NEWSLINK JUNE2021 - Ben's road to medicinal cannabis - Spire
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
NEWSLINK JUNE2021 PAIN FEATURE: Ben's road to medicinal cannabis FRUSTRATED WITH TICKETEK? SEIZING ADVENTURE MORE THAN A CAR THESE TIPS MIGHT HELP WHENEVER I CAN
AQA VICTORIA LTD ABN 90 006 691 185 NEWSLINK JUNE2021 VOLUME 36 NUMBER 3 ADDRESS 416 Heidelberg Road Fairfield Victoria 3078 COMMUNITY NEWS AND UPDATES T 03 9489 0777 03. CEO message T 1800 999 128 04. The UK has an app that helps you refuel. We should adopt it too F 03 9482 4371 04. Learn to fly! E admin@aqavic.org.au 05. Frustrated with Ticketek? These tips might help W www.aqavic.org.au 18. Community networks - Mornington and Gippsland 19. Classifieds POSTAL ADDRESS PO Box 219 LEISURE AND TRAVEL Fairfield Victoria 3078 06. Seizing adventure whenever I can BOARD OF DIRECTORS 07. Dance & Roll turns two in style CHAIRPERSON: FEATURES Michelle O’Sullivan TREASURER: 08. Ben's long and winding road to medicinal cannabis Alasdair McMillan 14. More than a car COMPANY SECRETARY: David Schreuder RESEARCH AND TECHNOLOGY DIRECTORS: 13. Walking with an exoskeleton Dave Jacka Kylie Thitchener ACCESS AND INCLUSION Joe Rose’Meyer Brydie Quinn 16. National building code to enforce wheelchair access 17. Your new accessible parking scheme NEWSLINK EDITOR: Nazim Erdem We love contributions from our community! PRODUCTION EDITOR: Dan Nathan If you have an experience you would like to share, or a story you would like to tell, please get in touch. BRAND, COMMUNICATIONS & MARKETING COORDINATOR: Ian Baker Not a confident writer? No worries - we can help shape or edit your story. Below are this year’s contribution deadlines for the upcoming editions of NewsLink: August: Monday 19 July October: Monday 13 September For further information: t 03 9489 0777 e info@aqavic.org.au Spire NewsLink is the official newsletter of AQA Victoria Limited (AQA), and is published bimonthly. Spire NewsLink seeks to publish material of interest to people experiencing issues in life arising from a spinal cord injury or other physical disability, their family and social networks, clinicians, professionals and other organisations with an interest in this community. Spire NewsLink welcomes content for publication. Content will be published at the discretion of the Editor who retains the right to edit all submissions as they see fit. Information in Spire NewsLink is furnished solely as a guide to the existence and availability of goods or services. Any opinions expressed in Spire NewsLink are not necessarily those of AQA or the Editor. Original material in NewsLink can only be reproduced with permission from the editor. Donations towards production costs are greatly appreciated. Copyright © Spire. All rights reserved. 2 .org.au NEWSLINK JUNE 2021
C E O M E S S AG E Thank you for sharing Welcome to NewsLink, presented in this issue with a refreshed look and feel. As always we welcome your feedback, suggestions and contributions. For many years, Newslink has taken a What, So What, and Now What approach to content. We believe the value of Newslink is to include all kinds of Information (the What) that is likely to be of real In a candid and measured account, Ben shares his interest to many in our community, personal experience of chronic pain and a path via but then to make sure we give it various medications and therapies to eventually Context (the So What), often through commencing medicinal cannabis. For Ben, and the lived experience of people, and clearly also for his wife, Christine, this has been a finally to include wherever we can game changer. a comment about where to find out more, how to get involved, or more We were pleased that as we sought to add context generally, where a topic might be for Ben’s story, Dr Andrew Nunn at Victorian headed (the Now What). Spinal Cord Service was available to share his own considered response, including some of With this in mind I’d like to highlight a the challenges arising from the application of a feature story in this issue connected substance where the law in Victoria, now more with pain management, as it’s a great than five years old, has in some ways got ahead of example of what we hope is of real the science. value to our community. Andrew illuminates the Now What well, observing The information is brought to life that people’s personal experiences can serve to by AQA Peer Mentor Ben Gruter, necessarily and importantly open up an issue, even who shares his lived experience of a if it’s tricky. common issue following an SCI that can affect people’s living well, that These are the kinds of conversations that move being chronic neuropathic pain. things forward, so thanks to Ben and Christine for sharing this aspect of their lives, and thanks to Andrew for additional context and his interest in the question. PETER TRETHEWEY CEO AQA VICTORIA NEWSLINK JUNE 2021 .org.au 3
C O M M U N I T Y N E W S A N D U P D AT E S LEARN TO FLY! THE UK HAS AN APP THAT HELPS YOU REFUEL. WE SHOULD ADOPT IT TOO By downloading an app, people who use wheelchairs could convince petrol station operators to make refuelling easier, writes VICTOR BIBBY. People living with disability can access filling assistance at many petrol stations in the UK, thanks to an award-winning phone app that is available in Australia. While we can get the app here, it won't do much for us without support from our fuel companies. I'd like everyone who needs help with refuelling to download the app, so that we can show fuel suppliers that Wheelies with Wings is a non-profit people want them to use it. group that offers people with lower limb impairment the opportunity to The app, called fuelService, was learn how to fly aeroplanes. developed and launched about 2019 by Niall El-Assaad, who lives with Their next training program starts spinal cord injury. In countries where companies here. But none had yet on 26 September, and goes for two it has been adopted, it helps service shown significant interest. weeks, in Temora, NSW. station attendants provide driveway He said the best way to get their To be eligible for the program you service to disabled drivers. attention would be to demonstrate must be able to drive a modified car. Mr El-Assaad says people in the UK strong interest from your community. The price is significant, at $5250, but can now use the app at 29 per cent The app helps you find the nearest you are strongly encouraged to apply of petrol stations, including outlets registered service station, and make for their Suzi Duncan Scholarship. operated by Shell and other major an appointment for refuelling at a If you qualify, accommodation and suppliers. The app is also used in convenient time. You arive confident meals are covered, as well as the Ireland, Canada, and the USA. they will be able to help you, and you fifteen hours of flight time in a two- My son has been living with spinal simply enter your pump number. The seater Foxbat aeroplane, and the cord injury from an accident early attendant comes and fills your tank, preparatory training. last year. He brought the difficulties and you pay from your car. An alternative would be to fund the of refuelling close to home