Hi, everyone! I am Suranjana Ghosh, an Osteosarcoma survivor and above knee amputee from Mumbai, India. Most people mangle my name, so I go by an abbreviated version of it, which is Su.
I am here on The Active Amputee, to share some of my experiences and perspectives from being a South Asian, brown woman with an acquired disability. For this first post, I’d like to start by telling you a bit of my story.
I have joined hands with Chris from South Africa so that together we will be able to offer even more information and inspiration to an even wide variety of people with limb differences. As you will hear more from Chris over the coming months, I thought it's time I introduce him to you officially.
Today I would like to introduce you to Chris from South Africa. You will hear more from him over the coming monhts. Chris and I joined hands to be able to offer more information and inspiration to a wide variety of people with limb differences. From now on Chris will be a regular contributor to The Active Amputee. I will tell you a bit more a bout him and his story in a few days' time. But for now, let's start with the first guest post by Chris. An article about how finding the right prosthetist made all the difference for him to be able to live a pain-free, active, and fulfilling life as an amputee.
As part of my cooperation with yoocan, I would like to share the story of Lisa Ludwig. Lisa was diagnosed with cancer at an early age. While the osteosarcoma took her leg, it never took her spirit and positive attitude. Several years later she is an active mentor to other cancer patients and amputees and - for some time - had taken up the role as brand ambassador for a company that produces prosthetic covers.
My story started when I was 15 years old. And although the diagnosis from back then has little relevance for my life today, those days have had an immense impact on me - also in a positive way. Those days have shaped me and made me who I am today. From one day to the next my life changed completely. Suddenly nothing was as it used to be.
This week is a special week as I have been teaming up with the folks from Paradox Sports in the US to bring the amazing sport of paraclimbing to the attention of more people with limb differences and other disabilities. As some of you might know, Paradox Sports is breaking down barriers by making climbing - and the climbing community - accessible to all. Since 2007, Paradox has run transformative adaptive climbing weekend trips in the most iconic climbing destinations in the United States – Yosemite Valley, Joshua Tree National Park, Red River Gorge, The Tetons, Ouray Ice Park, and more. These trips have been a place to connect, push limits, and change beliefs about what is possible for people living with a disability.
In a joint effort to spread the word about this amazing organization, about a sport that is dear to us, and about the joy it can bring to people of all abilities, we hear from Shelley Brook, the operations manager from Paradox Sports. Paradox Sports will publish one of my posts on its webpage. And we are currently recording the next podcast for The Active Amputee (the Auguts issues), featuring Dom Pascariello, the organization's National Program Manager. So stay tuned.
Adenike Oyetunde is a lawyer and radio presenter from Nigeria‘s economic and cultural powerhouse Lagos. She lost one of her legs due to bone cancer when she was in her early twenties. Adenike, always full of ideas, recently founded Amputees United, an initiative to assist cancer patients and amputees. "I want to help them wade through the storm, because honestly, I went through this, that I may help them on their journey. We at the Amputees United Initiative would love to help them come to terms with their new reality."
Most above-knee amputees know this problem: Finding the right prosthetic knee is not an easy task. For most of us it means working out the right compromise between our day-to-day needs, our spare time interests, and our ambitions for the next couple of years on the one hand and our health insurance plan or financial means on the other hand. This in itself is already rather complex. Things get even more complicated if we take into account that even the best of knees can only unfold its full potential if mounted under a well-fitting socket, combined with a good foot that suits our activity level.
So much for the theory. But what does this actually mean in practice? Well, there are several ways of dealing with this challenge. And there are significant differences depending on the country you live in and the health service that applies to you. So…
As many of you already know: I am a huge fan of podcasts and audiobooks. While - way back when I was single and without kids - I used to work my way through tons of books each year, audio formats are now my favorite medium to stay informed about the world around me. Anything from political analysis to a thrilling crime story, from travel literature to tips and tricks for entrepreneurs . So it's great news for me that there is an ever-increasing number of high quality, very informative, pioneering shows out there. And most of them are completely free.
