tim matthews unleashed!
Transcription
tim matthews unleashed!
THE OFFICIAL MAGAZINE OF LIMBS 4 LIFE VOLUME 9 / SPRING 2007 LIMBS 4 LIFE CO PATRON: TIM MATTHEWS UNLEASHED! ISSUE FOCUS: CANCER & LIMB LOSS Support services, research & profiles THE OFFICIAL MAGAZINE OF LIMBS 4 LIFE TABLE OF CONTENTS PAGE 04 PAGE THE SARCOMA SERVICE & ONTRAC@PETERMAC Kate Thompson 08 LIMBS 4 LIFE VOLUNTEER Annie Pateman FEATURE STORIES: MESSAGE FROM EXECUTIVE DIRECTOR - MELISSA NOONAN 05.‘A Helping Hand’ - A new resource to support cancer patients and their families 06.Helping people with concerns about cancer - Edwina Beddoes, The Cancer Council Victoria Well what a difference a little colour can make! to the amputee community, and together as a team we would. Welcome to the new look Amplified. I know that each one of you will join me in congratulating the team on the fantastic effort they have made to take our publication to the next level. Limbs 4 Life will continue to work to ensure that no amputee need go through the process of limb loss alone. We will also bring you, the reader, enlightening articles, current information and personalised stories which many of us can relate to, reflect on and be inspired by. 10.Australian Amputee Golf Champion - Shane Luke 13.Working with amputees - Chris Shannon, Prosthetics Technician 14.Limbs 4 Life Co-patron Tim Matthews Unleashed 16.Amputation in the case of cancer: A case study, Monash University COLUMNS: 03.From the Editor 18.The Amplifier - Be heard! Readers’ Column From the day I made the decision to commit myself to the vision of Limbs 4 Life, my own life had changed enormously both mentally and physically. Knowing that I am a part of a dedicated and passionate group of people is a humbling experience. Jacinta and I never doubted that the organisation would become what it is today. In our heart of hearts, we always wanted to make a difference REGULARS: 12.A Closer Look at Componentry - Hip Joints, Stuart Crampton 19.Limbs 4 Life News 20.Your Community 21.Sport & Activities 22.Book Review – One Unknown 02 SUBSCRIBE TO AMPLIFIED Amplified is distributed nationally by mail and e-mail. To receive your copy of Amplified please register your details by calling: 1300 782 231 Alternatively visit www.limbs4life.com and click on the Contact Us page. THE EDITOR - JACINTA DYSON If somebody had told me five years ago that I would co-found Limbs 4 Life, become the Projects Manager and compile and edit Amplified, there is no way I would have believed it! Then again, knowing myself (as thankfully only I do) I just might have. My connection with amputees began when I was working at the Royal Talbot Rehabilitation Centre four years ago. It was during my time there ( in the amputee physiotherapy gym to be precise), that I met Melissa, co-founder and Executive Officer of Limbs 4 Life. When I first met Mel, I can honestly say that there was a knot in my stomach. It was so obvious just how difficult her journey from the trauma ward to rehabilitation had been. I worked with Mel over the following six months in physio. It was a profound experience to witness her sheer determination to overcome pain, build up her strength and walk independently. Despite the severity of her physical injuries, Mel’s positive outlook had a lasting impact on all those around her, patients and staff alike. Mel certainly had a profound effect on me, and if it wasn’t for our meeting, I am almost certain I wouldn’t be sitting here writing this column now! During our daily sessions, Mel and I had many conversations about the need for greater information and support for amputees in our community. Twelve months later, we pooled our resources and created Limbs 4 Life, not to mention an enduring friendship. On reflection, the journey over the last three years has been incredible. This amazing organisation started as a conversation, and has now surpassed many of the goals and expectations that we set during those foot massages and gym sessions! There are so many people who have helped Limbs 4 Life to develop and succeed, and as the organisation expands, so too has the support from much of the community. I have immensely enjoyed bringing Amplified to life over the last nine issues. With each edition I learn something new, and it brings with it the opportunity to meet so many inspirational readers and contributors. Countless individuals and organisations have played a part in the success of Amplified. I’d like to offer my sincere gratitude to Niagara for enabling us to publish in full colour and for funding Amplified over the next twelve months. I would also like to thank Marc Mundy, Jenny Gore (our amputee artists!) and Troy Laws-Herd for their ongoing creative involvement in the design and layout of Amplified. Thanks also to Tully Machtynger and Tarone Van Niekerk for their editing support. Finally, I would like to thank all the contributors who share their experiences and knowledge, making Amplified the unique and specialised publication that it is. I hope you enjoy Volume 9 of Amplified as much as I have enjoyed putting it together. AMPLIFIED Volume 9 / Spring 07 Issued quarterly Limbs 4 Life Inc. A0046472T ABN: 25 116 424 461 P.O. Box 282, Tunstall Square, East Doncaster, Melbourne, Victoria 3109 Phone: 1300 782 231 Fax: (03) 9886 8269 E-mail: info@limbs4life.com Web: www.limbs4life.com Editor: Jacinta Dyson Design: Marc Mundy, Jenny Gore, Troy Laws-Herd Photography: Troy Laws-Herd, Shannon Reddaway Printing: Dynamite Cards™ Design and Print LIMBS 4 LIFE MISSION Limbs 4 Life aims to empower every amputee with information, knowledge and support and ensure that no amputee has to “go it alone” FOR ADVERTISING ENQUIRIES PHONE: Jacinta Dyson 1300 782 231 Next Issue: Summer 2007 Submission deadline: 19th October Distribution: 7th December Information and articles contained in Amplified are intended to present useful and accurate information of a general nature but are not intended to be a substitute for legal or medical advice. Limbs 4 Life endeavours to ensure all articles contained in Amplified are accurate and correct. Advertising policy: Limbs 4 Life does not endorse any specific technology, company or device. Consumers are advised to consult with their health care providers before making any decisions involving their care. Privacy Policy: Go to www.limbs4life.com to view our complete privacy policy document © Limbs 4 Life Inc. 03 The Sarcoma Service Kate Thompson Cancer is the leading cause of death in Australia, directly affecting one in three men and one in four women before the age of 75. However, an explosion in cancer knowledge and discovery has occurred in recent times, fuelling an exciting and unequalled era of cancer survivorship and an even more promising future. complex. With a rare and complex disease such as sarcoma, development of expertise can sometimes be difficult. Better outcomes and improved survival rates may be found with management in specialised centres. Our understanding of the biology of cancer is growing exponentially, and new medical