Nancy's Story

Bill and Nancy Hare - Nov 1999

Bill and Nancy Hare - Nov 1999
 

June 2003

I was born in Wauchope in 1928, Nancy Everingham and married Bill Hare in June 1946.  This is my story and thoughts on Motor Neurone Disease (MND) having been diagnosis with the disease in June 2000.  However I do believe I had been suffering from it for many years before that date.

I remember having intermittent voice loss before 1991.  At first I thought it was Laryngitis and then I got a fury tongue.  When it kept up, I was so sure I had cancer in the throat and ask to see a Specialist in Caboolture November 1991.  The Specialist though it was the way I spoke which was putting a strain on the throat muscle and I needed speech therapy.  This was arranged at the Royal Brisbane Hospital.  The intermittent voice loss was still accruing but I did not worry, as there were no nasty problems with the throat.

In November 1995 I went to see another Specialist in Wickham Terrace, Brisbane.  She diagnosed reflux and recommended putting the head of the bed up for sleeping.  My GP was now treating me for Sjogren’s Syndrome [Dry Mouth] and recommended I should have more voice therapy - so I had more in Redcliffe during 1999.

Cornflowers - The international symbol of hope for people living with MNDEarly 2000 I had almost lost my voice, so in April 2000 I went back to the Doctor in Brisbane.  I had a barium swallow blood test including B12 and folate plus saw a Speech Therapist.  The Speech Therapy rang the Doctor straight away and he brought my next appointment forward to the next day.  I was then referred to a Neurologist.  In May 2000 the Neurologist ordered another blood test and a MRI.  Returning to the Neurologist in June 2000, I was told he thought my problem was bulbar palsy, a form of MND.  I had never heard the words before but my husband was called in to be told.  Being an Ex Ambulance Officer he had heard and knew all about it, poor man shook all over.

I continued going to Neurologist in Brisbane for 12 months but then had a talk with Doctor, as he could not do anything for me, the cost was a lot, plus it was a very long day with the traveling from Bribie Island.  I stopped going to Brisbane for checks from that day.  I have not had MND confirmed by electromyography at the time of writing this story.

However I have been into Brisbane to a research program and it was very good.   The Sister from Karuna took both Bill and I in and we gave blood for the research.  It was an eye opener.

Update: February 2005

I am now in Sunnymeade Nursing Home and Bill lives close by in the Village.  At the top of this web page is a photo of Bill and myself in better days.

Update: April 2005

Nancy and Dr Ramsay - With the Chariot  Bill and Nancy at Sunnymeade - With the Chariot!

Doctor Rosemary and Karuna Nurse Jill ran an appeal for an electric wheel chair for me.  People and clubs on Bribie Island gave to the appeal.  It was wonderful of them and the motorize wheel chair allows me to move myself around, giving some independence.  The wheel chair I now call my CHARIOT! 

It will go back to Bribie Hospice when I am finished with it.  The photo is of the Doctor and me when I first got it the wheel chair.

Nancy Hare

Mum pass away on the 10 May 2006 and is sadly missed by us all

I am a Bulldog support

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