Why I do charity events for MS Societies
The words below comprise the most personally distressing article I ever chose to write. My mum had a short and intense battle with MS in her mid-forties, which she swiftly lost in 2004 aged 49. I wrote about it in September 2008, a little over four years later, and just six months after my father had also passed on. At the time, someone who had been recently diagnosed had reached out to me for advice. I had run marathons to raise money for the MS Society in Ireland and Australia in the past and so had been somewhat public about how MS had touched our family. We both wrote about our experiences for Ireland’s Sunday Business Post newspaper, he as a newly-diagnosed sufferer, and me as a family member of one (His story appears first in the below republishing)
When I do charity events (I’m cycling 100 miles for MS in October — please donate) it’s always for the MS Society, wherever I’m resident. They are enormously supportive to everyone dealing with MS and our donations help them keep doing that. MS can be either extremely manageable, or extremely tough to deal with. It is the luck of the draw what kind of dose you get. Our family were very unlucky, which is why this piece of writing below is still very hard to read, even nine years down the road. MS means my wife will never know her mother-in-law, my daughter will never know her granny. It’s why I feel passionate about raising funds for the people who battle this odd, unfair disease, and why I’m willing to unearth painful memories to guilt you into doing the same.
MS, which attacks a person’s nervous system, directly affects more than 6,000 people in Ireland. Diagnosis often prompts a frenzy of research, as the new patient scrambles to arm themselves with as much information as they can. Often, the first stop is someone whose life has already been affected by MS.
For [name withheld], diagnosed this January, his first port of call was a fellow journalist, Markham Nolan, whose mother died in 2004 after an unusually brief time with the illness. Here, they share their very different perspectives on a condition that is a familiar presence in thousands of Irish homes.
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.
Last November, my left hand and left foot had a numbness/pins and needles sensation which we put down to the amount of travelling I was doing. Mostly, these symptoms subsided.
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.
As I 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.
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.
He fast-tracked my appointment by sending me through A&E in 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.
Diagnosing MS isn’t done by a simple blood test. So, over the next few days, I had an MRI scan, more blood tests and a spinal tap. Not pleasant.
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.
I would have to wait for three months, 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.
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.
One of the first things they tell the family of an MS patient is that stress exacerbates it. Here’s the diagnosis, now stay calm, everybody, and it’ll be all right. Breathe easy; don’t worry; it’s not the end of the world, they say.
That’s what I tried to pass on to [name withheld]when he said he was diagnosed. I was checking e-mail when he popped up on instant messenger, asking if we could talk about my Mum.
He had never known my Mum, other than through what I had written about her MS when trying to raise donations for MS charities. The penny dropped instantly. He had recently complained of mysterious numbness and pins and needles, and I knew immediately he had been diagnosed.
Then I panicked, because he wanted to ask about Mum’s story, which isn’t one you’d want to relate to a newly-diagnosed patient. Hers had no happy ending, it was the MS doomsday scenario.
From normality to Richard Pryor in four short years. In most cases MS is, in the grand spectrum of degenerative diseases, eminently bearable and actually pretty manageable.
A diagnosis usually means making some environmental and behavioural changes, and dealing with the odd bout of illness, but, largely, life remains the same. A cousin of Mum’s has it and lives a happy and busy life.
Mum’s case of MS, however, was far from typical. It was hugely and unusually aggressive and we weren’t told about the impact of stress on MS until her condition had moved beyond a simple case of stress management.
The period between the emergence of her symptoms and the official diagnosis saw her endure one of the ‘Big Three’ when it comes to stressful life events: her separation from my father. After a family trip to Barbados, Mum started complaining of strange symptoms. Her balance was off, her hearing was supersensitive, and she had headaches and nausea.
The doctors, at this stage, were bobbing for answers in a confused sea of symptoms but coming up with nothing. After a course of steroids, she was sent home feeling slightly better, but changes were already under way. Her mood swung like a pendulum, which we put down to hormones, but the changes deepened. Mum became wildly emotional, uncontrollably so.
I later learned, from another MS sufferer and campaigner, that the MS patient will often undergo alterations in their personality. The severity of it varies with the person, but before we knew it was the MS we were in the dark as to why mum had changed so much. She couldn’t explain it either.
As she worsened, her friends couldn’t handle her. Neither could my father, and they split after 20 years of marriage. Having been a sociable, sporty person, at the hub of everything from tennis club committees to charity work, and our lives as her children, Mum became a physical and emotional stranger to us all, far from the person who married Dad and raised us.
Gone was the artistic, productive and positive backbone of what was a very happy family. Instead, we got to know a hyper-sensitive, paranoid and deeply sad woman, whom we loved none the less, but whose emergence we just couldn’t understand.
Their separation only served to make matters worse and, as the MS, still undiagnosed, took hold of Mum’s nervous system her memory and motor control began to slip. Small dings started to appear mysteriously on Mum’s car, blamed unfairly on the two L-plate drivers in the house (myself and my sister), to the point that we started to question our own memories, and each other’s driving.
Tennis, golf, everything was suddenly beyond mum’s physical capabilities and her social life, which revolved around her sport, fell apart.
Fully aware of her own dilapidation, Mum’s frustration and depression snowballed, with tears an almost daily occurrence. Our house, formerly famous for its open door to all comers, Mum’s smile and home cooking, became somewhere we only brought friends when it was unavoidable. I was 19 years old, starting in college. My sister was 16, becoming a woman with her female role model torn asunder. Our mother was just 43.
Her eyesight worsened, with her eyeballs oscillating uncontrollably, and we realised that this had to be more than hormones. Some thorough investigation by Prof Michael Hutchinson in St Vincent’s Private Hospital turned up the reason. She had MS.
