UPDATES FROM LIMBS 4 LIFE ‘Celebrating Women’ Autumn 2014 Beauty with Meaning Courtney Jones I was totally convinced beauty was about perfection - perfect symmetry and gloss. Having been working in the beauty industry for many years in both modelling and acting, the marketing concept of what is deemed beautiful was well entrenched in my mind and reflected on my body. I was the ‘Ideal’ with regular modelling jobs and after years of study a potential acting career in front of me. Then the accident … my spine was fused; my right shoulder was rebuilt; the missing teeth were replaced; the wounds healed; the scars improved and became barely visible; but my right arm was totally gone. I would never be beautiful again. were essential for a full recovery and I had each of them. For me, the transformation began from the inside focusing on the positive. Every day I focused on some small improvement - the phantom pain was a little better; a compliment from a friend; greater movement in my shoulder; new teeth. There was always something a little better from the day before. I was incredibly fortunate. I had the best doctors, a loving and supportive partner, a caring family, and loyal friends and from somewhere I discovered fierce determination. These elements Once the initial medical crisis subsided, the fear of the unknown took over and I began to question my future. Will I lead a normal life? How will I be able to have children? Can I work? How will anyone ever find me beautiful and desire me again? Bitterness and anger were dangerous emotions and once I went down that road, it would be hard to come back from. I decided to choose the positive, to choose happiness every time and so the inner healing process began. Slowly I began to feel empowered coming to terms with a significant life-changing event. I’m not sure I would have recognized any of these possibilities if it weren’t for the accident. Learning to love myself again and believe others would love me proved to be the toughest challenge. Seeing beauty in a more meaningful way was one of the most important steps required for me to be happy with myself. If my life had never taken this direction, maybe these other skills would never had been discovered. In many ways, I feel blessed and for anyone reading this; I hope it helps you to know that happiness is a choice. Someone once said, ‘You have handled this situation with grace and courage’ and to me that is now a far greater compliment than being told you’re ‘beautiful’. However, I must say, to my family and friends I am an amputee and I am beautiful. What I have learnt is that my missing arm is not who I am, it is a small part of my story as I travel through my wonderful life. Life comes with many challenges and it is how we come back from them and what we make of it that truly defines us. by my growing strength and the awareness of overcoming something so life changing and permanent. No doubt there were dark days…grappling with severe phantom pain and struggling to perform daily tasks that were once so simple making things all the more worse … life sometimes seemed impossible. Then, some special person makes you laugh and reminds you that you are worthy. You wake up the next day with a fresh start, promising to be kinder to yourself and knowing that each day will get better. So to anyone whose partner, family 2 member or friend who are going through this, know that you are a very important part of the journey. As my healing progressed, I began to discover other skills and talents that I would have never considered possible. I surprised many people, even those closest to me, when I began a degree in Accounting. I now have different goals and aspirations and am working towards success in business. I am looking forward to becoming a mother sometime in the near future and I am hoping my experiences can assist others who are also I then see them straight after surgery to fit them with a Removable Rigid Dressing (a cast,) to protect, shape and control swelling in their residual limb (stump.). What got me Interested in P+O? Karyn Duff When I was young I went on a family holiday to a theme park where I sat on a rollercoaster next to a girl with a prosthetic leg. I think that was the first time I had ever seen a prosthesis and I was amazed! As I got older, my uncle lost one of his legs to diabetes. He was fitted with a prosthesis and I saw what a difference that made to his life. Prior to this, like a lot of people, I didn’t know that there was such a profession as Prosthetics and Orthotics. I am originally from Scotland, so I studied Prosthetics and Orthotics at Strathclyde University, Glasgow. (In Australia, you can study P+O at La Trobe University in Melbourne.) I had the opportunity to spend my final year on clinical placement between Norway and Ireland. This gave me an appetite for travelling and after I graduated in 2008, I knew I wanted to continue my adventures. I came straight to Australia for my first job at Hunter Prosthetics and Orthotics, Newcastle, NSW. Here I was working mostly with new amputees, fitting