InKIA NOHO TATATouch Inclusive | Inspiring | Informative Winter 21 Issue 110 Now, that's a great idea! Gadgets that members say make their lives better
All aboard Discovering the North Island's hidden by-ways aboard the Northern Explorer
Rolling through 2021 Alisha is living her best life on and off the boccia court
Pathway to home Daniel finds new freedom in a simple concrete path Contents
PO Box 12063, Penrose, Auckland 1642, New Zealand. FEATURES Freephone 0800 800 337 NZ Phone: (09) 815 0247 International prefix (00649)
Editor: MDANZ National Support Office [email protected] 8 0800 800 337 Now, that’s Design: The Artset [email protected] a great idea! Insta/facebook: @theartset Gadgets and products that members Contributions: We welcome say make their lives better. contributions, comments and letters to the editor. We thank all contributors to this edition.
Subscriptions: In Touch is available free to people with neuromuscular conditions, their families, health and education professionals and other 14 interested people. Pathway to home Advertising: In Touch welcomes advertising enquiries. For a rate card, Trepidation turns to freedom please contact the MDANZ office. and equal opportunities.
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The opinions and views expressed in this magazine are not necessarily those of the Muscular Dystrophy Association. 16
All material in this magazine is All aboard copyright. You must therefore contact Exploring hidden by-ways on the editor for permission before copying or reproducing any of it. board the Northern Explorer.
Charities Commission Registration: CC31123 ISSN 1179-2116
MDANZ would like to thank Nick Lingard the following supporters: Foundation Winter 2021 | Volume 110
REGULAR FEATURES cont... YOUR CONDITION IN REVIEW 2 Kōrero with Mike From the desk of the Chairperson. 22 Becker muscular dystrophy Complications can be MDANZ NEWS minimised by adhering to a 3 AGM update 2021 management programme. Introducing the national 18 Rolling through 2021 council’s newest members. Alisha is living her best life on, and off, the boccia court. 4 The benefits of gaming Gaming started out as a way to preserve Scott’s hand function TECH REPORT and turned into a 17-year hobby. 20 Information pathways 5 A cup of tea and and Covid-19 24 Accepting support a catch up with… The benefits of creating from family and friends Ross Paterson. mind maps to share online Paralympian, Tim Dempsey information. 6 Charitable giving focuses on what he can do, without cheques not what he can’t. There are plenty of other ways donors can continue supporting CLINICAL people with MD. PERSPECTIVES
7 Disability support 26 Diagnostic testing for issues are not solely neurogenetic disorders health issues 21 Creating accessible A genetics specialist answers An update on the work solutions our questions about how the of the Disabled People’s Disability is no longer a genetic testing regime works Organisations Coalition. barrier when it comes to in New Zealand. using technology.
We would also like to acknowledge our corporate sponsors: Also thanks to the ANZ Bank Staff Fund, ARA Lodge No 348 IC Charitable Trust, NZ Post Community Post, One Foundation, Richdale Charitable Trust and the Independent Living Service for their continuing support. From the desk of the Chairperson
Kōrero with Mike
Accessible transport is a hot topic.
Kia hora te marino, Kia whakapapa pounamu te moana, Persons Assembly, with transport consultancy MRCagney, Hei huarahi e te rangi nei, Aroha atu aroha mai, Tatou i a conducted research on behalf of Waka Kotahi, NZ tatou katoa, Hue e Taiki e. Transport Agency. May peace be widespread, May the sea be like greenstone, Hopefully as many members as possible were able to A pathway for us all this day, Let us show respect for each attend the in-person or online workshops. This discussion other, For one another, Bind us all together. can only aid decision makers in striving to make an Mornings are notably cooler (especially for those further even greater difference for those with conditions and south). Like me, most with conditions will be feeling it and impairments on this very important issue. For some it need to take extra care, and to keep warm. is about well-being and having the ability to socialise. For others, its simply getting to the supermarket or the The Covid-19 vaccination process is underway in chemist. In line with UNCRPD principles, it’s all about New Zealand and there are various places where you inclusion, acceptance and being encouraged to be an can do research to ensure you are well informed about active member of your community. all the pros and cons, enabling you to make an informed decision. www.covid19.govt.nz/vaccines is a good place Ka Kite, to start, or check with your GP. Some members may not be able to be vaccinated due to their condition/s, however it is important to remember that it is your decision to make. Accessible transport within communities has been Mike Nolan a hot topic around the country lately. The Disabled National Chairperson
MDANZ staff on the move Muscular Dystrophy Northern has farewelled fieldworker members that will shine in my memory forever. I’ve really Darian Smith, who joined MDANZ in 2010 in a part-time role. treasured my time here and our members and the staff His wife, who had been diagnosed with myotonic have become like family”. dystrophy the year before, showed him a Northern Branch Darian left MDANZ to pick up a part-time outreach role newsletter advertising for a part-time fieldworker and said: and advance his writing career. “You should do this!”. After two years he took on a full-time On behalf of MDANZ we would like to say a huge thank fieldworker position. you to Darian for all the support and work he has given to Darian says his time with MDANZ has been incredibly our members and staff. We wish him the very best with his rewarding and there are “moments of gratitude from new adventure and his much-loved book writing.
2 | InTouch magazine Winter 2021 Useful updates for MDANZ MDANZ members news AGM update 2021
MDANZ held its annual general meeting at the end of April, and we’d like to introduce you to the national council’s newest members.
The 2021 MDANZ annual general successful café business for five years. 25 years. I have a lived experience of meeting was held on April 30 via Zoom. I have Becker muscular dystrophy and neuromuscular disease having been National Executive Chairperson have been a member of MDANZ for diagnosed with a muscular condition Dr Tristram Ingham presented his more than 25 years. 10 years ago. In 2019, I transitioned to report and told the meeting how the work as a member of the University organisation remained sustainable Trevor Jenkin: of Auckland, Neurogenetics Research throughout the disruption Covid-19 I am a long-time team. This has introduced me to a caused, how staff, and members, member and range of neuromuscular conditions. I adjusted to remote working, about supporter of have experienced the importance of the multidisciplinary team and the diversifying the organisation’s revenue MDANZ and also valuable role MDANZ has to play. and its contact centre. Chairperson of the Tristram said MDANZ was Northern Branch of MDANZ. I am self- empowering members through a employed and in my spare time I enjoy Joy Jenkin: digital inclusion project, accessible organising and attending events for I joined MDANZ transport and funding for research, MDANZ members. after my son and he referenced the importance was diagnosed Due to the resignation of Councillor- of being, and staying, connected with Duchenne at-Large Anna Davis and one through peer support, the DPO muscular dystrophy councillor’s term ending, nominations Coalition, the Workbridge Council and have been secretary for the were called for. Three nominations and the Neurological Alliance. Northern Branch for 10 years. During were received for the two vacancies, Tristram did not stand for re-election my time on the Northern committee, I and an election was held. as National Executive Chairperson. have organised family camps, Mums’ Nominations were received for Mike Nolan (Canterbury Region) retreats, Christmas parties etc. I was Tony Antunovich (Northern Region), was elected unopposed as National elected to the National Council in 2019. Joy Jenkin (Northern Region - who Chairperson and Trevor Jenkin I am passionate about the association was standing for re-election) and (Northern Region) was elected and love meeting other members and unopposed as National Vice Joel Latimer (Central Region). offering my support. In all my decision Chairperson. MDANZ’s returning office RSM making my first thought is always Hayes Audit announced the result “how will the members feel about this decision?”. Mike Nolan: of the election at the AGM and Tony I come from a and Joy were voted in as Councillors- Tony and Joy join existing councillors background at-Large. Doris Hanham (Central Region), Scott in tourism Boyle (Canterbury Region) and Yasmin management Tony Antunovich: Dolbel-Neville (Northern Region). and currently have I am a 61-year-old The branch representatives are a general manager role with a focus on father of three. I Mike Schneider (Northern), Tristram marketing, HR and event management. worked as a GP Ingham (Central), TBC (Canterbury), My wife and I also owned and ran a in Auckland for and Mike Nolan (Southern). N
InTouch magazine Winter 2021 | 3 MDANZ news The benefits of gaming
For Scott Boyle, gaming started out as a way to preserve his hand function. It’s turned into a 17-year hobby.
