When my husband was first diagnosed with PD 16 years ago, I was having a
very hard time dealing with the loss of expression in his face and body
language. To me as a trained observer of body language, this meant he wasn't
interested and was bored. When I read Sidney Dorros' book and realized that
this was only the PD mask, I learned to listen only to the words he said, and
this worked for many years until he became unable to say the words in such a
way that I could understand him. He tended to go silent rather than to try,
and I, frustrated, tended not to talk with him much any more. Since he has
been taking Aricept, his ability to speak clearly has returned along with
some facial expression . He tells me now how frustrating it is not to be
able to talk to the people he's talked to all his life(he was an trial
attorney and a judge). I notice that others besides his family are talking to
him more now that they can get a response again. What a lonely feeling it
must be not to be able to say the things you want to and to have people avoid
you because they think you don't understand. I know that I as a caregiver
felt very lonely in his presence when he could not communicate. Also, I, and
others tended to talk for him and about him in his presence. Now he stops us
and I realize that this too must really frustrate PWP. I know that our
success with Aricept is the exception rather than the rule for PWP, but the
fact that it has been so helpful to Ken has made it possible for him to let
us all know that he was really with us even when he seemed so far away. I
imagine this is true of all of you. God bless you all.
Barbara Smith,CG/Ken?69/16
