Update Newsletter - Autumn 2013

MS Tasmania and MStranslate CollaborationMS Tasmania is excited to announce that over the coming month we will be showcasing a new trial of research content designed to bridge the gap between the MS community and the MS research community. This content will be written and provided by MStranslate, a new initiative co-founded by two brothers based in Melbourne. One of them, Brett Drummond, comes to us with a wealth of experience in MS research, having spent the past 8 years working on a variety of MS projects throughout his time at the University of Melbourne. These projects started during his time as an undergraduate student doing his Bachelor of Biomedical Science, and then formed the basis of his postgraduate studies (a Bachelor of Science (Hons) and a PhD). His Honours work was supported by a Multiple Sclerosis Research Australia (MSRA) summer scholarship and this relationship was extended when he was awarded an MSRA/Macquarie Bank Postgraduate Scholarship for his PhD project. Coming to the completion of his PhD, Brett has committed himself to bringing this research to the people it really effects, the MS community. For him, “keeping people with MS informed, engaged and excited about MS research worldwide is crucial to develop an environment where progress is being driven as quickly as possible to find answers about this life-changing condition.Over the coming month, we will be posting a number of explanatory articles on various issues within the field of MS. These will include easy to understand summaries of recently published research articles, reviews on current alternative therapies (eg. stem cells, CCSVI, Vitamin D), news stories from around the world and information about current research progress (both nationally and internationally). However, we here at MS Tasmania believe that

MS Update Autumn 2013

Inside this issueMS Tasmania and MStranslate Collaboration 1

CEO’s Column 2

Counselling Corner 4

Multiple Steps Forward Update 6

MS Events Update 7

providing the content is only half the story. We are highly enthusiastic about this trial and we hope you are too! With that in mind, we are looking for as many questions, comments and feedback as you can provide. Brett, through MStranslate, will be actively participating on our social media throughout the month and will be readily available to answer any queries that you may have. MStranslate will also tailor content according to what you are interested in, so become active and get posting to receive answers and information about what you are interested in!The first summary piece will be posted soon regarding the use of stem cells as a treatment for MS! Stay tuned!

MS Update Autumn 2013 1

Right: Brett Drummond presenting some of his PhD work at the international Multiple Sclerosis Keystone Conference in Santa Fe, New Mexico

Above: Brett Drummond being awarded his MSRA/Macquarie Bank Postgraduate Scholarship by Australian of the Year, Simon McKeon


CEO’s Column

Welcome to the autumn edition of our Update newsletter.

The team at MS Tasmania have had a busy start to the year. As well as continuing to work on the National Disability Insurance Scheme (NDIS), Mary and the Client Services team have also delivered the Research Aids and Equipment Forum in Hobart and the Events Management team have developed the 2013 calendar of fundraising events (see page 7). As everyone knows not-for-profit organisations are operating in a tough economic environment. For MS Tasmania, this means that we are continually looking at ways to improve our services to you, our clients, and for opportunities to streamline our internal systems thereby reducing costs.

One of the ways that we can improve our service to you is to improve the speed with which we get information to you e.g. news releases, NDIS information, MStranslate, the latest research news, MS Tasmania events and forums etc by using available technology.

If you have an email address we are asking for your support. By providing us with your email address and authorisation for us to contact you via email rather than by post, you will help us to both improve the speed with which you receive information and help us to reduce costs.

We won’t send you large attachments though. Our emails are brief and provide you with the link to the relevant information - normally located on our website.

We’re also investigating systems where text’s can be sent from our systems to mobile phones with reminders of events etc. So if you would be willing to receive reminders by text when this system comes online, please

include your mobile phone number as well.

If you do have an email address and/or mobile phone and want to help us to communicate with you more effectively and efficiently, please email us at [email protected] (don’t forget to include your full name as email addresses are often different!) and Sue Anderson, our Administration Officer, will respond notifying you that we’ve received your email and will update your details.