after he I would like to contribute to my son by program through the NDIS, via your made a journey from Bendigo to visit encouraging people here to download Capacity Building Supports budget. me recently. the app and register to use it. To learn more about this option, visit I recall how his face fell at what a trial Search for fuelService at the app their website at: it had been getting fuel, and his later Store (for iPhone users) or on Google www.wheelieswithwings.com.au. remark that being so close to fuel Play (for Android phone users), and Applying for the program, and for fumes nearly gave him a “fix”. download it. Both methods ask for the scholarship, is a quick and easy I had learned about this app from your phone number, so as to minimise process. Visit the website listed above a Shell promotional video. I asked fraudulent use. to get started, or to find out more. myself why it wasn’t used in Australia, There would be nothing more and contacted Mr El-Assaad. powerful than thousands of voices He told me that anybody in Australia saying to the fuel suppliers: “Give us Wheelies with Wings could download the app, and that last fuelService - we are ready, when are year he had shown it to major fuel you going to be?” is a non-profit group that offers people with lower limb impairment the opportunity to learn how to fly aeroplanes. 4 .org.au NEWSLINK JUNE 2021
C O M M U N I T Y N E W S A N D U P D AT E S Frustrated with Ticketek? These tips might help AQA Peer Mentor Geoff Dossetor is a keen fan of AFL team the Hawks - and a club member. But this year, getting to see them play at the MCG has been a frustrating process. Ticketek manages the ticketing for AFL games at the MCG. Buying an able-bodied ticket through Ticketek is an automated, online affair. Buying a wheelchair accessible ticket is not. Ticketek’s website advises you to fill out and submit an Accessible Seating booking form, and wait for a phone call. Alternatively, you can phone Ticketek’s Accessible Seating booking line. After submitting the Accessible Seating booking form, how long should you expect to wait for a call-back? Geoff says that in one case, he waited more than two weeks. He tried the Accessible Seating booking line, For Geoff (right), getting tickets to see his beloved Hawks and spent an hour on hold. But after a missed call-back, play this year has been a trial. and emails to customer care, Geoff did get accessible seating for all the games he wanted to see. A Ticketek spokesman noted that the agency had been managing more AFL bookings than usual due to Covid-19 When AQA/Spire staff raised the question of booking with related restrictions on venue entry. Ticketek in an online SCI forum, they got similar feedback. Steven Ribarich, booking for AFL and soccer games at the However he stated: “We have secured accessible seats for MCG and AAMI park, reported that "In approx 20 games, every customer who has requested them since the new they have not got it right once". Sue Stevenson shared that Government requirements.” when calling Ticketek's Accessible Seating line, she is on hold for no less than 30 minutes, every time. Here are six tips Ticketek offered for a smooth booking experience: The NewsLink team got in touch with Ticketek and asked if they could offer any advice on how our community might • We recommend that customers with accessibility needs better navigate their booking process. It turned out they complete a form over calling because the customer can could, and their response offers some insight on how to receive a call back at their convenience instead of spending reduce the frustration. time on hold. • Keep an eye on your club’s emails and social media feeds Perhaps the key tip is this: use the Accessible Seating for the date and time that your tickets go on sale. booking form, but resist the urge to submit it before tickets • As with ticket sales for all customers, our Accessible to your event are officially on sale. team will prioritise the first customers that get in touch once the tickets go on sale, so that is the optimum time to Ticketek say they can’t secure you a ticket before the on- fill in the form. sale date, and their accessible booking team prioritises • But regardless of that, every customer who filled in an people who submit an Accessible Seating booking form accessible seating form WILL be contacted by us to arrange after the on-sale date. a booking. • We have secured accessible seats for every customer However, Ticketek says that even if you submit the form that has requested them since the new Government early, they will still call you back - after the tickets go on requirements. sale. It’s just that you won’t necessarily be at the front of • Please be patient once you have contacted us. We WILL the queue. get back to you before the event to book your seats. NEWSLINK JUNE 2021 .org.au 5
L E I S U R E A N D T R AV E L Seizing adventure whenever I can JOHN OSMOND has been seeing friends and family this year, and going on adventures. While it's required some nerve to make plans that could be covid-cancelled at any minute, John has found the payoff more than worth it. Being a quadriplegic is limiting enough without having to deal with Covid. Being a resilient, optimistic person, I decided not to let the threat of a lockdown scare off my travel plans for 2021. Let me start by saying these plans have only been made possible by a very supportive wife, and an excellent carer network. Our first trip was in early March. We went to Adelaide to visit our son and his wife, and our two grandchildren. We had not seen them for 16 months. We decided to play it safe by driving there and back, just in case Dan pulled one of his quick border shutdown tricks. We had a very good drive, both ways. My wife and my John and Aileen on a previous trip to Mossman Gorge - Daintree Forest. carer shared the driving. We always stay at the Stamford have ever stayed in. The first bedroom Later in April we went back to stay Grand hotel in Glenelg, as my son’s had two king single beds and the a couple of nights at the Provincial house does not have an accessible bathroom was huge, it had a great Hotel, and had an excellent time. We bathroom. Stamford has a number of shower, room enough to hold a dance found that as well as the facilities accessible rooms on the third floor, so party, and a spa bath that my wife being really well suited, the owners, we have always been able to book the enjoyed. The second bedroom had a Gorgi and Michael, and their staff, dates we request. As usual we hired queen size bed and an en suite. The were excellent hosts. They provided the equipment we required locally, unit itself was 82 square metres and us with a local map and showed us and they set it up before we arrived, included a dining room and lounge. what to do in the immediate area. and removed it when we left. John couldn't reccomend the Provincial Hotel in Ballarat highly enough. Having driven across we had access to the vehicle, which gave us the freedom of going on day trips and visiting some of the wine regions. Considering this benefit, we will probably drive in the future when the distance is manageable. In early April we went up to Ballarat, to visit our friends. We had lunch with them at the Provincial Hotel. It was an excellent meal, reasonably priced, and no problem with accessibility for me. When we were there we asked if they had accessible accommodation, and it turned out that they had two- bedroom apartments. The unit was the best accessible accommodation I 6 .org.au NEWSLINK JUNE 2021