them with their initial, interim prosthesis. I later returned to work in Ireland where a lot of my time was spent travelling to rural clinics. It always makes it more challenging to adjust and repair a prosthesis when you don’t have a workshop, spare parts and tools close by. While in Ireland I worked a lot with children with limb deficiencies. I was always impressed by how well these kids adapted. For the last two years, I have worked at St Vincent’s Hospital, Melbourne. A lot of my time is spent on the rehab ward with people who have recently had an amputation. The majority of the amputees at St Vincent’s have had an amputation due to poor blood supply, diabetes or a tumour. If possible, I meet the patients prior to their amputation to give them general information on prosthetic rehab. Most have lots of questions at this stage – will I be able to walk again, how does the prosthesis stay on, who will pay? I think it really helps to have this pre-amputation education to help reassure the patient and address their questions or concerns. Once the amputees arrive in rehab and the wound has sufficiently healed, that’s when I will start making the prosthesis. This will start with fitting of a shrinker, followed a few days later with casting and measuring of the residual limb. A lot of work then goes on behind the scenes, usually with the help of a prosthetic technician. This includes filling the plaster cast, modifying the cast to ensure weight is being taken through tolerant areas and sensitive areas are offloaded, manufacturing the socket and finally selecting and assembling the individual components of the prosthesis. Then, the prosthesis is ready to be fitted. I find working with the new amputees to be one of the most rewarding parts of my job, it’s always exciting to see them getting up and walking for the first time! Together with the rest of the rehab team, (doctors, nurses, physiotherapists, occupational therapists and social workers) our aim is to get the patient as independent as possible and ready to leave hospital. For some amputees this may not mean using a prosthesis at all, instead focusing on using a wheelchair. Unlike a lot of the rehab team, my work is not complete when the amputee leaves hospital. As Prosthetists we have a life long relationship with our patients, we will continue to adjust, review, remake and repair their prosthesis as needed. One of the things that keeps my job interesting is the variety. No patient is the same, they have different goals and expectations, different amputation levels, different medical issues. It’s this variety that keeps you challenged. I am hoping to do some overseas volunteer work in Haiti later in the year. There are still many amputees in need of a prosthesis following the Earthquake that struck in 2010. 3 ® VARI-FLEX XC ROTATE™ Go anywhere. Do Anything. Increasingly, many amputees want a prosthetic foot that can keep up with a busy lifestyle. Whether you are at the office or the gym, you want the convenience of using one foot throughout the day. The Vari-Flex XC Rotate can do it all. • Lightweight design for comfortable level ground walking and everyday activities. • New drop toe and c-shape foot module features optimise energy return for more active pursuits. • Built-in shock absorber and rotation ball help reduce the impact on and protect the stump and joints from over rotation caused by living an active life. For more information, please contact your prosthetist. FOLLOW ÖSSUR ON WWW.OSSUR.COM.AU Ramping it up in Regional Areas I was 30 years old when I was diagnosed with Rheumatoid Arthritis which I have battled with for 30 years and is now chronic. Over the last two years I have battled with foot ulcers and I underwent surgery to remove a rheumatoid nodule and ulcer. After three unsuccessful operations the surgeon wanted to try again, removing bones and ulcers and placing my foot in a cage with bolts and nuts to hold it together; this in itself could have resulted in further ulcers given my past history. With continued pain over a 9 month period the only option I could see was an amputation, my chance at achieving a normal pain free life. Decision made, a feeling of relief engulfed me, to be finished with dressings, pain and maybe being able to walk again, thrilled me. Without the help of my sisters, the surgeons’ nurse and caring friends, being a long way from home would have been a nightmare. Being moved to Ballarat from Melbourne kept me sane. Having the support of family made my rehabilitation a lot easier to cope with. Getting my prosthesis was an eye opener! Everything happened so quickly. One day I was being wheeled around in a wheel chair, the next I was fitted for my new leg. After lots of exercises and encouragement from physios I was standing between the bars ready to walk. I had to convince myself that my prosthesis would do what I wanted. Before long it was just another part of me, it even got the name ‘Nancy’ from my 15 year old grandson. Having chronic Rheumatoid arthritis with very deformed hands I found it very difficult