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I was born during June 1944, the second of four girls, to parents who 
farmed at Tahuna a small community north of Morrinsville in the North 
Island of New Zealand.
My first sister was 5 years older, second sister 10 years younger and 
third 12 1/2 years younger.  Although I love all my sisters, I have a 
special empathy for Shirley, the firstborn.  Partly because there 
were only the two of us until I was 10, and all my childhood memories 
are tied up with her.  Also as fate would have it in later years it 
eventuated that we would both suffer from the same condition: 
Olivopontocerebellar atrophy (OPCA).
My childhood was idyllic. Memories include my pet pig 'Pansy'; 
picnics at the back of the farm with our parents  we always had 
jelly; cycling to Sunday School in the rain; and haymaking which was
always a big neighbourhood event, with horses and stackers and many 
many people, plus food everywhere.
Another special memory is of my imaginary friends.  Shirley was so 
much older than me, and my younger sisters so much younger, that I 
was forced to play by myself.  Consequently I created my own friends 
 they were great because they always did my bidding.
From my father I inherited my quest for knowledge; I used to read 
anything I could lay my hands on.  He also had a wonderful sense of 
humour, which everyone says must be where I got mine.  My mother was 
a very creative and artistic person, these traits were also inherited 
by me.  Therefore, I always had in the pipeline some artistic project
; for example: writing, painting, drawing, upholstery 
(in later years) and sewing.
When I was nine, it was discovered that I had rheumatoid arthritis.  
This had its ups and downs during my latter childhood but went into 
remission during my late 20's, only to resurface in recent years.
 
I left school after gaining the University Entrance qualification and 
left home in my quest for work.  I first went to live in a YWCA 
hostel, in Hamilton, which was a wonderful place to live.  Lots of 
friends, everybody sharing and congregating together.  After that, I 
lived in several flats.  I loved this period of my life.  In general, 
life was pretty good.  However, at 20 I went overseas full of 
anticipation.
Due to family illness, I cut my overseas jaunt short mainly so that I 
could see my father again.  After a brief spell at home I started to 
work in Auckland, again living in the flatting situation in a place 
by the beach at Herne Bay.  I lived there for between 3 & 4 years.  
There was much partying and social activity until, at 25, I again got 
the urge to travel.  Two wonderful years were spent living in London 
and the friends I made there are still friends today.
After 2 1/2 years, I returned to New Zealand, much to the pleasure of 
my family.  The little sisters had grown up and were now big sisters.  
Although I didn't realise it then my older sister and mother were 
both showing the first signs of OPCA, which, it is now clear, is 
inherent in my family.  For example, my mother had a very ungainly 
gait, which I wished fervently she could control.  My sister always 
appeared to be on the verge of drunkenness, which I knew not to be 
the case  but I didn't understand what was going on.
My mother seemed to lack motivation and energy although in those 
years she also nursed my father through bone marrow leukemia.  He 
died aged 68 years ,when I was 30; we were all absolutely shattered; 
my younger sister was only 17.
Without reason to think of others, my mother began to show more signs 
of the condition, although she was a wonderful courageous lady who 
managed on her own for a long time.  She even walked up the isle with 
me on my wedding day when I was 33.
However eventually she had to go into an old people's home, although 
at the time she was the 'baby', at only 67 years.  Grandchildren and 
children visited her and she made the best of a difficult situation.  
She died two years later, aged 69, leaving a great gap in our lives.
Meanwhile my older sister was having her own problems.  She never 
went up to the home where my mother died because she had lost her 
mobility.  It was hard for me to see how such a high achiever had 
become a shadow of her former self.  Previously she had done so much: 
excellent academic record, training as a school teacher, instigator 
of a children's play centre in Tahuna, one time president of the 
Women's Division of Federated Farmers, and even ran the local PTA 
(Parent Teachers Association).  In her spare time she was an avid 
cake decorator, flower arranger, and weaver.  All my life I had tried 
to measure up to her and in latter years the competition was all 
removed.  She had also had a family tragedy with the untimely death 
of her youngest daughter which I'm sure hastened her demise just 
short of her 56th birthday.    
People sometimes assume that this is a female orientated condition 
only but it is not.  Shirley had four children and her first son 
(2nd child) who is now about 37 has quite clearly inherited the 
condition.
My first symptoms became apparent in my late 20's at work.  I found 
that I couldn't carry a cup of tea and I never could use an adding 
machine as quick as the others.  Later after my daughter was born I 
could hardly walk in high heels at her christening  I was 36.  Yet, 
I had no idea that there might be some reason for all this until a 
year later when I was pregnant with my son.  I realised when my 
sister, who was still alive at this stage, and was more aware of the 
symptoms, began to tell other family members that I was going to 'get 
it'.  On hearing this, I was in complete denial but time has proved 
her right.
OPCA is an insidious condition.  For years, I tried to carry on as 
'normal', desperately trying to keep up with others and always 
improvising.  I never allowed myself to be late for anything, always 
getting the first carpark, leaving concerts during the last item, and 
hugging the wall at parties.
Of course, this couldn't go on  it was too mentally draining.  
Although not entirely due to my condition, my marriage broke up at 
the beginning of 1994. I was then aged 49 years. I continued to 
manage on my own with my two children, although they were going 
through the truama of a marriage breakup.
At first, I had just an erratic gait then I progressed to a walker, 
and now I go most places in a wheelchair.  I can no longer drive, 
write, sew, or paint and there is a complete lack of coordination.  
Although my mind is still able but my body just won't respond.  
Thankfully I can read (with difficulty) and watch TV.  I am a great 
talker and conversationalist, but even this is becoming very 
difficult, as it is so tiring over time.  I have a consistent 
involuntary tremor in my upper body, head, arms and hands.  People 
often think that this must be very tiring but in reality, it isn't.
I love the nighttime because that means I can sleep and rest in 
peace, without tremors, until the morning when the process starts up 
again.  Some days are better than others.  So much depends on what is 
happening at the time.  Unfortunately, anything to do with stress, 
anxiety or aggravation worsens the condition, so it would be nice to 
avoid these, but sadly, that is not realistic.   
The hardest part of this condition is the difficulty of explaining to 
my children and the agony of not being able to provide for them as 
I'm now in the Howick Baptist Hospital.  My daughter Carley is now 
19, and my son Ryan is 17; they have still to learn the full 
implications of OPCA.  At the moment I am taking one day at a time 
and praying to God for the best outcome of this situation.  I know 
that I won't be healed, but I hope that they don't get it.....
First Edition 19 Jan, 1999
Second   "    21 Jan, 1999





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roger.deuxmont@xtra.co.nz
Manukau City,
New Zealand, Aotearoa (Ao-te-a-roa)

 
  
 

 












  

  
  
                  
                   
                  
  
  
  
  
  
  
  

  





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