technologies and techniques continue to improve. Although recent advances have generally led to less invasive treatments, some people still unfortunately require limb amputation. As a result, cancer remains one of the more common reasons for limb amputation, especially for upper limbs. Sarcomas are the leading cause of cancer-related limb amputations. Sarcomas are cancers of connective tissue such as bone, cartilage, muscle, fat, nerve, blood vessel and deep skin tissue. These cancers are rare, occurring in approximately 4 per 100,000 of the population and accounting for only 1% of all cancers. As connective tissue is present throughout the body, sarcomas can occur in any location, although two-thirds are located in the extremities (arms or legs). As sarcomas are rare and can take multiple forms in multiple locations, they are often difficult to diagnose and treatment can be 04 The Peter MacCallum Cancer Centre is unique within the Australian public health system. It is the only Australian hospital solely dedicated to cancer, and one of just a few outside of the US that has its own cancer research division. Home to over 400 scientists, it is the largest dedicated cancer research group in the southern hemisphere. Over the last 50 years, Peter Mac has built an international reputation for excellence and innovation in cancer research, treatment and care and continues to dedicate itself to helping more people survive cancer. The Sarcoma Service at Peter Mac comprises a multi-disciplinary team skilled in the care and management of this group of patients. It is closely linked to the Orthopaedic Service at St Vincent’s Hospital, Melbourne. The team includes a pathologist who examines cells from the “biopsy” or tissue sample under a microscope, an oncologist who prescribes and monitors chemotherapy if required, a surgeon to remove the tumour, and a radiation oncologist who oversees any radiation treatment. Other health professionals providing support include physiotherapists, social workers, occupational therapists, dieticians, psychologists and specialist nurses. Patients with soft-tissue sarcomas are treated with radiotherapy followed by surgery. Patients with bone sarcomas are treated with chemotherapy followed by surgery followed by further chemotherapy. Modern treatment of these cancers and advances in surgery mean that many people with sarcomas are now able to have limb-sparing surgery instead of amputation. For some people, however, amputation of a limb may be necessary to treat their cancer. For individuals requiring an amputation, a careful plan of care focusing on the best quality of life is discussed. It is likely that there will be a period of emotional adjustment, and it is acknowledged that losing an arm or a leg can feel like bereavement. The option of pre-operative counselling is included in the management of these individuals in addition to the physiotherapy and occupational therapy input, as overseen by the surgeon. There are many supports and services available to individuals following a cancer diagnosis. Oncology social workers are available at all treatment centres, and can assist individuals following a cancer diagnosis. The Cancer Council Help line can be contacted on 131120 for information and support. Kate Thompson Kate Thompson, Senior Social Worker, Sarcoma Service, Peter MacCallum Cancer Centre Dr Ken Khamly, Medical Oncologist, Sarcoma Service, Peter MacCallum Cancer Centre OnTrac@ Petermac Australia’s leading multidisciplinary service for adolescents and young adults living with cancer. The physical, emotional and social challenges facing young people with a diagnosis of cancer remain among the most difficult faced by patients, families and health care providers. Young people with a cancer diagnosis face a completely different set of challenges from those of older adults and children. onTrac@ PeterMac is a multi-disciplinary team including medical staff, social workers, psychologists, specialist nurses, education advisors and researchers. All team members are experienced in working with young people, and understand issues that are unique to this age group. The onTrac@PeterMac Team works with other hospitals to provide additional support and services to any young person undergoing cancer treatment in Victoria. Some of the services provided by the program include: •Clinical assessments •Patient supportive therapy •Adjustment, depression, and anxiety support and management •Family therapy •Relationship counselling •Grief and bereavement counselling •Fertility and sexual health management •Education support •School tutoring •Employment support •Legal assistance •Financial assistance •Peer support •Support groups •Written information on relevant treatment topics To learn more about onTrac@ PeterMac program: Call 9656 1744, or Visit www.petermac.org/ontrac, or E-mail ontrac@petermac.org A helping hand A new valuable resource for cancer patients, families and care givers The period directly after diagnosis can be particularly confusing for cancer patients. Some feel numb and are not ready to discuss the situation until they feel ready. Others look for immediate answers, researching everything they can. With an enormous amount of information available as printed material, word of mouth, or on the Internet, this process can be a little daunting. A Helping Hand is a DVD resource designed to help you get the right information, when and where you want it and in your own time. Disc 1 offers a comprehensive interactive journey that allows you to click on the segment most relevant to you. Disc 2 contains unedited personal stories shared by the many cancer patients who were kind enough to open their hearts. awareness and educating people about cancer. All content has been developed under the guidance of the Cancer Council Victoria. It gives an accurate picture of what to expect, where to go for help and ways for you and your immediate family, friends and spouse to best deal with the situation. After all, you are not alone. With cancer survival rates at an all time high, and with Australian clinical, diagnostics, healthcare and research teams that rank among the best in the world, there are an awful lot of people ready to offer you A HELPING HAND. To order a copy of A Helping Hand, call the Cancer Helpline on 131120 or visit the website: www.helpingonline.com Limbs 4 Life peer support volunteers will provide A Helping Hand in patient information packs for those who have experienced limb loss due to cancer. The DVD was produced with funds generously donated by the Picchi Brothers Foundation in Melbourne, a not for profit organisation dedicated to raising 05 Helping people with concerns about cancer The Cancer Council Victoria is committed to helping people affected by cancer. Cancer nurse, Edwina Beddoes talks about providing information and emotional support to callers to the Cancer Council Helpline. As a cancer nurse with more than twenty years oncology experience, Edwina Beddoes knows the importance of providing relevant information