L E I S U R E A N D T R AV E L I cannot recommend the Provincial DANCE & ROLL TURNS TURNS TWO IN STYLE Hotel highly enough. That night we went to dinner at the historic Craig’s Hotel, well suited to a wheelchair, with a delicious meal, at pub prices. The next day we went to Daylesford, where we enjoyed pottering around before going out to dinner back in Ballarat at a lovely tapas restaurant called Meigas, around the corner from our hotel. When the weather warms up again we are going back to my Dancers don't need wings to fly. We just need our wheelchairs, and the favourite resort. desire to express not impress. The para-dance club Dance&Roll celebrated a second anniversary in On the way home the next day, March with a Gala Night at Darebin Art we called into Ballan to get some Centre. materials for my wife’s quilting exploits. When I was enquiring about It was a night of joy and gratitude, and a perfect opportunity to thank the my hire equipment requirements I generous people who have contributed in so many ways over the past two came across ILS, Independent Living years. Systems, and was able to hire a king The journey started at Royal Talbot Rehabilitation Centre, when Salvatore single bed with five functions, which Dema, Manager of Leisure and Creative Therapies, kindly allowed three is equivalent to my own bed. This was passionate girls to use a meeting room as a dance studio. the first time I’ve had a great sleep in This was the space where we started the first para dance club in Victoria a hire bed. run by, and for, people with physical disabilities. The Latin music and For our next trip we'll be going to good vibes brought many patients from the spinal and amputee wards Hamilton in Sydney, at the end of onto our makeshift dance floor each Thursday. July. We will be staying at a hotel After six months the group had grown, and in October 2019 we moved to just around the corner from the Lyric a beautiful accessible studio at Darebin Arts Centre - with the support of Theatre. We will make a weekend Darebin City Council, VicHealth and “This Girl Can” Victoria. out of it, not exactly sure what we'll do, but I’m sure we'll find something In 2020, due to the Covid 19 lockdown, D&R delivered dance sessions worthwhile. online – dancing apart in our homes but together as friends and sharing our challenges. When the weather warms up again we are going back to my favourite resort Incredibly, during that time the group grew. The online sessions provided in Port Douglas, probably sometime opportunities for those living in regional areas or other states to join in. in September. We'll be flying Qantas, We now have members from Geelong, New South Wales, Tasmania and as I always find them the easiest. This Queensland. time we are flying in an A320, which For some of us, the Gala Night was extra special as it was the first time is new to me so I hope the accessible we’d met in “real-life”. It was very emotional to meet and hug. seating is as good as the 737. We also Among our guests were many of the helpful people who’ve supported hire an accessible van (Kia Carnival) D&R, including representatives from AQA/Spire, Independence Australia, while we’re away, as it's just easier DSR, and AAAPlay. to have it there rather than relying on accessible hire taxis. Of course, the evening concluded with a performance. We included our favourite choreographies, danced to “We are Family” by Sister Sledge, I hope that this has motivated you to ”The Nutbush” by Tina Turner, and “Celebration” by Kool&the Gang. plan something over the next year, it can still be done. Good luck. Rocca Salcedo John Osmond NEWSLINK JUNE 2021 .org.au 7
F E AT U R E Ben’s long and winding road to medicinal cannabis After years of awakening early and in pain, Ben Gruter swallowed some cannabis and slept for 10 hours. The former policy advisor to government now takes cannabis daily - and legally. It is 85 years since an American film Persistent pain mentor with AQA/Spire. warned parents about the reefer One such Australian is former “It feels like the most intense pins and madness that lay in wait for their academic and state government needles you’ve ever felt. Some people children. policy adviser Ben Gruter, 65, who has describe it as burning. It is nearly 30 years since former been living with paraplegia from an “It’s constant from the moment I wake US president Bill Clinton denied he incomplete T5 spinal cord injury since up until the time I go to bed. Stress will inhaled the marijuana he had admitted 2012. make it worse; being relaxed makes it to trying. When he resolved to try medicinal better.” And it is a little more than five years cannabis, Ben had spent seven years Surveys indicate that more than half since the Access to Medical Cannabis experimenting with other treatments of people living with spinal cord injury Act 2016 passed in Victoria, making for his persistent neuropathic pain, live with neuropathic pain. it the first Australian state to legalise which arrived with his injury. He therapeutic use of the controversial experiences the pain as located in his Prior treatments drug. Other states have followed. right leg, extending from his hip to his Ben spent 16 months in treatment In Victoria, any doctor may apply to foot. and rehabilitation after his injury, prescribe cannabis for any condition. “It’s pain caused by damage to the which arose from a bleed in his spinal However, it is not likely that your nerves,” explains Ben, who is a peer column. Initially he was given Panadol local GP will do so, and for three main reasons. First, almost no cannabis preparations have been registered as prescription drugs. Second, little is established about what ailments cannabis might help with, and how. Third, a common ingredient of medicinal cannabis, THC, is classed as a Schedule 8 poison and a drug of addiction, like morphine, methadone and amphetamine. Therefore a doctor must seek authorisation before prescribing it for you, and may perceive the approval process to be very onerous. Nevertheless, a Senate inquiry was told early last year that more than 19,000 Australians had been prescribed medicinal cannabis, and there is evidence that the number has risen rapidly since. More relaxed: Christine and Ben. 8 .org.au NEWSLINK JUNE 2021
