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by Philip Nitschke
Shirley
Nolan was one of Australia’s most
high profile
sufferers from Parkinson’s Disease. Shirley
took her own life at her home in Adelaide in
July 2002.
Shirley Nolan is best known as the
Founder of the bone marrow register – the
Anthony Nolan Trust – named after her young
son - that she established in 1974.
For her work with the Trust, Shirley
was presented to the Queen in 1992 and awarded
an OBE in 1999.
English by birth, Shirley came to
Australia in the early 1990s. While she had
been diagnosed with Parkinsons in her 30s, it
was in her 50s that the disease really started
to have an impact on her.
In an interview published after
her death in the Sydney Morning Herald, Shirley
said: “I have always believed in the right
to exit with dignity.
"I am not advocating going to nursing homes
and disposing of old people, but I want the right
to make that decision myself."
To find mobility she would shoot
dopamine into her thigh up to 12 times a day.
She fluctuated between hot sweats and freezing
and would lie trapped with the air conditioner
on high after her temperature dropped, she would
be unable to move.
In April 2002, Shirley wrote the
first of several open letters in an attempt to
share her thoughts and she said:
I cannot
even move, speak or breathe. I am further demeaned
by staggering, shaking and falling, appearing
to be inebriated. It is easy to appreciate the
loss of self-esteem in Parkinson patients when
they see the look of disgust when observed by
the unenlightened.
Those blocking research for
Parkinson's (and other neurological conditions),
should experience the indescribable terror of
this paralysis. They should experience the slow
erosion of self-confidence, self-worth, freedom
and independence; the inability to even walk alone;
leave one's home unassisted; go to a movie, dine
out, visit friends - those few stalwarts who remain.
It is a life without quality.
It is a living hell. I place what is left of mine
on the altar of compassion in the hope that my
death will highlight the plight of others and
thus, serve some purpose.
I pray for the speedy success
of a change of the law to allow people like me
to have assistance to die.
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