to try and put on and take off my new leg. Fortunately my sister and my husband took on the task of learning to do this for me. After rehab I stayed with my sister for 5 weeks and was under the GITH program, being visited by a nurse an OT and a doctor who kept a good eye on me for the next month until I was ready to make the long trip home to Mildura. While in rehab, talking to people in the same situation provided me with another perspective of the whole process of what was happening. I am now slowly getting back to everyday life. I got the idea I wanted to try and start a group for amputees here in Mildura. The support I received from those in rehab made me realize that we need to support one another on a local community level. Especially considering that we live so far away from a big city. With the help of Limbs 4 Life and another group in Mildura called ‘Lucky Legs’, we hope to be able to assist amputees and run gatherings so that people can share experiences. Lucky Legs, is run by District nurses and meets every Thursday afternoon in the multipurpose room at Princes Court Village, from 12.30pm to 3pm. A gold coin donation is all that is required and you can join us for a cuppa and a chat. If you are interested in finding out more information please call 1300 78 2231 or email peersupport@ limbs4life.org.au Lesley Pike 5 The Next Chapter April 6, 2008 started off like any ordinary day. My husband (Massie) left early for a long anticipated motorbike ride with his friends as part of a local social club monthly event. Meanwhile, I spent a wonderful day with our two young children, playing football on the muddy oval across the road, and baking their dad’s favourite chocolate cake for when he returned home. We were all excited about the coming weeks also, as the plans to our new home had just been drafted and approved, and building works were soon to commence. At 4pm that afternoon our world fell apart when my mother in law knocked at the door; she was clearly distressed and told us that Massie had been involved in a sole vehicle collision only kilometers from home. By that night Massie had been revived three times and airlifted to a 6 metropolitan hospital. As the days passed, we were advised that Massie has broken his back and neck, severed his spine, had incurred lung, spleen, and heart injuries, and also was likely to have an acquired brain injury. The weeks and months that followed are a blur. Our days consisted of travelling 300 km round trips to visit Massie in hospital, whilst juggling fulltime work, school, kindergarten, kids sport and the running of a household. Initial prognosis was not great - Massie would never walk again, never work again, and an ABI had also been confirmed. Whilst we all grappled with how a very active, hardworking husband and father could possibly come to terms with his fate, I was left raising two distraught young children. Our daughter who was 7, fully understood the impact of her father’s injuries, yet our 3 year son was clueless as to why dad could not come home. Amongst all of this, I also needed to arrange a family home – we had been renting whilst our new house was to be built. The thought of maintaining a 5 acre property was now impossible, and so I commenced searching for a home that would accommodate all the support needs for a paraplegic. The thought of being a carer for my husband whilst raising a young family was frightening, yet I resolved very early on that I just needed ‘to get on with it’. I had no other choice and my husband of 11 years deserved the full support and love of his family. Six weeks after Massie’s accident, he was transferred to a local hospital for rehabilitation. It was wonderful to no longer travel to Melbourne and the kids were so much closer to their dad. However the support needs that I needed to provide started to increase. The daily washing, multiple daily visits and the request to have the family eat dinner with Massie each night were tough. I was still grappling with what my life was going to be – and the fine line that I danced each day of being his wife, yet at times feeling more like a mother to him. Through it all though, Massie never once complained. He had commenced rehabilitation at full throttle, and was determined to get home by June to celebrate my birthday and my son’s birthday. He vowed to walk again and had come to terms with the multitude and complexity of his injuries. Shortly after Massie’s hospital transfer, we signed the papers for a new home – literally across the road from where we were renting. Though this home was nice, it was not my preferred choice. However, it had a garden that I could manage, was close to work and school, affordable on 1 wage and I could literally carry our furniture across the road which removed anxiety associated with moving house. At the age of 37 my role as carer was now embedded as reality and I took a leaf out of Massie’s book – I was scared and frightened, but I made sure that I appreciated what I still had and that there were friends, family and support networks that would help