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Insomnia just woke me up,  It is crazy how it can wake you from a sound =
sleep.  What is really crazy,  is how my first 8 years of wrestling with =
pd was done in a psych.'s office, sometimes in-patient, most of the time =
out-patient..  At the age of 20 strange symptoms of left shoulder pain, =
tremor in left arm, unbalancedness, masked expression, panic attacks, =
body taking on 70 yr old shuffle step  brought about a diagnosis of =
"psychologically induced symptoms brought on to avoid facing life."  In =
other words if I wasn't happy with what was going on in my life I would =
manifest symptoms to keep from having to deal with unhappy issues of =
life.  At the age of 21 I endured the agony of 3 months worth of a =
psychiatric ward.  Where a neuro who thought by being rude and blunt =
while examining me would "snap me out of behavior", allowed my tremor =
ravaged body to slip into the floor,  saying "There is nothing wrong  =
with you physically".  He left me to lay,  finding within myself the =
strength to crawl out of the floor and back into my bed,  praying and =
asking God for the strength to help me and my out family of this  =
nightmare.  Eventually I was released.  With huge bill in hand.  Only to =
find a general practitioner who after seeing me for bronchitis asked the =
question,  "Saandra do you think your other symptoms could be something =
nuerological?"   Having an article on Pd in my purse I passed it to him =
with tears in my eyes, saying ,"Yes Parkinson's disease."  This =
compassionate doctor held me while I cried.  I was then, after an eight =
year long struggle,  properly diagnosed by two nueros as have =
young-onset parkinson's disease, being in my eight year of coping with =
the disease.

    As far as the quack psych, well, I left him standing in his own =
office lobby, with a copy of my large, very large bill in his hand, =
telling him it would go unpaid for the injustice that was dealt to me.

    Now in my 19th year of being a parky there is no bitterness.  I =
somehow by the grace of God turned my anger into positive fuel power to =
search and find the best medical therapy for the illness.  The only =
outrage I now experience is when I hear of a fellow young parky =
struggling with the same nightmare.  I will try to unite, offer =
encouragement and anything else I can to help.   The possible thought of =
us losing our didgnity, as so many already have ,  is enough to get my =
dander up.

    Climbing back down off my soap box, feeling lighter than when I =
first climbed up on it.  Sandra=20
-----Original Message-----
From: doublea <[log in to unmask]
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Date: Monday, January 25, 1999 2:09 AM
Subject: Re: Misdiagnosis


>I've included parts of Jim's original message with this so you will =
know
>what I'm referring to.  I've been gone for 5 days, and had over 200
>messages, so I don't think there is any reason to be concerned with too =
many
>people dropping out re: the web.  I have known for at least 6 yrs there =
was
>something wrong with my body.  I break and train horses and balance is
>critical.  I agree with Jim - I had over 16 MRIs, and have seen 9
>neurologist, 4 neurosurgeons, and I don't know how many blood tests and
>other specialists.  Both drs who finally confirmed pd did so without
>knowledge of previous tests.  No one should have to go bankrupt and =
suffer
>for that long simply because they are "too young to have pd".  Sorry to
>gripe, its late & I'm tired but this really struck a nerve
>Bob  [log in to unmask]
>-----Original Message-----
>From: Jim Slattery <[log in to unmask]>
>To: Multiple recipients of list PARKINSN =
<[log in to unmask]>
>Date: Sunday, January 24, 1999 6:33 PM
>Subject: Re: Misdiagnosis
>
>
>>Hi Jennifer,
>>
>>>what is the problem with
>>>the medical community that they seem to completely overlook PD as a
>>>possibility, especially in younger patients?
>>
>>In our research (report to be launched 9th February 1999) we =
identified a
>>great ignorance of PD, its symptoms, and its effects, among all health
>>professionals, whether specialist neurologists, general practitioners,
>>pharmacists, dentists, nurses, physiotherapists, etc., etc.
>>
>>Perhaps the main reason for this may be identified from a study
>commissioned
>>by the Australian Government from the Australian Science and =
Technology
>>Council.
