MS CENTRAL DISTRICTS NEWSLETTER APRIL/MAY 2015 Our campaign theme for 2015 is access: access to diagnosis, treatment and support; access to buildings, travel and leisure facilities; and access to education, training and employment. Inside this issue: IMPORTANT DATES TO REMEMBER! WORLD MS Day 27 May, 2015, with an Access Workshop here (see page 7) MS Awareness Week 29th August 5th September, 2015 MS Street Appeal 4th September 2015 DISCLAIMER: THE VIEWS AND EXPRESSED IN THIS NEWSLETTER ARE THOSE OF THE AUTHORS AND NOT NECESSARILY THOSE OF MS CENTRAL DISTRICTS. MS CENTRAL DISTRICTS ACCEPTS NO RESPONSIBILITY FOR THE ACCURACY OF INFORMATION CONTAINED IN THIS NEWSLETTER. President report 2 From the Field Worker 3 Maintenance Therapy Programmes 4 Betaferon Flyer 5 Available to Hire 6 World MS Day - Access Workshop Flyer/H & D Presentation 7 MSCD Committee Profiles 8 Notice Board 9 MSCD Library Books 10 11 Joke Corner & Donations Form 12 13 Regional Roundup, Recipe 14 – 15 Sponsors Flyer 16 Contacts Page 17 MS CENTRAL DISTRICTS NEWSLETTER APRIL/MAY 2015 Page 2 President’s Report... Hi Everyone We had a really good AGM on 21 March 2015 with Dr Dave Baldwin as our guest speaker. Dave is a GP from Bulls and run runs the ‘Bulls Flying Doctor Service’ around the country looking in the main at the health of pilots and people in the rural areas, getting the message across of looking after one’s health. He gave a great humorous (but serious) talk about men’s and women’s health and titled his talk ‘Healthy Bastards!!’ He gives talks around the country on his vision of the health for men and women and really can put the message across about being healthy. I recommend you look at his web site www.flyingdoctor.co.nz The AGM itself produced a re-elected President and Committee with the addition of an external volunteer holding the Treasurers position. Committee members Helen Sutherland Vice President Monica Huisman Secretary Hamish Johansen Treasurer Billie Stanley Committee Stewart Watson Committee Michelle Kitchingman Committee And yours truly – President. I thanked the Committee for all the work they did over the last 12 months and am quite chuffed to work with them again. There is quite a lot to do, a Strategic Plan for the next 2-3 years, a total re vamp of our Health and Safety Policy, World MS Day to name a few. Before we know it the annual appeal day will be on us once again. I do hope we have a good number of volunteers to get out there on the day, let the public be aware and get a better understanding of Fond regards Ian Chadburn President Page 3 MS CENTRAL DISTRICTS NEWSLETTER APR/MAY 2015 From the Field Worker’s Desk… Autumn greetings to you all, I love this time of year, and probably many of you do too - the best season as cooler days and nights kick in, and hopefully some relief for those who suffer from fatigue and other effects of higher temperatures. Recently I was given a handout by a client of a story about what is fatigue called “The Spoon Theory” - it describes very well what MS fatigue is (or any other neurological fatigue). If you want a copy let me know. MS AGM: A good turnout and welcome back to the re-elected Committee; thanks to all who stood again as well those who have resigned. Our speaker Dr Dave Baldwin of “Healthy Bastards” fame, gave us down-to-earth steps about how we can all be responsible for looking after our own health; a serious topic presented very humorously. His book and DVD, Healthy Bastards (book $40, DVD $20) are available to purchase from the office (or borrow from our Library), with a third of the proceeds kindly donated to MS Central. Want to know more about the how the Health & Disability Advocacy Service? Keep Monday 20 April afternoon (1-2pm) free to attend a comprehensive presentation by Maureen Zayer, at the MS Society. She will tell us why we should make complaints if we are not happy with any health or disability service! Attention all Betaferon users: an electronic injector, BETACONNECT, is now available for distribution - designed to make injecting as comfortable as