me through my next chapter in life. I was not alone. Massie kept his promise and came home just in time for all of the June birthdays. Once again though, the support needs that I needed to provide as carer stepped up another notch. Juggling meals, medical support, medical appointments, and ensuring that his mental wellness was in check was a tough job to manage. This was on top of ensuring that our children were well supported, full time work and running a household. I will never forget when I had to change a light bulb, the ceilings were 11 feet high and I was petrified of heights. Then there was the time that I could not get the mower started, these were all of the things that Massie had always done. As the months passed, life became so much better. We all adapted to Massie’s support needs and soon found different family activities. We replaced family bike rides for family walks and ‘Fun Friday’ (homemade pizza and video nights). Massie’s infectious motivation and determination was rubbing off on all of us and by the end of 2008 we had become an even closer family unit than ever before. Over the next 5 years, Massie went from strength to strength. He regained his car license, enrolled in schooling and transitioned to the best stay at home dad that I have ever come across. His final diagnosis was as an incomplete paraplegic; though he could walk, he had no feeling from the waist down on the left hand side of his body and needed to get around with the use of either a wheelchair or crutches. By late 2010 the bones in his left leg were calcifying and due to multiple falls, there were numerous breaks to his foot. After careful consideration and endless research, Massie opted to have his left leg amputated. Though a heart wrenching decision, this would allow greater mobility, reduce if not eliminate the daily nerve pain and increase his overall quality of life. Massie underwent a below knee amputation in November 2011, in a metropolitan hospital. Though I had given it some thought, it finally dawned on me that I was back to the role of fulltime carer whilst Massie rehabilitated. His stay in the metropolitan hospital was only for one week, and he was once again transferred back to a local hospital for rehabilitation. Within days of the transfer, it became apparent that Massie had acquired a hospital infection (staphylococcus) and this turned Massie’s life once again upside down. Rehabilitation was at a standstill until the infection cleared, so Massie was sent home. Once again, I had to juggle medical appointments, meals and support needs for my husband and children. His wellbeing was a real concern to me at this time, as the impact of the infection meant that not only was rehabilitation on hold, but so was being fitted with a prosthesis, the retention of his newly started job and his resultant independence. The infection finally cleared after a month and Massie started being fitted with a prosthesis. It was however not until a follow up appointment with his surgeon in Melbourne that we learned that he would require revision surgery. The staphylococcus infection had interfered with the nerve repair and healing of the stump; Massie would need to undergo nearly identical surgery in the July of the following year. By this stage though, I had come too far to start feeling anxious or unsure about once again being a fulltime carer. Massie had been such an inspiration to me over the last 5 years that I never questioned what I needed to do for him. He was my soul mate and I would support him 100%. Once again, the family travelled to Melbourne for the 4th round of surgery since the accident, and I 7 once again stepped into the role of fulltime carer. By now though my children were familiar with the changes that this surgery would bring and were also cognisant of the ways that they could help make the journey easier. They were completing their homework in the hospital, packing their own lunch to take to the hospital each day, and assisting with the daily household chores in both the apartment that we had rented, and also in the family home. I realized that my role as carer would be with me for life, and would vary in its intensity and demand. But with the right attitude and support networks, anything was possible. In the months following, Massie received wonderful support from a number of agencies and medical professionals as he transitioned to life as an amputee. Through this support, Massie has retrained and commenced employment in a new vocation. Additionally, Massie is now back on his pushbike and has recently commenced bike racing with the local cycling club. His ultimate goal is national titles in May 2014, and has the Paralympics well within his sights. As a carer I am humbled by the resilience, sheer grit and positive attitude that my husband has shown. He has inspired not only his family but the broader community with the ‘unachievable’ progress he has made. Though I was petrified in the beginning, and refused to ask for help, I have now changed my ways. If I need help or respite, I seek it. If I am afraid