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Living with KD

Personal Stories

Mal Kelly, Born 1942 - Australia

Mal Kelly, Born 1942 - Australia

n April 1982, I went camping with my family to Binna Burra. Everything was okay until I went for a walk in the forest and found that I had great difficulty in walking.

Off to my local General Practitioner who discovered that I had no reflexes at all. He referred me to a Neurologist and after many tests and a stint in hospital he reckoned I had Motor Neurone Disease (MND). I obtained some literature about it but not a lot else.

Panic then set-in as I estimated I had only a few months to live. I changed positions within my employment which entailed less walking and climbing of stairs. I could still cope at work but was now showing wasting of the hands and legs.

In September 1982, I approached another Neurologist who conducted another lot of tests. As I was coping with work and had not deteriorated as much as expected with MND he diagnosed me as having X-Linked Bulbar Spinal Muscular Atrophy. Thank goodness, I’m going to live after all.

It was then that I was told that the illness had an unknown source and no treatment was available. Great, here I was in limbo and nobody could help or tell me anything about this death sentence. People with Cancer received a lot of treatment, but my illness - nothing.

I then approached another Neurologist over the next three to four years who used to take my money, pat me on the head, and tell me it’s progressing slowly and come back next year.

The progression of the wasting was becoming too much for me to cope properly at work and I decided to retire in 1989. My superannuation fund wanted a report from their Neurologist and after more tests I was cleared and pensioned out.

I had at last found a Neurologist who was interested in what I had and he admitted me to hospital to try and pinpoint what exactly it was. It was not until August 1997 that I was finally diagnosed with Kennedy’s Disease.

The wasting is progressing, but very slowly and the usual symptoms of difficulty in swallowing is ever present. I can only walk a short distance with difficulty, and climbing stairs or slopes without assistance is impossible. I had at one stage twelve to eighteen months ago, where my throat muscles used to close up - not a recommended symptom to get. On odd occasions lately I have echoing in my ears. I must have broken every toe on my feet from all the repeated falls I’ve had and my local General Practitioner has me on calcium tablets to try and strengthen them. The crockery set has taking a belting of late as the power goes from my hands.

I am trying to remain active in my retirement but by night time I’m completely stuffed and have to put my legs up which have ached continually for the past six years.

My wife and family have been a great help to me ever since the diagnosis and of late I’m getting upset at the ever increasing work load my wife has had to do whilst I slowly spend more time sitting.