F E AT U R E Wonderful time: At the Botanic Gardens in Singapore. for his pain, and when he sought more “The partner or other family members slow-release formulation. relief he was prescribed an opioid, of someone with a spinal cord injury “When Ben did go off all the drugs, it Oxynorm, and a pregabalin based anti- are also severely affected by it,” wasn’t living,” Christine says. anxiety drug, Lyrica. Christine observes. “The pain is so consuming he just can’t “By 12 months it was pretty clear that “I think for me, the worst of it has been do anything. He doesn’t want to go out. not only weren’t these drugs working, Ben’s pain. Seeing him in pain has just He doesn’t want to communicate with but I was having terrible side effects,” been horrific. anyone. He can’t stand the grandkids Ben reports. “And the effects of a lot of the coming in because they’re noisy.” Under the care of a pain team at the medication he was given have been It was Christine who suggested to Ben Austin Hospital, he tried alternative awful.” that he might try cannabis. The topic opioids, three anti-depressants, and Memory loss is a recognised side- had come up in conversation with ketamine, an anaesthetic. He says his effect of pregabalin. Christine says a friend whose husband also had a pain remained very troubling, except conflicts arose at home from Ben’s spinal cord injury. when the ketamine put him to sleep. memory lapses. “My friend said it had been helpful,” Subsequently, Ben was treated by a “We would have a specific Christine recalls. “And her husband multidisciplinary team at the hospital’s conversation about something, and the said it was helpful. outpatient pain clinic, finding some next day Ben would deny that we even relief in hydrotherapy and in the “So we met up and had a discussion, discussed it,” she reveals. “I actually the four of us.” cognitive behavioural therapy offered just thought he was being difficult.” by the team’s psychologist. Absolutely fantastic “Unfortunately they could only have I know a friend “I’d seen the press reports,” says Ben, me as a patient for six months,” he Ben says he sought to reduce side- who like Christine had been exposed explains, “because it’s a high demand effects and cut his risk of addiction to the recreational use of cannabis service.” by decreasing his consumption of when he was younger. painkillers, in consultation with his GP. “Some medical practitioners said it’s Marital conflict very helpful. Other practitioners said For a few months he took no drugs When he was injured, Ben had been at all. Today he takes no pregabalin it’s not helpful, and all the evidence married for just four and a half years, and no Oxynorm, instead using an isn’t in. to Christine. alternative opioid, tapentadol, in a “I went into it with an open mind.” NEWSLINK JUNE 2021 .org.au 9
F E AT U R E Soothed: Christine and Ben embark on their overseas adventure. About bedtime one evening, Ben used believed to have therapeutic value “My understanding is that a typical a dropper to administer himself a small (some THC may be present). joint is about 10 milligrams of THC,” dose of black-market cannabis oil, After interviewing Ben and reviewing Ben says, referring to the recreational orally. his history, the clinic prescribed him user’s cannabis-infused cigarette. “I “For years I’d been sleeping about CBD, advising him to increase the dose take 6.25 milligrams of THC. So this is three hours each night before I woke each week until it was effective. probably a little bit more than half a up in pain,” he says of the result. joint. “When I wasn’t getting a good enough “That first night when I took cannabis, I effect, they added THC,” Ben reports. “On the dose that I take, I don’t get slept for 10 hours. high. If I was taking a lot more I would. “It was absolutely fantastic. “It does make me drowsy - both the CBD and the THC make you drowsy. It “I got a little high, and I got a dry "The way I would tastes terrible. And I have a dry throat. throat. I didn’t get munchies.” Christine adds: “And he woke up like a describe it, it’s like “I don’t know what would happen if I human, instead of a pain unit.” the pain has been tried to really suppress the pain and take a lot more of it. I don’t want to try Obtaining medicinal cannabis moved a bit away that, because I think I’d just fall asleep. So what’s the point of that.” About the beginning of 2019, Ben from you." sought a prescription from his GP Hello Singapore! for medicinal cannabis. He says his From Christine’s perspective, the doctor told him he would help, but therapy has been transformative. then concluded that the approval and The cannabis comes from a Melbourne follow-up requirements would be too compounding pharmacy in tablet- “I would say within two or three burdensome. Instead, the GP wrote a sized resin lozenges, by registered weeks, Ben was engaging,” she says. referral to the specialist clinic that had mail. The lozenges are packed in small “He was engaging with me, where he treated Ben’s acquaintance. plastic containers that carry Ben’s had been quite withdrawn before. He prescription details. (The medication was engaging with the grandchildren. Medicinal cannabis typically comes He was engaging with friends. We is available in other forms.) in two forms, only one of which relies were going out. We were socialising. on THC - the component credited He takes half a CBD lozenge orally, with producing euphoria. The active twice a day, and then a THC lozenge at “Within six weeks of him starting it, we ingredient of the other form is CBD, bedtime. had our first overseas holiday. Our first which does not produce a high but is in seven years!” 10 .org.au NEWSLINK JUNE 2021
F E AT U R E A drug is a drug Medicinal cannabis is not subsidised under the Pharmaceutical Benefits Scheme, and Ben’s prescription costs the couple about $500 a month. That’s significant for them, and they’re aware it would be out of reach for some people. They would like to see medicinal cannabis become available more cheaply and more readily. Ben would also welcome changes to traffic law. Driving under the influence of THC is illegal, and unlike alcohol no threshold is specified. “I’ve heard stories of people who won’t take THC because they’re afraid for their licence,” Ben says. He adds: “I take a very, very small dose, and that’s also worth saying. It is possible that I will need a higher Ben takes the cannabis orally, via lozenges. dose in the future. But I don’t need it now. The couple spent a week in Singapore, And he says the benefits have “And I’ve gotta say that although I’m testing Ben’s capacity to make a flight continued. a fan of cannabis - it’s probably the twice as long to The Netherlands, “The way I would describe it, is that most benign of the drugs that I take where he was born. it’s like the pain has been moved a bit for pain - it would be nice to get to a “We had such a wonderful time. We away from you. So you’re not focused stage where I didn’t have any drugs, were out every day. We couldn’t take on the pain any more. and could just rely on physiotherapy the cannabis with us, but it took four and psychological pain management “The pain’s still there, perhaps level days to wear off and then Ben still had systems.” four rather than level six on a scale of his opioids.” 