In 2004 the world was a very controller my fingers would be people he had a supportive and different place. The internet was completely decorative. But that’s genuine community. slower. Phones were just phones. And just one way it can benefit people “But Scott, don’t games make gaming was generally viewed with disabilities. you violent?” as something either just for kids The use of VR (Virtual Reality) No. Unfortunately this is a belief or geeks. gaming can help with exercise and wrongly pushed by certain media So, imagine my surprise when my maintaining a person’s range of outlets, specifically in the US, despite paediatric neurologist suggested to movement and mobility, as well as the hundreds of studies done in the my parents they get a games console being a pretty funny experience. past 20 years debunking it. for me. As a 10-year-old all I heard In 2014 a study published by Of course, there are definitely was that I was getting a Playstation 2, Davood G. Gozli in the journal of negative consequences for but my parents heard more. Human Movement Science determined gaming, just as there are negative With SMA2 my muscles gradually that people who play action-centric consequences for pretty much get weaker. It’s a slower process than games are able to learn sensorimotor everything we don’t regulate in life. some conditions but fast enough to skills more quickly, such as riding a Some people can become addicted be incredibly inconvenient. bike or learning to drive. to it or spend all their money on My doctor realised that one of the As we all know though it’s not just ‘microtransactions’. most important things to preserve about the physical aspect, there’s also But if you’ve gotten this far and are was my hand function. After all, I the psychological to consider. thinking about getting a console for couldn’t walk anyway so let’s do Gaming, and the hundreds of your child, my advice would be to everything to keep these fabulous online communities in it, has been build a routine and stick to it. fingers moving! one industry where the fans are It’ll hopefully help when Since then I have been an avid willingly sharing their stories about they’re a teenager and have more gamer, and surprisingly one that’s trauma and depression, only to find independence. been supported by my parents. Every video games to be a positive outlet Good luck! N evening from 6pm-7pm during the and coping mechanism. school week I would get into my Mats Steen, who was a prolific standing frame and play a game like Norwegian gamer with Duchenne Ratchet and Clank, and if it was the muscular dystrophy, was thought weekend or the holidays, I would to have lived a lonely life when he get an extra hour. passed away. That regime lasted until I was 16 However, his family quickly realised and stopped using a standing frame. how loved he was when thousands But thanks to the routine I kept of fellow gamers all over the world gaming in a more controlled manner. held vigil, with many attending his So, did it help? funeral in person. Scott Boyle is a member of the Yes! If not for the daily use of a Despite never meeting these MDANZ National Council.
4 | InTouch magazine Winter 2021 MDANZ news A cup of tea and a catch up with ... Ross Paterson
Each issue we introduce a MDANZ team member.
How long have you worked for the It might also mean the opportunity Muscular Dystrophy Association to contribute to supporting the wider and what do you do? community through representation on a district health board or in local I have worked for MDANZ since body politics; developing an artistic November 2020 and I am the or craft ability; becoming more aware Fieldworker for the Canterbury of one’s own culture, (if other than area. My core tasks are to provide NZ European), including learning the education, support and advocacy language of that culture. for my members. I endeavour to meet some practical issues, e.g., helping It could mean that anytime a everyone in my area that would like members to obtain assistance person wanted to get out in their to meet with me, but other work is through government departments community to participate or support undertaken by telephone or email. and organising food parcels. others, this would always be possible. What qualifies as a great day If resources and funds weren’t What are you passionate about? at work for you? an issue, what would you like to see our members enjoying? Growing food in an organic and To be able to reflect on making some sustainable manner, having different sort of difference with the members The opportunity for all members to culinary experiences, spending time with whom I have contact. This might maximise their potential. I believe in with family, friends and being out be as small as having a catchup and the notion that everyone has a variety in nature. giving the member an opportunity of talents but without development I’m an avid rugby and other to assess me and decide whether these talents may lie dormant. sports fan but would rather be doing they trust me and would like to work This might mean undertaking than sitting passively – except at with me. further tertiary education to enhance night. I often listen to sports events work prospects, enjoyment of life and Some of the other opportunities to while gardening. work alongside the members include for members to better understand My favourite happy place is being providing some useful information; what they are capable of. in the hills with friends and at times supporting them at a meeting with It might mean connecting with by myself. I keep myself fit to make school staff; advocating on their behalf a raft of community organisations these experiences enjoyable, and my with health professionals; assisting where one can meet with other wife is able to join me on some of with funding applications and like-minded people and enjoy their these undertakings. N involvement with the wider MDANZ company while undertaking some community. And encouraging their activity and developing skills, e.g., thoughts and suggestions about joining a NZ Men’s Shed or enjoying developing this community. what New Zealand has to offer and It also means assistance with improving one’s wellbeing.
InTouch magazine Winter 2021 | 5 MDANZ news Charitable giving without cheques Banks are phasing out cheques this year, which is expected to heavily impact the charity sector. MDANZ Fundraising and Partnerships Advisor Kristin Cross says there are plenty of other ways donors can continue supporting people with muscular dystrophy.
More than $50 million was donated • Become a regular monthly to New Zealand charities in 2020 supporter by completing a via cheques. direct debit form or setting up Therefore, the phasing out of an automatic payment. Call us cheques by New Zealand banks has on 0800 800 337 or email the potential to have a massive impact [email protected]. on a charity’s ability to support their communities and safeguard lives – Where can I find more help? MDANZ is no exception. Stepping UP, a free community- Fortunately, charities and banks based digital literacy programme have developed a range of other that supports adults to build their safe payment options so donors can digital skills, provides free online continue to give to charities. banking workshops in 120 libraries or community centres around the Why the change? Supporting MDANZ country. The use of cheques had been without a cheque book The workshops are available to declining rapidly as people, Forty percent of MDANZ’s gifts come anyone, regardless of who they bank businesses and organisations choose in by cheque, so we wanted to with. Go to www.steppingup.nz for less expensive ways to pay. share other ways our supporters can more information. Ultimately the banks were keep helping our members, so they Many banks have dedicated faced with supporting a costly, continue to receive the same support. support hubs on their websites shrinking service that used outdated • Make a one-off donation in person with information about alternative technology. In addition, many by visiting a bank. payment options and support on customers preferred to use digital how to stay safe online. They also offer payments, which can be faster, safer • Give over the phone by calling us support over the phone or in person. and cheaper than using cheques. on 0800 800 337 or by using your phone banking service. Our friendly MDANZ team is Upcoming cheque-exit dates • Use the internet to make an online available to talk to you about your • BNZ, Rabobank, TSB, SBS transfer or automatic payment giving options. Give us a call on and HSBC – June 25 through the bank website. 0800 800 337. • Westpac and The Co-operative • Make a secure donation through Bank – June 30 the MDA website – go to www. Thank you for your support • ASB – August 31 mda.org.nz and click the donate We appreciate your continued It is important to be aware that while button. support over this transition period. a specific bank might be allowing • When we send out our appeal Your gifts continue to make a cheques for longer, people won’t be letter, send the donation form real difference to the lives of New able to deposit a cheque from a bank back to us with your debit or credit Zealanders living with muscular that has already gone cheque-free. card details or enclose cash. dystrophy. N
6 | InTouch magazine Winter 2021 MDANZ news Disability support issues are not solely health issues
Alison Riseborough, who represents MDANZ on the Disabled People’s Organisations Coalition, provides an update on the latest issues.
Last year the Health and Disability System Review report recommended that responsibility for Disability Support Services (DSS) should transfer from the Ministry of Health to District Health Boards (DHBs). There was strong feedback from Disabled People’s Organisations against this recommendation, which has now been rejected by the Government. In April, the Minister of Health, on the principles of Enabling Good aimed to recap and share disabled Andrew Little announced major Lives and advice developed as part of people’s experiences of access to changes to the structure of the the machinery of government review health services. This included some health system. He said he had heard of DSS. initial findings on health access from the Health and Wellbeing the criticism that the Health and Minister for Disability Issues Disability System Review did not Report being developed for the DPO Coalition representatives met adequately address the concerns and DPO Coalition by the Donald with Minister Carmel Sepuloni in needs of disabled people. Beasley Institute. March. They discussed the need “We understand the difficulties for clarity on access to Covid-19 Accessibility Legislation in having disability support issues vaccines; the need for a clear The DPO Coalition is continuing treated solely as health issues. They implementation plan for Mental regular engagement with the are not. Disability issues span the Health (He Ara Oranga); and how Ministry of Social Development full range of social issues that any to engage directly with the Health policy team which is developing community faces,” he said in a speech Reforms Transition Unit. The options for Accessibility Legislation. delivered on April 21. [See https:// Government has acknowledged Advice on the options will go to www.beehive.govt.nz/speech/ that earlier engagement was poor Cabinet later this year. This work building-new-zealand-health-service- in both the Mental Health Review has the potential to set down works-all-new-zealanders.] and the Health and Disability requirements for what all parts of The Government has commissioned System Review. New Zealand society, business and further work on the future of DSS. Government must do to deliver The Ministry of Health and Ministry Health Reforms accessibility for disabled people on of Social Development will provide Transition Unit an equal basis with others. N advice on the future of DSS later In May the DPO Coalition began You can contact Alison at this year. meeting with the Transition Unit [email protected] That advice will follow further work responsible for implementing the with the disabled community based health reforms. The first workshop
InTouch magazine Winter 2021 | 7 Now, that’s a great idea! Gadgets and products that members say make their lives better
We asked MDANZ members to tell In Touch readers about their favourite and most useful gadgets – those products that make you wonder why you hadn’t heard about them earlier.
