My Story: How it all began
For months I could sense that something was wrong with my right leg. I was limping for no reason what so ever. After a few months I experienced what they term a foot drop, which is difficulty lifting the front part of your foot. I went to the GP who referred me to the neurologist. I was diagnosed with a virus in my sacral plexus which had damaged the sheath of the nerve and was causing the muscles in that right leg to atrophy. I accepted the diagnosis and soldiered on. After a few more months the progression continued and my leg got weaker. I decided to get a second opinion but was informed by the new neurologist that he agreed with the original diagnosis I had received and should be patient as it could take up to 10 months to see improvement.
Months passed, I questioned whether the diagnosis was correct and that’s when I decided to so seek out a professor who was known to be one of South Africa’s best. I had to wait a few months for my appointment. Little did I know that on the 23rd September 2021, my life would change. He conducted many tests and eventually sat myself and Sam (my wife) down and gave us the diagnosis. I had been informed that I had Motor Neuron Disease. His execution of the diagnosis was done in a calm and empathetic way. He was adamant of the diagnosis. I will never forget those words, a feeling of complete and utter shock. I remember thinking, pinch yourself, I must be dreaming. It then struck me very quickly that I had been diagnosed with a disease that had no cure. I couldn’t hold my emotions back as I thought about my 2 kids, the tears poured down my face. All I could think about at that time was they where going to grow up without a dad. Sam somehow managed to keep it together but I could see that she was in total and utter shock. This was not supposed to happen to me, to us. We had a life plan and were going to retire one day as a couple and live happily with our kids. We were going to watch our kids get married, have kids and spend time with our grandchildren. That’s what’s supposed to happen right?!
I remember my 1st question to him very well. I said “Prof, how long do I have to live?” He replied patients on average have about 2 years but some can live with the disease for longer periods depending on progression. I took a deep breath, I tried to stay calm and keep a positive mindset but the tears kept coming. It was a surreal moment.
The professor gave us enough information so that we could over time process the diagnosis and understand what lay ahead for us. I must tell you that it didn’t matter what information I was given on a pamphlet, I learnt the hard way on my own through experiences. There are support groups that one can join but all the information in the beginning is just too much to absorb. I went onto YouTube and searched ALS/MND and the videos that I watched put the fear in me immediately. The majority of them are sad and depressing and there are no happy ever after endings. It took time for me to eventually realize that you have to live one day at a time and appreciate that you are living in the now and that you can still experience many wonderful memories with friends and family.
After a few weeks of processing I kicked into do mode, selling things I no longer needed. I was an enthusiastic cyclist and had 3 bikes and plenty of gadgets. I sold everything very quickly with the assistance of a friend. It saddened me to see my bikes being handed over to the new owners but I realised I had to do this so that I could continue on my new journey/purpose in life.
I had been a sportsman my entire life. I ran my 1st marathon in 1988 and my 1st Two Oceans ultra and Comrades Marathon at the age of 18. I continued to run hundreds of marathons over many years and loved every moment of it.
I developed bi-lateral spurs on both heals and Osteo-Arthritis at a very young age which eventually led to me replacing my left hip and this put an end to me running. I started Cycling many years later and it quickly became an obsession as it often does for many cyclists.
I have been very blessed in life. Sam and I travelled to many countries through my incentive trips when I was working for VW and Audi. We were also blessed with two beautiful kids much later on in life, Katie and Ross. Together as a family, we have enjoyed many wonderful memories and holidays together. The Kruger National Park ranks among the best alongside a lovely trip to Paris to experience Disney land and then a week in a ski-resort in Switzerland.
This is not the end for me, this is just the beginning of a new journey and purpose in life…
