A refresher if one is needed.
CAPOS syndrome has five distinctive parts; Cerebellar ataxia, Areflexia, Pes cavus, Optic atrophy, and Sensorineural hearing loss.
Each part has its own implications:
Cerebellar ataxia makes it hard to stand still, I fall over often and balance is severely impaired. Coordination is impaired as well, I have a “jerky” gait and may appear to be “drunk”. Ataxia also means difficult swallowing and speaking. I cough a lot when eating and mumble when speaking.
Areflexia means I have zero reflexes.
Pes cavus is the easiest to explain, yet causes the most problems. It is high arches in feet. For me, this truly impedes my walking and balance because my feet do not, cannot, support my full weight.
So the Pes Cavus superimposes the Cerebella Ataxia.
Optic atrophy means that my vision is getting worse. This, coupled with the areflexia, means that I am almost always dropping something and can walk into doors and other things because I cannot see in 3D.
And, I am profoundly deaf, due to the sensory neural hearing loss.
With CAPOS, I am unable to work, I surely want to!
Yet, I do not sit on my butt all day, whining about this and that… I am a househusband, and do the domestic warrior thing everyday.
My son is also diagnosed with CAPOS, and I want him to be as productive as possible!