NAME: Peggy Lake CONDITION: Facioscapulohumeral muscular dystrophy PRODUCT: Ceiling Track Hoist - Maxi Sky 2
I wrote an In Touch article many moons ago, about my journey of transitioning from walking to being a power chair user. Anyone who read my story will recall that the power chair, a much-dreaded piece of equipment, was in fact life-changing. Today I write to share my good luck, in discovering another wonderful piece of equipment. A ceiling track hoist. Why did no one tell me about these sooner? I broke my ankle five years ago and after being in a cast for 16 weeks, I lost the ability to do a standing transfer. The lives of my husband Gary and I changed dramatically because I suddenly required full hoisting, for all transfers, Gary Lake demonstrates the ceiling track hoist his wife Peggy uses. forever. Gary Lake demonstrates the ceiling track hoist his wife Peggy uses.
8 | InTouch magazine Winter 2021 Feature | Now, that’s a great idea!
My occupational therapist arranged delivery of an old- It pays to do your own research on what’s out there style manual hoist. Although we had previously modified and to listen and learn from each other. Armed with our ensuite to install a wet area shower, maneuvering a information about equipment you know will transform manual hoist was still challenging. your life, go to your occupational therapist and ask for We struggled for two years before we discovered their support in applying for funding. Good luck. another option was available. One last tip from Peggy By chance my sister Andrea met someone who worked for a client who had a Ceiling Track Hoist. Andrea told Let satin become your friend. me about this exciting alternative, so I contacted my For a decade I’ve been using satin sheets and satin occupational therapist and yes, I was eligible to apply for pyjamas to assist with movement in bed so when I Enable funding. became a hoist user, it was obvious to me that I needed My occupational therapist recommended a Maxi Sky 2 a satin sling. from Arjo Huntleigh. This was duly approved. This makes it easier for my carers to get the sling in place, easier to pull it out when finished and it is much gentler on my skin. My occupational therapist thought this was such a great idea (really! but it’s obvious isn’t it?) that “A ceiling track hoist. she had my spare sling covered by the hospital seamstress. Even though I use satin sheets and pyjamas I also have Why did no one tell me an empty satin pillow slip under my hips when in bed. My about these sooner?” carers pull this to rotate my hips slightly or when turning me. Lastly, I sit on an empty satin pillow slip laid on top of my power chair cushion. This enables me to make slight adjustments to my position when seated. I opted to make a $2000 contribution so that the hoist Satin has made a huge difference to my comfort and the could be wall mounted, giving a full range of travel in any ease with which my carers can move me. direction, rather than on the stands Enable would fund I hope you become a satin convert, if you aren’t already. which limits the range to left and right only. The Maxi Sky 2 is installed, stored and operated so that a single carer can transfer me without any manual lifting, thereby helping to reduce the risk of injury to themselves “Let satin become your friend.” or to me. Once I’m in the sling and hooked up, the carer pushes the button to lift me up, then with the slightest push by my carer, the Maxi Sky 2 glides me through the room from bed, to commode, to power chair, etc. All my carers and family absolutely love the ease of use. Most pleasing of all for me, is that my carers stand to the side rather than directly in front of me and getting an unflattering view whilst I’m hanging in mid-air! Using the Maxi Sky 2 is a far more dignified experience for individuals requiring hoisting. In my opinion, this benefit alone warrants the investment. Go to https://www.arjo.com/int/products/patient- handling/ceiling-lift/maxi-sky-2/ to find information Satin has made a huge difference to Peggy’s comfort in bed and in her about this product. power chair.
InTouch magazine Winter 2021 | 9 Feature | Now, that’s a great idea!
NAME: Heather Anderson CONDITION: Charcot Marie Tooth disease PRODUCT: Billy shoes
These shoes have a zipper that goes along the outside of the shoe and around the toe, allowing the upper of each shoe to open and fold over completely. The foot can be placed on the footbed unobstructed. Then with a tug on the zipper-pull the shoe closes and secures over top of the Billy shoes are easy to put on and take off. foot. Unzip, flip, zip, and go, so easy. Billy shoes have a big I now wear a kid’s size 5 wide shoe and these shoes range of sizes and styles, from toddler to adult and they fit properly. are reasonably priced. [One place where] Billy shoes can be found is Adaptive I have funny feet that are hard to fit. Feet that are wide, AF Footwear. It is a small family run business. They are with pulled up arches, and bent toes. The shoes that I used happy to arrange a fitting for those that live in or around to wear, they were longer than they needed to be, to fit Auckland. Customer service is fantastic. my funny feet. Also, as I wear ankle-foot orthosis (a brace or splint), getting one’s foot into a shoe can be an interesting mission and tiring to say the least. I have muscle waste in my fingers, so laces can be quite fiddly and hard to do up. Whereas these Billy Shoes are so easy to put on and take off. Emma from Adaptive AF Footwear said she has never found a foot that she hasn’t been able to fit. I said: “You NAME: Mitchell Fels haven’t seen my feet.” CONDITION: Duchenne muscular dystrophy NEED: Keeping warm in winter
Hi, my name is Jan Fels and I live with my husband Paul and son Mitchell, aged 27, who has Duchenne muscular dystrophy. Keeping Mitch warm is a number one priority in our household, and we have found some amazing accessories that assist Mitch with this. The first item is a heated throw blanket. Mitch has had a few of these which are really good for keeping him warm when he is at his computer. He also has a fan heater that he uses too. The second accessory that Mitch has is heated slippers. We got onto these a few years ago after a friend told us about them. They are a bit expensive but for the price they have been Heather Anderson. a godsend for Mitch and his cold feet.
10 | InTouch magazine Winter 2021 Feature | Now, that’s a great idea!
They have rechargeable “This has been a batteries that sit in a pocket on the ankle and have three totally amazing piece of heat settings. The soles equipment that has kept of the boots are heated by these. Mitch driving through the They last for a few hours Heated slippers have been a godsend coldest temperatures...” on the low setting but of for Mitchell Fels. course would run out quickly on the high setting. Good value though! The third accessory that we have is the Under The Weather chairpod. I found these last year and we decided that Mitch would benefit from one of these for when we are out and about during the cold months. Cost was okay and not too expensive. www.utwpods.com/products/chairpod Lastly, we have the hand warmer that attaches to the driving console of the wheelchair. This has been a totally amazing piece of equipment that has kept Mitch driving through the coldest temperatures, even the extreme cold of being in New York in April. A brilliant invention! [These were found at] www.mo-vis.com/en/products/mo-vis- products/hand-warmer
NAME: Densie Ganley CONDITION: Limb Girdle muscular dystrophy PRODUCT: Powerfit Powerlegs
Powerfit Powerlegs is a vibration and acupressure system which helps improve circulation without exercise. When a person sits for long periods, the body has to work harder to bring the blood back up to the heart from the legs and feet. As a result, blood pools in the lower extremities. This pressure causes the veins to expand and seep out water into the surrounding tissues. Oedema (or Edema) is the abnormal accumulation of fluid in certain tissues within the body. The accumulation of fluid may be under the skin – usually in dependent areas such as the legs, feet or arms Above: A chairpod fits over Mitchell Fel’s wheelchair. A heated blanket and is common for people who are sitting in wheelchairs keeps him cozy. A hand warmer keeps Mitchell’s hand toasty when he is driving his wheelchair. for long periods of time.
InTouch magazine Winter 2021 | 11 Feature | Now, that’s a great idea!
