HEALTH Living with MS and epilepsy

When life brings new challenges


Ballintubber man Pat McCarthy talks about living with MS and epilepsy

In my words
Pat McCarthy

Back in 1994 I was in my final year studying Social Work in Coventry University, I went to the doctor with a constant numbness in my right shoulder. I was referred to a consultant neurologist, and after undergoing tests I was told that I had multiple sclerosis.
I moved back home to Mayo when I qualified and visited my local GP, which started further assessments and eventually confirmed the diagnosis of MS. I was familiar with MS, as I had worked as a volunteer with the local MS Ireland branch. I knew there were many levels of MS, and from the start I wanted to live my life as normally as possible in spite of the diagnosis.
I continued to play Gaelic football without difficulty at senior level for Ballintubber. The MS meant I needed to rest more to regain my daily ability, but that didn’t stop me. My work as a social worker then took me to Derry. My employers were aware of my disability and were very accommodating. I continued to play Gaelic football with Steelstown, Derry.
In 2000, I married Derry woman Heather and moved to Letterkenny, where I worked as a social worker for people with disabilities, and then as social worker in Letterkenny General Hospital.
In March 2006, I had my first tonic-clonic seizure [a type of convulsive epileptic seizure], totally out of the blue in the middle of the night. I ended up in intensive care. I don’ t remember anything of the event, except waking up in hospital with Heather beside me. It was quite strange being a hospital worker in the afternoon only to return in the middle of the night as an intensive care patient!
I have had several further admissions to hospital since, and it’s fair to say that I see the neurologist a lot. For me, the seizures tend to spark problems for my MS, but the physiotherapy and occupational therapy teams in the Rehab Unit at Letterkenny always do a great job assisting with recovery and helping me to improve. My epilepsy means I cannot drive or cycle on the roads, so I have had to make changes regarding work and mobility. I began to use public transport and adapted my lifestyle somewhat – ensuring I get good-quality rest, avoid alcohol, get lifts; take medication and so on.
My epilepsy and MS are equally unpredictable. Just like an accident, I never know when seizures will happen. Both disorders are very complex in how they present both neurologically and physically. Each also has their own needs. My MS can cause physical difficulties, so I need to keep exercising in moderation. My epilepsy can occur at night or during the day, which means I need someone with me in the house, as staying there with our kids alone at night is not a possibility. Heather is great and has the patience of a saint. Even though I like to think I have great organisational skills (!), Heather keeps an eye on things. She is also my regular chauffeur these days.
Our wonderful children, Katie (11) and Jane (7) have seen my seizures, and they have a good appreciation of the situation. They understand that I may have a little difficulty with my mobility, and that makes it easier to get on with life. I was able to become involved in parent activities at their school, such as including art and craft productions.
I take a combination of medications, but this is not too bad. I am used to it now and, thankfully, both conditions are stable for now. I have good support from my doctor and pharmacist, as well as from MS Ireland and Epilepsy Ireland. Most importantly, I have support from my family and friends.
I got the opportunity to retire in 2010. This meant that I could think about alternative pastimes. Working in the garden is great, and I do simple manual things, mainly for exercise and fitness. I like physical exercise, and it’s the best way to increase dexterity, balance and strength. That’s important, as when the MS hits me, it’s usually my dexterity and coordination that are affected.
Epilepsy is always there in the background, so I need to do everything in moderation. I enjoy taking part in local activities, such as short-story writing, swimming, walking and participating in GAA activities, again all in moderation. I’ve also taken the opportunity to volunteer with various disability organisations in the area, which has definitely helped me feel more comfortable with my own disabilities.

Pat McCarthy is currently voluntary PRO with the Donegal branch of Multiple Sclerosis Ireland, helping the society to prepare for World MS Day on May 28. He is also a member of Epilepsy Ireland.
An Epilepsy Ireland (Western Region) meeting will take place in the Family Centre, Castlebar, on June 10. For more information contact 091 587640 or visit www.epilepsy.ie.