The everyday life of transfemoral amputees: Jasmine and Andreas report

Andreas likes to be on the road a lot. Therefore he has a clear idea of what a prosthesis must be able to do (picture courtesy of Andreas Gröbner).
Andreas likes to be on the road a lot. Therefore he has a clear idea of what a prosthesis must be able to do (picture courtesy of Andreas Gröbner).

In The Starting Blocks, Ready To Test The New Ottobock Genium X3

This week I have the pleasure to talk to Jasmin and Andreas from Germany. Both are above knee amputees. Both haven't been amputated for very long. Both have had a long odyssey before their amputation. And both are currently testing the revised Genium X3 by Ottobock. 

 

Today I would like to introduce them to you. And tomorrow we will hear more about their experiences with the micro-processor prosthesis.

 

 

May I introduce To You: Jasmin And Andreas

Hello Jasmin, hello Andreas. It's nice that you took the time for this interview. Before we really get started, can you both tell us a little bit about yourself? Of course we are especially interested in when and how you lost your legs and how you have mastered your life since the amputation. 

 

Jasmin, 27

My name is Jasmin and I am 27 years old.

 

After having been diagnosed with a tumor aged 15, followed by countless surgeries, restrictions and pain, I made a conscious decision to have my right leg amputated. That was about a year ago (Jasmin's story "Amputation as a step into a happier life" appeared in May this year on The Active Amputee).

 

The amputation was a very relieving decision for me; a decision that suddenly opened all doors for an active life again. A life I could only dream of before. I have always been a very cheerful, active and nature-loving person.

 

With all the possibilities that a prosthesis can offer today, I can now fully exploit all these new opportunities, move freely and experience all the adventures that could otherwise only take place in my mind. Whether climbing a mountain or riding on a wave, the possibilities are suddenly endless and I enjoy that very much. 

 

Under @prostheticlife you can learn more about Jasmin.

 

 

Andreas, 38

Hello, I am Andy, I am 39 years old, married and have a little daughter (8 years).

 

At the age of 19 I had bone cancer, "chondrosarcoma" above the knee joint. After radiation and several chemotherapies, however, I was able to beat cancer. But as a result of the treatment, especially the radiation, I had problems with everything below the right knee. I could hardly bend the leg. It was always filled with lymph. I was in permanent pain and ended up with blood poisoning again and again.

 

In February 2015 blood circulation to my lower leg was cut off for the first time. The blood vessels were so "burnt". After several bypass operations, split skin transplants which were unsuccessful, and yet another interruption of the blood circulation my leg was finally amputated in May. 

 

In the hospital, I immediately decided to make my life as active as possible. I wanted to go on a pilgrimage on the Way of St. James again, I wanted to run my daily jogging trail again, I wanted to actively participate in the life of my family. Still in rehab, I soon started running and was able to increase the distance quickly. In July 2017 I walked my first Camino (Caminho Portugues) with a prosthesis and successfully completed it. 2018 in May I went on another pilgrimage in Portugal from Porto to Spanish Vigo along the Atlantic coast. In addition, I am almost daily in the gym and go Nordic Walking a lot. And just recently I also gort myself a running blade and I am about to become stronger here as well.

 

As a family man with a full time job, I actually manage my everyday life without any restrictions. Of course, I also have to thank my family and my employer who let me get away with with a few things here and there. I have been amputated for a little more than two years now and am still at the very beginning of my journey. I am incredibly curious what life still had on offer for me. Whatever it is, I want to enjoy it as much as possible.

 

Under @bionic.pilgrim you can learn more about Andreas.

 

 

Although you haven't been amputated that long, I know that you both lead a very active life. How was your prosthesis care so far? What went well? What was sobering? 

 

Andy

So far and for my feeling I have had a lot of luck with my prosthetic care. We tried different systems until we got to the current "final" one. From liner with pin to liner with vacuum lips to full-contact vacuum Milwaukee shaft with BoaSystem. I was also allowed to test different knee during this time, in order to see what suits me best before making the final decision. Of course you spend a lot of time with your technician. Sometimes the socket is too big, sometimes too narrow. Sometimes a part breaks here, sometimes you just need a second opinion. On the whole, however, I am very satisfied with the way things have gone so far.