and emotional support to people affected by cancer. She began working on the Cancer Council Helpline five years ago, and describes the Helpline as a critical service that helps people deal with concerns about cancer. “The Helpline is accessable to anyone worried about cancer”, explains Ms Beddoes. “Callers can ask questions ranging from prevention, diagnosis and treatment, through to living with the side effects of cancer treatments and coping with advanced disease. We address issues with evidencebased information and give callers an opportunity to express their concerns.” “As calls are caller-focused, some people ring with specific questions that need to be addressed. Other times callers will say, ‘I don’t know what I need to know’, so it’s helpful to ask how they got here.” 06 With Helpline hours extended to 8.00pm Monday to Friday, Edwina said more people are able to access the service. “Many of the issues callers have are of a sensitive nature, and in the past they have found it difficult to ring with queries because of discomfort ringing due to work commitments and privacy issues. We also receive many calls from carers who, due to the constraints of their caring role, are unable to call until later in the day.” Edwina says after-hours calls tend to be longer, and many people talk of feeling alone and isolated. “Often callers express the value of feeling heard and being able to say how they feel at that moment. Because the service is anonymous, many callers open up and express feelings, fears and thoughts that they may never have talked about before. By telling their story, callers can often clarify issues and share their journey.” The Cancer Council Helpline is a free, confidential service. Telephone 13 11 20 Monday-Friday 8.30am-8.00pm Discover the science of cycloid vibration ™ Acknowledged as the benchmark in medical physiotherapy equipment, the clinically and medically proven cycloid vibration™ motor action creates deep penetration that: • Increases blood flow • Soothes pain • Helps lymphatic drainage • Relaxes muscles • Improves joint mobility • Assists the rehabilitation process For a free demonstration act now 1800 774 872 www.accelltherapy.com.au Meet Limbs 4 Life Volunteer: Annie Pateman My name is Annie Pateman. I am married to Dave and we have two adult children, Luke 29 years old and Jessica 26 years old. I am a left leg above knee amputee and have been since 1980. It was October 1978. I recall playing squash and stretching for a shot of the ball, falling to the floor and crashing into the metal on the wall. Bang. My knee had smashed into it. the ache became a lump the size of a tennis ball on the inside of my left knee. The pain was intense and I could hardly walk. Fool’s Day), I was diagnosed with Ewing’s sarcoma (bone cancer) – a condition commonly found in children. From that day onwards my knee was never the same. It started with an annoying, incessant, aching. 12 months after the squash incident, we moved to the country near Traralgon. I became pregnant with my second child and during the pregnancy my symptoms accelerated. Over the next 18 months, I had been treated for a number of conditions including a strained knee, bursitis, and arthritis until 26 years old and 26 weeks into my pregnancy, I was checked into hospital and, after a biopsy on the 1st April 1980 (yes, April Because I was pregnant, I could not take any medication for pain relief and I found myself wishing for my leg to be “chopped off”. My thoughts were that the pain will go, the baby will be born and I could then move on with my life, learn to walk, continue looking after my husband, young son and new baby. 08 “The support and encouragement from my family has enabled me to achieve all that I have wanted to achieve and more.” As it turned out, my leg was amputated on Good Friday – 4th April 1980. I was told that there was a strong possibility I would miscarry due to the trauma of the surgery. Well, the bonus we received was that our unborn baby survived the surgery. This posed a dilemma for the medical team (surgeon, paediatrician and gynaecologist). They wanted to start the rest of my treatment (chemotherapy and rehabilitation) immediately after the amputation, but they were concerned for the safety of the pregnancy. After much consultation, it was agreed that the baby would be induced at 32 weeks. Fortunately at that time, I was ignorant of the risks and health problems endured by premature babies. Prior to going to the Royal Women’s Hospital for the birth, the surgeon arranged for a young lady to visit me. She was 19 years old, and an above knee amputee. Meeting her was a turning point. This young lady inspired me no end. She played netball and iceskated. I was determined to walk again. I thought, “if she can do that, the possibilities are endless for me”. I was back on the squash court eight months after losing my leg. Four weeks later, it was time to have the baby. Dave took me to the Royal Women’s Hospital where, on the 8th May 1980, Jessica was born (a healthy 3½ lb and 11” long – and less than the length of a ruler). She was determined to make her way into this world. Both Jessica and I required blood transfusions. Some time after it was announced that a new disease had been discovered called HIV, and all blood products needed to be screened. Infected blood was around at the time of our transfusions. Again, Jessica and I survived that throw of the dice. mainly through ten-pin bowling in the National Disabled Ten-pin Bowling Championships and State tournaments. I have had success in winning a number of medals in team and individual events, and meeting people with all forms of disabilities. Jessica stayed at the Royal Women’s Hospital for eight weeks, and I started my 12 months of treatment and rehabilitation at Hampton Rehabilitation Centre. This was the most difficult part to deal with, leaving Jessica behind in the hospital alone, as well as being separated from Luke. I have also played at Dandenong Bowls in a team with able-bodied bowlers. I enjoy swimming, have attempted golf and even climbed Mt Kosciusko. During rehab, I learned to walk with my new leg, which was made from spare parts. A trolley was developed for me out of pine, which would assist me to transport Jessica around the house. Being a new amputee, I didn’t have the skills or the confidence to hold a brand new baby whilst walking, so she was wheeled around from room to room. I also learnt domestics such as cooking standing on two legs. I have never forgotten practising carrying two cups of tea up and down the gym during rehab. I remember swimming successfully for the first time as an amputee. When I called my husband to tell him about this major achievement, instead of getting the words of encouragement that I was expecting, he asked me if I went round in circles. We both laughed. Fast-forward 26 years. I work full-time for a pharmaceutical company and drive to work every day. I have been involved with the Amputees Association of Victoria, I have just joined a gym for ladies