NAME: Lynda House CONDITION: Cerebellar ataxia PRODUCT: Decorated walking sticks
I am a newbie to MDANZ, although I have had cerebellar ataxia for 50-odd years. I have been asked to tell you about my walking aids – they are cool looking walking sticks. One is pink with a super New Zealand looking pattern all over it (lolly pink with bluish and grey black patterns). It has a very comfy hand cradle in pink and the foot tip is also matching rubber. I found this one by Googling “walking aids in NZ”. The other is metallic purple with a claw base (very Denise Ganley uses the Powerfit Powerlegs to keep oedema under control. pretty). It is a HurryCane and stands on its own but only if the floor is level. My daughter gave it to me with cellphone charms attached to the elastic piece that wraps around the stick before the hand loop. “I use [it] for around 20 minutes Over the years they have gone but I replaced them with each day, usually in the evenings earrings - a much cheaper option and they too can look good depending on the occasion. before going to bed… It’s easy to use and I can do it from the wheelchair.”
I was admitted to hospital because of this and was diagnosed with Chronic Venous Insufficiency. This is when the venous wall and/or valves in the leg veins are not working effectively, making it difficult for blood to return to the heart from the legs. CVI causes blood to “pool” or collect in these veins, and this pooling is called stasis. I use Powerfit Powerlegs for around 20 minutes each day, usually in the evenings before going to bed, and have found that it keeps the oedema under control much more effectively. The vibrations help move the fluid around and then they drain better overnight.
It’s easy to use and I can do it from the wheelchair. Lynda House shows off her pink walking stick and matching hair.
12 | InTouch magazine Winter 2021 Feature | Now, that’s a great idea!
“These sticks have aided me sporadically in the past, but my walking has worsened, and I now need a stick all the time as The gift of a tip my balance is not good.” Many thanks to these members who have shared their useful gadgets with In Touch. If you have an item you’d like to tell others about, please let us know. We’re also interested to hear from These sticks have aided me sporadically in the past, manufacturers or retailers who have a product but my walking has worsened, and I now need a stick they think may be useful to our members. all the time as my balance is not good. As a female I coordinate with the colours in my hair Email: [email protected] and use that my grandchildren colour frequently. ‘In Touch product tip’ in the subject line.
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Get in touch with Paul 0800 466 626 for your free demonstration. [email protected] Pathway to home Trepidation turns to freedom and equal opportunities
Something as simple as a concrete path has helped ensure Daniel Bertinshaw can still be part of treasured family gatherings. By Melanie Louden.
For Daniel Bertinshaw and his four siblings, the family home in Dunedin is the “nexus of the family”. “The house is a family treasure really. The whole family just loves this house,” Daniel tells In Touch. However, access to the house was difficult and dangerous for Daniel who uses a wheelchair so he sought help from the Bradley Jenkin Memorial Fund to address the situation. Daniel, 41, has facioscapulohumeral muscular dystrophy and had been living in Auckland with his wife Camille Cowley. But their struggle to find an accessible house, and a fall while navigating stairs at home, which resulted in a head injury for Daniel, prompted a shift back to Dunedin where their families live. Daniel moved first in May 2019 and lived in the family home with his mum, Donna, and sister, Veronica, while the couple searched for a suitable rental. The problem was the path from the road to his mother’s 115-year-old house was an old brick path, with steps and no handrail. Donna is delighted that a new path means her son Daniel Bertinshaw Over the years tree roots had lifted the bricks and made can drop into the family home unannounced. Photo: Jackie Stewart. the path dangerously uneven. With age the bricks became However, when the time came for Daniel to move out, harder to clean, making them slippery in the wet. returning to the family home where the close-knit family While Daniel was living with his mother he couldn’t get often gathers would have been difficult. out of the house without someone helping him, or at all if “I knew I wasn’t going to be living at mum’s forever, but it was wet. I needed to make it accessible so that I could go over easily “Someone would have to hold on gingerly as they helped once I’d moved out.” me down the steps. Mum would have kittens every time I Daniel, a member of MDANZ Southern Regions, and used that path.” Veronica agreed to cover the cost of putting a concrete If Daniel was in his hand chair, someone would have to path from the footpath to the front door of the house and dismantle the chair, load it in the car, then assist him down Daniel applied to the Bradley Jenkin Memorial Fund which to the car. granted him $604.50 towards his contribution to the path.
14 | InTouch magazine Winter 2021 Feature | Pathway to home
“One sunny day there was a knock on the front door “It’s nice to be able to overcome and I opened it to Daniel. some of the limitations.” He and his powered chair had easily made the trip up the hill from his place to ours. I couldn’t get over it. Daniel and Camille eventually found a suitable rental “That Daniel could property and in May 2020, just after the first lockdown, appear at my door when he Camille joined her husband in Dunedin and they moved wanted to was the greatest into their home the following month. sign that the years of Seven weeks later the path at Donna’s house was hardship were fading away A new path means Daniel Bertinshaw completed and Daniel had a new-found freedom. for Daniel and Camille.” has the freedom to come and go from his mother’s house without assistance. Leighton Griffiths from Griffiths Construction laid the path, Donna says the family Photo: Jackie Stewart. and both Daniel and Donna are grateful for his efforts. home, built in 1906 as the “He was really good at listening to the specific needs I manse for the local Baptist Church, is a treasure. have and delivered without any hassle.” “We have special times when we get together.” Daniel can now ride his power chair the five minutes from Donna says it means “everything, and not just to me,” his new home to Donna’s house and the best part is he can that Daniel can still be part of family gatherings thanks turn up unannounced. to a simple path. “That was a bit of a surprise for mum!” “The Sibs (as they call themselves) love being together. Initially, Daniel didn’t realise the impact the ramp It’s wonderful that Daniel can motor up the hill when would have. there’s a gathering. “But then I realised it was a relief to mum and to my wife. “One day I’d like to have a path made through the Before there was huge trepidation about me using the hedge to the back yard so Daniel can enjoy outside times old path.” with everybody.” The path puts Daniel on an “equal ability” to his siblings. Camille and Daniel are now living in an accessible rental “I’m just the same as my siblings – I can turn up to mum’s property while they prepare to build an accessible home on any time. We’ve all got a key for the door.” land they have owned for a number of years. Daniel is very grateful to the Bradley Jenkin Memorial Fund for contributing to the path and recognising the benefit the path would have to him and his entire family. The Bradley Jenkin Memorial Fund “It’s nice to be able to overcome some of the limitations.” The Bradley Jenkin Memorial Fund helps MDANZ Donna says watching her son use the old pathway “filled members with a neuromuscular condition receive me with dread”. funding for access opportunities and specialised resources that enable them to achieve freedom. “Even when it was dry, it was a difficult mission, requiring serious concentration, to help Daniel get safely down the The fund has helped members purchase specialised path to the steps, then down the steps to the footpath, and sports equipment, participate in sporting events, it has lastly safely into the car. contributed towards the cost of obtaining a mobility dog, provided mobility equipment, and assisted with “Because of accessibility issues, Daniel spent a long time career development such as university and course fees. in a lockdown of a different order.” For more information go to https://www.mda.org.nz/ Donna remembers well the first time Daniel arrived What-We-Offer/Bradley-Jenkin-Memorial-Fund unannounced.
InTouch magazine Winter 2021 | 15 All aboard Exploring the North Island on board the Northern Explorer
MDANZ member Tegan Morris says the train journey from Hamilton to Wellington provides a unique perspective of our countryside and towns.
The Northern Explorer rail trip starts in Auckland and runs down through the central North Island, with its end point in Wellington. My friends and I boarded the train in Hamilton, which is the second stop on its journey south.
Due to using a power chair and generally having other equipment to travel with, I have previously taken my van or, for shorter trips, I have flown from the Hamilton Domestic Airport.
But for this trip I wanted the opportunity to experience Above left to right: Tegan says the Northern Explorer was a great more of my country’s beautiful landscape, which is not opportunity to see more of New Zealand. The views are spectacular able to be fully appreciated when we are zipping by in during the 10.5 hour journey. Tegan took the opportunity to visit some sights in Wellington. a vehicle or overhead in a plane.
