Skip to main content

Living with KD

Personal Stories

Alistair Fyfe, Born 1937 - Australia

Alistair Fyfe, Born 1937 - Australia

How did it start?  First is was my speech, then shakes in my legs...

Let me turn back the clock six years, when I was 57 years old.  I first realized something was wrong when every time I spoke it was very nasal-sounding and I heard echoing in my ears.  Off to the doctors to be told he thought it was sinus.  I was given all sorts of nose sprays to try and help, but to no avail.  I asked what about the shakes in my hands?  He told me, "well you’re not as young as you used to be it’s your age".

Seeking a second opinion I was sent to a hospital for a sleeping test to find out if my problem was my breathing when I slept.  It turned out that everything was okay in that department.  I went to another hospital where they inserted a camera up my nose and checked out my nasal passages and throat.  As all this was going on my speech was getting worse.  It got to a point where I could not attend a staff meeting or  in-house managers meetings.  My legs were beginning to lose power, especially going up stairs or a hill.

I was then referred to a neurologist for more tests, which were not very pleasant as electric impulses were put into my feet and arms and around my mouth to measure muscle movements.  After all the tests were finished I had to wait for the results.  I can still recall my pager going off and then looking for a telephone to call and get my results that were now available.  I must say that I would have won a gold medal for being the fastest walker in the hospital because I arrived at the department just as they were putting down the telephone.

They told me, "Alistair, your test is as I expected, Muscular Bulbar!" Sounds like a bumper for a four-wheel drive vehicle.

I asked, "What is Muscular Bulbar?"  They answered, "I believe that your type is Kennedy’s Disease."

I wanted to know "What’s Kennedy’s Disease?"  They explained, "It is a form of Inherited Motor Neuron Disease."

As I had been involved with Motor Neuron Disease through the Warners Bay Lions Club, I thought I would be dead in about three years.  On leaving the professors office I went straight to the medical library asking for them to find all the material on Kennedy’s Disease.  Results were nil. I was asked what I wanted it for and told them that I had just been told I had MND (Motor Neuron disease).  Well if you know anything about working in a hospital, you would know that it does not take long for information to spread like wildfire. The next day I was called back to the professor’s office to be told that I was not going to die that quick as nobody had died from Kennedy’s disease.  Even so to me it was a life sentence being told that it was a very slow progressive disease.  To confirm all of this I went for genetic test to which confirmed that I had Kennedy’s disease.

I was asked what I wanted to do.  I replied, "retire", which I did.  Upon doing so my speech improved which I was told would happen, as the position I held was very stressful and demanding.

I have tried to trace back through family history to see if any other person or persons had ever had Kennedy’s but to no avail.  It is a gene that is passed on from the mother to the son.

In five years I have managed to find five people with Kennedy’s Disease, so as far as I am concerned I am a very rare person.  One contact that I had in Sydney has passed away through complications after taking a severe cold.  My wife Christine, family and friends have supported me over the years. What I cannot do myself they do for me. Today I enjoy being part of the Motor Neuron Disease Support Group helping out in any way that I can to help those less fortunate than myself, and hopefully will continue to do so for a long time to come.

Today in Australia there are about 21 persons with Kennedy's Disease that I know of. Today I make every day count but I have at present found it very hard to come to terms with Kennedy's after seven years, as I have always been very active person then just finding out when I tried to do a simple task, I could not get back onto my feet as the power was not there.

But life is not all doom and gloom you make the effort to do the best you can do with what you have. We are the lucky ones, we will pass on through old age.

One other thing I have found out is, speaking to somebody that has the same problem as yourself is the best medicine and support one can receive.