IN A COVER STORY edited by Fiona Ness of the Sunday Business Post Agenda magazine, Damien Mulley talks frankly about his experience with multiple sclerosis. "People thank their idols and their family when they win awards that recognise their achievements. I’d like to thank my MS for my future achievements. My world hasn’t drastically changed since the diagnosis, but it has given me some new perspectives." Mulley tweeted about numbness in his hand and foot, which he thought had something to do with his heavy travel schedule. His symptoms would subside but something happened during the Paddy's Valley tour in December 2007.
"On December 3 last year, I woke up in my hotel room in Palo Alto, California, with a buzzing in my ears and my left side, from my ear all the way to my toes, was numb. I sat up, panicking. Should I call for a doctor and end up in a Stanford medical centre with my family on the other side of the world worrying about me, probably trying to fly out, and having to pay a hefty medical bill? Plus, I was on a work trip organised around a tour of tech companies. This could wait until I was back in Cork. That Damien’s priorities were different then."
Mulley's story reminds me of those in my extended family. He writes about how he "hobbled through events over the week in California, the buzzing in my ears subsided, and the pins and needles and numbness lessened but never went away. I kept checking the mirror, wondering was my face sagging."
MS afflicts all ages. In Damien Mulley's case, "I was 27 years old. I thought the pressure in the cabin over the 11-hour flight had damaged something in my head, and I was petrified getting the flight back home. Even though I have an aunt with MS, it never crossed my mind that I was experiencing some of the symptoms of this illness. I saw my GP the day after I returned, and he said I needed to see a neurologist immediately. However, an appointment, even with a private consultant, would be months away."
Part of the Irish health system smiled on Damien as he got fast-tracked through an appointment and quickly into the Mercy Hospital in Cork. "I spent the night on a trolley, answering questions, getting physical tests, cat scans and blood tests. The doctors were not happy with what they were seeing."
My mom, a nurse, told me at the time that it's difficult diagnosing anything that affects the nervous system. In her case, specialised analysis of the nervous system followed. Mom passed those tests. Damien didn't.
"It was only when they told me the spinal tap would be looking for myelin, among other things, that I suspected MS. Myelin is the human equivalent of the insulation around cables, except it’s around our nerves. People with MS have their myelin attacked by their own bodies and it gets damaged or stripped away. It can show up in spinal fluid. My spinal fluid did contain myelin, but many other tests were done on the fluid. Only when everything else was ruled out would the doctors settle on MS."
Damien didn't worry anyone until he knew for sure. "I would have to wait for three months," he recalled, "Until my test results came back from Britain to get final confirmation. I didn’t tell my family that MS was suspected. I wanted them to enjoy Christmas. If it was MS, telling them once would be enough.
The finality of the diagnosis brought some peace. "Getting confirmation that I had MS was in some way a relief. While I didn’t want that diagnosis, knowing what I had meant I could box around it.
"Now, my left side is no longer numb and the pins and needles have receded, leaving a tightness in my left palm. I feel a throbbing pain in my left side when I become tired, which I do easily, even after the most mundane tasks. I need to sleep more than I did. When I get tired the tightness in my hand can increase and travel up my arm, while pins and needles in my left foot can travel up my leg. It’s an early warning system to take it easy.
"Although many people experience MS in this way, I previously thought only of the illness in terms of wheelchairs and crutches. I might never get another attack - if all I’m left with is a moany left side, I can deal with that."
Life goes on, some have to carry more of a burden than others to engage in it. Good luck, Damien.
Markham Nolan and Damien Mulley -- "Living and dying with MS" in the Agenda Magazine, Sunday Business Post, 7 September 2008. Photo by Neil Danton/News Digital.