I guess many of you are also avid podcats listeners. And if you are not yet hooked, maybe you are willing to give it a try. Back in September 2018 I introduced you to some of my favorite shows of the time (if you missed the article back then, here is the link). Since then, more shows are up and running and I think it's time for an update on great podcasts for people with a limb difference.
So (drum roll please) here we go!
I am Angela and I lead a humble life in London. I trained as a nurse in 1970 to 1974 majoring in Adult and Pediatrics. I had a passion to work in a ward majorly for children with disability. When I was expecting my first child, I could hardly bear the emotional toll of the seeing amazing little children suffering. Unfortunately, after having four healthy children, I still did not go back to nursing for quite a long time. I spent a bulk of my career in private practice, working with a general practitioner and a series of years in the non-profit space. I then took a drastic detour and trained to be a priest in the Church of England.
Following a life-changing accident in 2010 resulting in a spinal cord injury and the amputation of his right leg below the knee, Josh has been coming back strongly. Since the very beginning, his aim has been to be rehabbing until he reaches a stage where Josh can do everything he was able to do prior to his injuries. "My goal is to make myself a better, and more capable version of myself every day." Listen to the full interview with Josh on the new episode of The Active Amputee podcast.
Welcome to part IV of our mini-series. The physical limitations that often go hand in hand with an amputation are only one aspect of living with a disability. Stigmatization and social exclusion are other aspects that need to be overcome. CoRSU is working with a wholistic approach to assist people with disabilities to fully participate in all the activities of their communities and live a life in dignity. Providing amputees with a prosthetic device is often only the first step in a long rehabilitation process.
Welcome to part III of this special mini series. While last time you got to know Miracle, one of the many people whose life was changed by CoRSU, I would like you meet Moses today, the head of the prosthetic unit at the centre.
Welcome to part II of our Special on the Comprehensive Rehabilitation Services in Uganda (CoRSU) Hospital in Entebbe. Today you meet a little boy named Miracle. One of the many patients who benefited from the great services that the CoRSU team offers. Having access to a police like CoRSU is often the deciding factor between a life in dignity, fully integrated into society and a life on the margins of the community, excluded and dependent on others.
After a very hectic two months in which adjusting to the special Corona situation dominated my daily routines - moving my business online, getting used to home schooling three kids, organising the weekly supply runs for a family of six withour a car etc. - things are slowly returning to a more manageble pace. And with this new pace, it's time for a new episode of The Active Amputee Podcast.
During a recent trip to Uganda, I had the chance to link up with an old friend of mine. We know each other since the early 2000s when we were both living and working in Gulu in northern Uganda. It was back in the days when a brutal civil war was raging in the Acholi subregion of this East African country. I was working with the Justice and Peace Commission of the Catholic Archdiocese of Gulu while Davide was committing his time and expertise to the health sector. As an experienced physiotherapist and with an immense passion for providing desperately needed services to people with disabilities, he was instrumental in setting up the orthopedic workshop of the regional hospital and working on landmine awareness programs in Uganda and neighboring Sudan. Since 2015 Davide is the CEO of Comprehensive Rehabilitation Services in Uganda (CoRSU), a private non-profit, non-government organization. Together with an amazing team of highly committed people, they have created an impressive centre that aims at expanding and improving the medical rehabilitation services for children and people with disability in Uganda. Since its foundation in 2006 CoRSU has changed the lives of thousands of people in East Afrika. And the Easter Special of The Active Amputee is dedicated to this amazing organisation and the impressive services they are providing, day in day out. Today’s post will provide you with some background information of what it means to be disabled in Uganda. Tomorrow you will meet some of the patients and later on in the week you will hear from one of the volunteers who is committed to making in difference in the lives of the people for whom CoRSU is often the only hope.