When we were given our tickets and escorted on board might have been during busier travel seasons. the train, we were directed to the dining carriage, which The windows alongside the train carriages are large is where the wheelchair spaces and accessible bathroom and offer amazing viewing opportunities, so you can take are located. in the diverse landscape as the journey continues down In order to board the train, I was loaded onto the the country. wheelchair hoist, which is in the same area of the train. The Starting with the green farmland in the Waikato we then lift is the same type of mechanism you would find in some travel into the more forested and then tussock/tundra mobility vehicles. landscape of the Central Plateau. The dining area allows enough space for a person in a After this it once again opens out into a variety of wheelchair to park in front of a table with a chair or chairs farmland and then coastal views as you near Wellington. on the opposite side, with a similar arrangement on both sides of the carriage. Some of the scenery is familiar if you have driven down the main highway but you get more of a spectacular This means that passengers can decide which side they view as the train brings you closer to rugged hillsides position themselves to enjoy the view and can face the and expanses of bush. Where it passes through the more opposite direction for the return journey if they choose. remote hilly landscapes, river valleys and coastline there On our trip, I was the only person in a wheelchair and are unique views which you have more time to appreciate with the Covid restrictions, there were less people on and photograph from the windows or the outdoor board, so we had more space available than perhaps there viewing carriage.
16 | InTouch magazine Winter 2021 Feature | All aboard
Unfortunately, the outdoor carriage and other parts stops where passengers can join or depart from the train. of the train were not accessible in my chair, but if people The journey provided a unique view of the small are more mobile or perhaps with smaller chairs, they may communities and towns we passed through and the be able to get to the outdoor area. added height advantage and the placement of the rail Even though I wasn’t able to go outside on the tracks meant we saw parts of the townships that most viewing carriage I don’t feel like I missed out at all as visitors wouldn’t see. As a history nerd, a highlight for the highlight views like the Raurimu Spiral, Turangarere me was being able to appreciate the older buildings and Horseshoe and Makatote Viaduct were just as stunning homes in the more remote places and the historic aspects from inside the train. These sites would also likely interest, of the train stations. not only those with an interest in trains, but also in We found the staff were all helpful and pleasant and we engineering, due to the complexity and scale of the were able to enjoy the views and the relaxing experience structures needed to achieve the functional track. of the journey without having to worry about traffic or rest In our location in the dining cart, we were able to enjoy stops along the way. food available in the onboard café, as well as our own snacks. The Northern Explorer leaves Auckland at 7.45am and The bathroom was very conveniently located in the arrives in Wellington at 6.25pm. For more information go entrance to the same carriage. to https://bit.ly/3dPMB9I.
The route has several stops along the way. Most are Tegan Morris has congenital myopathy and is a member brief, for the train to change drivers, but there are several of Muscular Dystrophy Northern.
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2020 TOP DESIGN WINNER EUROPEAN PRODUCT DESIGN DESIGN www.euromedical.co.nz | freephone 0800 33 88 77 AWARD AWARD 2019 Alisha Mill hopes boccia will lead her to the international stage and the Paralympics. Photo: www.jjohnstone.photography
Rolling through 2021 Alisha is living her best life on and off the boccia court
FSHD isn’t slowing Alisha Mill down. After a successful 2020 year playing boccia she has high hopes for what this year will hold. By Melanie Louden.
Alisha Mill is a typical teenager. in the individual competition and she was awarded the She loves to sketch, especially architectural drawings; Boccia NZ Junior Player of the Year award. she likes to cook meals for her family; she’s a keen She was also the first para-athlete to win the Bernie photographer and she doesn’t shy away from adventure. Walker Award from the Canterbury Sports Foundation, The 17-year-old lives with her mum, Melissa, dad, Matt, and at the 2020 Parafed awards dinner she became the and her older sister Skyla in Christchurch. They have a first boccia player to receive the Parafed Junior Sports “farmyard” of family pets. She loves singer Lewis Capaldi Person of the Year title. and Kiwi bands L.A.B and Six60. Alisha was diagnosed with facioscapulohumeral She is also one of New Zealand’s top boccia players and dystrophy (FSHD) at the age of seven. But the diagnosis has held the number one ranking for her classification for came after many hospital and specialist visits with no real the last two years. results and a misdiagnosis of moebius syndrome. Boccia is similar to petanque and bowls – players try and The correct diagnosis came about after Alisha’s mum get their ball as close as possible to the jack. It’s played Melissa saw an episode of The Ophra Winfrey Show sitting down and is an inclusive sport for young and old featuring a girl that couldn’t smile. and people with varying abilities. “Everything this girl had was similar to me. After my Last year at the national competition Alisha came away mum spent many hours on the internet researching, with a bronze medal in the teams’ event, her first gold she showed my specialist and they looked it up and said
18 | InTouch magazine Winter 2021 Feature | Rolling through 2021
from Boccia New Zealand and ParaFed Canterbury, as well as the Muscular Dystrophy Association of New Zealand’s “I do not let it get in the way Bradley Jenkin Memorial Fund. of me living my best life.” “The money I received from the fund went towards new boccia balls. The funding has also helped me to hire courts for private trainings.” Her new balls arrived two weeks before the 2020 ‘you’ve hit the nail on the head’.” National Boccia Championships. FSHD typically affects the face, shoulder blades and “This didn’t allow me to have much time to train with upper arms. But in Alisha’s case it “affects my body all over them and get used to how they roll. But this did not stop from head to toe”. me from getting good outcomes. “Medically, there is no cure, which can be hard. But it does “I’d like to thank the Bradley Jenkin Memorial Fund for not stop me, and it does not mean that there will never be its support to help me reach my 2020 boccia goals. I can’t one.” Alisha is currently part of a drug trial in Australia, which wait to see what 2021 has on offer for me.” she will be finishing in New Zealand due to Covid-19. “I do not let it get in the way of me living my best life. Some things may take me longer to do than an ‘abled’ person – I may have to do it differently. “Yes, I have a disability, but I do not let this stop me breaking boundaries.” She’s done everything from adaptive white water rafting to camping, skydiving and ziplining. Her boccia career began about five years ago after she went to an open day put on by Parafed Canterbury. “I was playing this guy from the club and I won and they were like ‘woah she’s really good!’ They invited me to a club training, and I’ve never left.” Alisha trains four times a week – three private trainings and one with the club, and says she likes competing in a sport where everyone is on an equal playing field. “Boccia means a lot to me. It has opened a world of opportunities. Boccia allows me to exercise both physically and mentally – it’s all about thinking strategically. “My goals are to get on the international stage and one day play at the Paralympics.” She says balancing school and boccia can be quite challenging, but she’s grateful for the “full support” she has from her school and her boccia club. 2021 is a busy year of competitions. In April she competed in the Halberg Games, followed by the North Island, South Island and National championships. There’s also the Secondary Schools Boccia
Tournament and her club tournaments. Top: Alisha Mill pictured with her sister Skyla and dog Chico. Alisha says support for her love of boccia has come Above: Alisha enjoys cooking for her family.
InTouch magazine Winter 2021 | 19 TECH report
Information pathways and Covid-19
Wellington SeniorNet facilitator Alan Royal writes about the benefits of creating mind maps to share online information.
