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Thank you, Gail, for an insightful information. You did take your
frustration into positive direction by becoming a doctor. The drive that
still continues is good, but you may have to balance it out with other
responsibilities you may have.Your parents may be dead, but they sure
left the treasure in you, strong, intelligent and compassionate person.
May you find serenity in your painful but very special memories.
Sincerely,
Emily
----- Original Message -----
From: "Gail Vass" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, July 01, 2002 6:05 PM
Subject: Living with Parkinson's disease - a child's perspective


> Living with Parkinson's disease - a child's perspective
>
> BMJ 2002;324:1562 ( 29 June 2002)
> http://bmj.com/cgi/content/full/324/7353/1562
>
> I was 10 years old when my mother came back from a large London
teaching hospital
> having been given the diagnosis of young onset Parkinson's disease.
She was 46 years
> of age. She had made the diagnosis herself before this appointment.
She was first
> told it by medical students when, during a consultant led teaching
session, she had
> been asked to walk across the front of a lecture theatre to show the
characteristic
> gait. She was humiliated, and I was angry. That was when I decided to
become a
> doctor myself.
>
> Fortunately, young onset Parkinson's disease is not common. Most
people are aware of
> the devastating symptoms
>
> the tremor, the poverty of movement, the falls, and the terrible side
effects of the
> drugsbut a child sees not only the slow, relentless progression of
symptoms but also
> the loss of the mother that he or she knows.
>
> The effects of this on a child are both practical and emotional. Many
patients with
> Parkinson's disease prefer to withdraw from society. For me, it was
the end of
> family activities: we no longer undertook our regular Sunday bicycle
rides, meals
> out became an impossibility because of the practical difficulties of
eating, and
> family holidays ended. Our family photograph album, which had been
religiously
> updated and annotated, stopped abruptly. My attempts to learn how to
sew and knit
> had to continue without help. Home visits by friends became difficult
and strained.
> Physical gestures and, in particular, cuddles ceased.
>
> Worst of all, however, were the emotional effects of this terrible
illness. The
> frequent falls and difficulty getting up meant that I would often
return from school
> to find my mother on the floor, where she may have been for some
hours. She would
> never complain about her condition, and somehow that made me feel
worse. How can an
> adolescent who is trying to break away from her parents do so with a
mother who is
> physically deteriorating? Would teenage rebellion make her worse?
Certainly,
> argument would increase the tremor. My achievements would be one of
the few things
> that would continue to give her pleasure in life. However, she was
undemanding of
> me, and again somehow that made it worse. How could I talk about my
own problems and
> difficulties? I was concerned about the effect on my father, a
sociable man whose
> life had also been changed by this cruel illness.
>
> I was an only child, and that must have increased my sense of
responsibility. It
> certainly increased my sense of isolation. I fulfilled my intention to
become a
> doctor, driven by my family circumstances. That drive seems to
continue after family
> members are long since dead.
>
> All this happened to me some time ago, and I would hope that now
medical teams have
> a better understanding of the difficulties encountered by patients
with Parkinson's
> disease and their families, but I wonder.
>
> Lesley Rees, consultant paediatric nephrologist.
>
> Great Ormond Street Hospital for Children NHS Trust, London
>
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