This is a multi-part message in MIME format. ------=_NextPart_000_000E_01BE481C.CCC99640 Content-Type: text/plain; charset="Windows-1252" Content-Transfer-Encoding: quoted-printable 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] | >>+---------------------+ >> ------=_NextPart_000_000E_01BE481C.CCC99640 Content-Type: text/html; charset="Windows-1252" Content-Transfer-Encoding: quoted-printable <!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD> <META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR> </HEAD> <BODY> <DIV><FONT color=3D#000000 face=3D"Calisto MT" size=3D2>Insomnia just = woke me=20 up, It is crazy how it can wake you from a sound sleep. What = is=20 really crazy, 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.. 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 brought about a diagnosis of "psychologically = induced=20 symptoms brought on to avoid facing life." 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. At the age of 21 I = endured the=20 agony of 3 months worth of a psychiatric ward. Where a neuro who = thought=20 by being rude and blunt while examining me would "snap me out of=20 behavior", allowed my tremor ravaged body to slip into the = floor, =20 saying "There is nothing wrong with you = physically". He=20 left me to lay, finding within myself the strength to crawl out of = the=20 floor and back into my bed, praying and asking God for the = strength to=20 help me and my out family of this nightmare. Eventually I = was=20 released. With huge bill in hand. Only to find a general=20 practitioner who after seeing me for bronchitis asked the = question, =20 "Saandra do you think your other symptoms could be something=20 nuerological?" Having an article on Pd in my purse I = passed it=20 to him with tears in my eyes, saying ,"Yes Parkinson's = disease." =20 This compassionate doctor held me while I cried. I was then, after = an=20 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=20 disease.</FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Calisto MT" = size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 face=3D"Calisto MT" = size=3D2> 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> </DIV> <DIV><FONT color=3D#000000 face=3D"Calisto MT" = size=3D2> Now in my=20 19th year of being a parky there is no bitterness. 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. The only outrage I now experience = is when=20 I hear of a fellow young parky struggling with the same nightmare. = I will=20 try to unite, offer encouragement and anything else I can to = help. =20 The possible thought of us losing our didgnity, as so many already have = , =20 is enough to get my dander up.</FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Calisto MT" = size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 face=3D"Calisto MT" = size=3D2> Climbing=20 back down off my soap box, feeling lighter than when I first climbed up = on=20 it. Sandra </FONT></DIV> <DIV><FONT face=3DArial size=3D2>-----Original Message-----<BR>From: = doublea <<A=20 href=3D"mailto:[log in to unmask]">[log in to unmask]</A><BR>To: = Multiple=20 recipients of list PARKINSN <<A=20 href=3D"mailto:[log in to unmask]">[log in to unmask] ca</A>><BR>Date:=20 Monday, January 25, 1999 2:09 AM<BR>Subject: Re:=20 Misdiagnosis<BR><BR></DIV></FONT>>I've included parts of Jim's = original=20 message with this so you will know<BR>>what I'm referring to. = I've been=20 gone for 5 days, and had over 200<BR>>messages, so I don't think = there is any=20 reason to be concerned with too many<BR>>people dropping out re: the=20 web. I have known for at least 6 yrs there was<BR>>something = wrong with=20 my body. I break and train horses and balance = is<BR>>critical. I=20 agree with Jim - I had over 16 MRIs, and have seen 9<BR>>neurologist, = 4=20 neurosurgeons, and I don't know how many blood tests and<BR>>other=20 specialists. Both drs who finally confirmed pd did so=20 without<BR>>knowledge of previous tests. No one should have to = go=20 bankrupt and suffer<BR>>for that long simply because they are = "too young=20 to have pd". Sorry to<BR>>gripe, its late & I'm tired = but this=20 really struck a nerve<BR>>Bob <A=20 href=3D"mailto:[log in to unmask]">[log in to unmask]</A><BR>>-----Ori= ginal=20 Message-----<BR>>From: Jim Slattery <<A=20 href=3D"mailto:[log in to unmask]">[log in to unmask]</A>><BR>>To: = Multiple=20 recipients of list PARKINSN <<A=20 href=3D"mailto:[log in to unmask]">[log in to unmask] CA</A>><BR>>Date:=20 Sunday, January 24, 1999 6:33 PM<BR>>Subject: Re:=20 Misdiagnosis<BR>><BR>><BR>>>Hi=20 Jennifer,<BR>>><BR>>>>what is the problem = with<BR>>>>the=20 medical community that they seem to completely overlook PD as=20 a<BR>>>>possibility, especially in younger=20 patients?