It had been lurking in her system, perhaps forever, and was probably spurred into action by an earlier bout of encephalitis, helped along by the various stressful episodes since then. MRI scans showed up lesions in her nervous system, and the damage was irreversible.
Professor Hutchinson, to his credit, threw the book at Mum’s MS and showed superhuman compassion and patience in trying to slow it down. We visited ‘Hutch’ in St Vincent’s so often that he became like an uncle, and he seemed to take every loss in our shared battle personally.
Betaferon drugs were diagnosed, and I learnt how to inject Mum’s back three times a week. Their impact is unpredictable, and they didn’t work. Neither did steroids, and nor did the joints my friends supplied, to Mum’s horror, for ‘‘medicinal purposes’’. We would try anything, and reckoned that the uplifting feeling of sticking it to the man by making a minty with Mum’s menthol cigarettes had to be worth something.
Mum and I moved house, leaving the family home and having to discard much of the detritus of 14 years of living. This was stress number two of the big three, and Mum’s mobility worsened considerably as a result. She couldn’t feel her feet through the pins and needles she was experiencing, and the new house had to have handles fitted in the bathroom and an extra banister on the stairs.
I coached Mum to come down our steep stairs backwards, so that if she slipped, she was less likely to do herself damage. Stress number three would come 18 months later, when Rose, my maternal grandmother, died after a short illness.
The funeral was Mum’s first public outing in a wheelchair, and came as a shock for many of her friends, who hadn’t seen her since she disappeared from whatever ‘scene’ they knew her from.
Nana’s death pulled the rug out from under her feet completely. Within a month, she became unmanageable, unable to wash herself, feed herself, clothe herself. She nearly set the house aflame lighting a cigarette. I couldn’t do it alone any more.
We had no choice, and looked for suitable care, and then spent a year and a half visiting Mum in a nursing home, where she sat, her speech, physical control and awareness sliding until the end. She was the youngest in the facility by some 25 years.
Multiple sclerosis: the facts
What is MS?
MS is a condition that causes the links in a patient’s nervous system to degrade. The connections between nerve cells, white matter cells, are the wiring of your nervous system, carrying messages around your body from your brain to your limbs and organs.
Just like electrical wiring, the wiring in your nervous system has a protective coating around it, made of a substance called myelin. In MS, the cells responsible for maintaining this protective myelin lining come under attack, meaning the lining can degrade. This exposes the connecting nerve fibres to damage and, eventually, breakdown.
Who gets it?
MS is most prevalent in latitudes between 40 and 60 degrees north or south of the equator, and among people in their 20s and 30s. Among affected populations, approximately one person in 1,000 will get MS, with the prevalence for children of MS sufferers rising to one in 40. Women are 50 per cent more likely to develop it than men. It is not contagious, it is not fatal, and there are 2.5 million MS sufferers worldwide.
How fast does it act?
That depends on the person. In its ‘relapsing-remitting’ phase, the symptoms of MS come and go, with extended periods of wellness between attacks where the symptoms can disappear completely. Progressive MS, often diagnosed in later stages, has a more sustained effect on the patient. If diagnosed early, MS is often prevented from reaching the progressive stage for a long time.
Is there a cure?
Not yet. There are plenty of tried and tested remedies to help slow the progress of MS. One of the more recent discoveries, Tysabri, has been removed from the shelves again after patients developed side-effects.
Who can help me if I have MS?
MS Ireland is Ireland’s support agency for MS sufferers and their families. In 2007, it spent €9 million helping people deal with MS, providing more than 5,600 members with support, welfare counselling and through its MS helpline.
It is the first port of call for many MS patients, funding MS research and lobbying hard for improvements in MS care in Ireland. Half its income is derived from donations and fundraising. If you think you might have MS, wish to know more about the disease or want to help raise funds, contact MS Ireland on 1850–233233 or visit www.ms-society.ie.
When [name withheld] was diagnosed with MS, he contacted fellow journalist Markham Nolan, whose mother died after a battle with the disease. The first advice he received: smoke a joint, don’t stress, and run that marathon. This is the instant messenger conversation they had on January 16:
D: Can I ask you a question about your mum?
D: How long did she have MS?
M: Have you been diagnosed?
D: Last week.
M: Sorry man. But don’t get too worried. Mum’s was a test case. She had an unusually aggressive form of MS. Most people get relapsing/ remitting MS which comes in waves but you’re grand in between. Mum was diagnosed five years before she died. Her case is not one you should use as a benchmark
D: Just wanted to know how long she had it — they want to put me on Interferon next month when the final test result is back. I will tell my folks then what it is. I’m breaking them in but once they hear those two letters they’ll think the worst.
M: I dealt with two neuro guys in Vincent’s during her illness. Dr Hutchinson, who was v good, and also Dr Tubridy — Ryan’s bro — who had the nicest bedside manner of any doctor I’ve met.
D: I have a guy in Cork called Harrington.
M: When you started talking about the numbness, etc, it came to mind immediately, I have to say. Best advice I can give you: DON’T STRESS. Smoke a spliff. Stress and MS go together like petrol and matches. So with Mum, the old divorce/ moving house/mother dying combo wasn’t all that helpful.
D: Yeah they told me not to get stressed.
M: E-mail if you’ve got any questions. My cousin has it too, he still works his ass off and is just fine 90 per cent of the time.
D: I should be okay running a marathon you think? Feel like I need to prove myself.
M: Of course. Exercise is stress relief. Ten months till the next Dublin mara.
Reminder: I’m cycling 100 miles for MS in October — please donate