Life and training with my diagnosis

living with Friedreich's ataxia3

Georg is on the erg 6 days a week

Part 2 of 3

My life did not change with the diagnosis of Friedreich’s ataxia. All in all, this was just a letter informing me solely about the name of the genetic coding error. An error in the cells of my body that led to ‘living with Friedreich’s ataxia’. These genetic errors were passed down from both my parents. The letter did not contain any further information about changes I should consider for my life or even the impact of FA on my future.

Being able to get to the diagnosis was a struggle too,

It took the neurologists at the hospital almost a year to figure out why my balance was off. After several sessions going in and out of the hospital, waiting for an MRI scan, getting several different opinions, and my insistence that we needed to find the reasons behind my problems, we moved on to genetic testing. Finally, there was an explanation for so many awkward and embarrassing situations I had encountered in the past.

Having to look up the condition online was terrifying. The shock and tears in my wife’s eyes follow me to this day. Maybe they should have called me in for a face-to-face conversation. But, in their defense, we had moved town in the meantime and were not immediately available. It would have helped in getting some answers and after all these years I still have so many questions unanswered. Maybe they would have not called me in, certainly, no one tried.

The whole s**t show started about two years later.

By now, I was feeling the impact of FA on a daily basis. I could neither ignore nor deny that something was changing, and not for the better. For reasons beyond my understanding, medical support was still unavailable. My local GP had told me that: ‘the NHS has only limited resources available and these should be used on cases that have a chance of a cure’. The answer left me confused and I changed my GP immediately.

As a direct result of this encounter, I lost faith. I found it necessary for my mental well-being to bypass GPs. I wanted to turn directly to the neurologists at my local hospital instead. Oxford is well-furnished with specialist hospitals and has one of the few centres for research on FA in the UK. Unfortunately, I have to say, they were not much better. After several ill-managed administrative situations, I had my care transferred to a multi-disciplinary team, specializing in FA in London.

That was an excellent decision, and from that point, things started moving. I had annual meetings with the lead neurologist. On top of that; my vision, hearing, and speech were tested by professionals who knew what FA was. Finally, I felt that someone took the condition seriously. We organized an appointment with a physiotherapist. And I followed a plan that focused on the pelvic floor area to aid my walking. I was already a member of the gym at BrookesSport. Making it relatively easy to include a couple of new exercises into my routine.

Around this time I started training hard again,

The theory behind more sports was to counter the physical defects of degeneration with the right physical activity. Of course, that didn’t mean that I would be able to cure the whole of FA with sport but if exercise made me walk normally again, I’d take that victory. With all the extra pelvic floor exercises, the time I spent in the gym had gone up and in order to save time I cut down on non-essential activities.

From a physical point of view that meant spending less time on the rowing machine. As with everything the day has only 24 hours, I have a life outside the gym and a loving family at home I wanted to spend time with. As a measure of progress, I started counting how often I lost balance and fell over and the number of incidences was still going up. Despite all the effort, I put into fighting FA, the progression of the condition still continued, it still got worse.

It was not fruitless though, I got told that my degeneration was phenomenally slow and that my efforts probably were the reason for this. Keeping this up took too much time though. I was not happy with where I was physically, it felt like it was not enough, there must be something more I could do but I just hadn’t figured it out yet. That was when I decided to shift gears.

As a former athlete,

I knew what my mind and body were capable of, but I did not know whether excessive exercise would be a way to out-train FA, and with all honesty, I still don’t. Since then, I have been increasing my workload and variety with an obvious focus on rowing, of course. The staff at BrookesSport has been absolutely fantastic, now, in my early 40s, it should come as no surprise that my knowledge of how to train at the highest level of performance is stuck in the 90s (similar to my fashion choices). But it is not only the advice I appreciate so much; despite my disability, I feel that I am in a safe environment enabling me to tackle the devastating effects of FA head-on.

As my journey continues, with all the hard work I have put in, I have started to notice a positive change.

The number of balance losses with falls dropped for the first time last year, this year is looking really good too and I am hoping that this will reduce to zero next year. But the best news I had so far came from my cardiologist. During my last annual check-up (last year) my heart ECG did not show anything unusual. In fact, it did not appear to have the characteristics an FA patient would be expected to display despite them being clearly visible the previous year. Now, with the go-ahead from my specialist medical support team, my ambition has to be to increase the amount of exercise again and see if the degeneration can not only remain at the current level but can be reversed as well. I will know whether I have been successful as soon as I can leave my walking aid at home.

This piece is being put up alongside an interview with Dr. Herdt on YouTube. Please have a look and join in the discussion.

Experience the extraordinary battle against Friedreich’s Ataxia (FA) through Georg Herdt’s captivating blog. Dive into Part 1 of his inspiring journey at Friedreich’s Ataxia and My Life.

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