called Curves, which I attend three times a week. This particular gym really suits my disability. My stamina, flexibility and strength have already improved in the eight weeks since joining. My latest venture is travel. Dave and I recently travelled to England and Europe for six weeks, and I travel to the NSW Central Coast where Jessica now lives with her partner. The advantage of travelling with a disability is being treated as a first class passenger and not having to wait in queues. The support and encouragement from my family has enabled me to achieve all that I have wanted to achieve and more. My sister was there for me at the drop of a hat. I now look forward to becoming a valued volunteer team member joining Mel, Jacinta and the rest of the team at Limbs4Life. I hope to assist and inspire new patients to meet their challenges and demonstrate that you can live a much fulfilled life, as the young 19 year old lass (who would now be 45), inspired me. Cheers, Annie 09 Shane Luke Australian Amputee Golf Champion At just 15, Shane Luke lost his right leg above the knee due to bone cancer. Shane’s limb loss, however, has not impinged upon his dream of becoming an internationallyacclaimed golfer. Throughout his youth, Shane always held a passion for sports. He started playing golf with his father when he was 12, initially on a handicap of 25. By the time he was 15, Shane was playing off a handicap of 10, but his sport was to come to an unexpected halt after being diagnosed with bone cancer. Championship, where he defeated Geoff Nicholas. “Being the first to defeat Geoff in amputee golf was a personal highlight considering Geoff’s talent and many championship titles worldwide. Geoff has shown us the way. To become a professional and play on the tour is something I dream about.” After the loss of his right leg and while still receiving chemotherapy, Shane’s father took him to the local driving range. His father teed the ball up and Shane hit it while balancing on his left leg, not falling over once. His father was amazed. Since that moment he has never looked back, and his passion for golf continues. Shane won his third consecutive Australian Amputee Golf Championship in Port Stephens last March. He was challenged by 33 participants from New Zealand, the United Kingdom and Australia. He was thrilled that Open Champion Brett Ogle from the Golf Show on Fox Sports watched the last few holes at the Australian Championship, and included a segment on the Golf show. The Milperra Sports Complex is home to Shane’s busy training schedule, and also where he hopes to run golf clinics for other amputees in the near future. Having recently qualified as an instructor with the AGTF (Australian Golf Teachers Federation), he will also be available at Milperra Driving Range for private after-hours lessons. Shane is eager to attract more competitors to the Australian Championship, stating that the event is open to all levels of golfers (beginners included). “It was great to play with Ben Tullipan at the 2007 Championships. Ben lost both legs in the Bali bombings, and had only been playing for 10 weeks prior to the tournament”. His sponsors, Otto Bock, Taylormade-adidas and Milperra Sports Complex have been an essential element in his sporting achievements. When he is not on the driving range, his greatest love is spending time with his family. Shane is indebted to his wife Helen and children Jason and Scartett for their ongoing love and support. Now 35, Shane can strike a tee shot 260 meters. Incredibly, he has attained a handicap as low as 1 and is currently playing off a 4. His early technique has continued as he chooses to take his prosthetic limb off when he plays each shot, balancing skillfully on his left leg. Achievements in his sporting career include winning the 2002 World Amputee Golf 10 Shane was previously employed by the Torch newspaper in NSW where he worked for 17 years as a Graphic Designer. He is now working with the German componentry company Otto Bock as a service technician for prosthetic knee joints. He is looking forward to travelling to Germany later this year for MYO (electronic) hand repair training. 2007 Chrysler Australia Victorian Amputee Golf Championship limbs life 22-23 November 2007 Tirhatuan Lakes Golf Course Rowville for more info call 1300 782 231 or email info@limbs4life.com A Closer Look at Componentry Prosthetic Hip joints Prosthetic management of the hip, trans-pelvic and lumbar regions is a rare opportunity for the treating prosthetist, and a significant challenge for the amputee. The physical loss, often complex co-morbidities and the amount of energy required to walk with these prostheses (~ 200% more than normal walking) can often mean that prosthetic management is overlooked. The Amputation levels that would require the use of a prosthetic hip joint are any level where the femur has been removed or is too short to provide functional movement and control over prosthesis. These include: • Very short Trans-femoral amputation • Hip disarticulation • Trans-pelvic • Hemi-pelvectomy or hind Quarter • Hemi-corporectomy • Trans-lumbar The most common cause for this level of amputation is the management of aggressive bone and soft tissue tumors. Traumatic loss at this level is not unheard of, but quite rare due to factors such as blood loss and the multiple traumas associated with high impact injuries. What functions does a hip need? The prosthetic hip needs to transfer the weight of the body safely from the socket to the ground via the knee, ankle and foot. Just as importantly, the hip must allow at least 90 degrees hip flexion for sitting, whilst not overly affecting the height or level of the pelvis. To achieve this, most modern hip joints have an L-shaped anchor plate that is attached to the front socket. FIG 1 12 Prosthetic hip with internal spring extension assist This design enables hip flexion without that locked joints were unnecessary in hip disarticulation/transpelvic greatly impeding sitting balance. prostheses (Van der Waarde & (Fig.1) Michael, Atlas of Limb Prosthetics When compared to the functional Chapter 21B, 1992). variability of the prosthetic knee joints (described in issue 7) the Once the socket and hip design has currently available hip joints are much been selected by the prosthetist, simpler by design. The differences in the selection of the knee and ankle available hip joints across prosthetic components are similar to that of suppliers are essentially quite small. above knee amputees (transfemoral). Most hips have an extension assist However, toe clearance when walking of some design, be it an externally is more difficult to achieve due to the placed elastic band or an internal passive nature of the prosthesis. This spring mechanism as illustrated in means that, generally, the hip or transFig. 