possible, being smaller and more compact, and comes with its own charger and case. If you are interested in changing your old auto-injector for this new model, wander in to the MS Society between 11am - 1pm, Wednesday 6th May. Richard from Bayer will be on hand to do the change over and give instruction on the using the new auto-injector. (See Pg. 7 for Ad.) World MS Day 27 May: We are hosting a workshop to mark this international day which this year has the theme ACCESS. Why access? “The barriers to access faced by people with MS vary depending on their circumstances and what their symptoms are…” Often the focus is negative for there are many examples of barriers to access (to jobs, treatment, rehabilitation, etc) and lack of equality of access. This time we thought we would initially focus on celebrating successful ways people have broken or are breaking down barriers to access and then finish by highlighting barriers that still do exist. We hope as many of you as possible will join us for a morning of discussion and fun at 51 Waldegrave Street on May 27! (More details on Pg. 5) Best wishes to all for now , Philippa MS CENTRAL DISTRICTS NEWSLETTER APR-MAY 2015 Page 4 Maintenance Therapy Programmes MS Central Districts offers Maintenance Therapy programmes for people living with MS and other neurological conditions. The programmes include regular exercise, personal training, art and regional peer support groups. They provide peer support, social interaction, and the opportunity to improve fitness and wellbeing so beneficial for people with MS. Membership of the Society is encouraged to attend the classes, and there is a small charge. Further details are available in Regional Round Up, Pg 14, Yogalates - Tuesdays, gentle workout with Leanne $5/session Art Group - Thursdays at MS Society, with oversight from a local artist Massey personal training programme - weekly sessions at the School of Sport & Exercise with third year Massey students. Contact the MS Office or Field Worker for further information. Regional peer support groups, monthly or bi-monthly (PN, Levin, Pahiatua, Dannevirke, Taihape, Rangitikei, Feilding, Foxton) - Field Worker attends groups bi- monthly. Guest speakers from time to time at some of the meetings if requested. There may be other educational or support opportunities available during the year for people with MS and their support networks which will be advertised in this newsletter and Info Group weekly email. If you wish to have your name added to the Info Group email contact list please let the MS Office know. Other Community-run Classes, Courses and Camps: Living a Healthy Life self-management courses - free courses run by Central PHO. Courses are offered in Palmerston North and other regions throughout the year. For further information call Sharon Barnett 354 9107 x 249 Age Concern Accredited Visitor Service - available for older people at home, call Fern PH 06 355 2832 or email fernbrooking@ageconcern.co.nz Women’s self defence course coming up soon in Palmerston North... KIM PENNY, BIO-DYNAMIC CRANIO-SACRAL THERAPIST I graduated as a Bio-Dynamic Cranio-Sacral (BDCST) Therapist in December 2013, and now offer these services part-time in Palmerston North from my house in Hokowhitu. More information on this form of therapy can be found on the internet, and here is the link to the Pacific Association - http://www.craniosacral.co.nz/ Essentailly BDCST is a gentle, non-invasive, holistic natural therapy that can relieve pain, reduce anxiety, and support the client's system to re-organise and heal. My personal website is www.kimpenny.nz As I understand the effects of MS can be long term, I would like to offer my services to MS sufferers at a discounted rate. My usual rate is $40 for the first session of 40-60 minutes, with all follow up sessions $40 for 40 minutes. For MS sufferers, the initial charge of $40 for the first session (40-60 minutes) will still stand, but for subsequent visits I am prepared to offer a reduced rate of $20 for a session of 30 minutes. Please do not hesitate to be in