So if you think this column is about me bragging about my pets, you are absolutely right. If you are an animal lover, you might love your animals a little more after reading this; if you don’t, I can almost guarantee that you may want to get at least a goldfish.
I have been living with Pompe disease for most of my adult life. I was only diagnosed 8 years ago, but it has been the most rewarding 8 years of my life. I have 2 of the most amazing Staffordshire bull terriers, which are the highlight of my life. They are 15 and 13 years of age, and that’s actually really good for this breed of dog. Their average lifespan is usually around 9-10 years of age. So I know you are wondering what has this to do with a rare disease.
Read more for HCP resources for Pompe
Pompe disease is a very rare glycogen storage disease. Your entire body uses glycogen as a fuel source to keep you going, especially when sleeping, like your heart and lung muscles need fuel to autonomously function.
Having Pompe disease results in my body being unable to break down glycogen quickly enough to supply the working muscles of the body. That results in the body having to break down muscle tissue to use as fuel, which causes huge amounts of trauma and pain to the body.
I have grown up in a very sporting background. My 3 brothers and I used to compete over everything, even our food sometimes. In my younger years, I competed at national and international levels in off-road triathlons, swimming, surfing, and mountain biking. When I was diagnosed, the doctor said to me I would most likely not be able to do any sport again, and if I did, it would be on a very social level. I would basically have to be super cautious to not do too much exercise, which may result in my body breaking down quickly. This absolutely destroyed me, I felt like my life had ended right there and then.
If I could not have sports in my life, what kind of life would I be living? Initially, because of the pain, I could not do much. I was only able to walk in the pool and eventually started swimming a bit. No running, surfing, or cycling, as it would hurt my body too much. But anyone who knows anything about me knows that I have never been willing to let go of the one thing that I live for, and I never quit trying to overcome an obstacle.
I slowly started to incorporate sport back into my life, first by progressing again in my swimming. Swimming helps your entire body to develop without causing too much weight bearing on the body. Your lungs, core, and major muscle groups all get a great workout. From then, I started cycling again, then surfing, and over time, with consistency and a lot of patience to start off very slowly, I started to feel my body getting a bit better and stronger.
This took consistently doing some form of exercise every day for 3 years before I could feel like I was back to what many would say average ability level. I started doing smaller-stage racing mountain bike events to help raise further awareness for rare diseases charity. I then graduated to the biggest stage possible and completed what is known as the Tour de France of mountain biking, the Cape Epic 8-day Mountain Bike Race. It’s one of the toughest in the world. Eight days of mountain biking in the heat and on challenging terrain. My body was not happy at first, and there were days when the muscles in my legs felt like they were tearing apart because my body was searching for glycogen.
But as the days progressed, I discovered that endurance sports actually helped my disease, and the longer I would go, the better I would feel. When everyone else was starting to hurt, my body started feeling better as my body had completely shifted to relying on fat as a fuel source over glycogen. I ended up riding better than my partner in the final couple of days, and I cannot explain how happy I was to achieve something like this.
So I have learned that mountain biking or road riding actually wasn’t as invasive on my body as I thought it would be. Running, however, is something that I love so much, and like anything you love that gets taken away, that is all you can think of. Unfortunately, it hurts my body the most, and this is when the body cannot break down glycogen fast enough, and then comes the pain. So this is where my furry helpers have helped change my life.
My wife would take them for a run every day but had to take them one by one, as they are so powerful that they would drag her off her feet if she took both at the same time. I would see her take one, then come home, then take the other one and do this every day, racking up a good 5 km a day. My wife is also super sporty and had to compete in an event overseas and asked if I could even walk them when she was gone.
My dogs don’t like to walk, they want to run. It doesn’t have to be fast, but it cannot be a walk. So I had no choice. I trotted away with them slowly so my heart rate was low and my body was under no unnecessary stress as we were running a lot slower than I would ever run on my own. My wife was away for 3 weeks, and each day, I was surprised that I was able to run more than I have ever been able to before.
No leg pain; I couldn’t believe it. It was nice and easy, so my body wasn’t looking for glycogen like it would on any other run. So I continued to take them even on the return of my wife, we would slowly run them together, and I gradually picked up my mileage and consistency. I was running 3km, 5km, 8km, then 10km. It was amazing. My dogs taught me to be patient and run slow and build endurance. So now there is nothing I cannot do. Yes, I still have to be cautious and keep it slow when I race with running. But I have learned to run easy, to be patient, and to trust the process.
I am so grateful every day for them, and helping me to find the motivation and consistency to run every day has truly changed everything that I thought was possible. I now race not to win but to race for those who can’t, so raise awareness for rare diseases and give others hope.
I have learned a very valuable lesson. Never let anything hold you back, and get a dog to help guide you through your tough times.