<BR>>><BR>>>In our research (report to be launched = 9th=20 February 1999) we identified a<BR>>>great ignorance of PD, its = symptoms,=20 and its effects, among all health<BR>>>professionals, whether = specialist=20 neurologists, general practitioners,<BR>>>pharmacists, dentists, = nurses,=20 physiotherapists, etc., etc.<BR>>><BR>>>Perhaps the main = reason for=20 this may be identified from a study<BR>>commissioned<BR>>>by = the=20 Australian Government from the Australian Science and=20 Technology<BR>>>Council.<BR>>><BR>>>The report, = entitled=20 "Management of neuro-degenerative disorders in = older<BR>>>people=20 2010", says in part, "The study found that there is=20 grossly<BR>>>inadequate education and training in the areas of = gerontology=20 and aging in<BR>>>university medical schools. This has = resulted in=20 medical practitioners<BR>>>having poor skills for the management = of NDDs=20 (neuro-degenerative<BR>>disorders)<BR>>>in older=20 people".<BR>>><BR>>>So true, but notice that even the = writers=20 of this report fell into the trap<BR>>>of identifying NDDs, which = include=20 Parkinson's Disease, as being only<BR>>>disorders of OLDER people! = I might=20 point out here that the term "older<BR>>>people" in = medical=20 research-speak usually means those aged 70 and over!<BR>>>(Perhaps = because=20 many researchers are themselves aged 60-70? <grin>=20 )<BR>>><BR>>>The eventual diagnosis of my own condition was=20 complicated by the fact that<BR>>>I had had a bad motor accident = shortly=20 before I began noticing symptoms of<BR>>>PD.<BR>>>I was = pursuing an=20 insurance claim, which, before it was settled, = resulted<BR>>in<BR>>>me=20 being referred by one side or the other in the claim to=20 TWENTY-SEVEN<BR>>>different doctors, NONE of whom suspected, or = even=20 hinted at PD.<BR>>><BR>>>Most seemed to favour a = psychological or=20 psychiatric disorder. As for that,<BR>>>a paper by Lang AE et al,=20 (Department of Medicine (Neurology), = University<BR>>of<BR>>>Toronto,=20 Ontario, Arch. Neurol. 1995 Aug;52(8):802-10, states=20 that<BR>>>Parkinson-like symptomology resulting from a primary = psychiatric=20 disorder<BR>>is<BR>>>a very rare event, if seen at all. = Much more=20 common is psychiatric<BR>>disorder<BR>>>symptomology = masking=20 underlying PD.<BR>>><BR>>>I was 44 at the time, and I think = that=20 this is a large part of the<BR>>problem -<BR>>>most health=20 professionals taught before, say, 1990 (and many=20 -most?-<BR>>since),<BR>>>were taught, in the wording of a = popular=20 medical text, that Parkinson's is<BR>>"<BR>>>a = disease of=20 the sixth decade", in other words, of people 60 and=20 over.<BR>>><BR>>>Yet there is much recent evidence, = scientifically=20 researched and published<BR>>>in major journals such as the = "New=20 England Journal of Medicine", stating<BR>>>that onset before = the age=20 of 30 is decidedly rare, but thereafter, both<BR>>>incidence and=20 prevalence of PD rise with increasing age.<BR>>><BR>>>Within = any=20 given studied population, as many as 10% of patients admit to=20 an<BR>>>onset before the age of 40, and a further 20% develop = symptoms of=20 the<BR>>>disease before the age of 50. The mean age of onset is = still in=20 the<BR>>mid-50s,<BR>>>with approximately 40% developing the = disease=20 between the ages of 50 and<BR>>60,<BR>>>whilst the remaining = 30%=20 experience onset over the age of 60.<BR>>><BR>>>In other = words, the=20 popular view is the opposite of the truth!<BR>>><BR>>>It = will not be=20 until doctors and para-medical health professionals = are<BR>>>educated to=20 the fact that PD is common under 50, that this situation=20 will<BR>>>change.<BR>>><BR>>>Part of our ongoing = commitment to=20 our project will see kits produced for a<BR>>>number of health=20 specialities, explaining the complexities of PD treatment<BR>>>and = management, and pointing out that young-onset PD is an=20 increasing<BR>>>incidence.<BR>>><BR>>>Jim<BR>>><B= R>>>+---------------------+<BR>>>| =20 Jim Slattery |<BR>>>| <A=20 href=3D"mailto:[log in to unmask]">[log in to unmask]</A> =20 |<BR>>>|---------------------|<BR>>>| = =20 Webmaster |<BR>>>| Central West PD = Web=20 |<BR>>>| <A = href=3D"mailto:[log in to unmask]">[log in to unmask]</A>=20 |<BR>>>+---------------------+<BR>>></BODY></HTML> ------=_NextPart_000_000E_01BE481C.CCC99640--