10, but it’s better. It’s not in your face.” Ian Baker Prior to starting his cannabis therapy, “And it’s not on his face,” Christine Ben says, “I wouldn’t have dreamt of says. “He’s a lot more relaxed.” doing that trip.” Personal account opens up a can of worms Commentary on Ben's story from Dr Andrew Nunn, Medical Director, Victorian Spinal Cord Service, Austin Health. Thank you Ben for your measured The legislation on medicinal cannabis however there is a critical lack of personal insight on your careful use seems to be ahead of the science and evidence that it provides a consistent of cannabis for pain following spinal a spectrum of issues and views. benefit for any type of chronic non- cord impairment. Here is some commentary on the cancer pain. Your personal account raises some topic from the Australian Pain More than 90 per cent of Special issues for us all - and maybe very Society, a multidisciplinary not- Access Scheme – Category B (SAS-B) necessarily opens up this can of for-profit organisation that seeks approvals have been for chronic pain worms. optimal access to pain prevention of various types. It is important that we do this, but and management for all people (date The evidence available is either it is also tricky. We need to develop reviewed: 19 March 2021): unsupportive of using cannabinoid a balanced view so that people Cannabis-derived products are now products in chronic non-cancer pain with spinal cord injury, and those available for use with therapeutic (CNCP) or is of such low quality that prescribing and funding the use intentions in Australia and New no valid scientific conclusion can of medicinal cannabis, are well Zealand. By far the most common be drawn. Cannabidiol-only [CBD] informed. reason for their use is chronic pain formulations have not been the NEWSLINK JUNE 2021 .org.au 11
F E AT U R E Personal account opens a can of worms CONTINUED subject of a published randomised controlled trial (RCT) for pain indications, yet they are the most prescribed type of product. In addition, evidence of harms does exist, particularly in relation to sedative effects, interactions with other medications, and neuropsychiatric effects (for products which contain tetrahydrocannabinol [THC]). Ben, I believe we need to bring fresh eyes and an open mind as we consider the many views that are out there, and your thoughts as well. Given the above, the clinical use of cannabinoid products cannot be ethically recommended outside a properly established and registered clinical trial environment until high- Concern about overprescription is legitimate, Dr Nunn believes. quality evidence for specific indications is published. ▬ P hysiology is complex. There and resist the assumption that we I see in this cautious approach are many receptors in every can procure a “quick fix”. legitimate concern about the body system, hence multiple ▬ Commercial drug costs and possibility we will create a new applications (pain, spasticity, sleep, marketing are becoming a major problem relevantly similar to the over and so on). influence. prescription of OxyContin and other ▬ Cannabis can have many positive ▬ Prescribing cannabis is tricky, and opioids for pain management in the and negative effects, so a balance is subject to laborious follow-up United States, if less deadly. So we is needed. requirements. must think broadly. ▬ Smoking is clearly not the best ▬ Use of medicinal cannabis has Here are 12 points that deserve our way to administer, and other functional considerations for attention: options such as oral, nasal or skin driving and work. absorption contribute variability, in ▬ Research trials show varied results ▬ T here are well over 1000 cannabis both absorption of the medication and for limited numbers. strains available plus now many and duration of action. Our Spinal Cord Service explored plant hybrids. ▬ There are many types of spinal cord evidence and trial protocols with ▬ Production methods for injury, so the optimal dose will be industry pre-covid, and hope to therapeutic use are variable, with very individual and time of action understand this better through many derivatives for each plant variable - plus placebo effects must starting a trial on therapeutic use for depending on fractionation method be considered. spasticity. - and even synthetic THC available. ▬ Cannabis would often be used in ▬ Cannabis formulations usually Ben, I believe we need to bring fresh combination with other agents. As combine CBD and THC, and these eyes and an open mind as we consider Ben has recognised, it is important can be supplied in many different the many views that are out there, and that we look at eclectic approaches proportions. your thoughts as well. 12 .org.au NEWSLINK JUNE 2021
RESEARCH AND TECHNOLOGY Walking with an exoskeleton Brad Axford has been working with a team of graduate students at The University of Melbourne to develop an exoskeleton. He spoke with DAN NATHAN. The last edition of NewsLink carried a story on the journey of Team ALEX (Advanced Lower-Extremity Exoskeleton), from research and development to frustrated hopes of competing internationally in a recent contest known as CYBATHLON. So, what are exoskeletons like to use? And what benefits might they offer? Chief pilot for the project Brad Axford offers some insight. Who is Brad? Brad has been living with a T12 complete spinal injury for the past two years. He's worked as a massage therapist for most of the last 20 years, working with the human body and learning how to heal it. Brad is also interested in technology, so when it came to a project like this, he jumped at the chance to be involved. What are exoskeletons? Exoskeletons are wearable electromechanical devices that can enhance the strength or stamina of an able-bodied user, or allow people with limited Brad controls the exoskeleton via a trigger on one of the crutches. mobility to simulate walking. While the technology has been rapidly improving, exoskeletons are a long way from being accessible and "It felt good, but very foreign. It was an interesting effective mobility aids. They're very expensive ($40,000 - sensation, being up without any feeling in my lower body. $100,000), slow moving (average speed of 0.26 metres per "It felt very unsafe, very unstable. But I had the crutches second, compared to average walking speed of 1.2 m/s), and the spotters around me. Once I got used to the and they struggle to move across uneven or sloping terrain. sensation of moving it was more comfortable." As tools for rehabilitation, though, promising results are To pilot the exoskeleton, Brad selects one of three modes emerging. - walk, stand up, or sit down - via a switch on one of the What are they good for? crutches. Once a mode is selected, he pulls a trigger to execute the movement - a single step in the case of walk "Obviously there are lots of health problems that come mode. from sitting so much of the time - using an exo can help with some of them," says Brad. The trick, according to Brad, was anticipating the way in which the exoskeleton would move. "The weight bearing is great for bone density and strengthening. Your muscles and ligaments are all going to "Once I could do that, I could stay balanced throughout the benefit from getting that kind of movement and stretching, movement, rather than trying to catch myself afterwards. and from the different load patterns on the body. The result was a much more rhythmic and fluid gait. "Having limbs moved for you, or moving them with "It was a great feeling when I first started hitting that assistance, also has great implications for neuro rehab - rhythm." for the body relearning what to do after injury." What's next? What do they feel like? Brad is looking forward to competing with the rest of "It was quite weird initially", says Brad, describing the first team in a Melbourne competition in 2022, and hopefully, time he stood up in the exoskeleton. It was nine months internationally in 2024. post-injury. NEWSLINK JUNE 2021 .org.au 13