Fancy trying water-skiing, wakeboarding, kayaking, biking, kiting or skiing? All suitable for amputees. Access Adventures is a non-profit organisation, aiming to improve the quality of life for people with physical disabilities through organising outdoor adaptive camps.
Imagine having to take the decision to amputate your child’s foot. That is the decision Kendra's parents were faced with when she was born with a malformed foot. Years later Kendra puts her experiences into words, writes them down and publishes her memoirs. 'WHOLE: A Leg Up On Life' invites you to learn more about her journey. In her bookl Kendra is open about her stuggles but never gives in to stereotypes. Her biography is a life-affirming testimony to her inner strength and courage. And today Kendra tells us a bit about this new book and why she wrote it.
I recently published a short overview over various companies producing prosthetic covers (you find the full article here), pointing out how the recent developments in 3D printing allow people with amputations to express their individual style through by choosing the look of their artificial limbs. I then ran an interview with McCauley Wanner from the ALLELES design studio in Victoria/Canada (you find the full interview here). This mini series about prosthetic covers is continuing today with a post by the Brazilian company ID Ethnos.
I have never been too interested in team sports. People who have been following this blog for some time know that I love to be active in the outdoors. Hiking, kayaking, climbing - that is my world. Enjoying a day out in mother nature, challenging myself, exploring the world around me, one place at a time, that’s what makes me happy. And more often than not, I do this by myself. Quality me-time, so to speak. Time to let the mind wander (and wonder); time to recharge my batteries; time to get into a different headspace and come up with new and creative ideas for my day job and the various projects I run. Having said all that there is one exception to my „I have never been too interested in team sports“. And that is sitting volleyball.
It is with great sadness that I recently learned about the passing of Patrice Méaume. Late last year, Patrice died from a heart attack while out playing soccer with friends. Unfortunately, his passing came only weeks before his first child was born.
Patrice was an incredible artist and an outspoken advocate for people with a disability. He constantly tried to shift the narrative. For him being disabled had nothing to do with being either the object of pity or heroism. With a witty sense of humour and a keen eye he portrait us as we are. His work celebrates the immense richness of our lives.
Patrice was featured on The Active Amputee in April of 2019. Today I am reposting his pictures and the short texts he sent me back then. Today I want to remember Patrice, his work and his efforts as a disability rights advocate.
I'm not sure how many times I have been called inspirational in my life. If I was given a penny for every time, I'd have a mansion by now. The word makes me hugely uncomfortable and I know I'm not the only one who is differently-abled or different that feels this. For this article, I decided to dig a bit deeper and work out why I feel the way I do.
Daily activities can be a little bit challenging when you’re missing a leg. Now add the weight of a pack, and varying elevations on uneven terrain out in the mountains and you are definitely going to see how not graceful I am. But so what? This post is going to talk about how to get outdoors and see these beautiful places even as an amputee.
Joanna describes her very own ways of dealing with stump pain. Chemical painkillers are only a last resort.
"For the first time, in April 2015, I traveled far away from France. For years, I wanted to discover other cultures. So when I finished my studies I didn't hesitate and bought a flight ticket to Japan. Three amazing weeks! During these vacations in the country of the rising sun, I caught the travel bug and I realised this passion was about to become a central part of my life." That's how Aurélie's amazing story started a few years ago.
Wow, how time flies. It has been a year ago that I took on the 888m climbing challenge to raise funds for The Active Amputee. And what a year it has been. A year full of engagements with amazing amputees; a year in which the daily routine has regularly been pierced by memory-making moments out in the wild; a year full of challenges in relation to my work, my health and the way we live. And a year in which I was forced to step back from some of my commitments, take a break for some time, recharge my batteries and refocus my priorities.
Now - 12 months later - The Active Amputee is back in full swing. New articles are in the making, new cooperations are developing and new and exciting projects are being hatched. It looks like 2020 will be an amazing year. But before I tell you more about what the coming months have in stock, lets look back at January 12, 2019.
