Orin Douglas
At the risk of stating the obvious, my Ataxia with Oculomotor Apraxia type 2 is not that easy to live with, and I am going to try to give you some examples. I think I will start with trying to explain the mechanics of what is going on and then I will give you some instances of how it affects my daily life. I can also try to give a little bit of advice.
So what is Ataxia with Oculomotor Apraxia type 2? It is a rare condition that affects muscle control and coordination and is often diagnosed between the ages of 7 to 25. Most people with this condition also have difficulty moving their eyes side-to-side, so they have to turn their heads to see things in their side (peripheral) vision. This condition causes your cerebellum to shrink. The cerebellum is the part of the brain that controls both the movement of the body and the balance.
My condition is genetic, which means that it is in my DNA or genes which I got from my parents. The parents of people with Ataxia with Oculomotor Apraxia each carry one copy of the mutated gene. So, in case you’re wondering, I did not get hit on the head, I was born with this condition. One question I am often asked about this condition is if it affects other parts of my brain. The answer is no, it does not affect the other parts of my brain that controls my ability to think or my memory, or anything like that. It just affects my cerebellum and my motor skills.
I struggle daily with things that most people take for granted. One instance that I am unfortunately reminded of everyday is that it drastically impedes my writing. My writing is not only illegible, it also requires a great deal of concentration on my part. Therefore I type everything when possible. But, even typing is not easy for me to do..
The area that Ataxia mainly affects is my balance. Just think about your own life and all the things that you use your balance for; walking, running, riding a bike, standing on a foot, doing exercises, ect. I cannot walk in a straight line and therefore bump into lots of things. Also many of the activities that I chose to do require balance in some capacity. A couple of these activities include biking and lots of mechanical activities. As for biking, keeping the bike rubber side down often requires much swerving and change of position on my part in order to keep my balance resulting in an odd-looking and sometimes not so in control ride. Oftentimes the mechanical activities I choose to do require getting on the floor and under a vehicle and lots of up and down. This also is not so easy for me as it requires a constant change of my center of gravity. As well obstacles and changes in direction. I do go to a physical therapist to help me keep the amount of my balance that I do have at this point.
This condition also affects my eyes and my ability to track objects. An example of this would be, if you threw a football to me, I probably would not be able to catch it. Also I do not drive on public roads as that would probably be unsafe for both me and others.Which means the probability of me ever getting my driver’s license is pretty slim. Your eyes and eye movement are a very big part of your balance whether you realize it or not. The fact that my eyes cannot track well is one reason why my balance is off.
What am I doing to cope with Ataxia with oculomotor apraxia? I am already doing very well for an individual with this condition, so that is encouraging. I continue to go to physical therapy as I want to maintain as much balance as I can. I don’t let my condition define who I am. I am very active in my church and our church youth group. I spend half of my day at Yakima Valley Technical Skills Center in the automotive technical program and will be graduating high school in June of 2022. I have applied and been accepted to Perry Technical Institute for the fall of 2022.
Someday I may eventually have to walk with a cane or end up in a wheelchair. I really do not want that to happen, but if it does, I want to delay it for as long as possible. I think that staying active is one of the most important things that I can do, so that is why I try to be as active and involved as possible.
One of the interesting things about my condition is that I can’t remember not having balance issues so I have nothing to compare it to. I think this has been a benefit for me. It helps me not to be as disappointed knowing what life might have been like without the issues of Ataxia with Oculomotor Apraxia.
I would say the most important things for anyone with this condition are to stay active as much as possible, try everything even if you don’t know if you can do it and don’t worry about embarrassing yourself. This is the only life we have got and disability or not, you need to make the best of it. Also, you will never know what you can or cannot do if you never try. I am not saying go through life being as reckless as possible but try anything that is reasonable. Go ahead and give it a shot!