>>
>>The report, entitled "Management of neuro-degenerative disorders in =
older
>>people 2010", says in part, "The study found that there is grossly
>>inadequate education and training in the areas of gerontology and =
aging in
>>university medical schools.  This has resulted in medical =
practitioners
>>having poor skills for the management of NDDs (neuro-degenerative
>disorders)
>>in older people".
>>
>>So true, but notice that even the writers of this report fell into the =
trap
>>of identifying NDDs, which include Parkinson's Disease, as being only
>>disorders of OLDER people! I might point out here that the term "older
>>people" in medical research-speak usually means those aged 70 and =
over!
>>(Perhaps because many researchers are themselves aged 60-70?  <grin> )
>>
>>The eventual diagnosis of my own condition was complicated by the fact =
that
>>I had had a bad motor accident shortly before I began noticing =
symptoms of
>>PD.
>>I was pursuing an insurance claim, which, before it was settled, =
resulted
>in
>>me being referred by one side or the other in the claim to =
TWENTY-SEVEN
>>different doctors, NONE of whom suspected, or even hinted at PD.
>>
>>Most seemed to favour a psychological or psychiatric disorder. As for =
that,
>>a paper by Lang AE et al, (Department of Medicine (Neurology), =
University
>of
>>Toronto, Ontario, Arch. Neurol. 1995 Aug;52(8):802-10, states that
>>Parkinson-like symptomology resulting from a primary psychiatric =
disorder
>is
>>a very rare event, if seen at all.  Much more common is psychiatric
>disorder
>>symptomology  masking underlying PD.
>>
>>I was 44 at the time, and I think that this is a large part of the
>problem -
>>most health professionals taught before, say, 1990 (and many -most?-
>since),
>>were taught, in the wording of a popular medical text, that =
Parkinson's is
>"
>>a  disease of the sixth decade", in other words, of people 60 and =
over.
>>
>>Yet there is much recent evidence, scientifically researched and =
published
>>in major journals such as the "New England Journal of Medicine", =
stating
>>that onset before the age of 30 is decidedly rare, but thereafter, =
both
>>incidence and prevalence of PD rise with increasing age.
>>
>>Within any given studied population, as many as 10% of patients admit =
to an
>>onset before the age of 40, and a further 20% develop symptoms of the
>>disease before the age of 50. The mean age of onset is still in the
>mid-50s,
>>with approximately 40% developing the disease between the ages of 50 =
and
>60,
>>whilst the remaining 30% experience onset over the age of 60.
>>
>>In other words, the popular view is the opposite of the truth!
>>
>>It will not be until doctors and para-medical health professionals are
>>educated to the fact that PD is common under 50, that this situation =
will
>>change.
>>
>>Part of our ongoing commitment to our project will see kits produced =
for a
>>number of health specialities, explaining the complexities of PD =
treatment
>>and management, and pointing out that young-onset PD is an increasing
>>incidence.
