Dear Franca--your father seems to me to be "his own worst enemy" in his
refusal to take any PD meds. It must be a great worry to your mother and you
to see him in such bad shape. While it is true that many who DO use meds have
similar problems, and that the meds are not a CURE, they do provide a better
quality of life for the PArkinsonian AND for the caregiver while they are
effective. Then, too, every patient is different with this "designer disease"
andyou are right that he doesn't know how he might do if he HAD taken them.
(A single Sinemet is hardly a fair trial.) It seems that he is delusional
at times, and as you say, paranoid--this is terrible for him and for your
mother. If you've been on the list for a while, you have perhaps read about
meds such as Clozaril, which can relieve the hallucinations,if one will
use them. How can your mother survive having to get up with him 10 times
a night? Her own health may be at risk, and if he is rational enough at times
to realize this, it might motivate him to give the meds a fair trial--for HER
sake, if not for his own. I wonder whether he would feel the same way about
insulin if he had diabetes? It must be hard for him to see himself as needing
meds after a lifetime of such superb health--perhaps it seems like a failure
to him? You will certainly understand his thinking better than we can here-
but there is the concern about your mother's survival too, and I suspect you
may have some doubts yourself, or you wouldn't have written. It isn't clear
how much of the time he is rational, and might be able to respond to a rational
discussion of what the future holds for him and for her. I hope you don't
take offense at what I have said, for I write out of concern for the whole
family; all of you in a sense "have Parkinsons" and suffer the results of his
refusal to help himself. Please stay in touch and let us know how things
go in the future.
Camilla Flintermann,CG for Peter,78/6+ Oxford,OH
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