"Ocular Motor Apraxia mainly affects balance, speech, and general coordination. The most obvious physical symptom of OMA is "head thrusting", or involuntary head movements.
As the body develops, the head thrusting start to become less, and in most (if not all) cases, when the body hits puberty, the head thrusts will disappear. They will, however, return in cases of extreme tiredness or inebriation.Balance and coordination issues will also improve exponentially as the body develops, but these issues will never truly go away.Speech will naturally improve, but may need professional help.My name is Stephen McQuoney, and I created this group so that others with this rare condition can share their experiences and help each other. I'm 29 years old, and I was diagnosed with Ocular Motor Apraxia at age 1. My head thrusting slowed around age 8, and became less and less obvious until around age 13, where it more or less stopped completely. I sometimes move my head involuntarily when I'm tired or inebriated. I only learned to walk at age 3, and then no one could stop me. I learned to read at age 5, and I was the best reader in every class I had. I couldn't ride a bicycle until I was 13. I am a strong swimmer, and I passed my driving test at age 18. I have got several academic qualifications and I also went to university. I am now in a job I love; helping others with autism and learning difficulties.If you're a parent of a child with OMA, it is very easy to feel alone. This group is designed to bring people together to share experiences, give advice, and answer questions. I was diagnosed in 1982 and there was frustratingly little information on this condition. There are now lots of websites and blogs on the Internet dedicated to OMA and similar conditions, as well as books and other media."
Bueno, esto es lo que nos cuenta Stephen, un hombre generoso capaz de compartir con todo el mundo su condición, sin ninguna vergüenza. Stephen ha creado un grupo en Facebook de 156 personas, en el que podemos hablar sobre OMA, o lo que es lo mismo la Apraxia Ocular Motora.
Stephen explica que OMA conlleva problemas de coordinación de movimientos, retraso en el habla y provoca esos movimientos de cabeza que son involuntarios.
Él fue diagnosticado hace 29 años y en aquella época sus padres se sintieron un poco solos y desalentados pues era muy dificil encontrar información. Ahora podemos tener más acceso gracias a internet y a todos los siitos que dan datos sobre OMA. Stephen caminó a los 3 años, leyó a los 5, montó en bici a los 13, es un excelente nadador y fue a la universidad y tiene carnet de conducir. Su vida está plena y es feliz. Pero es cierto que aunque los movimientos de cabeza se puede decir que desaparecen en la adolescencia también pueden reaparecer en situaciones de cansancio o estados alterados. Tampoco hay que olvidar que a veces se necesitan terapias para ayudar a mejorar y sobre todo dar apoyo a nivel emocional.
Espero que entre todos los grupos podamos ayudarnos y esta extraña patología deje de ser desconocida. Gracias Stephen por crear este grupo!!!
Well, this is what Stephen tells us, a generous man able to share with everyone their condition, without any shame. Stephen has created a Facebook group of 156 people,where we can talk about OMA, or what is the same as the Ocular Motor Apraxia.
Stephen explains that OMA leads to problems of coordination of movements, speech delay and causes these involuntaries head movements.He was diagnosed 29 years ago and at that time his parents were a bit lonely and discouraged because it was very difficult to find information about OMA. Now we have more access through the Internet and all webs, sites and blogs to provide data on OMA. Stephen walked at 3 years, read at 5, ride a bike at 13, is an excellent swimmer and went to university and have a driving license. His life is full and happy and hi works helping people with autism. But it is true that although head movements can disappear in adolescence may recur in situations of fatigue and altered states. We don't should forget that sometimes you need therapies as help to improve and especially to support the emotional level.I hope that together we can help people and this strange disease is no longer unknown. Thanks Stephen for creating this group!
Gracias Stephen y Gracias Mery.
ResponderEliminarMery que emocionante que estes en este grupo, yo tomandome mas confianza de la cuenta te pido que cuando entres en facebook OMA te acuerdes de los que te seguimos, yo me siento representada por ti, perdona esta respondabilidad que te doy, pero yo no tengo ni la capacidad, no se ingles ni tiempo, y tampoco lo que mas me gusta de ti tu fuerza. Gracias por estar ahi siempre y por ayudarnos en nuestro camino.
ResponderEliminarMery, qué gran herramienta puede ser facebook, no? A esta altura creo que en el mundo hay mucha más gente solidaria de la que pensábamos!!!
ResponderEliminarTe felicito y te agradezco el apoyo!!! Besotes!
Mery, eso está genial y felicidades a Stephen y mucha suerte con el grupo de Facebook.
ResponderEliminarBesitos :)