>>
>>Jim
>>
>>+---------------------+
>>|     Jim Slattery    |
>>|   [log in to unmask]   |
>>|---------------------|
>>|      Webmaster      |
>>| Central West PD Web |
>>| [log in to unmask] |
>>+---------------------+
>>

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<DIV><FONT color=3D#000000 face=3D"Calisto MT" size=3D2>Insomnia just =
woke me=20
up,&nbsp; It is crazy how it can wake you from a sound sleep.&nbsp; What =
is=20
really crazy,&nbsp; is how my first 8 years of wrestling with pd was =
done in a=20
psych.'s office, sometimes in-patient, most of the time =
out-patient..&nbsp; At=20
the age of 20 strange symptoms of left shoulder pain, tremor in left =
arm,=20
unbalancedness, masked expression, panic attacks, body taking on 70 yr =
old=20
shuffle step&nbsp; brought about a diagnosis of &quot;psychologically =
induced=20
symptoms brought on to avoid facing life.&quot;&nbsp; In other words if =
I wasn't=20
happy with what was going on in my life I would manifest symptoms to =
keep from=20
having to deal with unhappy issues of life.&nbsp; At the age of 21 I =
endured the=20
agony of 3 months worth of a psychiatric ward.&nbsp; Where a neuro who =
thought=20
by being rude and blunt while examining me would &quot;snap me out of=20
behavior&quot;, allowed my tremor ravaged body to slip into the =
floor,&nbsp;=20
saying &quot;There is nothing wrong&nbsp; with you =
physically&quot;.&nbsp; He=20
left me to lay,&nbsp; finding within myself the strength to crawl out of =
the=20
floor and back into my bed,&nbsp; praying and asking God for the =
strength to=20
help me and my out family of this&nbsp; nightmare.&nbsp; Eventually I =
was=20
released.&nbsp; With huge bill in hand.&nbsp; Only to find a general=20
practitioner who after seeing me for bronchitis asked the =
question,&nbsp;=20
&quot;Saandra do you think your other symptoms could be something=20
nuerological?&quot;&nbsp;&nbsp; Having an article on Pd in my purse I =
passed it=20
to him with tears in my eyes, saying ,&quot;Yes Parkinson's =
disease.&quot;&nbsp;=20
This compassionate doctor held me while I cried.&nbsp; I was then, after =
an=20
eight year long struggle,&nbsp; properly diagnosed by two nueros as have =

young-onset parkinson's disease, being in my eight year of coping with =
the=20
disease.</FONT></DIV>
<DIV><FONT color=3D#000000 face=3D"Calisto MT" =
size=3D2></FONT>&nbsp;</DIV>
<DIV><FONT color=3D#000000 face=3D"Calisto MT" =
size=3D2>&nbsp;&nbsp;&nbsp; As far as=20
the quack psych, well, I left him standing in his own office lobby, with =
a copy=20
of my large, very large bill in his hand, telling him it would go unpaid =
for the=20
injustice that was dealt to me.</FONT></DIV>
<DIV><FONT color=3D#000000 face=3D"Calisto MT" =
size=3D2></FONT>&nbsp;</DIV>
<DIV><FONT color=3D#000000 face=3D"Calisto MT" =
size=3D2>&nbsp;&nbsp;&nbsp; Now in my=20
19th year of being a parky there is no bitterness.&nbsp; I somehow by =
the grace=20
of God turned my anger into positive fuel power to search and find the =
best=20
medical therapy for the illness.&nbsp; The only outrage I now experience =
is when=20
I hear of a fellow young parky struggling with the same nightmare.&nbsp; =
I will=20
try to unite, offer encouragement and anything else I can to =
help.&nbsp;&nbsp;=20
The possible thought of us losing our didgnity, as so many already have =
,&nbsp;=20
is enough to get my dander up.</FONT></DIV>
<DIV><FONT color=3D#000000 face=3D"Calisto MT" =
size=3D2></FONT>&nbsp;</DIV>
<DIV><FONT color=3D#000000 face=3D"Calisto MT" =
size=3D2>&nbsp;&nbsp;&nbsp; Climbing=20