1 and 2. In addition, some hips pelvic prostheses are deliberately have a simple locking mechanism shorter than the sound side. that prevents any movement whilst The success of this often standing and walking. (Fig.2) cumbersome prosthetic management Carbon Composite strut systems have relies on the comfort of the prosthetic also been added to offer dynamic socket, the alignment of the carefully motion and some shock absorption selected (patient-specific) prosthetic during stance. These systems have components and, most of all, the also been reported to increase the balance and motivation of the speed with which the knee flexes for amputee. the swing phase. (Fig 3) The design of the socket, foot and knee used by the prosthetist will have as great or a greater affect over ultimate function than the hip joint design alone. In the 1950’s, Radcliffe’s biomechanical analysis of the forces necessary for ambulation led to the development of the “Canadian” design (now the most commonly-used), which demonstrated FIG 2 Prosthetic hip with lock FIG 3 Prosthetic Hip with carbon composite strut Working with Amputees Industry Profile Chris Shannon Prosthetic technician How did your involvement in prosthetics begin? Funny story, actually. I was a panel beater in sunny England when I saw an advert in the paper for a sheet metal worker at Chas A Blatchford, which I applied for and successfully got in 1970. Little did I know that the job was for a prosthetic technician! What does your job involve? Manufacturing limbs (both upper and lower) extremities. This includes: • Draping plastic • Laminating • Leather work • Shaping cosmetic covers Basically, all the technical aspects associated with fabricating prostheses. I also adhere to the high demands of the prosthetic clinicians! Where have you worked? 1970 – 1990 Chas A Blatchford’s, England 1990 – 2003 Orthopaedic Techniques (OT), Fitzroy 2003 – 2005 Otto Bock 2005 - Ongoing Caulfield General Medical Centre people, and in particular, I enjoy seeing patients walk out of the facility after arriving in a wheel chair, knowing that I have contributed to the making of their prosthesis and helped improve their quality of life. Are there any special events that have happened in your career? I have many special memories that have happened in my 37-year career, What is it about this career path that including a Queen’s award for new you enjoy? technology with Endolite (Blatchfords). When I first moved to Melbourne, I was I like the hands-on aspect of my job. I also enjoy watching the progression of travelling the country with Orthopaedic prosthetic technology as it develops. Techniques, doing workshops and meeting prosthetists which I thoroughly In the old days, I made limbs by hand out of aluminum, which I would planish enjoyed. Another highlight was being selected to attend the Amputee (smooth) to shape. Now prosthetic Association golf week at Tweed Heads technology includes carbon fibre as the prosthetic technician. plastics, etc. I also enjoy meeting 13 Unleashed! Limbs 4 Life Co-Patron Tim Matthews I was born without my left arm 32 years ago in the East Gippsland town of Orbost. I had a condition known as Exompholas, where the abdomen fails to close around the umbilical cord. In my case, the Exompholas exposed a number of organs, including my liver. The membrane protecting my exposed organs ruptured when I was only a couple of days old, causing many complications. As a result, I spent much of my early life at the Royal Children’s Hospital in Melbourne. In about 30% of cases, Exompholas occurs in conjunction with other birth abnormalities. In my case, I was born with some webbed fingers and without my left arm. Following a number of operations and skin grafts, my parents relocated to Bairnsdale. From a young age, I loved sport and was fortunate to attend a small primary school where sport was a celebrated part of the community. As a youngster, I played various sports including football, tennis, golf and baseball. I only played football until I was 12, as my liver was not protected by my ribcage and any solid hit to it was very painful. I became mindful at an early age of the types of sports that would suit me best. For me, growing up with one arm was never an issue. I think it is far less difficult to be born with a limb difference than it is to lose a limb later in life. Aside from playing full contact sports, having one arm didn’t stop me from doing anything that my mates could do. Not knowing anyone else with a similar disability made it necessary for me to think outside the square. Whether it was learning how to tie my shoelaces, The Paralympic Head Coach for athletics suggested that the 1996 putting on a watch, serving in tennis Paralympic Games in Atlanta were a or playing baseball with a glove, I was possibility for me. Ten months later, I always independently determined. got myself a coach, started training Being born with only my right arm and transferred my studies to part and always using the right hand side time. I qualified for Atlanta in the 100m, of my body resulted in a scoliosis of 200m and 4x100m relay events for my spine. When I was in grade 6, I amputees on the track. Although Standing on the medal dais with the national anthem playing and the flag being raised in our honour was a moment I will never forget. received my first back brace. I hated wearing it. I was supposed to wear it for 23 hours a day, but I despised it. I couldn’t play sport wearing it, couldn’t ride a bike with it on and had trouble sleeping in it. By the time I was 16, I had scarcely worn my brace and the specialists decided that enough was enough. I had a spinal fusion to partially correct my scoliosis. If I had my time over again, I definitely would have worn my brace. Having a spinal fusion at 16 was tough. I spent the following two years off the sporting field. Following high school, I studied Outdoor Education at Bendigo University. My core subjects included rock climbing, bushwalking and skiing. They challenged me and I learned a lot about myself. During my third year of study, I was invited to play in an amputee tennis tournament in Melbourne. I had never played sport against athletes with disabilities. This was for a couple of reasons. Firstly, I was able to play sport at a reasonable level against able-bodied participants. Secondly, as I was born without my arm I didn’t think that I was eligible for disability sport. I hadn’t considered myself an “amputee”, but for the purposes of disability sport, I soon realised that I was eligible to compete against other 14 people with disabilities. The tennis tournament changed my life. It was there that I met David Evans, another tennis player who suggested that I have a go at athletics. A couple of months later, I competed in the Australian Amputee Athletic Titles and did reasonably well, winning my events. I missed out on winning an individual medal, I was fortunate to be a part of the relay team that won gold and broke the world record. Standing on the medal dais with the national anthem playing and the flag being raised in our honour was a moment I will never forget. Following Atlanta, I moved to Melbourne to further pursue athletics. Leading up to the Sydney Paralympic Games, I