HomeMy WebLinkAboutThe Citizen, 2003-05-14, Page 7THE CITIZEN, WEDNESDAY, MAY 14, 2003. PAGE 7.
Woman shares story to bring awareness
By Bonnie Gropp
Citizen editor
Shelley Smith of Brussels is one
of those people who finds the
sunshine on a cloudy day.
Her frequent smile lights her big
eyes, and she laughs often. What
makes this so special is that the
laughs are coming at her own
expense as she discussed living with
Friedreich’s Ataxia (FA), a rare,
neuromuscular disorder.
“I have come across many doors
in my life that will remain locked.
Yet, I realize that my physical losses
have presented themselves as very
valuable learning tools.”
Symptoms of the illness are loss
of co-ordination, muscle weakness
of lower and upper limbs, heart
enlargement followed by
complications, spine curvature,
slurred speech and impairment to
vision and hearing.
Many of the symptoms Smith
deals with, such as her speech and a
choking cough, are disturbing
because they “follow her in social
settings. They do not reflect who I
am, yet, I cope with them and I am
grateful to have many friends and
family who support me.”
Friedreich’s Ataxia Awareness
Day is May 17. Smith wants to share
her story to help educate people
about her disease.
“Caring, concern and money are
needed. No one deserves to live a
life that has been altered
negatively.”
FA is a genetic disorder. Two
parents must carry the gene and even
with that, Smith says, generally only
one out of four of their children will
have or carry FA. Unfortunately,
both Smith, 31, and her only sibling,
brother, Kent, 28, are afflicted.
A seemingly typical child, it
wasn’t until age five that Smith
began to show symptoms of the
disease. Her gross motor skills were
delayed and her energy levels were
low.
Saying she remembers the time
vividly, Smith explains with her
bubbly laugh “I had a terrible time in
public because I was so clumsy.”
Then however, it didn’t seem like
much more than that. “I was
growing at an average rate and
looked very healthy. But it was in
the walking and sports it was
noticeable.” Laughing she adds,
Letter to the editor
MPP responds
THE EDITOR,
NDP candidate Grant Robertson
was very careful to avoid using
facts in his letter criticizing new
rural education funding announced
by Premier Ernie Eves and myself.
His claim of funding “cuts,” for
example, is contradicted by the
reality that funding for the Avon
Maitland District School Board has
shown a 7.4 per cent increase since
adoption of the student-focused
funding formula for the 1998 school
year, even as enrolment fell 10.5 per
cent.
The comparable numbers for the
Huron-Perth Catholic District
School Board were a 38.8 per cent
funding increase and 1.2 per cent
enrollment decrease. For the
Bluewater District School Board,
the comparable numbers are 9.5 per
cent growth in funding while
enrolment dropped 13 per cent,
while the Bruce-Grey Catholic
District School board saw a 17.6 per
cent funding increase with a 4.1 per
cent enrolment decrease.
“Phys ed was a nightmare.”
As time passed, there were
reactions to her physical
deterioration. “One of my teachers
thought I had a learning disability.
My writing was horrible and my
speech became very slurred. I didn’t
have the energy to keep up with the
other students.”
Having a slight curvature of the
spine, which was becoming more
pronounced as she got older, Smith
underwent an operation at the age of
11 and assumed “all my troubles
were over.”
Instead, the symptoms seemed to
accelerate. “I got clumsier and
clumsier. I had an idea that
something wasn’t right.”
When the diagnosis of FA was
made, the news was, of course,
devastating for her parents. But
Smith says, it would be a few years
before she became fully aware of
what FA meant.
“At about 17, when I started using
a wheelchair I knew what to
expect.”
The transition was not an easy
one. “I had such a rough time,” she
says of adjusting to life in a
wheelchair.
By the time she was 25 Smith had
developed heart complications. She
had a pacemaker put in four years
ago for her enlarged heart, which,
she believes has given her extra
years. “Since then my heart has been
ticking like normal. I’ve been
feeling well.”
Despite that comment, however,
Smith acknowledges that her
physical body is today, “at the end
stage. Basically I am very weak and
there are probably nerves that are
dying. However, on the inside I
should be falling apart (organs
shutting down), but I’m not. I really
don’t know why it’s not happening.”
The life expectancy for those with
FA is “very individual”, Smith says.
“There is no set rule and there are
now so many things to help such as
vitamins, exercise and medications.”
Those and a healthy attitude.
Despite needing help with virtually
all everyday activities, Smith
doesn’t spend time feeling sorry for
herself. She probably doesn’t have
time. “I like to work on my
computer. I like doing a lot of
research. I love to learn, do graphic
designs and writing has become a
new interest.” She is currently
The government’s funding
formula has brought increased
revenue to every rural board in
Ontario, and the boards of Huron-
Bruce are no exception. To go back
to unequalized funding would mean
a decrease in money for riding
schools.
What the Rozanski report
identified as a problem, and what
Premier Eves responded to with his
announcement in Blyth of $69
million for rural schooling, is how
best to help small or remote or
single school communities where
per pupil costs are extremely high
because of declining enrolment.
This $69 million, of course, is new
funding.
Sincerely,
Helen Johns, MPP Huron-Bruce.
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enrolled in a spiritual writing course.
She also loves to go for walks and
drives. “We have a van so I can go
shopping. I love to shop.”
“My life is just as involved as
anyone’s. It’s just that I focus more
on my emotional and spiritual.”
To help her with the physical,
Smith, through a program called
Direct Funding, has money to hire a
personal home care worker for five
hours a day.
Her home, built in 1994, was
“designed by me, for me.” It has
wide halls, open spaces and a roomy
washroom. There is a roll-in shower
and a lift constructed over the
bathtub.
“The nursing home could have
taken a lot of lessons (on building)
from someone who is actually in a
wheelchair.”
While she has clearly come to
terms with her disease, Smith does
admit to certain frustrations. “I think
I’ve found every set of stairs that’s
around.”
There are buildings in town she
can’t enter such as the library. “And
The Citizen," she smiles.
Also the ramp at the post office is
totally wrong. “It freaks me out. I
am afraid. The ramp is too steep and
when you get to the door it opens
out.”
More personal issues make
outings with the girls or trips to a
mall difficult. “I can’t use the
washrooms in public places if I’m
being accompanied by my husband
or father.” And to ask assistance of a
friend during a night at a bar makes
her uncomfortable. “So, I feel like
I’m missing out on some things.”
This is about all the time given to
negatives however. “Many of my
experiences, although unthinkable to
many, have given me a great
understanding and ability to identify
with circumstances. I am able to
parallel my own experiences with
that of others. I love to share with
everyone; never be afraid to
approach me.”
Though it is life-threatening and
has no cure, Friedreich’s Ataxia
cannot, says Smith, kill her spirit. “I
have decided to invest my skills into
my mind and emotions. No one
wants to spend their life in a
wheelchair but stuff happens.”
Doug Gough,
R.I.B. (ONT.)
CAIB, Manager
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A favourite place
With a love of writing and graphic arts, Shelley spends a
good deal of time at her computer. Despite her disabilities,
she is able to type enabling her to pursue two of her
favourite pastimes. (Bonnie Gropp photo)
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