GOOD MORNING! THE BEST OF LUCK TO ALL OF YOU! This is my first day on this
PD service, I have spent most of the morning reading your messages. My
father is 75 years old and has had PD for 15 years. He is considered to be
in stage 1 of its progression. He has tremor predominately on the left side
which is becoming increasingly unresponsive to medication. During the past
year he has expressed interest in surgical management of his tremor. I have
found myself in the position of being my father's medical advocate. A year
long search for advice has been met with numerous medical disclaimers,
unkept commitments and a seemingly lack of concern for my father as a whole
person. My father has never had a complete physical or psychological
evaluation of his condition. The only symptom of PD that has been addressed
is his tremor. I have observed problems with depression, confusion,
drooling, speech, insomnia and hallucinatiions. When I tried to discuss my
concerns with his doctor she quickly dismissed them as if they were invalid.
When I left the doctor's office I felt as if we had been deserted. My goal
is to help my father make an educated decision, not an emotional one and to
ensure that he is supported emotionally and physically while undergoing any
type of treatment. PLEASE contact me if you have advice on the following
items. THANK YOU!
1. A personal experience with Thalamotomy (physical/emotional).
2. A personal experience with Deep Brain Stimulation (physical/emotional).
3. Recommendation of a neurologist who builds strong patient-doctor
relationships and is willing to provide guidance. California if possible.
4. Opinions of going out of state for help or surgery. We are considering
Dr. Patrick Kelly in New York or Dr. William Koller in Kansas.
In a recent article by Dr. Kelly I was impressed when he advised patients
considering surgery "to look for the artist". I see a fine line between an
artist and a craftsman. Craftsmen get to the fine line and don't go above
it. To be an artist you must get to that fine line as a craftsman-and then
you must go above it. My hope is to put my father in the hands of a doctor
who is an "artist" as a surgeon and a person. I do not want him to be a
statistic in a research project. Thank you for reading this long message.
Vernice [log in to unmask]