The Covid-19 lockdown revealed Make a face mask many ‘hidden’ technology-related KEEP CALM AND Bored During Self-Isolation? CARRY ON Exercise safely at home issues. Lack of confidence in handling (AT 2 METRES)! Arts & Letters Daily NZSO live
Broadband deal Home exercise options apparently simple technology issues, Skinny Stuck at Home? as well as a lack of awareness of how Eat Well for Less WCC Stay at Home Fest 267 eateries online Stuff documentaries Covid big document dump to go about seeking information Love Food Hate Waste Free ebooks BobJones (Sir) Wine2u Leisure/Learning WCC passing the time Microwave sterilising Use free time on solving technology issues, were No bug ginger beer Covid-19 News on Press Reader WCC eLibrary AGE Concern Covid 19 scams prominent. NewWorld Food 3000+ Ted talks Current cases No yeast bread NZ Centre for Political Research Microwave meal in a mug Also prominent was a confidence Singapore resources The Spinoff Countdown You Tube MOH website Information COVID and awareness situation related to NewsHub Active 10 walking app NZ Govt website PLAN Covid-19 information. Living in a Exercise plans Otago Classic app Neighbourly Support Wellbeing tips Physical Older adults Covid home plan retirement village made me more Prevent boredom Mental Handwashing Steady As You Go - You Tube The Lockdown Mentemia aware of these problems. During Beehive press releases Melon Otago falls manual Support apps Contribute Just a thought lockdowns I was unable to visit Google Covid19 website Coronavirus research
Self isolation Level 3 for Seniors residents, but I was able to address Social solutions either by email or phone. Alan Royal’s Covid Plan mind map is a useful and easy way to share information. For a larger map, visit www.bit.ly/covidplannz. I could visit and work on a computer, phone, tablet or TV in the way to present, in a diagram, a mass of provided an opportunity to school absence of the person. This meant information, in this case web links, on a many people on how to use search they would give me sole access to single page. While I was working with engines such as Google to explore not their villa or apartment. older people, the result of the exercise only technology related issues, but, is relevant to the impaired population. for example, extending the health and Retirement village residents (50 The mind map is available at exercise tools noted in the mind map. percent of the 65+ age group have www.bit.ly/covidplannz. one or more impairments) represent I have used the word impairment a cross section of all impairments – Another feature is that it is a dynamic in these notes rather than the word sight, hearing, mobility, cognitive and tool that can be added to and updated disability. In many situations an learning difficulties. In my experience, in real time, so the information is impairment only becomes a disability the latter two are the major source always up to date. Feedback on this if technology, information (web of impairments. This provides a good approach has been positive. Users and print), services, infrastructure, base in understanding how to get have found the simplicity of the environment or community cannot information across to the impaired approach has given them confidence resolve an impairment – then it community. to explore further and made them becomes a disability. Living with Covid-19 introduced more aware of what information is In the case described above many other needs related to health useful, relevant and available during information and technology have and wellbeing. To meet these needs, stressful lockdown situations. combined to make help accessible. in a simple manner, for older people in As noted, confidence and awareness Alan Royal is a member of Wellington City general, I developed a process using were two major hurdles to get over Council’s Accessibility Advisory Group and a mind map. A mind map is a useful during lockdowns. The lockdowns also a facilitator with Wellington SeniorNet. R
20 | InTouch magazine Winter 2021 TECH report
Technology: Creating accessible solutions
Assistive technology opens up a world of opportunities for people with disabilities or physical limitations, writes Adaptive Technology Solutions founder Genevieve McLachlan.
What would you do if you couldn’t Types of assistive technology read your computer or smartphone? For many people living with access Here are a few examples of the more needs, that is their reality. common assistive technologies and their uses. Picking up your phone to check your notifications, scrolling through Dragon Speech Recognition social media and messaging your Software: Turns your voice into text friends is something you wouldn’t as you dictate. It can help people normally think about. But that simple with learning issues, like dyslexia who act of staying in touch with the world struggle to express themselves in Genevieve McLachlan wears headphones digitally becomes a lot harder if you while using a computer with magnification. writing. People who are unable to use have difficulty with your sight or your their hands due to an access need. motor skills. ZoomText or SuperNova by allowing them to participate So, what can you do if you (or one Magnification Software: Magnifies in training and employment of your loved ones) are faced with the entire computer screen. It can help opportunities, therefore increasing this problem? Two stress-saving people with low vision who struggle independence and increasing their words… assistive technology. to read their computer screen. contribution to society. Assistive technology is any item, JAWS or Dolphin Screen Reading Something as simple as the built- piece of equipment, product or Software: Reads the entire computer in magnification feature available software program that provides screen by voice. It can help people through technology giants like Apple someone with disabilities or who are blind, use screen reading and Microsoft may reduce the need physical limitations the ability to live software to use their computer. independently, maintain functions or for expensive additional software. improve motor functions. That can be Not only have they decreased Apple, Microsoft and Android are anything from magnification software the cost of assistive technology, incorporating this type of technology or speech dictation, right through but these features make it more into their Operating Systems; to specialist hardware that allows accessible for everyone. People with however it is not usually enough people to use technology their way. access needs are often limited by for someone with significant access Assistive technology is perfect for restricted opportunities and not by needs, therefore an assessment can individuals who struggle to use their their actual disability. be necessary to determine the best possible solution for each individual. computer, read print, or who may The great news is that people who prefer dictating rather than typing. are working or studying and need Adaptive Technology Solutions Access to technology is important specialised assistive technology provides guidance and training in for everyone to create a truly inclusive because of their disability may be making technology accessible. society where there are no barriers eligible for Government funding. Genevieve uses assistive technology to inclusion. This funding covers the costs of daily to run her business, having lived Technology has opened the specialised assistive technology that her whole life with access needs. world for people with access needs, is specific to their disability. www.adaptivetech.co.nz. R
InTouch magazine Winter 2021 | 21 Your condition in review Becker muscular dystrophy Becker muscular dystrophy is a genetic condition where complications can be minimised by adhering to a management programme specially designed by medical professionals.
Becker muscular dystrophy (BMD) is named after German doctor Peter Emil Becker, who first distinguished the symptoms from other muscular dystrophies in the mid-1950s. BMD is considered to be a milder form of Duchenne muscular dystrophy (DMD), as both are caused by mutations in the same gene, and thus have similar symptoms. BMD occurs once in approximately 30,000 live male births. Dystrophin muscle protein domain Features of BMD (N-terminal actin binding domain). BMD is variable in severity, depending on the type of mutation in the shorter. Once they occur The causes dystrophin gene. It is less severe they cannot be stretched or than DMD and usually has a much BMD is a genetic condition caused exercised away.) later onset. Some people with BMD by a defect in the dystrophin gene are able to walk well into adulthood. Some children with BMD will located on the X chromosome. The In some cases, BMD may not be experience further complications: faulty gene results in a deficiency diagnosed until after adolescence. • A minority of BMD children will of the protein dystrophin, causing The following features may be display intellectual problems or muscles to deteriorate and break displayed: learning difficulties. down in males. The dystrophin gene is located on the X chromosome. • Muscle weakness. • Behavioural difficulties will on Females have two copies of the X • Muscle cramps. occasion arise with BMD. Such chromosome. A woman who has problems are usually mild, and • Fatigue. one correct dystrophin gene and one can be managed. • Breathing distress. faulty dystrophin gene can nearly • Skeletal deformities. • Rarely, heart disease such as always produce enough dystrophin • Unusual walking gait; waddling. cardiomyopathy will occur as the to have normal muscle function. disease progresses. • Difficulties in hopping, running, She is therefore a "carrier" of the jumping. • Contractures occur as scar tissue mutation or a "genetic carrier" of • Muscle deformities – pseudo replaces normal elastic tissue. DMD or BMD. Males have only one hypertrophy of calf; contractures. This prevents normal movement X chromosome and therefore one (Contractures are muscles or in that area, first in the ankles, dystrophin gene copy. So if a male tendons that have remained too then knees, hips and joints of has a faulty dystrophin gene he will tight for too long, thus becoming the upper body. be affected with DMD or BMD since
22 | InTouch magazine Winter 2021 Your condition in review he cannot produce the correct amount a physiotherapist, occupational supplements have been tried over or type of the dystrophin protein. therapist, with specialists as required. the years to treat the symptoms The pattern of inheritance of BMD is • Exercise: Both passive and active of BMD. So far there is only one called X-linked recessive. If a woman is exercises play an important role group of drugs – the catabolic a carrier of the mutation (she has one in BMD management. Walking is steroids – that have shown any copy of the faulty dystrophin gene), easily achieved in the early stages, significant benefit. Prednisone and and she has a daughter, there is one but can become more difficult Deflazacort have been shown to chance in two that the daughter will as strength declines. Walking slow the loss of muscle function, be a carrier of the mutation and one sticks and aids can be valuable in or even to increase strength. This chance in two that she will not. prolonging mobility. Swimming is option needs to be discussed For each son of a genetic carrier, good for ensuring all muscles are with the child’s doctor as there there is one chance in two, i.e. a 50 exercised, and the joints mobilised. are possible side effects. percent probability, of being affected Passive exercises, or assisted • Nutrition: Excessive weight gain and an equal chance of not being stretching, should be established as can occur from reduced physical affected. early as possible. A physiotherapist is activity produced by the muscle Since women have two X invaluable in developing an exercise weakness. It is more important chromosomes, if one X chromosome programme to delay the shortening for an individual with BMD than has the defective gene, the other X of muscles (contractures). These the average person that weight chromosome functions to produce exercises should be undertaken on is monitored and that a well- enough dystrophin for normal muscle a daily basis, and will often require balanced diet is followed. function. Males on the other hand, assistance. Moderate exercise rather • Surgery: If contractures develop have one X and one Y chromosome; than heavy strenuous exercise is at the ankle joints, these can be thus they do not have a compensatory important. People who have MD surgically treated by release of the X chromosome, and will develop disorders are more likely to tire Achilles tendon. This procedure symptoms. quickly and overdoing it may cause is usually done once the child is Spontaneous mutations are irreparable muscle damage. wheelchair dependent, and helps responsible for approximately one-third • Supportive Equipment: If, and improve their foot position. Having of BMD cases, with the genetic fault when, contractures develop in a comfortable foot position may arising in the affected boy himself. This the ankle joints, a type of orthotic help prolong mobility for some happens when the mutation in the may be offered to be worn at BMD boys. Spinal fusion surgery dystrophin gene happens by chance in night. These ankle splints will help is performed to correct scoliosis. the formation of the egg or sperm. With maintain the joint in a normal Becker boys who undergo this a spontaneous mutation, the boy will position, and may help reduce ‘spinal fusion’ are usually very be the first in his family to have BMD. pain from muscle cramping. pleased with the outcome. Standing frames may prolong • Respiration: The normal defences Managing BMD standing and walking, although people use to rid themselves As yet, there is no treatment that it is likely that a wheelchair will of excessive secretions do not can overcome the progressive eventually be needed. function effectively in BMD muscle weakness of BMD. It is The suitability of the home boys, and the early treatment of possible, however, to minimise environment is important to sniffles and sore throats, and the complications by adhering to a consider at an early stage, so that prevention of chest infections are management programme designed future adjustments can be made important. Family and caregivers by a team of medical professionals. over time. must watch carefully for signs of The team will usually be headed by • Medical Treatment: Many disrupted sleep due to respiratory a paediatric specialist, and include medicines and dietary problems. R
InTouch magazine Winter 2021 | 23 Your condition in review Accepting support from family and friends is key Paralympian, Tim Dempsey says living with Becker muscular dystrophy has taught him to focus on what he can do, not what he can’t.
