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Dear Bill Isbell and Craig Mellinger,

I was most interested in the communication problems you are experiencing.

A major initial indication that something was amiss in the case of my husband
(from my vantage point as a special education teacher) was lack of fluency.  I
had noticed what sounded to me for all the world like stuttering, but it was a
bit different than stuttering beginning in childhood in that he did not seem
to "block" in any consistent way.  A person who begins to stutter in childhood
may block on initial vowel sounds, for instance, and will begin to accomodate
by avoiding words that begin with vowels and substituting appropriate
synonyms.  This coping mechanism was missing.  I could tell that he was
unaware of his lack of fluency. I began to really worry one night when he
repeated the same word 13 times.  I had counted.  I had never brought this to
his attention because he appeared to be experiencing quite a bit of stress in
general and I did not wish to make it worse.  Finally, that night, I asked if
he was aware that he was stuttering.  The stutter had a quality of being
difficult to initiate what it was that he wanted to say.  He was caught off
guard by my observation, but thought that it was stress, too, so we let it
drop.

I had also observed along the way that his voice was getting higher and had a
forced quality.  He was never a deep deep bass, but I would always have said
that he had a deep voice.  He had also had difficulty swallowing for a number
of years and his face was becoming stony, which I sometimes misread as anger.
At one point, because he did a great deal of on-camera closed circuit
television work and video production as well as other public speaking, he had
sought the help of a consultant (Peter Jennings' voice coach) to help increase
his effectiveness and the man had remarked about his expressionless face and
had tried to give him ways to improve, but to no avail.

Finally, in desperation, I begged him to see a physician because I just knew
something awful neurologically was happening.  This was 3 months before he was
diagnosed and what finally took him to a neurologist was that his left hand
had gone numb and he was also having difficulty in getting his coats and
jackets on and off.

He was diagnosed in January, 1997. He was age 55.  At the absolute pinnacle of
his career, he left to go on what will probably eventually work into a medical
retirement in July of this year.  At that point, voice messages which would
have taken him 4 minutes to create were taking 20 minutes each because he had
to stop and start over so many times.  He was being asked to repeat what he
had said because no one could hear him.  He had stopped all public speaking.
He was having difficulty initiating and executing oral communication.  He
could not dictate letters to his secretary, nor could he type them in a timely
fashion.  He was working 20 hours a day and falling asleep in meetings and on
the telephone.  He had developed some tremor and was very stiff.  He had also
developed aphasia and was having difficulty organizing himself.  Sinemet and
Permax have been of little help in terms of improving his situation, altho he
is worse w/o them.  He is working with a speech pathologist, but that has not
proved to be particularly fruitful, altho I would certainly give him an A for
effort.  Art appears to have the greatest difficulty when he is trying to
anticipate what it is he is going to say next, when he's having to think on
his feet, which was his great strength.  There are times when he has no
difficulty at all.  While stress does increase the problem, he has it even in
a supportive home environment.

This is Art's story, but, if I've learned anything, it is that PD is an
extremely individual thing.  It has been called a "designer disease" on this
list because of the fact that while one medication works for one person, it
will not work for another and because symptoms differ so from one person to
another.  I've met people who've had PD for 15 years w/o it having progressed
(one woman with PD who is teaching Yoga after having been diagnosed 35 years
ago) and others who were only recently diagnosed but whose symptoms progressed
rather rapidly.  No one can answer has fast PD is likely to progress in
anyone.

You might find perusing the archives helpful.  Here's the address:

http://www.ionet.net/~jcott/homepage/archive/patp.html

Best wishes,
Barb Brock, 53, cg Art 56, 1.75 years