back down off my soap box, feeling lighter than when I first climbed up =
on=20
it.&nbsp; Sandra </FONT></DIV>
<DIV><FONT face=3DArial size=3D2>-----Original Message-----<BR>From: =
doublea &lt;<A=20
href=3D"mailto:[log in to unmask]">[log in to unmask]</A><BR>To: =
Multiple=20
recipients of list PARKINSN &lt;<A=20
href=3D"mailto:[log in to unmask]">[log in to unmask]
ca</A>&gt;<BR>Date:=20
Monday, January 25, 1999 2:09 AM<BR>Subject: Re:=20
Misdiagnosis<BR><BR></DIV></FONT>&gt;I've included parts of Jim's =
original=20
message with this so you will know<BR>&gt;what I'm referring to.&nbsp; =
I've been=20
gone for 5 days, and had over 200<BR>&gt;messages, so I don't think =
there is any=20
reason to be concerned with too many<BR>&gt;people dropping out re: the=20
web.&nbsp; I have known for at least 6 yrs there was<BR>&gt;something =
wrong with=20
my body.&nbsp; I break and train horses and balance =
is<BR>&gt;critical.&nbsp; I=20
agree with Jim - I had over 16 MRIs, and have seen 9<BR>&gt;neurologist, =
4=20
neurosurgeons, and I don't know how many blood tests and<BR>&gt;other=20
specialists.&nbsp; Both drs who finally confirmed pd did so=20
without<BR>&gt;knowledge of previous tests.&nbsp; No one should have to =
go=20
bankrupt and suffer<BR>&gt;for that long simply because they are =
&quot;too young=20
to have pd&quot;.&nbsp; Sorry to<BR>&gt;gripe, its late &amp; I'm tired =
but this=20
really struck a nerve<BR>&gt;Bob&nbsp; <A=20
href=3D"mailto:[log in to unmask]">[log in to unmask]</A><BR>&gt;-----Ori=
ginal=20
Message-----<BR>&gt;From: Jim Slattery &lt;<A=20
href=3D"mailto:[log in to unmask]">[log in to unmask]</A>&gt;<BR>&gt;To: =
Multiple=20
recipients of list PARKINSN &lt;<A=20
href=3D"mailto:[log in to unmask]">[log in to unmask]
CA</A>&gt;<BR>&gt;Date:=20
Sunday, January 24, 1999 6:33 PM<BR>&gt;Subject: Re:=20
Misdiagnosis<BR>&gt;<BR>&gt;<BR>&gt;&gt;Hi=20
Jennifer,<BR>&gt;&gt;<BR>&gt;&gt;&gt;what is the problem =
with<BR>&gt;&gt;&gt;the=20
medical community that they seem to completely overlook PD as=20
a<BR>&gt;&gt;&gt;possibility, especially in younger=20
patients?<BR>&gt;&gt;<BR>&gt;&gt;In our research (report to be launched =
9th=20
February 1999) we identified a<BR>&gt;&gt;great ignorance of PD, its =
symptoms,=20
and its effects, among all health<BR>&gt;&gt;professionals, whether =
specialist=20
neurologists, general practitioners,<BR>&gt;&gt;pharmacists, dentists, =
nurses,=20
physiotherapists, etc., etc.<BR>&gt;&gt;<BR>&gt;&gt;Perhaps the main =
reason for=20
this may be identified from a study<BR>&gt;commissioned<BR>&gt;&gt;by =
the=20
Australian Government from the Australian Science and=20
Technology<BR>&gt;&gt;Council.<BR>&gt;&gt;<BR>&gt;&gt;The report, =
entitled=20
&quot;Management of neuro-degenerative disorders in =
older<BR>&gt;&gt;people=20
2010&quot;, says in part, &quot;The study found that there is=20
grossly<BR>&gt;&gt;inadequate education and training in the areas of =
gerontology=20
and aging in<BR>&gt;&gt;university medical schools.&nbsp; This has =
resulted in=20
medical practitioners<BR>&gt;&gt;having poor skills for the management =
of NDDs=20
(neuro-degenerative<BR>&gt;disorders)<BR>&gt;&gt;in older=20
people&quot;.<BR>&gt;&gt;<BR>&gt;&gt;So true, but notice that even the =
writers=20
of this report fell into the trap<BR>&gt;&gt;of identifying NDDs, which =
include=20
Parkinson's Disease, as being only<BR>&gt;&gt;disorders of OLDER people! =
I might=20
point out here that the term &quot;older<BR>&gt;&gt;people&quot; in =
medical=20
research-speak usually means those aged 70 and over!<BR>&gt;&gt;(Perhaps =