If you have a Facebook page, don’t forget to like us at /MSEventsTasmania and /MSTasmania. There is lots of information posted on our Facebook pages about both the latest developments and progress of the NDIS, MS Research and also our local up and coming events and fundraising campaigns!

Thank you for your support!

Dale Eastley

Research, Aids and Equipment ForumOn 14th February 2013, the MS Society held a Research, Aids and Equipment Forum in Glenorchy, generously sponsored by Bayer Schering Pharma. The Forum was a great success. The Forum aimed to provide people with MS and their families with information about moving towards self-management, by acquiring up-to-date and relevant information about current and future research including clinical trials in Tasmania, and also to provide information about and practical experience of assistive aids and equipment.All registered clients of MS Tasmania and their families were invited to attend the forum, which was provided at no charge to the participants. Seventy people registered to attend with 60 attending the forum. There was a demonstrated interest in the Forum’s research focus. Of those in attendance on the day, 41 people completed the evaluation form. The feedback on the day was overwhelmingly positive with 97% of the participants saying that they would recommend the Forum to others. The responses relating to each individual presenter were also very positive, with participants indicating a high level of satisfaction with the content and presentation style of every session.Thank you to all presenters, Professor Bruce Taylor, Dr Steve Simpson JR, Dr Ingrid van der Mei, Sue Mc Gregor and Virginia McCann who gave their time to prepare presentations and shared their knowledge and expertise with us. Tasmania is very fortunate to have such dedicated researchers. We wish to acknowledge the work of the Menzies Research Institute of Tasmania as it continues to conduct world class medical research to improve the health and well being of those living with MS.

Our MS Specialist NursesOur MS nurses provide comprehensive support for people on MS therapies including but not limited to:• Information about all available therapies• Education and training on self injection techniques• Side effect and site reaction management• Follow up and support in regards to ongoing

treatment• Provision of immunotherapy equipment• Advice on travelling with therapies and equipment• Advice on needle disposalOur nurses have received specialised training and are accredited on all current prescribed MS therapies, and they also continually attend educational and training opportunities to keep up to date with all clinical management of MS. So even if you aren’t on any prescribed MS treatment, our nurses can support you in the clinical aspects and symptom management of your MS.Our nurses can also be available to liaise with your GP and other appropriate medical professionals, such as physios, occupational therapists, dieticians and so on. Further, our nurses can visit you in hospital where and when possible to provide support and information.

Accessing the MS ClinicReferrals from your GP are required to attend the MS Clinic. Our MS Society nurses attend the specialist MS Clinic which is part of the RHH Outpatients Clinics. The MS Clinic operates weekly with consultant neurologists and access to allied health staff.The MS nurses can assist in scheduling appointments, and can assist you to access other health providers via the clinic if required – such as occupational therapy, physiotherapy for example.Our nurses can also provide you with information for the referral pathways to other Neurologists aside from the MS Clinic based in Hobart. If you do access other Neurologists, please be assured that our nurses will provide you with support and information with the ongoing management of your MS.Please contact a member of client services staff if you have any queries in regards to clinical support.For information and support phone:Hobart office on 6220 1111Launceston office on 6343 1240



Counselling Corner For PartnersMultiple Sclerosis affects each individual differently. With the age of onset ranging from 20 – 50 years, MS affects people during their most productive years. Often referred to as the ‘uninvited guest’ MS arrives at the door and never goes home – affecting every relationship, every activity and every aspect of a couple’s life.