F E AT U R E More than a car What matters most when you’re choosing a car? Wayne Bradshaw reflects on nearly 30 years of driving an allegedly unsuitable vehicle. My 1983 One Tonner Holden ute was my car back in 1992, Another guy we’d been in rehab with, Hue Yew, was staying when I had my accident. I had converted her to gas, and at in supported accommodation in Shepparton. With much 300,000km she was on her second motor. trepidation from Zac’s parents, both our chairs were loaded on the back of the ute and Zac and I headed for Shepparton. I had been strongly advised that driving a single-cab ute while living with paraplegia from a complete T4 spinal cord When we got there, we rang the staff to help us unload the injury was not practical, because it wouldn’t give me much chairs. We had a great day catching up with Hue. On the space for storing stuff in the cabin. way home, we managed to get some gas after prompting the operator at a service station to come out and help us. I remember thinking: Just let me see if I can make it work. I didn’t take long to become comfortable driving my Tonner. I loved the anonymity I had behind the wheel. In the early 2000s, after Of course there were challenges. Getting the chair in beside me was tricky, but I worked out a way. 580,000km, I reconditioned the Before my accident I was restumping houses. When I second motor. went back to work, I would drive the boss around while we quoted. I loved this because it fast-tracked my driving skills. It was a lot of fun. I often felt a sense of accomplishment In the early 2000s, after 580,000km, I reconditioned the when I went on a road trip. second motor. It never entered my head that I would With frequent solo drives to Echuca to see my son Ben, I sell her. About the same time, I left my quoting and was racking up the kilometres. The tonner continued to bookkeeping role with the restumping business and purr, and rarely let me down. started work at AQA. There was one let-down that I will mention. Zac’s parents I had struck up a friendship with a quad from Mickleham brought Zac and his brother Michael to my place on a who I’d met in rehab, Zac Carr. We both supported the Saturday, to watch the footy and stay the night. I was to Tigers, and would catch up every Saturday at the footy. drive them both home the next day. I left my chair at home, CAR MODIFICATIONS The NDIS says that vehicles less Especially as it can take months AND THE NDIS than five years old, and having before you get a response. travelled fewer than 80,000km, are In my experience, getting an generally considered suitable to assessment from an NDIS registered Noha Elhanafy modify. AQA NDIS SUPPORT COORDINATOR occupational therapist who But it adds: “However, older vehicles specialises in car mods really helps. Wayne will need to have his new and those with higher mileage may ute modified, so that he can drive it Reports from the OT need to include still be considered where there is justification for why the expenditure without using his feet. Given that he evidence that their modification is an NDIS participant, how would is reasonable and necessary. If that’s would be cost effective.” not clear, your application might be he go about seeking funding for that? You can see that the NDIS wants delayed or refused. your modified car to give long and It also helps to follow up an inquiry You’ll find an overview on the NDIS reliable service. How do you know website at its Vehicle Modifications regularly with your NDIS planner. whether the older car you have your page, which is here: eye on would be acceptable? A participant I have assisted applied www.ndis.gov.au/participants/ in advance for vehicle modification, It can be tricky to decide whether and received approval from his assistive-technology-explained/ to purchase the car first and hope vehicle-modifications NDIS planner last month. He is now for the best, or to seek approval confident about purchasing the car. from your planner before you buy. 14 .org.au NEWSLINK JUNE 2021
F E AT U R E The vertical exhaust stacks were a signature part of the Tonner's look . and Michael put Zac’s chair in the tray. truck-style vertical exhausts behind the cab was raising a rude middle finger to the parking rules. But then I'd unload I dropped off the brothers and headed home the back my chair, and push into the shops. way. As I crossed a a single-lane bridge heading into Hurstbridge, a bolt fell from the hand controls and left me When I was jumping back into my ute, sometimes someone without an accelerator. I rolled off the bridge and pulled - usually an older man - would run over and try to grab my over. chair from me. I asked a bloke walking past to help me reattach the bolt, I would say, “Mate, what are you doing?” but he was not having a bar of it. If I was a paraplegic, he “I am putting the chair on the back for you!” he’d reply. asked, where was my chair? He didn’t believe it was at “Ok mate, are you going to follow me home to get it off as home in my carport. well?” “Look at the size of you! I don’t know what you’re going to “No.” do to me!” he said. I had to call the police, who came and helped. “Well leave it then, because I have to pull it apart and drag it in beside me.” My would-be helper would stand and watch before walking away and leaving me to it. If I was a paraplegic, he asked, I became very attuned to her noises. Driving home from work one Friday, I got anxious about a developing clunking where was my chair? He didn’t sound from the chassis. believe it was at home in my As I was backing into my carport, a front wheel fell off. carport. She’d made sure I got home before letting go. The Tonner was fast approaching 800,000km when I drove with my son Ryan to attend the wedding of my son Ben, at The car was getting old, but it rarely broke down. The Echuca. She purred all the way up and did not miss a beat interior was very damaged, but I didn’t care. I just loved her on the way back. and felt lucky to have such a reliable car. Soon afterward she started to run really rough, so I booked I only ever topped up the oil and made sure she had water. her in with Chris, a mechanic I knew. That night was the Eastland was my preferred shopping centre for groceries. opening round of the 2021 footy season, and I was going I would be amused by the glares I often got as I drove into a to see the Carlton-Richmond game with Bill, a bloke who disability bay. Surely this rough looking ute with its with its continued on p.16 NEWSLINK JUNE 2021 .org.au 15