was not going to turn out quite how These days, I run the Sailability I had expected and continued for Auckland organisation that many years living in Rotorua running encourages people with disabilities several businesses. to experience the same freedom, My first contact with MDANZ as a adventure and fun that attracted client was in the late 1980s. In 1997 I me to sailing. was the Rotorua Bow Tie coordinator I still do fundraising and import and eventually took on the role of boats as the Hansa agent. MDANZ funding manager, which I am now a fair-weather sailor brought me to Auckland. and only occasionally compete. Some of the initiatives I was My passion is getting other people involved with were the Bow-Tie involved in sailing. annual fundraising appeal and the One of the most inspiring things direct mail programme. The work I’ve seen was Sean Stamp who was rewarding, and I met some great Tim Dempsey pictured with sons Reuben, had Duchenne MD sailing with his left, and Oliver, and his partner Keri. people – we had a lot of fun. Some ventilator tied onto the back of the of the memorable times were the boat. Sadly Sean passed away a short Hello, my name is Tim Dempsey. I Ferrari days and the MDANZ camps. while later. Many of our sailors have grew up in Rotorua and now live At an Outward Bound course muscular dystrophy. in Auckland. I was diagnosed with in 2003, we were encouraged to I feel so lucky to be a dad to Becker muscular dystrophy when I set goals and one of mine was Reuben, 13, and Oliver, 11, and to was 15 after having to pull out of the to represent New Zealand in the Milford Track walk on the first day. Paralympics. I had been struggling with Sailing has always been my sport physical activities before then, so the and I spent a lot of time sailing on diagnosis wasn’t a complete surprise. Lake Rotorua growing up. However, I was in denial and quite In 2009 I started my campaign upset for some time as a teenager to qualify for the Paralympics. I was facing life-altering news. fortunate to compete in the 2012 I was fortunate that I have had London Paralympics, with Jan Apel heaps of family and friend support. in the SKUD 18 class coached by One helpful contact early on was Rob Hielkema and supported by meeting an older man with Becker Steve Cranch. called Doug. This was one of the best Tim Dempsey represented New Zealand in Eventually I accepted that my life experiences of my life. sailing at the 2012 London Paralympics.
24 | InTouch magazine Winter 2021 A member's The Bradley Jenkin STORY Memorial Fund
The Bradley Jenkin Memorial Fund enables MDANZ members with a neuromuscular condition to access I have found it opportunities and specialised resources. valuable to talk with This could be anything from exercise classes to keep fit, people with the career development, modifications to your home or same condition. I am car, mobility or medical equipment, or travel costs. available for a chat and can be contacted What makes a good application? through MDANZ. The fund’s panel is presented with a number of applications each round – so make yours count! Think of your application as a CV – you need to spend time with my partner Keri and sell yourself and your cause. hang out with our new labrador pup Skye. I feel privileged to have my family around me. I try to be independent, but I Provide as much detail as possible am finding some daily personal • Why do you need this funding? can also write a letter tasks more challenging and time- of support. consuming these days. • How it will help you, or make I am, however, determined to stay a difference in your life? • Cost evidence such as independent for as long as possible. I • Ask your fieldworker for help a quote or a receipt have had regular physio sessions with with your application – they must be supplied with Claire Wihongi for the past eight years your application. that focuses on stretches which helps Funds must be spent within three months. me stay more flexible. I have found it valuable to talk with people with the same condition. I For criteria, info and am available for a chat and can be to apply, go to contacted through MDANZ. www.mda.org.nz The main message I have, coming > What We Offer up to 50 years of age and living with Becker, is to focus on what you can do, not what you can’t. I have also Applications close learnt to appreciate and accept the • January 31 • April 30 community and family support that is out there. • July 31 • October 31
InTouch magazine Winter 2021 | 25 CLINICAL Perspectives
In contrast, genomic testing How is it decided what doesn’t have a specific target - it is will be tested for? directed at all genes and would be The referring clinician generally likely to be used in cases where a specifies the condition that needs patient has a number of features to be tested for and the genetics lab which collectively don’t correspond would then usually do any in-house to a specific condition, or perhaps has test available for that condition. had a number of genetic tests that If further testing needs to be done haven’t provided an answer. other labs’ offerings will be examined and a decision will be made based on What muscular dystrophy the most appropriate test. conditions can people be tested For non-genetics referrals, Genetic for in New Zealand? Health Service may be consulted • Duchenne and Becker about what is appropriate. There are muscular dystrophy. lists available showing which genes Diagnostic • Myotonic dystrophy type 1. have strong evidence for association • The most common forms of with different conditions to help in testing for spinocerebellar ataxia the decision-making. neurogenetic (SCA1, 2, 3, 6 and 7). • Fragile X-associated Tremor Ataxia disorders (FXTAS). The referring clinician • Charcot-Marie-Tooth type 1A / generally specifies the Molecular geneticist, Jo Hereditary Neuropathy with liability Martindale, answers In Touch’s to Pressure Palsies, X-linked CMT. condition that needs to be questions about how the • Spinal muscular atrophy (SMA). tested for and the genetics genetic testing regime works • Spinobulbar muscular atrophy lab would then usually do in New Zealand. (SBMA) / Kennedy disease. any in-house test available Other tests can be arranged but are for that condition. done outside New Zealand. Firstly, perhaps you could Are you often testing for a broadly explain the difference variety of symptoms/genes Where do people go to between genetic testing and to get to a diagnosis? get the testing done? genome testing? For some conditions, yes. Anything The blood test can be done anywhere Genetic testing refers to testing of that is very heterogeneous (i.e. a that has a phlebotomy service. The a single gene or a group of genes number of genes can cause the sample will be forwarded on to the associated with a specific condition. same or a similar condition) may nearest genetics lab and processed An example would be looking at well need further testing if the initial from there. The results go back to the SMN1 gene in patients clinically test is negative. An example would the referring physician. suspected of having SMA, or be inherited ataxias, where the perhaps a panel of genes associated commonest forms would be tested Must they have a referral with different types of SMA if the for first and then there would be reflex from a specialist? initial SMN1 gene test was not to a broader selection of genes if the In general, yes. Most diagnostic the answer. initial test is negative. referrals come through neurology
26 | InTouch magazine Winter 2021 CLINICAL Perspectives
(including paediatric neurology), get the results varies by lab and the paediatrics or Genetic Health Service complexity of the test that has been NZ. Pre-symptomatic or prenatal requested, so can range from a few testing can only be accepted via weeks to several months. Genetic Health Service NZ. Where do the offshore tests go to? It depends on the condition. For example, facioscapulohumeral Patients may wish to dystrophy testing is sent to Bristol have carrier testing or in the UK, since they have specialist pre-symptomatic testing expertise in this condition. Otherwise, tests could go to Australian, European but it’s important that the or North American laboratories. appropriate counselling is undertaken first. Would that be for quite quickly mount up and getting the rare conditions? result could take quite a long time. Again, it would depend on the It’s possible to get a gene panel test complexity of the test required. covering up to 25 genes for under Is testing free? Some conditions are individually $1000 now. Obviously any lab test does have a rare but collectively, relatively cost attached to it. However, when common. A gene panel is generally testing deemed clinically necessary the most cost-effective and quickest has been requested by an appropriate way to achieve a diagnosis for clinician, it is funded through the disorders that are heterogeneous. public health system so there is If you were looking for a condition no cost to the patient. that could be caused by hundreds of different genes, each of those Jo Martindale MSc, FRCPath is the Head What are the most common genes may only contribute a tiny of Molecular Section, Wellington Regional type of tests requested by fraction of the overall frequency Genetics Laboratory and the current Chair clinicians/patients? of the condition. of the NZ Branch of the Human Genetics Diagnostic testing for neurogenetic In the “old days” it was common Society of Australasia. disorders is usually requested by an to do sequential gene testing. An appropriate specialist, e.g. a neurologist. example is HSP – the gene which Patients may wish to have carrier contributes the most, the SPAST For further information see: testing or pre-symptomatic testing gene (SPG4), accounts for about 40 Genetic Health Service NZ but it’s important that the appropriate percent of autosomal dominant HSP. www.genetichealthservice.org.nz/ counselling is undertaken first. Before the onset of gene panel Canterbury Health Laboratories testing that single gene would www.chl.co.nz/ We understand that some tests have been tested first, probably LabPlus Diagnostic Genetics are sent offshore – why is this followed by the ATL1 gene (SPG3A) www.labplus.co.nz/laboratory-services/ and how long does that take which accounts for 10-15 percent of diagnostic-genetics/ to get the results? dominant HSP. Each of these gene Samples will be sent overseas tests would be very laborious and Wellington Regional when the testing isn’t available in time-consuming and cost several Genetics Laboratory New Zealand. The length of time to hundred dollars so the cost would www.wellingtongenetics.co.nz/
InTouch magazine Winter 2021 | 27 About us MDANZ is a trusted source of specialist information and provides a range of free services and practical support for individuals, families and whānau with lived experience of rare neuromuscular conditions.