Changes in Relationships When Care-givingCaregiver wellness is something that doesn’t get acknowledged or discussed very often. One study suggests that approximately one quarter of people who have MS need support with their daily activities or personal care. Most of this care comes from spouses. Care giving can affect couple relationships in a variety of ways. A couple’s partnership may shift gradually into a caregiver/patient relationship, making it very difficult on both people. There may be a gradual erosion of communication which can cause anxiety, guilt, frustration or resentment. Changes can occur in the sexual relationship whereby sexual intimacy is gradually replaced by the unwanted intimacy of care giving activities. Some partners may even engage in a contest over who “has it worse,” the person with MS or the caregiver who is living with a disease that isn’t theirs.When asked about their role, some partners say it can be confusing finding it difficult to separate their role as a caregiver from their role as a spouse, lover, or friend. They expect their involvement to have a positive effect on the health and happiness of their loved one and this may be unrealistic for individuals who are living with the progression of MS. Many caregivers can experience significant stress and burnout.

Caregiver BurnoutCaregiver burnout is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude from positive and caring--to negative and unconcerned. Burnout can occur when caregivers don’t get enough needed support or they try to do more than what they are able to do – physically, mentally, or financially.Most caregivers are unable to recognise when they are experiencing burnout and may eventually get to the point where they cannot function effectively. This

may lead to difficulties and possible neglect in even the most loving couples. Burnout doesn’t happen all at once, it happens in stages, or so-called “phases.”Phase I: The caregiver goes through a “honeymoon” period. They enter the caregiver relationship with idealism and have an eagerness to do well and make changes. But, after 16-18 months the situation becomes more routine and unexpected disappointments can and do occur.Phase II: Caregivers may have decreased motivation and become less efficient, putting in more hours, but with poor effort and outcome. They may even voice complaints about care giving efforts and their role as a caregiver.Phase III: Caregivers experience more serious problems, including chronic physical, mental, and behavioural symptoms. Physical signs can include changes in sleep patterns or appetite, illness, physical exhaustion, and loss of interest in activities previously enjoyed. Mental signs can include depression, emotional exhaustion, withdrawal, anxiety, frustration, and resentment. If these symptoms develop, help should be sought.

Caregiver StrategiesThere are strategies that a caregiver can use to help facilitate the development of a care partnership in which the needs of both partners are met. Attend to your own health and emotional needs by eating right and getting plenty of exercise and sleep. Be patient with yourself and your loved one. Keep your own identity by taking breaks and allowing time to get away and do your own thing. Facilitate efforts to communicate openly and problem solve jointly. Make your home environment as user friendly and accessible as possible. Take advantage of all assistive technology, it can make life so much easier. Also take advantage of support groups.The MS Society provides a variety of Support Groups throughout the state, where partners are welcome and can meet to gain information and provide support for each other.Sources:

Susan K. Johnson, RN, BSN Neuropsychology Portland, Oregonhttp://neurology2.ucsf.edu/msc/psychology.htm

The Multiple Sclerosis Society of Tasmania, 2009 Living with MS Live fully, laugh often, love always A resource for couples living with MS

As you face the challenges of living with, or supporting someone with MS, remember to spend time each day nourishing yourself.

www.mstas.org.auClick on the NDIS button to go to the latest MS Australia NDIS updates page ORUseful links bottom left hand side – National Disability Insurance Scheme to go to the NDIS homepage

Contact the MS Society to find out about Partner Support in your area.Some comments from partners attending an After Hours for Partners group in the south:

“The partner’s group allows me to get away from the discussion on MS and just focus on chatting with others”

“Allows me to talk about issues without my partner present”

“Difficult to discuss how I am feeling with a friend or family member who really don’t understand”

“When I’m tired and I can’t fit it in [attending Partner’s meeting] I still go because I need it for me”

“Partner’s group is my MS training”

1. Rejuvenate your spirits: soak in a hot tub, curl up with a good book, watch a beautiful sunrise. Solitude provides a chance to rebuild inner harmony.

2. Don’t become isolated from friends as you add care and support to an already busy schedule. Maintain contact with them even if you’re not able to spend as much physical time together.

3. Guilt is the most prevalent emotion of caregivers who worry that they’re not good enough. Remind yourself that you’re doing what you can, given the realities of your life situation.