 

But I still remember when I stood on my prosthesis for the first time. I had seen videos on Youtube on how to run, jump, play football etc. and then suddenly you stand on your prosthesis for the first time. Then it became clear to me that the whole thing wouldn't be a walk in the park and would demand a lot of sweat, blood and mental strength from me. That's how it came. And this journey is far from over.

 

 

Jasmin, what did it look like with you so far?

 

Jasmin

For the first six months after my amputation I had to take it slowly. Fitting a proper  socket was initially not possible. Due to the many operations, my body was very weakened and the wound from the amputation healed very slowly. In February 2018 it was finally time for my first prosthesis to be fitted. That was all very exciting for me. The first steps went really well and were an incredible feeling.

 

My first socket was a knee-ex socket. This allowed me to fully load the residual limb in the prosthesis. I had to use walking aids - forearm crutches or a walking stick - but I was finally able to walk again. Initially this was draining a lot of my energy, but I guess that is unfortunately part of getting back into a normal life. When I started walking without any aids, however, my technician and I decided to build a solid socket after all. In retrospect, that was the best decision; one we should have taken much earlier.

 

Without any walking aids, it was very difficult for me to hold the prosthesis in position. You can imagine that I permanently tensed my whole body, almost convulsively, in order to be able to walk straight. If I didn't do that, I tilted my upper body to the right with every step because I missed the guidance from and stability of the socket. The new socket and I soon become friends and my gait pattern has improved considerably. Walking is suddenly much less strenuous for me. 

 

What I had to learn, however, was that a well-fitting socket is very important. Because if it doesn't fit properly, it's anything but good. That can really be very frustrating. There are always times in which the volume of my residual limb decreases. Sometimes it's related to the weather or to the distance I covered that day. I can compensate for minor fluctuations quite well with socks that I pull over the liner to make it thicker. But if the volume decreases more and more, that doesn't help any more.

 

So I spend a lot of time with my prosthetist, who then tightens the socket for me or makes a new one. And that can be really nerve-wracking. I consider myself lucky; I have a great technician who always comes up with great ideas to make the prosthesis more comfortable for me and who never gets tired of changing the socket again and again. Finding the right set-up for the prosthesis has sometimes proven to be difficult.

 

I have already been able to test different knees and each one needs a different set-up. In order to get the optimal walking feeling, it is sometimes only an adjustment of a few millimetres of a tiny screw. But then this adjustment asks for changes of another screw. It's really a lot of work. Once the optimal setting has been found, it's time for a test walk; time to use it in my day to day life. And there it happened very often that something did not go as well as it should and the whole process of turning various screws starts anew.

 

I could now talk forever about the way to a good prosthesis fitting. But I think it's fair to say that it's a long process that brings with it many highs and lows and that requires a lot of patience and a great technician who is willing to optimize the prosthesis again and again and who supports you in applying to the health insurance company.

 

 

What are your dreams for the future? And what does that mean with regard to the demands on an optimal prosthesis? What is important to you in terms of fitting your prosthesis?

 

Jasmin

My dreams for the future are first and foremost to live my daily life without limitations. I want to live a life in which I am self-determined and I alone decide what I can and cannot do. With the amputation I wanted to be able to be active again, to do sports, to be able to live a carefree life. With my prosthesis, I want to be able to lead a "completely normal" life and to be able to do things that most people take for granted.

 

I want to move freely and walk backwards without having to think about the next step; I want to be able to run when it is necessary; climb stairs without getting a crisis; I want to run through the forest without being afraid of stumbling and walk with my feet through the water when I am on the beach.

 

Even after the amputation, it was clear to my husband and me that we wanted to have children. Therefore I want to be able to move as carefree as possible and be confident on my artificial leg in order to be able to master everyday life with children and to have fun with them.

