My life with Friedreich's Ataxia

Georg Herdt

Part 1 of 3

A couple of years ago I was diagnosed with a rare neurological disease called Friedreich’s Ataxia (FA). This diagnosis changed my life significantly, my name is Georg Herdt and this is my story.

FA is a rare, inherited, neurological disease that causes progressive nervous system damage and movement problems. People with this condition inevitably end up in a wheelchair, and usually face a shorter life expectancy. It also comes with numerous other health issues which can include heart problems, diabetes, gastro-intestinal issues, impaired vision and speech as well as accelerated muscular degeneration. It usually begins in childhood and leads to impaired muscle coordination (ataxia) that worsens over time. There is no cure.

 

Until I was 35, I had never even heard of this disease that I was born with... After the diagnosis, I did not know what to do. As is the case for many people in my situation the information came to me in the form of a letter telling me I had FA, without any further information

 

Until I was 35, I had never even heard of this disease that I was born with and the genetic defect I have carried for my entire life. I just did not know. After the diagnosis, I did not know what to do. As is the case for many people in my situation the information came to me in the form of a letter telling me I had FA, without any further information regarding its impact or whom to turn to for further information. So I ‘googled’ it. A day later I asked my GP about this and he came back with a rather unprofessional response. I have changed my GP twice since. As no-one seemed to be telling me what the next steps were or seemed to take the condition seriously. I asked myself; why should I? I was still able to walk un-aided at that time and ran regularly. So far, no bother. Unfortunately, FA does not like to be ignored. It made its appearance known with a vengeance that I never expected, I was not warned of what was coming and most importantly, it hit me harder than I thought it could. My career in academia was progressing at that time and I had to cancel any sport due to the lack of time. Within a year my walking got worse, my vision blurred and I started falling over without any external input. One second I was standing, the next I was not. Just like that. Like clicking a finger, snap - pain.

All I knew was this could not go on, I had to do something. There were a couple of decisions to be made, hard decisions but decisions none the less. Firstly, I knew I could not pursue my professional career any more, a career I spent ten years training at university for and that was accelerating beautifully.

Snap – gone

I knew I could not get out of prior commitments but rather let them fade out slowly. I have so much passion for my work that just talking about it still hurts. This was also the time when a good friend of mine, a keen athlete, told me to train, and he meant train hard. We started running together, if you can’t walk properly, try running instead. At first, he held my hand and we did 500 m stretches, slowly increasing the distance, clinging on to my old life and career in the time between. The progress was slow but satisfying. There was an immediate and noticeable improvement. However, despite being able to run longer distances, it became obvious that this was not enough. My falls did not only continue, they were happening more often. I also started struggling to stand up without support. When I did manage to stand, I simply lost balance and fell backwards on the bed, the chair or toilet. This was when I realised that I did not start fighting FA when I was diagnosed, but that I started the fight back in the 90’s. If excessive exercise kept the condition at bay, then I had won this fight before. All I had to do was to repeat the behaviours of my childhood and teenage years, which is the time FA usually strikes.

I did not start exercising when the disease forced me to, I have a long history of competitive sport. I was born into a family of keen rowers; on the day I was born my father and grandfather signed me up for membership to Germany’s 2nd oldest rowing club. Similar to having FA, this was not a choice I had, my decision was made for me. By the age of ten I was rowing, by fifteen I was quite established and we trained for about ten hours a week. Training only increased from this point onwards and after winning several national rowing titles, I got into the national youth program. By the time I was nineteen I had had enough, proceeding to the next level meant even more rowing and more time commitments. Rowing had already taken more than half of my childhood. I still did not know about FA at that time, how would I? The few symptoms I had were shrugged off as clumsiness, my inability to consume alcohol explained with an extraordinary metabolism, for Pete’s sake I was closer to making the cut for the German Olympic squat than facing a wheelchair. Germany at that time required military service and I followed my civic duty. A young man with my physical abilities had no chance to avoid it. Being stronger than most kids that age meant that I could choose where to go and I decided to embrace not only a year in the army but to join an elite unit within the 31st airborne brigade, that meant more physical activity.

My physical decline must have started at university but I had banked so much strength that I had a lot to lose before FA was able to strike. As I was used to exercise, I did the occasional run or lift or even row when I found time for it. The years of physical activity meant that a friend and I were able to run a full marathon, not as a challenge, but simply because we could. I still did a bit of rowing and when the national university championships were held, of course we won. I had a great team around me, not only for motivation but also to perform at a level that kept the horrible disease at bay.

Now, that I know about FA, I have chosen to fight this disease, even if that means going all in again. If it is possible to out-train FA then I will give it everything I have. I know how to do this, I have done it before and I will do it again. With Brookes Sport behind me there is a great team that has my back, advising me on improving my technique, to train as hard as I did when I was a young man and show the condition who is actually in charge.

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