4. Let go of your negative feelings. At times you may be feeling angry, resentful, or afraid of what’s to come. Acknowledge these universal and normal

reactions as you work through them.

5. Find others in like situations where you can gain emotional support and share ideas.

6. Feel more positive by practicing relaxation or meditation. Think about three pleasant things that happened each day.

7. Allow yourself the gift of laughter – rent a funny movie, find humor in daily life, or spend time with those who make you happy. Studies have shown that laughter triggers the release of endorphins and a positive mood helps you make better decisions.

8. Discover your personal stress relievers in order to avoid burnout and brighten your outlook. Explore new interests or develop your creative talent. Commit to an activity as often as possible that will get you outside of yourself– hiking, yoga, biking.

9. Ask for what you need from professionals and family. You don’t have to do everything yourself. Talk openly and honestly about how you feel and encourage others to pitch in and do their share. Develop firm boundaries to protect yourself as you handle your family in flux.

10. Give yourself credit for all you do. Accept and integrate the compliments that others give you.

Let yourself enjoy the gratitude and love that others express for you

Adapted from Balance Yourself Every Day by Sandwiched Boomers , 2008



Multiple Steps Forward Update

Mail: MSF c/- MS Society of Tasmania 15 Princes St Sandy Bay TAS 7005

MSF Spokesperson Rhoda Gill Email: [email protected] Phone: 03 6278 7334 Mobile: 0414 402 091

Contact Multiple Steps Forward

Here we are at the beginning of 2013 and already things have been happening. We are looking forward to a busy year dealing with the concerns, problems and ideas that are raised by people with MS their carers and those interested.• Community access: The list of useful contacts in

every Council has now been moved to a link on the front page of the MS Tasmania website www.mstas.org.au - check it out.

• Access to councils: To ensure that we have a voice in making sure that councils are responsive to our needs, we have made some headway on having an MS person on councils’ Community Access Groups. Lynda Hanlon has been the representative on the Hobart City Council for some time, Sean O’Moore is about to start as a representative at Glenorchy Council, as is Shirley Anderson at Clarence. Rhoda Gill is pursuing the possibility of representation at Kingborough and Huon Valley. People are encouraged to try to have a voice on councils’ Community Access Groups

• NDIS: We are extremely appreciative of the fact that Dale Eastley, our CEO keeps us up-to-date on the progress on this extremely important initiative. Both MS Tasmania and Australia have cooperated as part of the Neuro-Muscular Alliance. Four submissions have been put forward highlighting: how to think about and treat people from a practical perspective - what implications there are in dealing with people; making choices; the costings; and once in, in forever, unless entering aged care. [The MS Society has placed a NDIS button on our website as advertised earlier in this Newsletter. Click on the NDIS button to be connected to the latest information from the MSA website. In ‘Useful

Links’ further down the page, click on the National Disability Insurance Scheme to be connected to the official NDIS website.]

• At the February meeting, Dale Eastley informed us about their Rural Health submission initiative which, if successful, will potentially allow the Society to provide outreach services to the NW and Flinders over the next three years. He also presented the first of the quarterly reports on Vitamin D Study, outlined future research and spoke on initiatives to better the lives of people with MS.

• We have taken on board two initiatives this year, the success of which depends on input from our group but also of everyone who has MS, their carers and those interested. This stems from our belief that people want to be involved in activities of the MS Society because there is power in contributing.

• We are seeking any ideas for fundraising that people might have or wish to organise. Two years ago the Eastern Shore Support Group ran a very successful Readathon for adult’s effort raising over $1,000.

• The second is to encourage everyone to become a member of the MS Society. Membership is $30 a year and membership forms are available on request from the MS Society. Unless you enrol you are not a member and therefore you are simply a passive recipient of services. We would encourage people to become involved either through membership or fundraising or both.