was consistently running under 11 seconds for 100m. This has been the benchmark for upper limb amputee sprinters around the world. The Sydney Paralympic Games in 2000 was an incredible experience. The Games put disability and the abilities of disabled people at the forefront of a mainstream audience. The crowds loved it, and we were finally being recognised by the public as athletes first. Although I missed out on placing in the 100m, I was again part of the relay team that won the 4x100m. We also won the 4x400m in world record time. Australia has a great tradition in relay events, and they are fantastic for team morale. I feel fortunate to have been part of the Australian athletics team that won 32 gold medals. Following Sydney, I set my sights on Athens, aiming to win my key event, the 100m. Sadly, I tore my hamstring in the heat and instantly knew that my Games were over. Although it was disappointing, it’s easy to keep things in perspective at an event such the Paralympic Games. Leaving the stadium with athletes of all abilities, I am reminded of the amazing opportunities I have had. Hopefully a fourth Games in Beijing next year will provide a unique experience, as every Games thus far have done. The 12 years of my sporting career with the Victorian Institute of Sport have enabled me to travel to 28 counties around the world. I have met some truly inspirational people, some of the best athletes in the world, Prime Ministers and even the Queen. I feel privileged for the experiences I’ve had. I have also had the good fortune to room with my best mate, best man at my wedding late last year and co-patron of Limbs4Life, Don Elgin, at competitions all over the world. We have loved every minute of it. I’m now employed by the Australian Paralympic Committee, managing the Toyota Paralympic Talent Search Program that aims to identify and assist the Paralympic stars of tomorrow. A big well done and congratulations to both Mel and Jacinta for their work in getting Limbs4Life off the ground and assisting amputees in the community. I am delighted to be on board! Life is to be lived, so enjoy… Tim Matthews Life is to be lived, so enjoy... 15 Amputation in the case of cancer: A case study Narelle Warren, Lenore Manderson & Peter Disler Most clinical and research literature investigating decision-making about amputation following a cancer diagnosis has been concerned with doctors’ perspectives. In particular, clinical information addresses when amputation should occur – that is, for what types of tumours and how, and at what level (e.g. above knee, below elbow). Amputation following bone sarcoma or soft tissue sarcoma is often performed in instances where, for various reasons, limb salvage or reconstruction is either not performed or has been performed unsuccessfully (Wafa and Grimer 2006). Ghert and colleagues (2005), for example, found that medical specialists consider the location and extent of the tumour when deciding whether to perform an amputation, although they also take into account the physical functioning of the affected limb post-surgery. International research (Zahlten-Hinguranage et al. 2003) has shown that people’s quality of life and subjective wellbeing is similar regardless of the type of treatment (limb salvage or amputation) and thus the clinical decision-making is based on oncological factors (i.e., associated with the cancer itself). study (described in previous issues of Amplified) exploring the social aspects of amputation. Charles experienced unexpected, sudden and long-lasting pain, after which his symptoms progressed rapidly. As a result, he had to decide quickly whether or not to undergo amputation. Overall, eight weeks elapsed between the onset of symptoms and his amputation. In the following quote, he described the choice that he was given: [My doctor] didn’t really tell me I had to have the amputation. He gave me a choice. They do leave it to you because you have to agree. He gave me three alternatives. He said, “You can get up and walk out of here… [or] I can try to remove the tumour and leave a big hole in your leg. But then you will still have a leg and I can’t guarantee I will get all the tumour. Or you can have an amputation, which would probably get it all”. The first one was eliminated because I wasn’t going to get up and walk out [because] the thing would take over and kill me in a comparatively short time because of the aggressive nature. The second alternative [was] to have it operated on and removed. It was rather large, eight There is little information, however, inches by two inches wide, but he in research or clinical guidelines, couldn’t guarantee success. So… he about what the person diagnosed recommended [that] I go away think with cancer takes into consideration about it and come back in a couple of or how they feel during decisionmaking concerning amputation. In this days. So I decided that I had to have [the amputation]… I guess in my own short article, we offer a case study heart, I knew that radical treatment of decision-making for a man we call had to be performed. I accepted it. Charles (not his real name). Although I didn’t like to accept it but I had to osteosarcoma is most common in accept the fact that this was going to younger people (Tebbi and Gaeta happen. There was no trying to hide 1988), Charles was diagnosed when away from [the decision to have an he was 75 years old. His decisionmaking therefore was based on factors amputation]. It was going to happen. It was a bit of a shock, I suppose, but different from those that might be considered by younger people. Charles I had to make my mind up quickly. So, yeah, I accepted that things were participated in an in-depth interview going to be a little bit life changing. with us at the end of his inpatient rehabilitation, as part of our larger As he explained, Charles made 16 his decision in a similar way to his medical professionals and, in doing so, was concerned with what type of treatment (i.e., what procedure) offered the highest chance of success. He conceptualised success around three factors: which procedure would remove the entire tumour, which procedure would cause the least trauma to his body and which procedure would maximise his chances of recovery. Given the size of the tumour, amputation offered the best opportunity for success of these three factors. Indeed, he believed that amputation offered the only way to adequately treat his cancer. Ideas about success were not the only considerations Charles made, however. Family support was important, and he discussed his treatment options with his wife and children. Pain relief was also important: [Over] the eight weeks. I was getting sorer. Before the operation, the pain level was acute, and I mean acute. There was no sleep; there was no relief. The only slight relief I got [was when] I went back to the surgeon and said the pain is absolutely driving me mad. He could see I was in a lot of pain and he gave me a medication. I think it was a mild dose of morphine, which sort of subdued