touch if you would like more information.www.kimpenny.nz Page 5 MS CENTRAL DISTRICTS NEWSLETTER APR-MAY 2015 The next generation Betaferon autoinjector is here “simplicity at your fingertips…” The new electronic autoinjector model is now available Richard Buddle from BAYER will be at the Society to exchange your old autoinjector for this new simple-to-use model and answer all your questions. WHEN: Wednesday May 6th, 11am - 1.00pm WHERE: MS Society, 51 Waldegrave Street If unable to attend this session and would still like to change your autoinjector, please contact the Field Worker MS CENTRAL DISTRICTS NEWSLETTER APR-MAY 2015 Page 6 Available to HIRE from MS Central Districts We have available : Wobble boards Walkers Elbow crutches Manual Wheel Chair Power Chair Wheel chair carriers for your car (you need to have a tow ball) Adjustable walking stick Rubber wedge (for door way) Please talk to either Carolyn or Philippa if you would like to hire any of the above... Ph 06 357 3188 or email us at mmss@inspire.net.nz Newsletter Contributions If you would like to contribute to our local newsletter, please feel free to do so. Let us know about an interesting event, special birthday, milestone anniversary, recipes etc. Any thing you want to sell or buy?... Remember it is your newsletter! Contact the office and let Carolyn know the details. Page 7 MS CENTRAL DISTRICTS NEWSLETTER APR-MAY 2015 World MS Day - Access Workshop An MSIF global initiative Wednesday, 27th May 2015 10.00am - 12.00pm 51 Waldegrave Street, Palmerston North Shared Morning Tea Facilitated by Field Worker, Philippa Russell & Monica Huisman - this workshop is an opportunity for people with MS and their families to gather to celebrate ways we are breaking down barriers to living with MS (and have some fun along the way!). There will be a chance to share how people/ organisations/equipment have improved access for you as well as time to document gaps to access - to diagnosis, treatment and support, education, buildings, employment, transport, equipment…. Hope to see you there! RSVP to the office please Ph. 357 3188 All about access Equality of access doesn’t just mean physical access to buildings, but access to the same tools, services and facilities that people who don’t have MS enjoy. Our campaign theme for 2015 is access: access to diagnosis, treatment and support; access to buildings, travel and leisure facilities; and access to education, training and employment Health & Disability Advocacy Service Presentation Monday 20th April from 1.00pm—2.00pm free to attend a comprehensive presentation by Maureen Zayer Where: at the MS Society. She will tell us why we should make complaints if we are not happy with any health or disability service! Bring along a friend or family member! MS CENTRAL DISTRICTS NEWSLETTER APR-MAY 2015 Page 8 MSCD Committee Members’ Profiles Profile of Helen Sutherland I have had MS for the past 8 years and have been on the MSCD Committee as Vice President for the past year. In my past life I was a nurse for 33 years and the last 20 years working in the Emergency department at the Palmerston North Hospital. I have a good sense of humour and believe in Fair Play. I enjoy Art and I have been a passionate member of the MS Art Group for a number of years. Profile of Hamish Johansen Hi my name is Hamish Johansen. I was born and brought up in Palmerston North. Since completing Secondary school I have gained a Bachelor of Business Studies majoring in Economics. Currently I am in my final year of a Bachelor of Accountancy. I am looking to make a positive contribution to MS Central Districts as Treasurer while gaining some accounting work experience. Profile of Billie Stanley Billie is an Associate at BDO Central Chartered Accountants and Advisors and has fifteen years experience as an Accountant. Billie spends her time working within the Not For Profit industry as well as with commercial clients. Recently Billie has been providing support to charities in order to help them overcome the changes to the new financial reporting standards, she