because=20
many researchers are themselves aged 60-70?&nbsp; &lt;grin&gt;=20
)<BR>&gt;&gt;<BR>&gt;&gt;The eventual diagnosis of my own condition was=20
complicated by the fact that<BR>&gt;&gt;I had had a bad motor accident =
shortly=20
before I began noticing symptoms of<BR>&gt;&gt;PD.<BR>&gt;&gt;I was =
pursuing an=20
insurance claim, which, before it was settled, =
resulted<BR>&gt;in<BR>&gt;&gt;me=20
being referred by one side or the other in the claim to=20
TWENTY-SEVEN<BR>&gt;&gt;different doctors, NONE of whom suspected, or =
even=20
hinted at PD.<BR>&gt;&gt;<BR>&gt;&gt;Most seemed to favour a =
psychological or=20
psychiatric disorder. As for that,<BR>&gt;&gt;a paper by Lang AE et al,=20
(Department of Medicine (Neurology), =
University<BR>&gt;of<BR>&gt;&gt;Toronto,=20
Ontario, Arch. Neurol. 1995 Aug;52(8):802-10, states=20
that<BR>&gt;&gt;Parkinson-like symptomology resulting from a primary =
psychiatric=20
disorder<BR>&gt;is<BR>&gt;&gt;a very rare event, if seen at all.&nbsp; =
Much more=20
common is psychiatric<BR>&gt;disorder<BR>&gt;&gt;symptomology&nbsp; =
masking=20
underlying PD.<BR>&gt;&gt;<BR>&gt;&gt;I was 44 at the time, and I think =
that=20
this is a large part of the<BR>&gt;problem -<BR>&gt;&gt;most health=20
professionals taught before, say, 1990 (and many=20
-most?-<BR>&gt;since),<BR>&gt;&gt;were taught, in the wording of a =
popular=20
medical text, that Parkinson's is<BR>&gt;&quot;<BR>&gt;&gt;a&nbsp; =
disease of=20
the sixth decade&quot;, in other words, of people 60 and=20
over.<BR>&gt;&gt;<BR>&gt;&gt;Yet there is much recent evidence, =
scientifically=20
researched and published<BR>&gt;&gt;in major journals such as the =
&quot;New=20
England Journal of Medicine&quot;, stating<BR>&gt;&gt;that onset before =
the age=20
of 30 is decidedly rare, but thereafter, both<BR>&gt;&gt;incidence and=20
prevalence of PD rise with increasing age.<BR>&gt;&gt;<BR>&gt;&gt;Within =
any=20
given studied population, as many as 10% of patients admit to=20
an<BR>&gt;&gt;onset before the age of 40, and a further 20% develop =
symptoms of=20
the<BR>&gt;&gt;disease before the age of 50. The mean age of onset is =
still in=20
the<BR>&gt;mid-50s,<BR>&gt;&gt;with approximately 40% developing the =
disease=20
between the ages of 50 and<BR>&gt;60,<BR>&gt;&gt;whilst the remaining =
30%=20
experience onset over the age of 60.<BR>&gt;&gt;<BR>&gt;&gt;In other =
words, the=20
popular view is the opposite of the truth!<BR>&gt;&gt;<BR>&gt;&gt;It =
will not be=20
until doctors and para-medical health professionals =
are<BR>&gt;&gt;educated to=20
the fact that PD is common under 50, that this situation=20
will<BR>&gt;&gt;change.<BR>&gt;&gt;<BR>&gt;&gt;Part of our ongoing =
commitment to=20
our project will see kits produced for a<BR>&gt;&gt;number of health=20
specialities, explaining the complexities of PD treatment<BR>&gt;&gt;and =

management, and pointing out that young-onset PD is an=20
increasing<BR>&gt;&gt;incidence.<BR>&gt;&gt;<BR>&gt;&gt;Jim<BR>&gt;&gt;<B=
R>&gt;&gt;+---------------------+<BR>&gt;&gt;|&nbsp;&nbsp;&nbsp;&nbsp;=20
Jim Slattery&nbsp;&nbsp;&nbsp; |<BR>&gt;&gt;|&nbsp;&nbsp; <A=20
href=3D"mailto:[log in to unmask]">[log in to unmask]</A>&nbsp;&nbsp;=20
|<BR>&gt;&gt;|---------------------|<BR>&gt;&gt;|&nbsp;&nbsp;&nbsp;&nbsp;=
&nbsp;=20
Webmaster&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; |<BR>&gt;&gt;| Central West PD =
Web=20
|<BR>&gt;&gt;| <A =
href=3D"mailto:[log in to unmask]">[log in to unmask]</A>=20
|<BR>&gt;&gt;+---------------------+<BR>&gt;&gt;</BODY></HTML>

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