it a little bit and “Family support was important, and he discussed his treatment options with his wife and children.” then I had the operation. Although cancer treatment often involves chemotherapy, this was not the case for Charles. He chose not to have chemo because he was extremely worried about the side effects. His concerns about these were partly involved in his choice to have an amputation rather than limb salvage surgery. During his interview, Charles described how he based his decision on cancerrelated factors (getting the tumour and reducing pain), centred on what would cause the least disruption to his lifestyle. In this way, his decisions resembled those of the medical professionals and were pragmatic in nature. This provides a brief snapshot of his story, however his pragmatism was an important finding. Our other data indicates that people who have an amputation for other reasons emphasise how social factors play an important role in their decisionmaking. For example, the decision to have an amputation is often made after ongoing consultation with family members or, when the amputation occurs due to a medical crisis, is made by the family members. This may relate to the perceived options available. Where multiple treatments are seen to be available, considerable negotiation occurs within the family and wider social network. However, this was not the case for people such as Charles. At the same time, social support and participation were important to all recent amputees, regardless of the reason for their amputation. This suggests that information preamputation and social support postamputation need to take different underlying health conditions and reasons for amputation into account. References: Ghert MA, Abudu A, Driver N, Davis AM, Griffin AM et al. (2005). The indications for and the prognostic significance of amputation as the primary surgical procedure for localized soft tissue sarcoma of the extremity. Annals of Surgical Oncology, 12(1): 10-17. Tebbi CK & Gaeta J (1988). Osteosarcoma. Pediatric Annals, 17(4): 285-300. Wafa H & Grimer RJ (2006). Surgical options and outcomes in bone sarcoma. Expert Review in Anticancer Therapies, 6(2): 239-248 Zahlten-Hinguranage A, Bernd L & Sabo D (2003). Amputation or limb salvage Assessing quality of life after tumor operations of the lower extremity. Orthopade, 32(11): 1020-1027. Social support and participation were important to all recent amputees, regardless of the reason for their amputation. 17 The Amplifier Be Heard THE AMPLIFIER is a new addition, and it’s your chance to have your say! One of the most frequent responses in the Amplified survey was to include a ‘Reader’s amputees in the community. So be heard. We appreciate your opinions and contribution. Please write to: The AMPLIFIER P.O. Box 282 Tunstall Square, East Doncaster 3109 E-mail: jacinta@limbs4life.com Phone: 1300 782 231 Column’. This is your opportunity to share any tips that have helped you along the way as an amputee, or perhaps provide us with some feedback on Amplified articles, send in a useful website link, tell a joke or even have a vent about something that’s giving you the gripes! This is your window to connect with other Your privacy is of utmost importance to us. We will only identify readers by their first name and state or suburb of origin. If you do not wish to be identified at all, please state that clearly in the letter. To get THE AMPLIFIER started, here are some feedback comments and suggestions from the recent Amplified readers’ survey and responses about Limbs 4 Life services and events: Readers’ Column “I would like to see more articles of how other amputees cope - like Angela Snow’s article - that was fantastic.” Robert, VIC “I would like to see a Question and Answer column from readers, backed by answers from therapists, prosthetists and doctors, etc. Similar columns in commercial papers are very popular and useful.” “I find Amplified’s stories/articles inspiring and informative. Any information that shares knowledge and experiences assists amputees and those working with them to achieve better outcomes.” Fiona, VIC “Thank you for the information and support - it was wonderful.” Sonia, Berwick “I really appreciated the information you sent. It made a huge difference to our family, and thank you for responding so quickly.” Dianne, NSW “I love the Golf Day. In all the years I’ve been an amputee, I’ve never met another, and this has changed my life.” Terry, Footscray “Hello, I’m a below knee amputee of 2 months. I live in Sydney and was unable to find any information until I came across your website. It’s excellent. Thank you so much.” Kerry, NSW 18 Send in your comments for the next AMPLIFIER and go into the draw to win a copy of Gill Hicks new book, One Unknown. Please include your full name and postal address in case you win! news In conjunction with Amputee Awareness Day last June, Limbs 4 Life members were invited to attend an afternoon with guest speaker Tommy Hafey. Tommy highlighted the importance of people remaining active by finding a sport or activity that suits the individual. He believes that age is no barrier in trying new things and achieving new goals, emphasising that no matter the circumstance we should all strive to be ‘the best we can be’. He was undoubtedly an inspiration to all. Limbs 4 Life is most appreciative to Niagara, who graciously organised for Tommy to come along. belief in supporting the outcomes of what they see as an emerging and essential organisation. Other speakers included amputee Stuart Tripp, who spoke about his new book Travelling Hopefully. Stuart shared his experience of limb loss and highlighted the importance of peer support and guidance during the time of recovery. Anthony Ferraro from Niagara spoke about the company’s partnership with Limbs 4 Life, noting that their drive comes from a deep MC was Limbs 4 Life Co-Patron Don Elgin who, as anticipated, entertained the crowd with his infectious sense of humour. Limbs 4 Life is appreciative of Wheelchair Sports Victoria and Matthew Fittolani from Functional Training Perspectives for displaying their services, and to all of the participants for sharing such a wonderful afternoon. Limbs 4 Life was saddened to hear of Australian Paralympic champion Michael Milton’s cancer diagnosis in July. Michael said, “I’ve beaten serious cancer once already, so I am confident I can do it again. However, it also means I have a pretty good idea of how tough my life will be as I go through the treatment - but I’m up for the fight.” Our positive thoughts and support are with Michael and his family. 19 International Day of People with Disability (IDPwD) is a United Nations-sanctioned day to celebrate the achievements, contributions and experiences of people with disability. )NTERNATIONALß$AYßOF The day brings together people with disability, non-government organisations, businesses, all levels of government and the wider community. IDPwD is supported by the Australian Government’s Department of Families, Community Services and Indigenous Affairs (FaCSIA). In 2006, hundreds of events were held across Australia to celebrate IDPwD. 