is recognised as an expert in this area locally. Page 9 MS CENTRAL DISTRICTS NEWSLETTER APR-MAY 2015 Notice Board HAVING A PROBLEM WITH A HEALTH OR DISABILITY SERVICE? ll hday to a t ir B y p p Ha who have da celebrate thday! recent bir Know your rights when receiving a Health or Disability service. - Health & Disability Commissioner Ph. 0800 555 050 www.hdc.org.nz Health & Disability Advocacy service Ph. 06 353 7236; 0800 555 050 Condolences Our Sympathy to anyone who may have lost loved ones during the last few months. Some families have requested that donations be made to the society in lieu of flowers. We offer our thanks to all those who have made such contributions as a symbol of their friendship and support. Websites of interest www.ms.org.nz – National website for Multiple Sclerosis – also check out the MSSNZ on Facebook www.facebook.com/mssnz www.msif.org - World MS Federation with up-to-date research news. www.overcomingms.org/ www.mssociety.org.uk www.davidlindsay.co.nz David Lindsay Assisted Wear Design Clothing www.msfatigue.org.nz Central Caring Caller is a service that St John provides for people who live alone or feel a bit lonely. Volunteers phone clients regularly to check that everything is ok. This free service is fully funded by donations. Would you like a Caring Caller? If you’re living alone, or you’re housebound due to illness or disability, you can contact St John about getting a Caring Caller. We try to pair you up with a volunteer whose personality and interests match yours. Caring Callers might not yet be available in your area, but always ask us – we love a challenge. Unlike some services for the elderly, Caring Caller is free of charge. Enquire now on 0800 000 606 http://www.stjohn.org.nz Rehabilitation Medicine Ltd Dr Jurriaan de Groot, Consultant in Rehabilitation Medicine, is now seeing patients in his practice on 600 Main Street, Palmerston North. For information and / or an appointment please phone 06 356 3998 or fax 06 356 2693 or mobile 027 2607 607. Page 10 MS CENTRAL DISTRICTS NEWSLETTER APR-MAY 2015 MS Central Districts Library Books available to be borrowed Books 300 Tips for Making Life Easier with MS A Genius in the Family - Jacqueline du Pre A Guide to Management of MS A Rose to a Sick Friend Awkward Bitch - my life with MS Benjamin - My Mum is Special Beyond Rage Bringing Light to the Dark Broken Open By Appointment Only Complementary & Alternative Medicine for MS Complementary & Alternative Medicine and MS Cooking Well Multiple Sclerosis Coping and Prevailing Coping When a Parent Has MS Coping with Vision Loss Cripin Place Exercise Beats Arthritis Exercises for Multiple Sclerosis Employment Issues and Multple Sclerosis Facing the Challenges of Multiple Sclerosis Fatigue Fatigue in Multiple Sclerosis Fighting Fatigue in Multiple Sclerosis Flying without Wings Funniest DIY Stories Guide to Relaxation Head First Healing Multiple Sclerosis Healthy Bastards How to Talk About MS with Your Children Hysterectomy It's Not All in Your Head Life on Cripple Creek Living with MS Love, Medicine and Miracles Managing Multiple Sclerosis Naturally Me and My Shadow Medikidz Explain Multiple Sclerosis Meeting the Challenges of Progressive MS Mental Sharpening Stones MS and Your Feelings MS: Answers at Your Fingertips Multiple Sclerosis and Having a Baby Multiple Sclerosis For Dummies (2nd edition) Multiple Sclerosis Question and Answer Author/Editor Shelley Peterman Schwartz Hilary and Piers du Pre J H Osborne Tessa Goldhawk Marlo Donati Parmelee Stephan Pohe & Stephanie Lazai Jo Anne LeMaistre Bayer HealthCare Elizabeth Lesser Jan de Vries Lorraine Knightsbridge, MS Taranaki Allen C Bowling Marie-Annick Courtier Tom Bayak Barbara Christall Bill Chapman David Ashton Valerie Sayce and Ian Fraser Brad Hamler, ACSM P D Rumrill, M L Hennessey, S W Nissen Jeffrey N. Gingold Leonie McMahon Lauren B Krupp Nancy A Lowenstein Dr Arnold Beisser Resene Brockhampton Library Norman Cousins Ann Boroch Dr Dave Baldwin Dr Janice Schwartz (MS Society of Canada) Coney and Potter Patricia Farrell, PHD