah Lorrimar at sarah.lorrimar@mswa.org.au or on 9365 4858 indicating which session you would like to attend. Someone from MSWA will contact you to confirm your attendance.
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Focus on Ability - Short Film Festival 2017
This short film festival encourages the community to become more aware of the ability of people with a disability.
All you have to do to participate is submit a short film or documentary with an ability/disability theme. Entries cannot be over five minutes long and must be submitted by Friday, June 30 2017.
There are over $140,000 worth of cash and prizes to be won. Click here to submit your entry or find out more.
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Research study opportunity: Why not exercise?
Are you interested in sharing your views about attendance in exercise programs? The School of Psychology and Exercise Science at Murdoch University are looking for people with MS over 18 who would like to be part of an interview study. They are interested in hearing your views about what factors support your attendance in exercise programs and help you stay engaged over time. This will require a 30 to 60 min interview session led by a researcher from Murdoch University.
During the study, you will:
• Complete a brief questionnaire about yourself
• Participate in an interview with a researcher and answer questions about what is helpful for someone with MS to be able to exercise regularly
• Receive a printed copy of the interview for possible feedback and further comments
You will receive a summary of the findings at the end of the study. If you are interested in participating, please contact Dr Yvonne Learmonth on y.learmonth@murdoch.edu.au or on 9360 6373
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MSWA funded clinical trial opportunity: Enhancing balance and gait in patients with multiple sclerosis
This study aims to evaluate whether combining brain stimulation (transcranial direct current stimulation – tDCS) with balance therapy will improve mobility and independence among MS patients with balance and/or walking impairment.
If you are interested in participating in this study, you will attend two weekly sessions of balance therapy for six weeks (12 sessions, each about 90 mins). Half of the group of participants will receive the brain stimulation (tDCS) and the other half will receive sham brain stimulation prior to balance therapy. To date there have been no adverse effects associated with tDCS.
To participate in this study, you need to:
• Be >18 years of age.
• Have definite relapsing-remitting or a progressive form of multiple sclerosis.
• Have mild to moderate balance impairment (including falls), though able to walk >20m without a walking aid.
If you would like to participate in this research or have any questions about the study you may contact Jesse Dixon at jesse.dixon@health.wa.gov.au or Jenny Eisenhauer at jenny.eisenhauer@uwa.edu.au or give them a call at the WANRI clinic on 6457 3966.
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Combatting cognitive issues in MS
Theresa Burke has been a Clinical Nurse Consultant in MS for over 10 years and understands well the impact cognitive issues can have on people living with MS. In this article, she shares resources and tips on combatting common cognitive issues such as memory, concentration, decision making and the way information is processed. Read more here.
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World MS Day 2017
The theme for this year’s World MS Day on May 31 was #LifewithMS. Throughout the month of May, people were encouraged to share their tips for living well with MS. MSA National Advocate Mike Welsh was part of the campaign and shared his strategy of “any two of three” for managing fatigue. Watch Mike’s story here. To view stories and tips from around the world, head to the World MS Day website.
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