2007 To find out more about IDPwD, view a calendar of events in your state and learn how to get involved, visit www.idpwd.com.au. You can also check the website for regular updates on IDPwD events and news. Victorian Seniors Festival “Movember” (the month formally known as November) is an annual charity event held during November. At the start of Movember, participating men register with a clean-shaven face. The Movember participants (known as “Mo Bros”) then have the remainder of the month to grow and groom their moustache and raise as much money and awareness about male health issues as possible. In 2006, 44,756 “Mo Bros” and “Mo Sistas” raised $6.63 million. The net proceeds were donated equally between Beyondblue (the national depression initiative) and the Prostate Cancer Foundation of Australia (PCFA). Keep an eye on the Movember website for updates and news on the 2007 campaign - www.movember.com.au. World Diabetes Day On 14th November 2007, the current International Diabetes Federation’s World Diabetes Day will be observed for the first time as a United Nations Day. The theme for 2007 is Diabetes in Children and Adolescents. For more details about the campaign, visit the World Diabetes Day website, www.worlddiabetesday.org. 14th November 2007 20 For local Victorian events observing World Diabetes Day, visit the Diabetes Australia Vic website: www.dav.org.au. Phone: 1300 136 588 Victorian Seniors Festival 7th – 14th October The Victorian Seniors Festival celebrates its 25th anniversary in 2007. It begins on Sunday 7th of October, continuing until 14th October. The annual festival is a week-long celebration for seniors. It includes hundreds of free or low-cost events, forums and activities across Victoria, as well as free public transport for Victorian Seniors Card holders. The festival recognises the valuable contribution that older people have made and continue to make in our community. To find out more visit: www.seniors.vic.gov.au 7th -14th October 2007 Call: (03) 9603 8828 www.seniors.vic.gov.au Limbs 4 Life is proud to be hosting the first Victorian Amputee Golf Championship at Tirhatuan Lakes Golf Course. Tournament details and registration forms are available on the website, www.limbs4life.com phone 1300 782 231 Registration closes October 1st 2007 22nd & 23rd November 2007 2007 Chrysler Australia Victorian Amputee Golf Championship Tirhatuan Lakes Golf Course Cnr Stud & Police roads Rowville Much more than Australia’s only regional disability arts festival ... Awakenings is a festival for everyone. Come and share the Awakenings Experience p: 03 5362 4006/ 03 5362 4058 e: awake@wimmera.unitingcare.org.au w: www.awakeningsfestival.com.au IT’S ON AGAIN 12th – 21st The Awakenings Festival… October 2007 Ten days in October in Horsham Lawn Bowls Lawn bowls is a sport in which people with disabilities can compete equally with able-bodied competitors, without any modifications to the rules. Wheelchair Sports Victoria’s bowlers bowl regularly with their local lawn bowls club, and are involved in a number of multi-disability events held around Victoria and Australia. Each year a team of ten athletes with a range of physical disabilities is selected to represent Victoria at the National MultiDisability Lawn Bowls Championships. Access to Lawn Bowls Greens Lawn bowlers in wheelchairs have access to both grass and synthetic greens, however wide tyres are required to protect the greens. Most bowling clubs in Victoria are wheelchair-accessible and are extremely welcoming of athletes with disabilities. For more information about the sport, view the Bowls Victoria website, www.bowlsvic.org.au. For more information about Lawn Bowls opportunities with Wheelchair Sports Victoria, contact Hilary Poole on (03) 9473 0133 SKI ABLE Ski Able is a national organisation promoting waterskiing for people with physical disabilities and vision impairments. Skiing can be: • Recreational with family and friends • Competitive with local mainstream clubs or at world level • Slalom, tricks and jumps Contact Alison Smith (Victoria) 0417 739 331 National web: www.disabledwaterski.com.au Web link www.talbronstein.org The talbronstein website is dedicated to bringing you news about amputee athletes around the world. It also contains links to amputee websites and books 21 One Unknown Gill Hicks Australian-born Gill Hicks was on her way to work on a Piccadilly line train on 7 July 2005 when a terrorist bomb exploded in the carriage in which she was travelling. Amazingly and against all the odds, she survived the blast, but due to the injuries she sustained her legs had to be amputated. In this moving memoir Gill recounts the events of that day, from facing the very real prospect that she might die and her subsequent fight to live, to later coming to terms with losing her legs and living life as a disabled person. The book includes excerpts from the diary she wrote during her rehabilitation, an account of her wedding day in December 2005, and traces the journey of her extraordinary recovery. Having survived this life-shattering experience, Gill asks important questions about how we set our priorities and the way we live our lives. She motivates readers to “seize the day” and live life to the full while striving for a better, more tolerant world. Her powerful message has a broader audience than most “ordinary” motivational books because of the experience out of which it was borne. This moving account is told with great integrity and honesty, and Gill’s lack of self-pity and keen sense of humour lighten the tone and make this book very special indeed. One Unknown is available at all good book stores TYPE 2 DIABETES: MEASURE YOURSELF. MEN - 90cm WOMEN - 80cm 100cm 90cm A waistline of over 100 cms for men and over 90 cms for women puts you in the highest risk category for type 2 diabetes. See your doctor if you’re at risk. To lower your risk men should aim for a waistline of around 90 cms or below and women around 80 cms or below. Reduce your waist. Reduce your risk. 22 www.diabetesaction.com.au | Diabetes Australia: 1300 136 588 Get your patients up and running faster Acknowledged as the benchmark in medical physiotherapy equipment, the clinically and medically proven cycloid vibration™ motor action creates deep penetration that: • Increases blood flow • Soothes pain • Helps lymphatic drainage • Relaxes muscles • Improves joint mobility • Assists the rehabilitation process For a free demonstration act now 1800 774 872 www.accelltherapy.com.au Limbs 4 Life can assist with • ONE-ON-ONE PEER SUPPORT VISITS • INFORMATION AND RESOURCES • SOCIAL ACTIVITIES AND CONNECTIONS • RESEARCH AND PUBLICATIONS Limbs 4 Life supporting amputees 1300 782 231 THE MAIN CAUSES OF AMPUTATION ARE Diabetes • Vascular Disease • Cancer • Trauma • Infection • Congenital differences Help support Limbs 4 Life. Make your donation today.
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