One year on, Weightlifting with Friedreich’s Ataxia

A year ago, as part of our campaign for UK Disability History Month, we introduced you to Dr. Georg Herdt

Georg is one of our community gym users who, everyday fights his Friedreich’s Ataxia with exercise. Georg has written us another 3 part series that we are very excited to share with you.

Part 1 of 3

 

Time is marvellous, usually it does not work in our favour, and it still does not, but when you make use of it you learn new things and can adjust your actions accordingly. By now, I know more about my condition and how it affects me than last year. It has been a journey of identifying what this condition does to me, to my body, what I am still capable of and how to work with the limitations it imposes to tackle the actual weakness. Sport science seems to offer the logical remedy, identify the problem, find the correct exercises to isolate the problem and work on the problem until it is fixed. This simple approach is a lot more difficult as it seems as Friedreich’s Ataxia (FA) really does not want to give, but nor do I! It took me years and good advice to find effective workouts to address issues I identified as problems FA caused. There has been some trial and error, but all-in-all I am pretty confident that I am making good progress. Just the fact that I feel ‘making progress’ is possible, is astonishing in itself as FA is considered a one-way-street.

A major issue was muscular degeneration, leaving loss of balance and coordination aside for the moment. Muscular degeneration seems to be the obvious issue to be addressed in a gym. A gym is the place where you normally do the opposite of losing muscle mass. However, it would be interesting to see how FA responds to weightlifting and whether one still could. The result is not surprising, yes – you can. I had to create my own rules, like never do weightlifting alone – not even with a smiths machine. I am grateful to Brookes Sport for supporting this journey and allowing friends and Staff to be at my side when I need them. At some point my question was not whether FA allowed me to do it but whether it can degenerate faster than I can build. Like with any sport, it matters how often you do it. My natural being is competitive, if I want something I do what I have to do, what needs to be done, come hell or high water, whether I like it or not, I have to try to do whatever is in my ability and see if it works. As my ability to walk independently is at stake here: Let’s see how fast the degeneration process actually is. The quick answer to this is: not fast enough. FA can be out-trained. By now, I have no doubt that this part of the progression is reversible. My quads started growing in size, my body fat went down, muscles appeared in places I have not seen in a long time, even my abs made a reappearance.

 

 

What surprised me was that the traditional first obvious sign of FA, lack of balance and coordination, could be identified as a lack of core strength. The stronger this section became, the fewer falls I had. Sometimes I felt like going down but then my body engaged, muscles activated by the sudden, spastic loss of control, automatically correcting what seems to be amiss. FA wanted me to hit the ground and my body said: NO. By itself. Without me having to actively steer the ship. Almost as if I became a spectator of – myself. Seeing and feeling two competitors for control battling it out. This encouraged me to do more, when you feel that you are offering your body the tools to counter an incurable, untreatable disease. You know you are on to something. The identification process continued. Another annoyance of FA is the increasing need for support, the loss of independence. Some of it, like reading or writing, cannot be fixed by sport (or I have not figured out how) but the ability to walk? Surely, this is part of a human body's large muscular system, something must be possible. Which of the muscles are responsible for our mobility? Assuming that the core is in a position to counter upcoming balance deficits. My legs were in quite good shape, all major players still had a visible, functioning size. The group responsible must be much smaller, suffering harder from a similar loss of percentage in volume. The identification process turned to the abductors and glutes, rather unimportant muscle groups. Not really the powerhouse that propels you forward and makes you win medals in competitions, but muscles that have more of a guiding role. And as they only engage when needed (as every muscle), for most people, they are mainly not in use. These turned out to be a bit tricky to isolate. As they also ‘tag-along’, heavy lifting seemed to tick many boxes.

 

 

After all, FA is a complex condition and it really helps if you have good, usable muscles available when you need to use them. Everyday I feel the impact of FA and everyday I feel my own body performing its duties. Nothing I do is for free, nothing is easy to do; every step I take is conscious, every time I stand up I can feel FA trying to topple me over and my body trying its best to prevent this, most times, my body wins. It feels great to have a strong powerful ally by my side, even if that is my own body I am writing about. When you are burdened by a condition that is not only as severe but also as rare as FA you quickly enter unknown territory. Not much research exists on the impact of elite sport to FA. I wish I knew how much would be enough to not shift my focus entirely on exercise but still being able to continue my previous life, my previous job. But I simply don’t know, how much would be enough to push it back and still have a normal life? What I do know is, if I stop exercising I will lose the ability to walk rapidly, will depend even more on help to perform everyday tasks as I do now and, inevitably, have to face the natural progression FA has planned for those affected by it.