My personal experience of birthing and raising a daughter with a missing tibia and knee cap inspired the set-up of The IREDE Foundation. I wanted to share the comfort I had with other parents and the abilities in disabilities. In addition there was a desire to pour out my heart by writing out my daily frustrations and concerns as I managed my daughter. The need to reach out with a message of hope to child amputees and their families continually spurs me to action. We at The IREDE Foundation are out to educate and create awareness on amputation and limb loss among the general public, hoping to reduce stigmatisation to the barest minimum. We also run a support group to reach out to the families and the amputees themselves. Thirdly we empower amputees via the provision of prostheses and mentoring.
January 1, 2020. The first day of the new year. Well, actually the first day of the new decade. And thus a great day to kick off a new and exciting year for The Active Amputee. Today I would like to recommend five people to you whose Instagram accounts you should follow in 2020. And… drum roll please… the five people to watch are the following.
The Active Amputee aims to inspire, inform and engage people with a limb difference as well as their families, prosthetists, medical personal and people from the prosthetic industry. As you all know I am great believer in the power of communities and in the value of connecting people - both locally and in person as well as globally through the world wide web. And so I was very excited when I recently discovered something new. Something I would like to bring to your attention. This something is a new community called Prothesengemeinschaft (which roughly translates into Community of Prostheses - a word play which works far better in German than it does in English. But I guess you get what it’s all about!). The core piece of this new community is an app and the shakers and makers behind it run a weekly podcast.
In our series "Five Pictures and Me" people with amputation introduce themselves by sharing their favorite pictures with us. Today: Andrew Gregory - below knee amputee, pole dancer, artist, model and the gold medal winner at the recent International Pole Sports Federation world championships.
Throwback to earlier this summer: After almost six years it was time to say goodbye to my old prosthetic knee and start thinking about a new one. Since 2013 I had been using the Genium from Otto Bock in combination with the Triton foot. And all in all, this is a great knee which allowed me to be active and live a fulfilling life. I had some issues. But most of the frustrations over the last couple of years came down to the socket and not to the knee itself. There was only one issue that always bothered me: Not being able to use the leg in the water.
As you all know, I love being outdoors. Walking in the hills, paddling along the coast or spending time at a local crag - for me these moments are precious and something I cannot get enough of. Unfortunately the fact that the Genium is not waterproof put some - unnecessary - limitations on me and what I was able to do.
So with the lifespan of my old prosthesis slowly coming to an end I had the rare opportunity for a new - maybe waterproof - leg. An opportunity not to be missed. An opportunity to think about my needs as an active user, to get advice from a trusted prosthetist - and here my collaboration with PACE was essential -, to chat with other amputees and potentially try out different models to see what works best for me.
I just came back from Nigeria. Another destination that is not often visited and normally doesn’t make it into the top ten of go-to places of fellow globetrotters or the travel trends of the year recommendations of the leading guide books. But visiting these far-flung places has its own charm. And brings its own rewards.
Mount Kilimanjaro is Africa’s highest, and the world’s tallest, freestanding mountain. It is crowned with an everlasting snow-cap. The landscape is extreme with uneven, uphill terrain and an unpredictable weather system. It is not for the faint-hearted. Up to 50% of climbers suffer from altitude sickness. Climbing Mount Kilimanjaro, or “Kili” to those who have dared it, is an incredible achievement for the able-bodied. For Damian Harper and Rebecca Legon, this is a monstrously courageous challenge. But it is not the first that these two inspiring amputees have faced during their lives.
I am a great fan of evidence-based action. No matter if you are trying to influence policies affecting the lives of people with disabilities or if you want to push research and development efforts for better prosthetic equipment - it all depends on sound data and reliable information. So every once in a while I team up with researchers, academic institutions, campaigners and representatives from the industry and support their research initiatives to inform future policy and improve current practice. Today I would like to invite you to participate in the ‚Physical Activity and Adaptive Sports Equipment for Assessment in Quality of Life in Amputees’ research project by Daicy Luo.
