I thought the Wall Street Journal did a good job.  I wasn't happy with Dr.
RatFink's comment re the "testimonials."  I know some of the patients and
frankly some were real PD messes.  Poor young  minister Don Berns was pretty
lit up about his pallidotomy and I can understand.  No one knows how it feels
to be so terribly stiff and tight one minute and totally free of that feeling
one second later.  Nor what it is like to tremble constantly and  all of a
sudden it all stops.  Don was pretty bad.  He was a prisoner in his own body.
 Now he is free.  Nobody knows for how long but its been a year of glorious
freedom for him and RatFink shouldn't diminish this with his snide remarks
about snake oil.
 
I had a friend in Toronto - 50 y.o.  He was very disabled by PD.  His young
wife looked after him for years and finally just flipped.  She left with the
children.  He was moved into a group home as he couldn't survive on his own -
he pushed a wheeled walker around when he was ON - most of the time he was
OFF and stiff, or too ON and dyskinetic.  What do you think he would have
done if pallidotomy had been an option then?  Even if he could expect only a
few months of comfort?  Just  to be able to walk to the bathroom again.  He
crawled on his hands and knees.  He died three years ago.
 
My friend in Nova Scotia is in her early 50's.  She is an artist and a
writer.  She has two teenaged sons.   She got PD before the second son was
born.   She was a real mover and shaker in regards getting the fetal implant
programme started in Nova Scotia.  Fought the right to lifers like a tiger.
 Started a support group, ran it, and put out a newsletter.  She has had PD
too long and she is tired.  She wants a pallidotomy.  She wants Dr. Iacono to
do it.  She can't afford it.    She has PD bad - stiff, dyskinesia -
sometimes even akinesia - I can barely understand when she talks.  If she can
get a pallidotomy and she gets some relief and she puts an enthusiastic
message on the network, I will kill anyone who says "snake oil" or "bandaid."
 
I've worked up a full head of steam here so I'll continue.  About Dr. Robert
Iacono.  A group of us, all with PD, flew to Arizona years ago.  We wanted to
meet this maverick who was flying to China with patients to do fetal
implants.  We practically moved in with him and his two dogs.  Max Truex, the
well known runner, did stay with him - after all Max was the first patient
Dr. Iacono did an implant on.  One of our group was Michel Monnot who also
lived in Tucson at the time.  We all ate together at Bob's house or he took
us someplace - a memorable meal with a friend neurologist - Apple pie at
Janice and Michel Monnot's house - special resturants - a cocktail party with
some local parkinsonians and doctors.  Bob never stopped talking.  After a
week we were all experts on the brain and stereotactic surgery equipment and
brain operations and pros and cons of fetal implants.
 
Dr. Iacono is different.  He was a successful neurosurgeon.  Went to all the
best schools.  Got interested in PD because his father,  who was a college
track coach, wanted him to help a young runner who had PD.  Max Truex.
 
I got to know Max and his family.  One son is here at Dartmouth.  They love
Bob Iacono.  He is kind, sweet, just dotes on his patients, becomes a close
friend, talks  to them, listens to them.  He doesn't give a damn about the
names some doctors call him.  His only interest is to be there for his
patients and do an excellent job giving them some relief.  Even before his
interest in PD he ran a pain clinic as well as doing surgery.  He is
indefatigable.
 
So I take exception to reading that Robert Feldman a neurologist at BU said
"I wouldn't refer a patient to Iacono."  (Dr.F. I have referred my last
parkinsonian to you).  My Dr. Laitinen trained Bob (and many others) and told
me that Bob is an excellent neurosurgeon and recommends him highly.
 
So that's how I feel folks and frankly if it wern't for this lousy RLS I'd
have had the second pallidotomy  by now.  I can't stand the leg shocks which
are continuous if I don't take Sinemet - and  you have to stop taking meds
the day before the procedure.  I can't do that.  It is just too awful.
 
Barbara Yacos, RN
<[log in to unmask]>