Rhoda Gill MSF Spokesperson


MS Events Update After an overflowing brainstorm that is bursting at the seams we have to share with you the exciting plans ahead for MS Events 2013. With a break in time to muster thoughts and suggestions in what to action and what to research for the year ahead, we have many wonderful items in motion to bring to you an array of events for all ages. We have had a change in fundraising software and welcome you to Every Day Hero – a user friendly software for our supporters. The line up for 2013 is out: MS Mud Dash in North and South, MS Swimathon North and South, MS Readathon (we are working on introducing a little friend for everyone!), MS Melbourne Cup, MS Three Peaks Sweep over the Easter break and a celebration for the month of May for Kiss Goodbye. It is with great enthusiasm that we are attending Agfest Field Days, May 2nd, 3rd and 4th, in the Trades Expo Feature, to showcase the MS Society of Tasmania, supplying information as well as information for all upcoming events. We are on site # CWA 12-5 come and see us! Look forward to sharing all the exciting MS Events details with you shortly,Until next edition,Kate Coad Events Management Coordinator

Events Calendar OutlineComing to venues near you!29th March MS Three Peaks Sweep (see our

Facebook pages)

2nd-4th May MS “see us @ Agfest”!

18th May MS Swimathon (Southern)

29th May WORLD MS DAY events TBA

May “Kiss Goodbye to MS” Month

MS Mud Dash (Southern) – Venue and date TBA

15th June MS Swimathon (Northern)

July-October MS Readathon

12th October MS Mud Dash, (Northern) Fulton Park, Forth

5th November MS Melbourne Cup @ MONA

Mother’s Day Raffle now on sale online at www. mstas.org.au $25,000 in prizes Tickets $2.50 each in a book of 10 for $25.00

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Follow us onlineRaffle available online from www.mstas.org.au

FACEBOOK /MSEventsTasmania and /MSTasmania

YouTube www.youtube.com/mstasmania1

Main North & North-West Support Groups Enquiries: 6343 1240Launceston Support Group Meets the 2nd Thursday each month at the Branch Community Centre next door to the MS Society Office (opposite the bowling alley). 18/2 Innocent Street, Kings Meadows Time: 11am to 1pm

Ulverstone Support Group Meets the 4th Wednesday each month at the Ulverstone Surf Life Saving Club, Beach Road, Ulverstone (Lift access is available) Time: 11am to 2pm

Circular Head Support Group Meets the 1st Monday of each month at Circular Head Rural Health Services Inc 68 Emmett Street, Smithton Time: 7.30pm Contact Jenny on 6452 1594

Southern Support Groups Enquiries: 6220 1111Eastern Shore Support Group Meets the 2nd Friday each month at Bellerive Yacht Club (entrance to function room off lower car park). Time: 10.30 am to 12 noon

MS After Hours Open – VENUE CONFIRMED Meets: bi-monthly first Thursday of the month Venue: Magnolia 73 Café 73 Main Rd, Moonah Time: 5.30pm - 7pm Cost: $10 per person for light food and hot drinks Must RSVP before attending for numbers Contact: Sharon: [email protected] or : Darren: [email protected]

MS After Hours FOR PARTNERS Meets: bi-monthly first Thursday of the month Venue: MS Society 15 Princes St 1st floor (use lift) Counselling Room Time: 5.30 – 7pm Please bring a little food to share with the group RSVP: Sharon: [email protected] or : Darren: [email protected]

Men Living with MS Southern Tasmania Support Group Meets: Monthly, last Thursday of the month Venue: MS Society Sandy Bay office and selected venues for lunch Time: 11am – 12.30pm (office), 12pm – 2pm (lunch) Contact: Darren: [email protected]

Note: Some days might change due to public holidays (please check your calendar).

Head OfficeHobart 15 Princes Street Sandy Bay TAS 7005 Tel: 03 6220 1111

Northern Regional Office 18/2 Innocent Street Kings Meadows TAS 7250 Tel: 03 6343 1240

Freecall Statewide 1800 676 721

www.mstas.org.au

Update Newsletter - Autumn 2013

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