AC C E S S A N D I N C L U S I O N National building code to enforce wheelchair access Builders of new housing may be forced for the first time to meet access standards for people who use wheelchairs, under revisions to the National Construction Code released for public comment last month. The result is a big win for the Building Better Homes campaign, a coalition of groups who have argued that existing voluntary accessibility standards have been too IT REQUIRES: often ignored. ▬ A continuous and step-free path from the street or The inclusion of mandatory minimum standards in the draft car park, and at least one step-free entrance to the 2022 code follows a favourable majority vote from federal, dwelling. state and territory building ministers at a meeting in April. ▬ Minimum widths for entrance doors, passages and halls. The public comment period ends in July, and it is expected ▬ Toilet on ground-level, with spatial requirements. the code will come into force in September next year. ▬ A shower with step-free entry. It is up to state governments to decide when and how to ▬ Reinforcement of walls to toilets, baths and shower for enforce compliance with the national code. future installation of grab rails. The 2022 code’s minimum standards are based on the Building Better Homes has argued that only 5 per cent of Silver standard for which builders can currently seek new homes built in Australia comply with Liveable Housing accreditation under Liveable Housing Australia voluntary Australia guidelines. Australians living with mobility guidelines. Silver is the most basic level; the others are impairment make up 12 per cent of the population - a figure Gold and Platinum. set to grow as our population ages. More than a car CONTINUED got around on a mobility scooter. Chris adjusted the gas mixture and I headed off to get ready for the footy. It was sadly the last time I drove her. Before I’d got far I heard BANG BANG BANG! A tow truck was called, and Chris put me onto a backyard mechanic friend, Tim. I told Tim to pull out the old motor, recondition it, and put it back in. Tim pulled the motor and called me. He said I could throw $10,000 at it and still not fix it. The power steering was shot, the suspension was shot, and the pistons were rounded off and couldn’t be machined. OK, I thought, it’s time to get another car. I sold the tonner to a friend who was looking for a car to restore, and who had the resources. Two weeks later I bought my new car. It’s a 2010 Holden Ute. Wayne with the Tonner's successor. Wayne Bradshaw 16 .org.au NEWSLINK JUNE 2021
AC C E S S A N D I N C L U S I O N YOUR NEW ACCESSIBLE PARKING SCHEME The accessible parking permit scheme in Victoria has been revised for the first time in 26 years. ONLINE APPLICATION There are three permits under the new scheme: The application is now an online process on the the Australian Disability Parking (ADP) Permit, for VicRoads website. individuals and organisations, and the Victorian ▬ S tart your application online at www. Double Time Permit. accessibleparking.vic.gov.au Disability advocates have welcomed the changes, ▬ You will receive an application reference expecting a significant increase in the fairness and number via SMS effectiveness of the scheme. ▬ Take your reference number to your GP or Occupational Therapist ▬ GP or Occupational Therapist will complete an THE IMPROVEMENTS TO online assessment and submit application THE SCHEME INCLUDE: ▬ Your local council will review the application ▬ Y ou are now able to receive a permanent ▬ If your application is successful, your permit classification, instead of having to provide will arrive in the mail. Otherwise, you will an assessment from your GP confirming your receive a letter explaining the reasons for disability when you renew your permit. declining your application. ▬ In addition to your GP, Occupational Therapists are now authorised to be assessors. ▬ Permit length will go from three years to five. ▬ The eligibility for permits is now determined PAPER-BASED APPLICATION by state-wide criteria, removing the previous inconsistencies across councils, and reducing A paper-based version of the application is misuse of permits. available for people without access to a mobile ▬ You'll only need to apply for one permit, from phone or the internet. Paper-based applications one source, instead of applying to each council are slower than online permit applications or you want to park in. renewals. The forms are available from your local ▬ Temporary permits will be introduced, for 6, 12 council. or 24 months. ▬ Enter your personal details Alongside the streamlining of the scheme, Roads ▬ Take the application form to your GP or minister Ben Carroll has assured disability Occupational Therapist advocates that the government is also increasing ▬ They will enter their own medical practitioner numbers of disabled parking spaces across the details and complete the medical assessment state. ▬ Take the completed form to your local council ▬ You can expect an update about your application Councils are in the process of moving towards once it has been processed by the council the new system, with statewide implementation ▬ Once the council determines the outcome, you by December 2021. Existing permits are still valid will receive a letter within 7 to 10 days. until their expiry date, or the 30th of June 2023, whichever date occurs first. FOR MORE INFORMATION CONTACT: P. 1300 965 677 E. accessibleparking@roads.vic.gov.au Or speak to your local council. NEWSLINK JUNE 2021 .org.au 17
COMMUNITY NETWORKS Community Networks – Mornington and Gippsland It was fantastic to see in May, a couple of our community Thanks also to Gerard Jarvis who made sure everyone was networks coming together and taking the lead in bringing engaging and spoke about the reason the group exists. It their communities together. was also great to see Darren and Barb take the drive all the As with all of our networks, the aim is to be directed by the way from Bairnsdale. members. Our aim is to facilitate and support all networks to establish themselves and become self-sustaining over JOIN ONE OF OUR time. COMMUNITY NETWORKS: Thanks to the support of Jeanette Warner, the Mornington ▬ Ballarat group met at Stella’s Dromana Hotel in Dromana and ▬ Bendigo enjoyed a great lunch. ▬ Geelong It was fantastic to see some new faces join the group. It ▬ Mornington was a great opportunity to network and discuss issues ▬ Gippsland important to them. It was great to see how the regulars and ▬ Shepparton & Echuca the newcomers actually got on with each other. ▬ Melbourne The Gippsland group met at Nilma North Hall for a great ▬ Family & Friends of SCI lunch put on by Colin Gray and his wife, Jenny. Both Colin ▬ Professionals with SCI and Jenny are local committee members, and thought ▬ Women with SCI the location would be an ideal venue, as it was eighteen Contact us on 03 9489 0777 or info@aqavic.org.au months ago when we were last there. to find out more or to get involved. Members of the Gippsland Network met in May and had lunch at Nilma North Hall. 18 .org.au NEWSLINK JUNE 2021