The Muscular Dystrophy Association of New Zealand • Free loan of resources, such as library books, recreational Inc., commonly known as MDANZ, began in the late beach chairs and cough assist machines 1950s. Since then MDANZ has broadened its scope to • Funded support for counselling support many other neuromuscular conditions. We are • Discretionary funding for life enhancing resources proud to have Judy Bailey and Dame Susan Devoy as our not covered by government longstanding patrons. Our unique governance structure ensures leadership of • A high quality quarterly magazine to inform and inspire the organisation by individuals and family members with our membership and broader communities of support lived experience of a neuromuscular condition. We have • Funding for neuromuscular research and a mechanism four regional branches that are supported by the National to help New Zealanders to access clinical trials and Office based in Auckland. new treatments We want New Zealanders with lived experience of • Education workshops for members, health professionals, neuromuscular conditions to experience freedom of schools and others choice in a responsive society. • Advocacy and lobbying at a community or national level To achieve this mission, we provide: • A platform for support groups and peer to peer • Free information and advice, through our website, networking. an 0800 info line and in paper booklet form MDANZ is a registered charity and relies almost entirely on • A nationwide fieldworker service for personalised donations from the public, trusts and other businesses/ support organisations to continue its work in the community.
National Support Team
Trevor Jenkin Brian Hadley Melanie Louden Kristin Cross Shelley Butler National Vice Accountant and Communications and Fundraising and Accounts Assistant Chairperson Business Manager Marketing Advisor Partnerships Advisor
Manager for Research, Development and Monitoring: Customer Service Representatives: Alaric Bragg, Ashia Porteous, Calls 4 Chris Stichbury. Development Leader: Dene Benham. Annette Glasglow, Carlos Bennett, Elisha Pamata, Jackie Roberts, Charity Ltd Supervisors: Maatuakore Wirihana-Tawake, Samuel Boyd. Kelly McIlhatton, Maureen Jenkins, Tamara Sergent. (formerly the Contact Centre) Senior Customer Service Representatives: Kelly Williams, Administrative Assistant: Janine Gardner. Melissa Jamieson, Simone Wareham, Vicky Ferguson.
See more about our team at www.mda.org.nz Conditions covered by MDANZ Our branches Muscular Dystrophies: Diseases of the Becker Muscular Dystrophy Peripheral Nerve: Northern Region Congenital Muscular Dystrophies Charcot-Marie-Tooth Disease and Congenital Myopathies (CMT) (Hereditary Motor and Distal Muscular Dystrophy Sensory Neuropathy) - all types Duchenne Muscular Dystrophy Dejerine-Sottas Disease (CMT Type 3) Emery-Dreifuss Muscular Dystrophy Hereditary Sensory Neuropathy Fieldworker: TBC Office Manager: Denise Ganley Facioscapulohumeral Inflammatory Ph: 09 415 5682 or 0800 636 787 Email: [email protected] Muscular Dystrophy Myopathies: Limb-Girdle Muscular Dystrophy Dermatomyositis Manifesting carrier of Central Region Inclusion Body Myositis Muscular Dystrophy Polymyositis Myotonic Dystrophy Oculopharyngeal Diseases of the Muscular Dystrophy Neuromuscular Junction: Diseases of the Congenital Myasthenic Motor Neurons: Community Co-ordinator – Fieldworker: Syndrome Spinal Bulbar Muscular Wellington Region: Pip McLean Talitha Vial Lambert-Eaton Syndrome Atrophy (Kennedy’s Disease Ph: 0800 886 626 Email: [email protected] and X-Linked SBMA) Myasthenia Gravis Spinal Muscular Atrophy - all Myopathies - all types: types including Type 1 Infantile Canterbury Region Southern Regions Progressive Spinal Muscular Andersen-Tawil syndrome Atrophy (also known as Werdnig Central Core Disease Hoffman Disease) GNE Myopathy Type 2 Intermediate Hyperthyroid Myopathy Spinal Muscular Atrophy Hypothyroid Myopathy Type 3 Juvenile Spinal Myofibrillar myopathy Muscular Atrophy (Kugelberg Fieldworkers: Ross Paterson (left) Fieldworker: Welander Disease) Myotonia Congenita (Two forms: and Jane Hazlett Jackie Stewart Thomsen’s and Becker’s Disease) Type 4 Adult Spinal Muscular Atrophy Myotubular Myopathy Nemaline Myopathy Hereditary Spastic Paramyotonia Congenita Paraplegias (HSP) Periodic Paralysis - all types: Also called Familial Spastic Inherited Ataxias: Office Manager: Vivienne Fitzgerald Paraparesis CANVAS Canterbury: 03 377 8010 or 0800 463 222 Email: [email protected] Southern: 0800 800 337 Email: [email protected] Leucodystrophies Friedreich Ataxia (FA) - all types. Spinocerebellar Ataxia (SCA) Metabolic Diseases Neurocutaneous Council Representatives of muscle - all types including: Syndromes - conditions affecting the brain and the skin: Acid Maltase Deficiency (also If you want issues brought to National Council meetings, talk to known as Pompe’s Disease) Central Cavernous your branch representative. They have the responsibility to raise Debrancher Enzyme Deficiency Hemangioma your issues at National Council meetings and to make sure you (also known as Cori’s or Neurofibromatosis Type 1 are heard. Your branch representatives and their contact details Forbes’ Disease) Neurofibromatosis Type 2 are as follows: Mitochondrial Myopathy Schwannomatosis (including MELAS, MERRF, Northern Branch Canterbury Branch Tuberous Sclerosis NARP and MIDD) Michael Schneider TBC Von Hippel Lindau Syndrome [email protected] [email protected] Phosphofructokinase Deficiency (also known as Tarui’s Disease) Central Branch Southern Branch Tristram Ingham Mike Nolan Phosphorylase Deficiency (also [email protected] [email protected] known as McArdle’s Disease)
Should you have a query regarding a condition not listed please contact us on 0800 800 337 or email [email protected] Help us raise money without spending a cent. You have the power!
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