I admit it. Most importantly though, I am grateful for every day that I have the opportunity to be Massie’s carer. Lisa Knight VALOR TM The Most Advanced Moisture Management Liner Sock on the Planet The VALOR liner sock addresses the 150 year old issue all amputees face sweat build up inside the prosthesis. TM TECHNICAL SUMMARY Active Antimicrobial: A patented bonding process which delivers natural anti-odor and anti-fungal benefits of silver ions throughout the sock, activated when you sweat Targeted Knee Padding: More dense material where it is needed most Mid-Patellar Tendon (MPT) Marker: Used for correct size and fitting reference Channel Design: Helps manage moisture and compression on anterior tibia Super Strong: Tactel fibers are three-times stronger and dry eight-times faster than cotton Linked Seam: Ultimate smooth distal end for maximum comfort The VALOR liner sock is worn against the skin, underneath your prosthetic liner. Constructed from the highest quality materials in th eUSA, this game-changing sock provides you superior moisture management climate control, with just the right amount of compression. TM For more information call (03) 9898 0011 or visit our website massonshealthcare.com.au INSPIRED BY PATIENTS New Soft Shell Technology • Extreme protection for extreme use • One prosthesis for all activities • Easy access to the adapters • Self-supporting and removable For more information contact OAPL on (03) 9419 2499 Orthopaedic Appliances Pty Ltd Bendigo, Box Hill, Brighton, Clayton, Fitzroy, Frankston, Footscray, Richmond, Ringwood, Canberra, Syndey, Brisbane, Perth E: [email protected] www.oapl.com.au BECOME A PEER SUPPORT VOLUNTEER Limbs 4 Life is seeking amputees to become Peer Support Volunteers. Peers are people who have lived with limb loss for a number of years and have successfully adapted to changes and regained their independence. Some natural qualities that make people good peers include: • A desire to help others • Being a good listener • Being reliable and committed If you think you have what it takes to become a Peer Support Volunteer or would like more information about our program please visit our website www.limbs4life.org.au or phone 1300 782 231 Challengers tested their brains and brawn in a series of challenges. They made their way to iconic Melbourne landmarks and locations, encountering decision and obstacle challenges, solving clues and demonstrating some previously hidden skills including making balloon animals, origami and safe cracking! Herbert Geer Amazing Race 2014 The second annual Herbert Geer Amazing Race was held on Thursday 13 March to raise funds for Limbs 4 Life. The event was organised and supported by the Workplace Insurance Services team at Herbert Geer Lawyers (now Thomson Geer). It was a fantastic event, enthusiastically supported by Adviceline, Zaparas Lawyers, Maurice Blackburn, Slater and Gordon, WorkSafe Victoria, CGU Insurance, Green’s List, Dever’s List, Patrick Robinson and Nowicki Carbone who all entered teams. Each team was captained by a Herbert Geer staff member. After Adviceline brought home first place the after-party entered full swing at the beautiful Alumbra on Harbour Esplanade at Docklands. With raffle prizes galore (kindly donated by local businesses) and champagne flowing, it was an ideal opportunity for those usually opposed in court to join together supporting a great cause. Herbert Geer raised over $6000 for Limbs 4 Life. Thank you to all the organisers and participants and those who donated prizes or made online donations for making this year’s event an Amazing one! 2014 Limbs 4 Life Charity Golf Event Friday 12 September 2014 Sandhurst Club, Skye Victoria Get a team of four friends together, or just register yourself For more information or to receive a Registration Form Entries close 1 September Email: [email protected] or contact us toll-free on 1300 78 2231 REGULATE HEAT. REDUCE SWEAT. Almost every amputee longs for an easy way to reduce sweating of their residual limb while wearing a prosthetic liner. The solution is here! The Alpha® SmartTemp Liner blends silicone with Outlast®, the original heat management technology, to absorb and store excess heat from a residual limb. The result is less sweating, less chafing, and all-day comfort. The Facts: • An Alpha SmartTemp Liner with Outlast responds to an individual’s constantly changing skin temperature to help keep an amputee comfortable for a longer period of time. • The Outlast technology proactively manages the build-up of heat and moisture within the liner to help delay the onset The Ohio Willow Wood Company willowwoodco.com of sweat. • As skin temperature rises, the Alpha SmartTemp’s medical-grade silicone softens and feels similar to thermoplastic elastomer. • Retrofits with Alpha Liners with progressive and symmetrical profiles. For more information call (03) 9898 0011 or visit our website massonshealthcare.com.au Healthcare Tips for Amputees with Chronic Illness Losing a limb opens a whole new world where many different things need to be learned, and