David
My 1st neuro, the one who diagnosed me, could not be bothered to fill out my
disability forms which were ridiculous but essential to my getting $144/mo
(cut by 60% due to teacher's pension) 8 years later I still only get $144/mo
SSD.  I'm not complaining though because the year 2003 I had my DBSs
Medicare & Blue Cross PPO paid.  Also, my neurosurgeon was super.
My 2rd neurologist used to keep people waiting 3-4 hours while young girls
went in and out the inner sanctum.  I suspected some of the patients had
been there from the day before as there were bodies in the hall outside the
office.  I walked out after making my co-pay one time.   He was arrogant,
controlling and a real med-pusher.  My 3rd  neuro was real funny, head of
the hospital staff, but the last I  heard was up on rape charges by an MS
patient.   I think he was innocent though. Very funny guy.  Shall I go on or
have you had enough?

You don't always have a choice of MDSs or neuros either.

David, those of us who live in the real world are at a distinct
disadvantage.  We are naked except for our senses of  humor.
Ray
----- Original Message -----
From: "DAVID LEWIN" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, May 06, 2006 11:00 AM
Subject: Re: Diagnosis


> Dear Mary Ann,
> I wish I could report that my personal experiences with doctors were like
> the Norman Rockwell portrait physicians that you have known.  I was
> diagnosed with PD by a doctor I was seeing for the very first time with my
> complaint being that I was experiencing some stiffness in the tendon of my
> left heal.  After suddenly enfolding me in his arms (he smelled bad) and
> knocking me over (was he crossing some line here?), he bluntly announced
> that he thought it was parkinson's disease.  He suggested I get an MRI and
> see a neurologist.  I left his office in a state of shock and homophobia.
> Only later did I learn that the purpose of the MRI was to rule out a brain
> tumor.  Fortunately, the stress that I experienced from the visit
> exacerbated my symptoms so that by the time I had the MRI and saw a
> neurologist, the neurologist was readily able to confirm the diagnosis.
> However, far from being the warm-hearted, compassionate physician that you
> have known, this man made me realize what an insect must experience while
> being examined by a scientist through a microscope.  He sat in a very
> expensive powder blue suit behind his desk which was festooned with golf
> knick-knacks.  Was it my imagination that he had a small wooden sign on
> his
> wall that playfully read, "I'd rather be golfing!"  He studied me in a
> remote but vaguely curious look, as if he had played out this scene so
> many
> times before, telling a seemingly healthy person that they had an
> incurable,
> progressive disease, and wondering what defensive measures I would employ
> in
> my attempt to cope with the bad news.  He offered no information.  He
> dryly
> asked me if I had any questions.  I had little framework to formulate and
> hang a  question upon, knowing so little about parkinson's disease.  I
> stuttered, "Will it effect any of the other organs of my body?" to which
> he
> answered, "No."  We sat in silence, I feeling guilty that I was holding up
> a
> foursome on the 1st tee at the Westchester Country Club.
>
> I realized that I had not been medically well served, so I went to another
> neurologist.  I have a problem when it comes to social situations.  When
> people learn that I am a psychologist, they immediately think that I am
> analyzing them and get very weird, or they take the opportunity to
> unburdon
> themselves and tell me their problems.  So, I was not completelly
> surprised
> that interlaced with this new neuroligist's routine examine: close your
> eyes, finger to nose, stand on your toes, hop on one foot, toe tap,... he
> filled me in on his marital problems.  "Tap your left foot.  My wife is
> ruining me with her credit card spending.  Tap your right foot.  She's
> spent
> $50,000 on one card alone.  Close your eyes and touch your nose with your
> right forefinger.  I'll never be able to retire.  This can't go on.  Now
> touch your nose with your left finger.  Do you think that's fair?  What is
> the matter with her?  Walk up and down. Your walking is good.  Now she
> wants
> to redecorate the house!"
>
> I gave him what verbal support I could muster and as I left he filled my
> arms with samples of Comtan, Requip, and Permax.
>
> The third neurologist I saw was like the first, although evidently, he
