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
Mike Chevrette is an employment support consultant for Goodwill/Easter Seals in St. Paul.