understood. Managing your long-term health is essential to your general wellbeing. However for amputees with chronic illness, there can be more complications and a greater need to pay close attention to even the smallest of changes. Part of my role as Chronic Illness Peer Support Coordinator is to develop resources and information that support amputees living with chronic illnesses such as diabetes, cancer and arthritis. Importantly, this information needs to be helpful, simple to read, with easy to follow instructions. Prior to developing anything new it is necessary to seek feedback from members of the community living with limb loss and their carers, to find out how their healthcare is managed; what works, and what information is needed. A survey titled Amputees’ Self-Management and Health Literacy was developed and invitations for participation were sent directly to over five hundred amputees. The online survey was sent out to the participants via the organisation’s official Twitter page, Facebook page and email, along with hard copy (printed) surveys (with reply paid envelopes). The aim of the survey was to identify amputees’ understanding of their own health self-management and the relationship between amputees and the provision of health-based information (literacy) and long-term care. Participants were asked to respond to 28 questions that were designed to investigate their level of understanding, managing and living with an amputation in terms of their own self health-management. 152 amputees completed the survey. Results revealed that over 60 percent of participants do not use a hand mirror to check for skin changes on a regular basis (self-management). Nearly 75 percent of participants have experienced skin or wound breakdowns and of these approximately 65 percent of participants had mild skin breakdown while 35 percent reported that they have had severe wound breakdowns resulting in skin ruptures and further amputations; impacting on their mobility (walking) and in some cases resulting in the need for surgical intervention. Although many of the participants indicated that they have a good understanding of how to manage their residual limb, many of them do not follow care instructions or care plans. For example: a significant number of participants did not change or wash their stump socks or liners on a daily basis. In direct response, Limbs 4 Life consulted with medical and allied healthcare staff, amputees and their carers to develop two information sheets to address some of these areas of concern. The information sheets can be used as a daily checklist to maintain healthy outcomes. If you would like copies of these information sheets contact Limbs 4 Life directly or ask your healthcare provider. Remember, practice good hygiene and take care of your skin. LIMB-itless Be Involved . Be Informed . Be Inspired In conjunction with Limbs4Life, Ottobock Australia is proud to announce and invite you to the first annual LIMB-itless Amputee Conference to be held at Novotel Sydney Bright Beach, on Saturday 8th November 2014. You will hear from a variety of speakers on a range of topics that will both inform and inspire. Professional Ottobock prosthetist’s and trained staff members will be on hand to show the latest products available on the market. Our experts can show you the best new components and services suitable for government funded amputees, private payers and third party funded individuals. Where When Time Cost Registration Novotel Sydney Brighton Beach Cnr. The Grand Parade & Princess Street Brighton le Sands NSW 2216 Australia Saturday 8th November 2014 9am to 4pm TBC per person (Includes morning tea, lunch and afternoon tea) TBC Parking is available at the venue for $15 per day This conference is limited to 200 guests only so please get in quick to avoid disapointment If accommodation is required please contact Novotel Sydney Brighton Beach and mention the Ottobock conference for discounted rates. Badminton for Amputees For anyone that is interested or would like to come along and try Badminton; then this is for you. Come and Try dates: - May 23rd Melbourne Sports and Aquatic Centre (MSAC), Aughtie Drive, Albert Park @ 7.00pm - 9:00pm - June 13 MSAC at 7:00pm - 9:00pm - July 11th MSAC at 7:00pm - 9:00pm Competition dates - May 24th at MSAC (Victorian Para Badminton Championship) - Melbourne City Para Event at Mountain District Badminton Centre, Liverpool Rd, Kilsyth (exact times TBC) Amp Link is a new online forum for amputees, people living with limb difference and their caregivers. Join us online at www.limbs4life.org.au/forum and be a part of the conversation. For further information or to register contact Michael Byrne on 0408 612 801 Limbs 4 Life does not endorse any specific technology, product, company, service or device. Consumers are advised to consult with their healthcare provider before making any decisions involving their care. © Limbs 4 Life Inc. Limbs 4 Life Phone: 1300 782 231 Email: [email protected] www.limbs4life.org.au
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