> didn't golf.  However, he looked quite depressed.  He didn't talk much,
> but
> just sat there looking at me ruefully.  As I described my symptoms to him,
> he punched the keys on what looked like a little hand held calculator.  He
> assured me that I could take up to 17 tablets of sinemet without harm. He
> dutifuly filled out the disability form from my insurance company.   At
> the
> end of our session, he announced that this was our last session since he
> had
> decided to devote his practice exclusively to stroke victims.  Had I said
> too much?
>
> I decided to go back to the neurologist with the marital problems.  At
> least
> he talked! Here and there I hoped to get a word in edge-wise about my
> condition.  But alas, it was not to be.   It was one of his off days.
> There
> I learned that he was very angry at the Republican party, particularly
> John
> McCain.  He was shouting so loudly that when I went out into the waiting
> room everyone looked at me as if I was a very difficult and dangerous
> patient.  What had I said to the doctor to upset him so?  But at least I
> had
> a fistful of Sinemet prescriptions!
>
> Since then I have been called out of the blue by a cheerful neurologist
> offering me Deep Brain Stimulation surgery, and did I want to come in for
> a
> workup?  It only involved a hundred miles of traveling and a $100,000.  I
> said I'd think it over, not wishing to be rude.  He assured me it's the
> latest, greatest thing, as I hung up the phone.
>
> So, right now I am between doctors.  Actually, I'm between wives since my
> wife invited her twenty year Arab old boyfriend to have Thanksgiving with
> me
> and the kids.  Now there would be a Norman Rockwell painting!
>
> Regards, David
>
>
>
>
>>From: Mary Ann Ryan <[log in to unmask]>
>>Reply-To: Parkinson's Information Exchange Network
>><[log in to unmask]>
>>To: [log in to unmask]
>>Subject: Re: Diagnosis
>>Date: Fri, 5 May 2006 08:53:29 -0400
>>
>>David, thank you for your very well written expression of how the patient
>>and family view Parkinson's Disease.  I would disagree with the
>>'Albatross'
>>reference.  My husband is hardly that - even though he is severely
>>impaired
>>now, he is a treasured member of our family.  Our little three year old
>>grandson considers him especially precious.
>>
>>I have been with doctors many times when the diagnosis has been given and
>>explained.  The wide majority of physicians care deeply about their
>>patients
>>and are empathetic when identifying a disease process (whatever it may be)
>>and it's effects.  Most of the time I have been a witness to such
>>communication, the physician has asked me to come into the room so that
>>when
>>they leave, the patient will be able to ask the questions the shock of the
>>diagnosis silences.
>>
>>In my experience, patients deal far better with  symptoms if they know the
>>cause.  Regardless of how the members of this list view PD, most people
>>who
>>receive the diagnosis are told about treatment options (hope) not the
>>long,
>>arduous journey ahead.  As we all know, everyone's PD path is different -
>>some progress only slightly while others crash and burn quickly.  It is
>>best
>>for the patient to be allowed to hope.  No one knows what the outcome will
>>eventually be, certainly not the doctor.
>>
>>I'm curious as to why a neurologist would be reluctant to tell a patient
>>that the diagnosis is PD.  In my experience, that is one of the more
>>benign
>>diseases a neurologist deals with.  What would this doctor, who wrote PD
>>on
>>a piece of paper, do if he had to tell a patient that they had a terminal
>>brain tumor - or ALS.  I shiver to think.  The guy should be fired.  I'd
>>find another neuro in a heart beat.
>>----------
>>God bless
>>Mary Ann (CG Jamie 66/26 with PD)
>>
>>  I don't know how doctors do it.  Parkinson's disease is not
>>>the worst disease.  It gives you time to adjust to your gradual
>>>limitations.
>>>  But I wouldn't want to tell someone they have Parkinson's disease.  I
>>>wouldn't know how.  There's the respect that takes all the fun out of
>>>playing doctor.
>>>
>>>David
>>>
>>>>Maybe patients should submit suggestions on ways to break bad news ?
>>>>
>>>>My neurologist left the wwritten diagnosis in front of me and sneaked
>>>>out
>>>>the
>>>>room "to answer the phone"  - but I'd guessed anyway.
>>>>
>>
>>
>>
>>--
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>>
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