MDF Magazine Issue 54 December 2017

People
Just live!
So says Anne-Marie,
diagnosed with FSHD
at age 33
[Extracts from the article “‘Lewe net!’, sê lyer”
published in TygerBurger Goodwood, 5 September
2017 written by Carina Roux (translated and
slightly adapted by Pieter Joubert)]
TygerBurger spoke to Anne-Marie
Stoman, 58, a resident of Panorama
Palms Retirement Village.
She was diagnosed with facioscapulohumeral
muscular dystrophy
(FSHD) at the age of 33.
FSHD affects the muscles in the
face, shoulders and upper arms.
It goes even further to her waist
and legs – even to her feet, Anne-
Marie explains. “My whole body
is affected. That's why I can tell
a joke without emotion”, she
laughs.
The offbeat humour soon comes
through in the conversation.
She was very sporty and took
part in hockey, squash, karate
and modern dancing. It was in an
aerobic exercise class that she
"began to feel like an elephant –
thud, thud, thud, I could not skip
anymore”.
She went home embarrassed,
where she tried to stand on her
heels. “I couldn’t. Even less on my
toes. I thought I was going crazy.”
She went from one doctor to the
next. Eventually an intern friend
referred her to a doctor at Mediclinic
Constantiaberg. He made
the diagnosis by sticking needles
into her left leg, and was able to
determine that the problem lay
with her muscles.
She continued with sport and with
exercising at a women's gym until
seven years ago, “until I really
couldn’t do it any more”.
About the diagnosis, she just
thought “whatever” and did not
even read up on FSHD. “I just
went on with my life until I started
falling – also at work.”
She worked in the army's signal
regiment, a fine-grained job
where she sometimes had to install
and carry equipment. She
started falling and later could no
longer work.
She assists with administration
functions at the Muscular Dystrophy
Foundation Cape Branch and
provides moral support for others
– like the mother of a young man
just diagnosed.
“I give moral support and sometimes
visit people when they are
a bit depressed – I love helping
people.”
Many people struggle to accept
the condition, she says, but she's
very positive – “and I laugh at everything,
maybe it's wrong! I know
exactly how it feels for people who
have just been diagnosed – you
must try to get something positive
out of your situation and it's difficult.
Once you've done the mind
switch, forget the rest, just live!”
She emphasises that one must
keep on going, but she admits
you cannot force people, as they
sometimes think it's a death sentence.
Fit and active
She was always fit and active and
believes this definitely helped
her body not to deteriorate too
quickly. “I should have been in a
wheelchair a long time ago – the
longer you can keep your muscles
supple, the longer you can keep
their strength.”
In the beginning, a person will
feel the difference in their body,
she says, and later you will find
that you struggle with a drawer
that you could still open the day
before. Then you should be careful
not to hurt yourself. “I give
such advice on things that have
happened to me.”
It may sound strange, says Anne-
Marie, but she has never been
as happy as she is now. “In my
work I was always on the ball
and thought people should keep
up with my fast pace. They were
actually scared of me and didn’t
want to talk to me.” Now she is
much more relaxed.
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