November 2006

My name is Michael Howard and I am 37 years old. All my life I was told that I had a form of muscular dystrophy and the type was unknown until very recently.

"I felt such a relief after 37 years of assumptions and guesswork about my condition "

In 1980 I was tested by Professor Thomas at the Royal Free Hospital in Hampstead, London. I had a muscle biopsy, liver biopsy, endless blood tests and had to fast in order to try and establish the type of muscular dystrophy I have, and also the type my father had before he died. At this time the doctors weren’t able to diagnose the type of muscular dystrophy and said maybe they should call it the Howard’s disease after me!

Mike Howard and his son Ciaran It was not until last November that I read an article about periodic paralysis and the characteristics strikingly matched the problems I experienced. For example there are times when I have the muscle weakness and other times when I am almost able to function without any weakness. It was amazing because every detail of the article seemed to be the same as my situation. So I went to see my GP Dr Johnson at the Kessingland Surgery and brought him some information about periodic paralysis. After he spent some time considering the information I provided him with, he got in touch with Dr Dick at the James Paget Hospital in Gorleston, Great Yarmouth.

After this very exciting start I went to meet Dr Dick at the Norfolk and Norwich Hospital back in June 2006 and he carried out more blood tests and another muscle biopsy. The result showed tubular aggregates in my muscle tissue which indicates periodic paralysis. I went back to the Norfolk and Norwich Hospital to see Dr Blake, who carried out an EMG (electromyography) in order to make a more reliable diagnosis. The EMG results were positive and Dr Blake was sure that my diagnosis was the neuromuscular condition called periodic paralysis but is going to write to Dr Dick and Professor Hanna to confirm his findings.

I felt such a relief after 37 years of assumptions and guesswork about my condition and never being able to completely understand the difference between my condition and the type of muscular dystrophy my friends have, a lot of whom have already died.

At this point I want to thank everybody who has supported and participated in the muscular dystrophy research and contributed to the possibility of diagnosing my condition.

Now I feel I can pursue my life long ambition of travelling to New Zealand. Next October my dream will finally come true. I have four step-children and one son who we know is clear of muscular dystrophy. I would like to participate in a sponsored event so I can raise awareness of muscular dystrophy in New Zealand.

I am currently working as a Training and Employment Consultant for CMHT in Lowestoft supporting people with mental health problems. I am also studying for a NVQ 3 in Health and Social Care and am a Parish Councillor in Kessingland.

For the last 20 years I have also spent some time as a musician as I love to play the guitar and sing. Not even my bad weeks, when I had trouble with standing and walking, prevented me from doing what I like to do. These examples are just a few to show that even with muscular dystrophy, one can make the most of life, enjoy everyday and live dreams to the full without any restriction. I hope that my life story can encourage people with the same condition. Altogether I can be proud of being able to say that I have lived my life.

If there is anyone who has had similar experiences or has ideas for fundraising in New Zealand, please do get in touch via the Muscular Dystrophy Campaign at info@muscular-dystrophy.org