Mea culpa. The Active Amputee has been hibernating. It’s been ten weeks since the last article went live. That feels like a long long time in which this page has been dormant. Similarly my social media accounts have been rather unimpressive (read hardly any new postings and long delays in responding to your questions). And some of you asked me if The Active Amputee had closed it doors and feel silent for good.
The answer is: No! The Active Amputee is still alive and kicking. And from next week onwards I hope to be back to my original schedule of two posts per week, to regular updates on Instagram and
co and to one new podcast episode each month.
In our series "Five Pictures and Me" people with amputation introduce themselves by sharing their favorite pictures with us. Today: Caroline Mohr - an amputee on a mission is to awake others to their true light of their soul. Caroline is a speaker, coach, former Golfpro, yogi, schoolsponsor in South Africa and so much more.
Finally! The Active Amputee Podcast is finally up and running. This new monthly show from amputees for amputees is now available on iTunes, Spotify and or where ever you listen to your favorite
podcasts. The first three episodes are already available now while more are in the making and will be aired over the coming months.
Most lower limb amputees know this problem: Finding the right prosthetic knee is not an easy task. For most of us it means working out the right compromise between our day to day needs, our spare time interests and our ambitions for the next couple of years on the one hand and our health insurance plan and financial means on the other hand. This in itself is already rather complex. Things get even more complicated if we take into account that even the best of knees can only unfold its full potential if mounted under a well-fitting socket, combined with a good foot that suits our activity level.
So much for the theory. But what does this actually mean in practice? Well, there are several ways to go about dealing with this challenge. And there are significant differences depending on the country you live in and the health service that applies to you. So…
Summer is here. And with it come endless opportunities for being active in, on and around the water. While water sports are generally great fun, they are especially well suited for lower limb amputees: They offer the added advantage of the water carrying most of our weight. An advantage not to be underestimated for many amputees.
Here is a problem many active above knee amputees know all too well. A problem that is often overlooked as more and more attention is given to the newest developments around high-tech knees and other exciting advancements in the prosthetic sector. It’s the problem of a proper fit of the socket. It’s the key to using your prosthetic leg to its full potential. And how to deal with fluctuations in the volume of your residual limb - and thus with the fit of your socket.
In the cooperation with yoocan, I regularly share inspiring stories from people with limb differences that have originally been published on the yoocan page. Today I want to share the story of Diego Mercado. Diego Mercado was born as a congenital Amputee with the absence of his right Tibia and a deformation of his right hand. However, this has never stopped him from being an average kid with above average dreams. Diego always wanted to be a soldier, just like his Father Jason who has served in the US Army all of Diego's life. "The challenges were probably more difficult for us as parents because we were always compelled to run to our baby whenever he stumbled and fell. It was heartbreaking watching all of the other kids stare or point at him.“ said Jason. But every time he fell, he learned how to get up and eventually he learned how to be proud of his limb difference. This article has originally been published by yoocan.
Losing both legs is a major challenge for any person. Even more so when you are a circus artist. Erin Ball struggled hard until embracing her new reality led to a fireworks of creativity. Her amputations are now an integral part of her show. And through her teaching and coaching Erin has opened up the circus world for many others with disabilities. Read her full story here. And get to know more about Erin through this month's edition of 'Five Pictures and Me'.
The medic shouts, “we’ll be landing shortly” or at least that is what I thought he said - his words muffled by the roaring of the helicopter propellers. The twenty-five mile flight to San Francisco with the uncertainty of death was all consuming. This uncertainty while confined to my hospital bed forced me to analyze my life up until that point. Had I been living up to my potential? If given a second chance what would I do differently? Often times with tragedy as such one may come to a cross road, either by taking the route of self-pity and giving up or realizing all the opportunities a second chance on life can afford, and using that as the fuel to move forward and do something great. For me self-pity was never an option.
