Allen O'Connor

Country: Ireland
Age: 58
Occupation: Retired Banker
Type of MS: Relapse Remission (RR) for now
Year of diagnosis: 1985





1984 was the worst year of my life, on 7 January my mother died of multiple myeloma (bone marrow cancer) and on 7 December my nine-year-old daughter was killed in a freak accident.

The following spring I got pins and needles in both legs that lasted for over two weeks. My doctor was unable to diagnose anything. In May 1985, however, a neurologist took one look at me and said “Mr O’Connor, you have MS”. This diagnosis was confirmed by lumbar puncture as there was no magnetic resonance imaging (MRI) available in Cork at that time. The neurologist explained the possible progression of MS, that he was hopeful my MS would not be too bad and that there was no treatment available so I should go away and live my life. The only bit of good news that I took from the diagnosis was that, in his opinion, I had had MS for at least 19 years; if that was the case, MS had had very little effect on my quality of life, and hopefully that would continue.

In 1987 I had my worst MS attack; I was totally paralysed and could not even speak. The doctor told my wife, June, it was MS, there was nothing that could be done and I might remain paralysed and unable to speak for the rest of my days: it nearly killed me that I could not answer him and rudely tell him where to go. Although my speech has never fully recovered - I speak more slowly and with a reduced vocabulary - it has not turned out to be much of a problem.

As far as treatment is concerned, I tried the Interferons without success, in fact I deteriorated. I am currently on Tysabri and so far so good.

I retired from paid employment in 1993 because of the lack of control I have over my emotions; I can cry or laugh without any reason and bankers are not expected to cry when a customer comes looking for a loan.

Life with MS, after paid employment, really began for me in late 1993 with my appointment to the Irish State’s Commission on the Status of People with Disabilities. This changed my life for the better as over the following three years I had hands-on involvement in changing the lives of people with disabilities in Ireland. The work culminated in the report A Strategy for Equality which can be viewed on the National Disability Authority website.

Following the Commission, I assisted in the establishment of a national cross-disability organisation for people with disabilities; this is now available at people with disabilities in Ireland.

I was National Chairman of the Disabled Drivers Association & Ability Enterprises for a number of years and am currently a board member. I am also in my second term as a National Board member of the Citizens Information Phone Service.

I started my involvement with MS Ireland in 1993 as a local branch treasurer followed by National Treasurer and then National Chairman. I held the post of Treasurer of the European Multiple Sclerosis Platform (EMSP) for two years and have been an MSIF Board member for the last four years. I am just embarking on my four-year-term as Chairman of MSIF’s Persons with Multiple Sclerosis International Committee (PwMSIC).

If you have MS, Ireland is a good place to live. MS Ireland's 41 branches, 10 regional offices, a care centre and a National Resource Centre, provide support that assists you in living your life to the full.

It is also up to each of us to lead the life of our choice; we should avoid making excuses and remember that making a life is far more important than making a living.

I continue to gain inspiration from Mahatma Gandhi, who said,
“Each of us must be the change we want the world to be”