 

My expectations towards a prosthesis are therefore that it offers me above all a lot of security. To do this, it must be able to react quickly to my movements and my walking pace and support me at the right moment. Only when I feel safe can I go through everyday life without thinking about it, no matter if it's uphill, downhill or over uneven paths. Because let's be completely honest: We all know that you don't find paths as straight as in the walking school or fitness studio out there in the real world. At least not very often. Therefore, it is important for me that the gait pattern feels as natural as possible.

 

This is so important to me because due to my previous illness, also due to the frequent incorrect posture I often had back or knee problems in my other leg . The prosthesis will carry me for the rest of my life and should therefore relieve and support my existing leg and my back enough to compensate for the missing leg as well as possible.

 

In addition to everyday dreams, I also have bigger ones. One of my biggest dreams is windsurfing and surfing. Before my illness, my biggest wish was to get a windsurfing license. Due to the many operations it was unfortunately no longer possible for me. Now - thanks to the new developments of waterproof high-end prosthetic knees - this dream moves again within reach and I hope very much to be able to stand on the board soon again.

 

My other big dream is to travel the world and explore as many new places as possible, wander through the Grand Canyon, canoe the fjords of Norway, climb the most beautiful mountains and explore the biggest cities. 

 

 

Wow, Jasmin, you still have a lot planned for you. As far as surfing is concerned, get in touch with Dani Burt. Dani has a lot of experience when it comes to adaptive surfing, including how to adapt the prosthesis. And if I am not mistaken, then she also uses a Genium X3.

 

Andy, what about your dreams for the future?

 

Andy 

My dreams for the future? Of course there are some of them - even if I've gotten a bit away from them lately. There is always a lot to plan. And then what usually happens is quite different from what you had planned. I would like to try my hand at parasport. I'm currently training shot put and want to achieve as much as possible.

 

In addition, the Way of St. James is always in the back of my mind. But just being active with family and friends is also a big, probably the biggest goal. We are on the road a lot, like to travel a lot. My daughter is in the athletics club. I always want to be there and run with her.

 

My greatest dream is to lead an active, eventful life. So my prosthesis has to cover a very broad spectrum of activities and be able to handle lots of different situations. But above all it has to be able to cope spontaneously with what ever I throw at it. Who doesn't like to jump directly into the pool after a bike tour? In the past I didn't think about such a thing. And honestly I don't want to worry about these things in the future.

 

 

Tomorrow: The Full Interview About the Genium X3

So far for today. Tomorrow then you can read the full interview. What did the two of them do with the Genium X3? How did the knee joint perform? How did Jasmin and Andreas experience the handling of the knee in a variety of situations? All that - and more - then tomorrow here on The Active Amputee.

 

 

Post by Bjoern Eser, the creator of The Active Amputee.

 

Further Reading

Amputieren, um aufzublühen

 

Chaos.Cat hat als Kind Knochenkrebs überlebt. Aber danach fühlte sie sich gefangen in einem Körper, in dem sie sich nie wohl fühlte. Nach Jahren der Traurigkeit und des Frustes, entschloss sie sich zu einer Amputation. Dann, so hoffte sie, könne sie ein neues Leben beginnen,  und wäre endlich wer sie immer schon sein wollte. Und ihr Mut wurde belohnt. Read more

Hiking as an above knee amputee

 

I love being outdoors. Always have. And this love for being physically active in the great outdoors did not change when I became an amputee. Being out in the hills far away from any assistance if the need arises can be a scary thought. At the same time and if done right it can be an immensely rewarding experience that helps to develop new skills and increase confidence. Read more

Das Leben auf einmal ganz anders

 

Meine Geschichte beginnt als ich15 Jahre alt war. Auch wenn die damalige Diagnose keine große Relevanz mehr in meinem Leben hat, hat mich diese Zeit extrem geprägt und verändert – und das auch positiv – und hat einen großen Einfluss darauf, wer ich heute bin. Von einen auf den anderen Tag hat sich mein Leben komplett verändert. Plötzlich war nichts mehr wie es mal war. Read more