Dean Kramer Dr Robert Shuman Dr Bernie Siegel Judy Graham Carole Mackie Dr Kim Chilman-Blair, Ian Rimmer Coyle and Halper Jeffrey N. Gingold Alison Shadday Drs Roy, Burgess, Mottershead, Talbot Judy Graham R Kalb, B Giesser, K Costello Cont next page... Bethon Ann Hill Page 11 MS CENTRAL DISTRICTS NEWSLETTER APR-MAY 2015 MSCD LIBRARY BOOKS... Multiple Sclerosis the Natural Way Multiple Sclerosis: A New Journey Multiple Stories by MS Society NZ Myelin is getting on my nerves My Pear Tree Has Gone Bananas Overcoming Multiple Sclerosis Peace, Love and Healing Primary Progressive Multiple Sclerosis Push>Play Nation Put Your Bad Back Behind You Recovery from MS Second Opinion Sexual Options for Paraplegics and Tetraplegics Swallowed by a Snake Standing in the Sunshine Staying in Love Taking Control of MS Tap-Dancing's Out Then? The First Year - MS The Image of MS - a photographic exhibition The Liver Cleansing Diet The MS Guide to Complementary and Alternative Medicine The MS Recovery Diet The MS Workbook The Multiple Sclerosis Diet Book The New Health Revolution The New Male Sexuality The Road Back The Source Book for the Disabled The Ultimate Guide to Sex and Disability Towards a United Voice - History of NZ MS Societies Why Pick on Us Women's Waterworks Words of Inspiration for People with MS Yoga and Multiple Sclerosis DVDs, Videos Healthy Bastards (D) Jack Burns Talks on MS (Video) Presentation for MS Auckland (V) Taking Control of Multiple Sclerosis (D) Richard Thomas Dr Richard Senelick MSSNZ MS & PD Society of Canterbury Don Edwards Prof George Jelinek Dr Bernie Siegel Nancy J Holland, Jack S Burks, Diana Schneider R SPARC George Jelinek & Karen Law Phillida Bunkle Thomas Mooney, Theodore Cole, Richard Chilgren Thomas R. Golden Cari Loder Robyn Salisbury Prof George Jelinek Gary Campbell Margaret Blackstone Joyce Tenneson Dr Sandra Cabot Lorraine Knightsbridge, MS Taranaki A D Sawyer, J E Bachrach Fraser, Kraft, Ehde and Johnson Dr Roy Swank and Barbara Brewer Ross Horne Bernie Zilbergeld Harriet Sirof Glorya Hale Miriam Kaufman, Cory Silverberg, Fran Odette Miriam Clark & Ruth Vincent Wyatt and Ellidge Dr Pauline Chiarelli Ellen Stern Loren M Fishman, Eric L Small Dr Dave Baldwin Prof George Jelinek Prof George Jelinek Journals Family Care MS Voice Carers NZ MSSNZ Medical Journals MS in Focus International MS Journal Focus on Multiple Sclerosis MSIF Bayer HealthCare Pharmaceuticals Bayer Australia MS CENTRAL DISTRICTS NEWSLETTER APR-MAY 2015 Page 12 Joke Corner MS Central Districts Subs and Donations A reminder that Subs for 2015 are now due. Donation form is included in this newsletter again for those who have misplaced theirs! If you receive our Newsletter and do not pay subs we would appreciate a small donation – every little bit helps! In case you didn’t know - your subs pay for our Maintenance Therapy Groups, Newsletter, operating expenses of MSCD, Field Worker services and travel costs, Field Worker morning teas, administration costs such as cost of paper, computer consumables, coffee, tea etc. If you are not sure when you last paid, please check with Carolyn in the office. Thank you to those who have paid their subs already! Page 13 MS CENTRAL DISTRICTS NEWSLETTER APR-MAY 2015 Donations Form Carnation House, 51 Waldegrave Street, Palmerston North P O Box 194, Palmerston North Phone 06 357 3188 mmss@inspire.net.nz www.mscentral.org.nz Patron: Iain Lees-Galloway MP Please help us to assist those living with Multiple Sclerosis. Your contributions are greatly appreciated. I would like to subscribe to MS Central Districts ( for Families, I would like to donate $20 $30 $20 per annum for individuals, $25 per annum $200 for Life Membership) $50 $100 Other $___________ Direct Credit donations can be made to Manawatu Multiple Sclerosis Society Westpac Account number: 030726 0484737 00 * (Please make sure you put your NAME as the reference) Mr / Mrs / Miss / Other First Name_______________________________Surname_____________________ Address______________________________________________________________ ____________________________________________________________________ Phone ________________________________Email__________________________ MS Central Districts is a registered Charity and all donations over $5.00 are tax deductible. Please tick if you would like a receipt. Thank you for your generous support. Page 14 MS CENTRAL DISTRICTS NEWSLETTER APR-MAY 2015 Regional Round Up April - May 2015 * indicates Field Worker present at group Call the Office, (06) 357 3188,for any information about a group H&D Advocacy Service Talk: 20 April Betaferon upgrade: 6 May World MS Day 27 May: Access Workshop @ MS Society Palmerston North Yogalates Art Group 10.30am MS Gathering Tuesdays @ 10am MS Society Thursdays @ MS Society @ 5.30 pm Thurs 23 April * MS Society Otaki Lunch Group @ 11.30am Mon 13 April * Mon 11 May Café Ra Dannevirke Café Group @ 11am Thurs 9 April * Red Sun Cafe Dannevirke Foxton Afternoon Group @ 2.30 pm Wed 8 April * Wed 6 May At Windmill Cafe Rangitikei Lunch Group @ 12 noon Thurs 2 April * Thurs 7 May Sugar Plum Café SH 1, Marton Taihape Cuppa Health & Disability Advocacy Service talk * Wed 20 April 1-2pm, MS Society @ 10.30am Date TBC 3 Goldfinch St Betaferon Rep. visit Wed 6 May * Bring your old auto-injector, 11am - 1pm swap for electronic model MS Society AREA CONTACTS World MS Day: Access Workshop Shared Morning Tea Wed 27 May * 10am - noon MS Society @ 12 noon Wed 15 April Wed 20 May * Murray’s Irish Bar 78 Fergusson St Levin Coffee Group Shared food Pahiatua Lunch Group Sherryl Gray ………………………………....(06) 364 6267 LEVIN: Feilding Lunch $10 lunch menu OTAKI: Maree Mander ………………………....….(06) 368 8945 PAHIATUA: Adrienne Wake…………….…….………...(06) 376 7411 DANNEVIRKE: MSCD Office …………………………….....(06) 357 3188 TAIHAPE: @ 10.30 am Wed 22 April * Wed 27 May TBC Horo Health Centre John Woodill……………………………...…(06) 388 1167 RANGITIKEI: Anne Lusher…………………..………………(06) 327 6076 FEILDING: @ 11am Tues 19 May * 15 Victoria St Pahiatua MSCD Office …………..…………………...(06) 357 3188 Page 15 MS CENTRAL DISTRICTS NEWSLETTER APR-MAY 2015 Recipe Oatmeal Snacking Cake 1 2/3 Cups Four 3/4 cup Sugar (white or brown) 3/4 cup Oats 1/2 cup Raisins (optional for extra sweetness) 1 tsp Baking Soda 1/2 teaspoon Salt 1 tsp Allspice or Cinnamon 1 cup Water 2 Tbsp Golden Syrup (molasses or pancake syrup) 1/3 cup Oil 1 tsp Vinegar Mix all ingredients together and bake in 9 inch pan, 180 degrees for 25-30 minutes. Kindly donated by Gay Dornbusch Manawatu Multiple Sclerosis Charitable Trust The object of the Manawatu Multiple Sclerosis Charitable Trust is to provide funding to members of MS Central Districts. The Trust endeavours to support all applications for assistance from people with MS and their families. For further information, contact your Field Worker on any of the following: Ph. 06 357 3188; 027 655 8573 or mmss@inspire.net.nz or The Secretary/Treasurer, MS Trust, PO Box 194, Palmerston North 4440; jillybroom@xtra.co.nz Page 16 MS CENTRAL DISTRICTS NEWSLETTER APR-MAY 2015 Thank you to our sponsors and supporters Thomas Richard Moore Trust JBS Dudding Trust JOHN LEADER ELECTRICAL E-mail info@mobilitymanawatu.co.nz Web www.mobilitymanawatu.co.nz Phone 0800 882 884 Enhancing lifestyles by providing personal and mobility aids so you or your loved ones can stay independent with dignity and confidence MS CENTRAL DISTRICTS NEWSLETTER APR-MAY 2015 Page 17 MSCD Contacts Field Worker— Philippa Russell Ph 06 357 3188 Cell 027 655 8573 Email: philippammss@inspire.net.nz Philippa is available Monday to Thursdays from 9.00am - 5.00pm MS Central Districts, P O Box 194, Palmerston North 4440 • Phone 06 357 3188 • Fax 06 357 3072 • Email: mmss@inspire.net.nz • Website: www.mscentral.org.nz MSCD Committee members President: Ian Chadburn Vice President: Helen Sutherland Secretary: Monica Huisman Treasurer: Hamish Johansen Committee Members: Michelle Kitchingman, Stewart Watson, Billie Stanley, Patron: Iain Lees-Galloway MP Office Administrator / Newsletter: Carolyn Soane Together we’re #strongerthanMS
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