As mentioned in an earlier post, I recently started riding a kick scooter. Nothing fancy, just an ordinary kids' scooter I found when de-cluttering out garden shed. Fortunately my - often clumsy - attempts to master the art of riding a scooter coincided with the period in which I am testing the OttoBock Genius X3. This gives me the opportunity to use various pre-programmed modes for the knee and see which one works best for me in a variety of different terrains. And while I haven’t spent a lot of time on the scooter yet, it’s time for sharing some of my initial lessons.
Identify your next goal, think about possible ways to get there, break them down into doable chunks and just give it a go. Strongly believe that you can do it. Forget about norms and expectations, about the so-called normal. Be proud of your difference as it’s these differences that make this world such a colourful and awesome place. And you will see: A door opens to a completely new world way beyond your wildest imaginations.
A new month. And with this new month there is another opportunity to start something new. Something that has been on my mind for quite a long time. And something that I enjoyed as a kid. Riding a kick bike. Yes, this simple two-wheeler that promises fun and action in abundance.
In the cooperation with yoocan, I regularly share inspiring stories from people with limb differences that have originally been published on the yoocan page. Today we hear from Kristina who lost her arm in a boating accident. One year on from her amputation she reflects about the initial twelve months of her journey. This article has originally been published by yoocan.
The days are getting longer, the nights less chilly and nature is in transformation. Fresh green grass covers the hills, the shrubs and trees have started to blossom and with a few days off over Easter this sounds like the perfect opportunity to head back into the hills. This time with my little son, who has been asking for weeks when we would finally take our tent out into the wild. „Well, Jonah, Easter it is and we are off for a few nights out in the tent!“
I plead guilty. The articles on The Active Amputee are very much focussed on lower limb amputations. The reasons being are simple. First and foremost, I write most of the posts. And I am an above knee amputee. Second, most other amputees I personally know and try to chat into contributing something to the blog are lower limb amputees, too. And last but nor least, generally speaking there are many more lower limb amputees in the wider society than upper limb amputees. Exact numbers are hard to get, but let’s take Germany for example. According to a recent press release by OttoBock there are about 250 arm amputations in Germany per year. In the same time we see about 18,000 amputations of lower limbs (both above knee and below knee amputations). This is not meant to be an excuse that there is so little information for people with differences in their upper limbs on The Active Amputee. But I hope it sheds some light on the ‚Why?‘. And I am working on this. So let me start right here and now as there are exciting developments in this regard in the prosthetic sector.
I was born different, without my right hand. And I am thankful for my family and friends who know that I'm someone normal who just has one hand. I'm lucky. Throughout my life I quickly realized that having only one hand raises questions and provokes dialogue. My career in communication, I'm art director, has allowed me to see that often people with disabilities were represented in extremes: I.e. situations of dependency, illness or on the contrary with exceptional accomplishments.
So I've decided to launch a series of illustrations representing people with disabilities living normally, defending my pro-active and optimistic vision of disability: People with disabilities are different, but it's normal to be different!
I recently started another important activity; i.e. the normal-persons.com clothing line dedicated
to physically different people. With a bit of provocation and humor. Claiming back the body we have. So let's be proud to be who we are, let’s be proud to be how we were born.
This page is made by amputees. And it is made for amputees and their families. The Active Amputee wants to enable you to make informed decisions by providing unbiased information. The Active Amputee wants to inspire action through the sharing of stories. And the Active Amputee wants to build a community of active amputees by encouraging engagement and mutual support. Nothing more, nothing less. It‘s as easy and simple as that.
The people involved in The Active Amputee love to hear from you. Give us feedback about this page, send in your stories so that we can share them with others, let us know about events that are of interest for amputees, suggest topics you would like to read more about, ask questions. Really, anything that relates to amputee issues is of interest for The Active Amputee and could be featured on this side. Here is the contact form.