A Balancing Act: Ataxia and Living
Denise
Drake
Donna Guillory
The dictionary offers many definitions of the word “balance.” Perhaps the most commonly used description refers to the harmony and equilibrium that occurs through the synchrony of parts working together with equal force. When parts work together there is evenness and a sense of stability; when they don’t, there is disequilibrium or loss of balance.
The
hereditary ataxias change the way
that the area of the brain controlling
coordination and balance performs.
As a result, these diseases physically
disrupt balance. From information
in the National Ataxia Foundation’s
“Frequently Asked Questions
About Hereditary Ataxia,” the
word “ataxia” comes from
the Greek word ataxis, meaning
“without order” or “incoordination”
(2000). But balance can occur even
when order is disrupted, as long
as something also acts as a counterbalance.
Classification
of Ataxia
Ataxia is a progressive,
degenerative, neurological disorder.
In the years since it was identified,
it has gone through several levels
of classification, from very simple
to very complex. With the discovery
of genes and the progress of genetic
research, classification has become
more sophisticated and more accurate.
Ataxia is classified as either sporadic
or inherited. Sporadic ataxia
is not an inherited condition, and
is a by-product associated with
other medical processes. Inherited
ataxia is passed on through genes
carrying the abnormal disease tendency.
Inherited ataxia may be dominant
or recessive. Dominant ataxia is
passed directly from an affected
parent to his child. If the child
does not inherit the affected gene,
he cannot pass it on to his own
offspring. There is a 50-50 chance
that a child born to a parent with
dominant ataxia will develop ataxia,
as it takes only one abnormal gene
to produce the disease. Recessive
ataxia is passed on from parents
who each carry the recessive gene.
There is a 25% chance that offspring
will receive an abnormal gene from
each parent and thereby have the
disease and pass it on. There is
a 25% chance that an offspring will
receive two normal genes and be
free of the disease. There is a
50% chance that a normal and abnormal
gene will be passed, and the offspring
will not exhibit symptoms but can
pass the disease to their offspring.
Symptoms of
Ataxia
Balance problems
and unsteadiness are the most common
early symptoms of ataxia, and these
usually progress over time until
walking becomes so difficult that
a wheelchair may become necessary
for ambulation. Coordination is
affected with shakiness and
increased difficulty maneuvering
movements of the arms and legs.
Seemingly simple tasks such as holding
a glass of water or a cup of coffee
may become more and more difficult.
Speech becomes thick or slurred,
and there may be swallowing difficulties.
There are often other disorders
that affect those with ataxia, such
as heart disease, diabetes, loss
of hearing, spinal curvature abnormalities,
and high-arched feet. Although these
disorders are possible in those
with ataxia, they are not seen in
everyone affected.
A
Balancing Act
Those affected
by ataxia cannot control losing
their balance physically, but it
is very important that they not
lose it mentally. Personal balance
is far more important than physical
balance. But it’s not always
easy. No one wants to have to deal
with a disabling disease. And there
often seems to be a particular burden
in dealing with a hereditary disease.
No one wants to have to use a wheelchair.
No one wants to need help to do
normal daily activities. No one
wants new odds. Denial, resentment,
and fear are powerful opponents.
It may seem easier to give in to
the negatives. After all, that is
what is expected of you, isn’t
it? The effect of the shortsighted
words and actions of others on your
self-esteem is often the most difficult
thing to balance.
It is not uncommon that disabled individuals get more stares than the average person, and the stares are often not rooted in kindness. Comments made out of ignorance or callousness still hurt. And even when the stares are not unkind, the scrutiny tends to place more marks in your personal "minus" column than in your "plus". It takes personal time to weed the ugly people from your life, and many are too preoccupied with what has happened to them to be able to do that. It is easier to retreat into the safety of a closed world where no one has to know that something is wrong with you. It may be easier to let others think that your slurred speech and staggering are the result of drugs or alcohol, or it may be easier to justify these indulgences because it hides your handicap. Fear can breed isolation, but detachment creates a loss of self. And suddenly, you truly lose your balance.
You must know and respect your limitations but not allow them to keep you from putting forth your best effort. The choice to accept the freedom to live to the best of your ability is much more powerful than constantly embracing your limitations or other’s expectations. Yes, there are certain inevitable changes that must be faced. Certain activities may become impossible to do safely, but many other activities can be adapted to an individual’s capability. There are always choices to be made, but they need not revolve around expectations. A disability does not define a person. Only the person can do that. Constantly questioning the “whys” can interfere with the time that can be better used to appreciate those things around you, those things that give you enjoyment, those things that help you to live to the best of your personal ability. One must find what they are capable of – what works for them. What works for one person may not work for another without adaptation. Adaptability is the key to balance.
Hereditary
Healing Through Helping Hands
Although the
Acadian population of Louisiana
has shown a higher than normal incidence
of hereditary ataxias, these diseases
are not exclusive to this population.
The record keeping that took place
within this isolated populace allowed
medical researchers to effectively
chart family histories and note
hereditary tendencies within extended
families. The data compiled in the
last decade, as a result of this
population’s thorough genealogical
research, illustrates the important
findings that can emerge from knowing
as much as you can about a disorder
and about those that have been affected
by it.
One of the greatest support mechanisms to those affected by hereditary ataxia emerges as a result of the awareness generated through patient health and education services like “Genetics of the Acadian People” forums. Open to the public and free to all who care to participate, this event presents the latest information in medical research and treatment. It provides access to physicians and other professionals dedicated to increasing educational information and offers “break-out” sessions designed to answer questions in specific topics areas, ranging from medical ethics issues to diet management. It puts a sharing process into motion. Professionals share their expertise and the latest information with their audience, and audience members share their personal experiences. There is a real sense of family fostered by the amount of caring and sharing that goes on at these events. And the sharing and caring allows healing.
How to Learn
More
For more information contact the
National Ataxia Foundation (NAF)
at (763) 553-0020, or visit their
website: http://www.ataxia.org
or visit the LA Chapter NAF website
at: http://www.angelfire.com/la/ataxiachapter/index.html
Contact the
Author
Denise Drake
Email: dd3@prodigy.net
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