MS is much more than just two letters

The first time Joe Lee heard MS they were just letters of the alphabet to him "like A-B-C", he said. That was seven years ago when Joe was diagnosed with multiple sclerosis. It started with pains in his back and feeling fatigue at work in Bradys Cavan. Walking was becoming difficult too, so his wife made him an appointment with Dr. Marie Ellis-McDwyer, who tested his reflexes and sent him to Tallaght hospital for further examination. A neurologist at Tallaght told him there was a tumour in his neck that was operable but the procedure would leave him paralysed. A determined character, who insisted on walking to and from The Anglo-Celt office for this interview, Joe declined the treatment: "I walked in here and I'll walk out…," he told the doctor, "then they came back to me after a few days and said there'd been a mistake" [blamed on a poor quality scan image]. So they did more scans and a lumbar puncture, the outcome of which Joe illustrated by lifting the cable for an electric radio: "The flex has a protective cover," he said, like the spinal cord, "and that if becomes damaged, the nerves are damaged - there's no protection - and the nerves lose the signal. I was lucky enough, mine was confined to the neck, most of the damage was from the neck down - hopefully it doesn't go any higher." He says the signal still gets blocked sometimes, like when he has to lift his leg over an obstacle, but after seven years of dealing with the condition Joe is now back at work part-time and can manage to get around reasonably well (though he was extremely tired the day after he walked from the town centre to the Celt and back). It wasn't easy to get to where he is now either: "I finished work in November [2003] and from then till the diagnosis was finalised [in January 2004] I wasn't able to work or do anything else. The mortgage had to be paid, but there was no money coming in… there was some help to get the bills paid but nothing definite. "It takes months to get everything sorted, months of waiting and worrying about money. I got in contact with Tess, an MS Ireland case worker, and she explained and helped with entitlements and taking the next step." Joe also spoke to another MS sufferer in Cavan, who he contacted through the Cavan branch of MS Ireland ("a great bunch of people"). "You like to talk to somebody who has it, Joe explained, somebody who has MS understands, it's someone to talk to - before that I didn't know anyone with MS, didn't know anything about it." Tess gave Joe booklets outlining the likely effects of MS on his family - Mikaela, Jamie and Gemma and his wife Margaret - who he says were supportive throughout. "They still look out for me, they got used to it. It was very hard for them… to be honest I was very contrary, I was depressed. They had a lot to put up with, but they helped me get through it, I talk to them about it and they're always there for me. "They were always ready to catch me if I was going to fall. I'm not too bad now; if you go into my house you'd see hand prints on the walls. There are times I can fly, you wouldn't think there was anything wrong with me, other days I have to walk with a hand on the table." The mornings are worst for Joe, as he wakes up stiff and sore, and it takes a while to loosen up. His left leg is weaker and he wears out the toes of left foot trainers more quickly. Joe has a wheelchair, which he doesn't need much but likes to have in the car if he's going anywhere, and is on "a ball of tablets every day", including Rebif three times a week, to control his condition. He visits a specialist in Tallaght once a year, and takes comfort in the knowledge that research on MS treatments is continuous. His car has an electric clutch so he has the freedom to get around, but walking remains difficult. Joe joined the Cavan branch of MS Ireland in 2004 and goes on the annual trip - usually to a seaside resort like Bundoran or somewhere in Donegal - attends the meetings, and is part of the support network. "If you need anything done there's help, somebody to talk to, there's the Christmas dinner and the meetings in the Kilmore on the first Wednesday of the month," Joe. He is the branch secretary now and is part of the team offering support as well as receiving it, and the fundraising efforts, most recently for a minibus. He has also done computer classes with the Irish Wheelchair Association, which led to an ECDL, then a FETAC qualification and a spell teaching computers for the IWA. Spending cutbacks terminated that contract, but Joe is now working part-time at Bradys Cavan, which is "a great new lease of life… before this I'd be fed up at home, depressed. There was a time three or four years ago I wouldn't get out of bed, so my wife told me to get up and cop myself on. That was the best thing, I could still in bed. You get into a rut." Joe doesn't come across as a man who would get stuck in a rut for long, but living with MS must be a constant challenge? "First of all you're angry, it's why me? I was used to work and I had to quit work, I had to quit walking - I always walked everywhere… I couldn't tell you the last time I ran. I used to do a lot of swimming years ago, but now I can only do a couple of lengths of the pool. I'm not able to use the legs, particularly the left. "At the start it was waiting for the diagnosis and wondering what was wrong. The next stage is acceptance when you do get the diagnosis, then it's down to reality - where was the money going to come from, we still had to live. That is where my case worker Tess and the local branch came in with help and advice. "Health-wise I've never felt better in my life though I'm tired at night - fatigue is a big problem with MS." Joe might get fatigued easily, but he has a quite determination and won't allow MS to stop him living a full life. • About Multiple Sclerosis: Multiple Sclerosis affects the central nervous system and is the most common disabling neurological condition of young adults. Some 10,000 people in Ireland have MS and thousands more affected as families, carers and friends. Some people have lesions on their brain, which affects their speech and sight, another symptom of MS. These lesions or scars are called scleroses hence name Multiple Sclerosis There is still no cure for MS. MS Ireland needs to raise €10m every year to run its services nationally. • On September 10-12 MS Ireland hosts its annual conference in the Slieve Russell Hotel, Ballyconnell. • Contact Joe at leepj@eircom.net. The society is based at 80 Northumberland Road, Dublin 4, 01-6781600; helpline 1850-233233; ms-society.ie.