In our lives, we have
all experienced barriers that get in the way of accomplishing what
we want or need to achieve. The barrier may be as simple as the
carts in the space at the grocery store you wanted to park in but
couldn’t because somebody was too lazy
to put the cart in the corral. Or, the wheelchair that you use does
not currently have monster truck capabilities and therefore, you are
not able to get from the sidewalk to the bus in the winter due to unplowed
snow. Barriers can get in anyone’s way but rarely are they
debilitating or unsolvable.
Health concerns can create other, more difficult barriers. Everyone
may not have the anguish and challenges of dealing with cancer, HIV/AIDS,
or multiple sclerosis but most people are somewhat familiar with them.
But what about the barriers that are less well-known, barriers that
when I say the word brings a polite and puzzled response?
My hope is to help raise
awareness about a condition that affects the lives of approximately
150,000 Americans. The condition is ataxia and “it’s not a foreign cab” as the National Ataxia
Foundation’s slogan states. The word “ataxia” means “without
order or in coordination.” It is a neurological degenerative
disorder that affects balance, coordination, and speech. Ataxia is
most often a loss of functioning in the cerebellum, which controls
coordination. It can occur at any age.
There are several types
of ataxia. The type of ataxia that I have a connection with and
have had the opportunity to learn the most about is Friedrich’s ataxia. It is the most common and affects almost
50,000 Americans. There are two individuals in my life that I am proud
to know and care about who are affected by this disorder. I will call
these brothers Allen and Rico. Friedrich’s ataxia is hereditary
and neither had any idea that they would be affected by it. Nor had
they even heard of it until their late teens. Researchers indicate
that after symptoms begin to show it may be 15 to 20 years before
a wheelchair is necessary for mobility. However, for the brothers
it was less than that, only 10 years. Both men have utilized wheelchairs
since their late 20s.
University of Minnesota
researchers note that 1 in 100 people may be a carrier of the recessive
gene but only one in 20,000 to 50,000 will have Friedrich’s ataxia. The statistics lead one to believe
that it could not possibly happen twice in one family. These two brothers
are struggling with a disorder that they should not even have—according
to statistics.
Rico began to notice
his first symptom of Friedrich’s ataxia
at football practice, when he felt as though he could not keep his
balance and began to fall a lot. He eventually had to drop out of football.
Other symptoms he began to experience included muscle weakness, unsteady
gait, no reflexes in the legs, scoliosis and slurred or abnormal speech.
Rico said, “Ataxia impacts every aspect of your life. Simple
tasks such as tying your shoes, getting ready in the morning or eating
can be a struggle.” What Allen and Rico’s parents did not
know is that they were both carrying the recessive gene that is necessary
to produce Friedrich’s ataxia. This gene was identified in 1993.
Genetic testing for the disorder is now available thanks to research
conducted at the University of Minnesota. Allen and Rico are courageous
men who have donated time to the University of Minnesota to help researchers
and doctors find a cure or medication. Although there have been many
discoveries made by researchers to attempt to solve the mystery of
Ataxia in the last ten years, there is no cure for Friedrich’s
ataxia or any other form of ataxia.
For the most part people
with Friedrich’s ataxia can live their
lives like anyone else. They work, go to baseball games, get groceries,
get married, have children and go fishing. They just face more barriers
along the way than persons without ataxia. It can be a tremendous
struggle. September 25th is International Ataxia Awareness Day.
Now that you have an idea what ataxia is and how it affects people,
please take time to learn more about it. The National Ataxia Foundation’s
website is an excellent resource and can be visited at www.ataxia.org ![end of story]()
Mike Chevrette is an employment support consultant for Goodwill/Easter
Seals in St. Paul.