CLASSIFIEDS WHEELCHAIRS FOR SALE 2017 MERCEDES BENZ VALANTE 116 APOLLO RESIDENTIAL HYDRAULIC LIFT GLIDE CENTRO MID WHEEL BLUETEC Apollo lifts are a brilliant concept that makes DRIVE POWERCHAIR 04/2022 Registration; Auto; 2.1L Turbo installation a very simple project; It comes In excellent condition; Purchased in 2019 Diesel ; 24,000 kms; RWC Supplied; Service complete with its own prefabricated shaft; for $17000 - Receipt attached; Rarely went History; Flint Grey Metallic; This Mercedes Only needs a recess of 80 mm; It is very easy outside and was used in the aged facility; Benz van has been meticulously looked after to plumb in with the supplied control cabinet Many additional extras. and fitted with a long list of factory options to be installed close by; It only requires a and safety options (see below) and most single phase 20 amp power supply and is Price $ - Reasonable Offer Accepted importantly a Fiorella Wheelchair Lift with suitable for internal or external installation. PHONE 0436 010 284 (02/21#a) seatbelt and 4 Q’straints secure retractors The lift is a few years old but has never in 2017 by Mobility Plus in Fairfield (VIC) (O been installed or used; It was fabricated QUICKIE EXPLORE - ELECTRIC WHEELCHAIR Tax invoice for $20,855.00 and instructional to travel 2850 floor to floor but that can be manual supplied) and legally classified as a increased by the addition of material from the Height adjustable; Tilt in space function; wheelchair accessible vehicle and a seating manufacturer. Comes with backpack; Very good condition. capacity for 6 passengers plus wheelchair PRICE $5,500 PRICE $6,000 passenger. Link to Fiorella YouTube video: https://youtu.be/Cxhw7vpJeVI Factory PHONE 0414 593 790 (05/20#a) PHONE (07/20#a) options include: Blind Spot Assist; Reverse VEHICLES FOR SALE Camera; Front & Rear Parking Sensors; EASYLIFT LIFTBOY II Collision Prevention Assist; Driving Manufactured by Lehner in Germany and 2019 HYUANDAI SANTA FE + SMART LIFTER + Assistance Package; Lane Keeping Assist; MERITS MAVERICK 10 POWERCHAIR tested to all Australian specifications and Intelligent Light System; LED Tail Lamps, approvals; Virtually brand new - Used for 1 Brake Lamps; Electrical Operation of Sliding week only; Suitable for indoor and outdoor Top of the range Hyundai Santa Fe Highlander Doors (RHS & LHS); Roof Rails; Becker MAP MY19; 2.2 Diesel; 4x4; Auto/manual gearbox; use - fully waterproof; 240V plug in - no hard PILOT (Sat Nav); Alloy Wheels fitted with wiring or hydraulics required; Suitable for Build date 11/18; First Reg April 2019; Newly 225/55 R17; Heavy Duty Tow Bar; Includes fitted with top of the range Smart Lifter a max. lift height of 830mm, or any required 3rd Row Seats; Rear Passenger Privacy Black height in between, maximum lift weight of valued $5,800 and new Merits Maverick 10 Glass; Any queries please call. Located in Powerchair $4,200; Comfortable suspension; 300kg, user and attendant capable; This lift Coburg (VIC) can be packed up and moved in less than 10 Easy to lifter - so no physical effort required; The vehicle is fitted with genuine dealer PRICE $59,500 ONO minutes! The unit was $12,000 brand new. extras; Roof Racks; Tow bar; Capable of PHONE 0419 884 106 (07/20#a) PRICE $5,500 towing a decent size caravan; Key boot opening and button on inside of tailgate; EQUIPMENT FOR SALE PHONE 0438 008 584 (06/19#a) Many features: Sidesteps for easy entry; Seat ELECTRIC BED – ICARE 333 - KING SINGLE FREEBIES and steering wheel warmers and coolers; Both seats electronic personal adjustments; Near new purchased 16/11/2020; 200kg WHEELCHAIR MANUAL All comforts; Warranty is still current on Lifter Capacity; King Single; Lowers to floor; Raises and Powerchair; Car still under warranty Mobility Plus Manual Wheelchair; 16’ x 17’; to 810cm; Selling due to mother in-law going 24 Inch wheels; Can use for Lawn Bowls; till 2024; Rego till June 19th; Asking price into nursing home; Paid $3,500 in November $54,500 – The lot includes the Vehicle, Pick up from Mansfield or ring and arrange 2020. somewhere to meet. Powechair & Lifter. PRICE $1,500 ONO PHONE 0477 011 153 (09/20#a) PRICE $54,500 PHONE 0425 734 873 PHONE 0404 125 621 (Madeline) (05/21#a) WYMO CAR HOIST ELECTRIC BED - JOMOR QUEEN CHRYSLER VOYAGER VAN - LX 6 SIZE WYMO Car Hoist; Works well; Includes all SP AUTOMATIC 4D WAGON parts for installation; Pick up from Mansfield 14 Years Old; In good working order; Does not or ring and arrange somewhere to meet. A rare opportunity to purchase this deluxe come with mattress. wheelchair accessible vehicle; Low kms; PHONE 0477 011 153 (09/20#a) Automatic; 2.8 L Turbo Diesel; Has incredible PRICE $500 ONO WANTED power and yet is extremely economical. This PHONE 0408 329 136 (05/21#a) is the Rolls-Royce of wheelchair accessible MOBILITY EQUIPMENT/AIDES/ vehicles; Chrysler Voyager, 1 of the last RAZ – TILTING SHOWER ACCESSIBLE VEHICLE ever sold in Australia; Fully imported car, COMMODE only a few ever brought to Australia; Over If you have any mobility equipment / aides $200,000 has been spent on this vehicle to With Headrest; In good condition; They sell that you no longer need, we would love to make it arguably the most exclusive car in for $3,900 - $5,000 new. hear from you - AS WELL AS - a wheelchair Australia; Self-drive fully computerised with PRICE $1,500 accessible vehicle with a minimum of 4 electronic operation. No airbags; Full electric regular seats. PHONE 0432 566 930 (03/21#a) Great Ocean Stays offers 4 purpose built lowering with twin electric doors and boot; Front passenger and driver seat have full accessible homes known as Bell Air. These MONARCH HAND CONTROLS are in Ocean Grove, Vic. We are NDIA access to car controls including stereo and air conditioning; Both front seats are easily Used; Very Good Condition; Purchased and providers. To assist our clients have a removable and are fitted with wheelchair fitted at Franks Engineering. seamlessly accessible holiday, we source 2nd docking stations; This car has done only hand mobility aides to store at the complex PRICE $600 for our guests to use free of charge. At this 62,000 km and is in almost new condition; It is finished in a gorgeous deep navy blue paint; PHONE 0402 204 992 (01/21#a) stage we do have enough shower chairs and Can be supplied fully registered anywhere stools, but would be interested in wheeled in Australia; Finance and insurance can be CORAILLE – TILT MOBILE AGED CARE CHAIR commodes, princess chairs, and most other arranged; A warranty can be arranged at aides. Secondly, we are also looking to Excellent Condition; Used only for a short enhance our guest experience by offering additional price. time; Seat width 48cm / Head rest; Double tours to the Great Ocean Road and need to PRICE $ - P.O.A. footplate; Located in Reservoir. purchase a wheelchair accessible vehicle with PHONE 0450 920 834 (04/21#a) PRICE $1,500 Negotiable a minimum of 4 regular seats. Many thanks, Regards, Christine Smith - Owner. 2014 CANAM SPIDER STS PHONE 0403 597 477 (11/20#a) PHONE 0403 515 605 (05/20#a) Purchased in 2015; Gold; Kms 6350; Has hand STANDING FRAME – EASY STAND controls (RH brakes); Wheelchair lifter; Very For a full list of classifieds and items for Comes with strap; Excellent condition; Hardly reliable bike. used. free, please visit: PRICE $16,000 Negotiable PRICE $2,500 www.spire.org.au/community/classifieds PHONE 0434 449 457 (04/21#a) or contact us on 9489 0777 or info@ PHONE 0449 881 200 (07/20#a) aqavic.org.au SPINAL INJURY INFO & SUPPORT ONLINE Like us on facebook for news, information, photos and more. NEWSLINK JUNE 2021 .org.au 19
You can also read