Does anybody have experience caring for OPCA patients?

I am volunteering my time at a LTC facility while I wait to hear word on my job situation. I'm gaining valuable experience and I love it !
One of my assigned residents has hereditary olivopontocerebeller atrophy of the familial type. A terrible degenerative brain disease.
He is wheelchair bound...needs help eating but can still swallow...can't talk...makes strange movements and is cognitively intact.

He has no family...no kids..no one visits him. The staff has no time to spend with him so they plunk him down in front of the tv and leave him there. He was math proffesor and likes music. Now he can be very difficult sometimes refusing care and stuff like that but I would really like to help him.

Yesterday he left the room for the first time in 7 years by himself so I think maybe he's making an effort. I was so happy

Can anyone share their OPCA experiences with me so I can learn a little more about it ? Thanks.

Z

I am volunteering my time at a LTC facility while I wait to hear word on my job situation. I'm gaining valuable experience and I love it !
One of my assigned residents has hereditary olivopontocerebeller atrophy of the familial type. A terrible degenerative brain disease.
He is wheelchair bound...needs help eating but can still swallow...can't talk...makes strange movements and is cognitively intact.

He has no family...no kids..no one visits him. The staff has no time to spend with him so they plunk him down in front of the tv and leave him there. He was math proffesor and likes music. Now he can be very difficult sometimes refusing care and stuff like that but I would really like to help him.

Yesterday he left the room for the first time in 7 years by himself so I think maybe he's making an effort. I was so happy

Can anyone share their OPCA experiences with me so I can learn a little more about it ? Thanks.

Z