I remember sitting at my desk in my home office, talking on the phone to a colleague called Simon.
Simon is about my age, and at some point our conversation wandered onto getting older. I asked him whether his body was starting to tell him about it too.
Mine certainly was. My muscles ached every day. Exercise seemed to take more out of me than it used to, and recovery was taking longer and longer.
Simon had the usual collection of aches and pains that come with getting older, but nothing like the level I was experiencing. We concluded that perhaps I was just getting old. I was in my mid-forties.
Running was telling me something too
There weren’t yet lots of obvious things I couldn’t do. I wasn’t falling over. I hadn’t noticed problems getting out of chairs or lifting my arms. I wasn’t walking around thinking there was something seriously wrong with my muscles.
But there was something I could measure. Running.
My 5K and 10K times were getting slower. Races that I’d once simply enjoyed were becoming increasingly hard work. I’d reached the point where I was having to really fight just to make sure I wasn’t the last person across the finish line.
This was very different from the running Hayley and I had fallen in love with — heading out into the countryside with Cisco and Pickle and running simply because we could.
Something had changed. I just didn’t know what.
Maybe I needed a stronger core
I talked to my chiropractor about the increasingly long recovery times.
He had a look at me and asked me to do various things, including standing on one leg and some other balance-type tests. His conclusion was that I needed to work on strengthening my core.
Fair enough. It was another perfectly reasonable explanation.
Around the same time I was doing quite a lot of physical work outside. We have a decent chunk of land and, as anyone with a bit of land will know, there’s always something that needs doing.
One day I was moving paving slabs and hurt my back. Except the back pain didn’t go away. Eventually I made an appointment at my GP surgery.
Ann looked a little further
I saw an advanced nurse practitioner called Anne.
She had me lie down and did various tests — raising my legs, pushing against her resistance and testing my strength.
I don’t know exactly what Anne saw during that examination, but she clearly thought there might be more going on than a pulled muscle in my back.
She ordered some blood tests, including one measuring something called creatine kinase, or CK.
CK is an enzyme found predominantly in muscle. When muscle cells are damaged, more of it can find its way into the bloodstream.
My result came back at 728. The normal range shown on my test was 40–320. Something wasn’t right.
Then I thought about Dad
I went back to see Anne so she could explain the result and what an elevated CK level might mean.
Until that moment, Anne had no idea that my Dad had lived with muscular dystrophy. I immediately asked the question.
Could there be a connection?
She asked what type of muscular dystrophy Dad had been diagnosed with. And I couldn’t tell her. Nobody could.
Dad had spent most of his adult life seeing specialists, having tests and undergoing investigations, but he’d died without ever receiving a definitive diagnosis.
My parents had also been told that whatever Dad had wasn’t something I would inherit.
But sitting there with Ann, hearing that there might be something happening to my muscles, all of that reassurance suddenly felt rather less reassuring.
There was more than a moment of panic. Because somewhere deep down, I think I already knew. Whatever Dad had lived with, I had it too.
A million questions and no answers
I told Hayley immediately. I tell her everything. Unsurprisingly, she had about a million questions. I had absolutely no answers.
We didn’t know what condition I had. We didn’t know whether it really was the same thing Dad had lived with. We didn’t know what it might mean for the future or what happened next.
What we did know was that it was something we were going to have to deal with. And I knew I would always have Hayley’s support.
Looking for an answer
Things moved quite quickly at first. I was referred to a neurologist. I talked about how much my running had changed, the aching and stiffness in my muscles, and Dad’s history of muscular dystrophy.
Then came nerve conduction tests and an EMG — a test that looks at the electrical activity in muscles. The results suggested there really was an underlying problem with my muscles.
Given Dad’s history, muscular dystrophy was now being openly considered. The neurologist telephoned me with the result.
His subsequent letter records that I was “not surprised.” I wasn’t. By then, I think I’d already accepted that something was wrong. What I didn’t know was what.
The next step was a muscle biopsy. A small piece of muscle was removed from my thigh and sent away for analysis.
Surely that would give us the answer. It didn’t. The result came back:
Non-specific myopathy.
In other words, yes, there was evidence of muscle disease. But once again, nobody could tell me what it was. Dad had spent decades living with a muscle condition without a name.
And now, for the first time, I found myself wondering whether I might be about to do exactly the same thing.
