My story

Living with a neurological disease: Multiple Sclerosis

I retired from work at the end of March 2000 and, two weeks later on my 56th birthday, I had my first MS attack, followed by another one a week later. A few days later I was flying to Australia so went to see my GP. He told me that I had either MS or a brain tumour. I went to see Dr Baker, a neurologist, when I came back and he sent me to Palmerston North for an MRI scan. I was then flying out to the USA so he arranged for me to have a lumbar puncture before I left. I was already using a walking stick by this time. When I came back he gave me the final diagnosis of MS and told me it was rapid.

By the next year I was using crutches followed by a walking frame. In 2003 I was presented with my first electric wheelchair which gave me my independence back. I had my first admission to hospital in 2004, followed by many others over the years, not always for MS. By 2004 I was losing the use of my left hand and could not type any more so Gary gave me voice recognition software. I belonged to 2 organisations that I was doing newsletters for and I thought I should now be doing something for myself. I took down the boxes of files I made in the 1980s on family history and put away when we got too busy in our business. From the early 2000s my MS was rapid and I have been fully paralysed for the past 10 or so years. I still have the full use of my brain and any sensations which I am thankful for. The only thing I have problems with now is my voice, it is deteriorating quite quickly. I can’t speak more highly of the medical profession, the OTs, physios and all those who have helped me over the years including the support workers, past and present. Not to mention my husband John and my family who have always been there for me.

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