----- Original Message -----
From: "Merv Swing" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, December 04, 2004 10:34 PM
Subject: Re: Introducing myself and asking a question


> ----- Original Message -----
> From: "Joseph Essertier" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Thursday, December 02, 2004 6:03 PM
> Subject: Introducing myself and asking a question
>
> Hello, Joseph:
>
> I had many of your symptoms about two years ago.  I discussed them with a
> very wise general practioner who suggested a two week trial of sinemet.
> After one week, I called him back to tell him that the sinemet showed so
> much improvement in the symptoms that I believed he had confirmed the
> diagnosis of parkinsons.
>
> I see you've had a lot of replies suggesting that you do see a parkinson
> specialist and wanted to add my opinion that it worked for me.
>
> Merv Swing
>
>
> > Hello.  My name is Joseph Essertier.  I am an American
> > living in Japan.  I teach English and comparative culture
> > at a college in Nagano City, Japan, where the Winter
> > Olympics were a few years ago.  I also do research on
> > modern Japanese literature.
> >
> > I subscribed to this list because i wanted to ask some
> > questions to people who know about and have experience
> > with Parkinson's.  Experience has taught me that patients
> > usually know some things about their own health problem
> > that their doctors don't know or understand.
> >
> > I have not been diagnosed with Parkinson's, or even tested
> > for it, but i just started to wonder about this disease
> > the other day.  I didn't know anything about the symptoms,
> > except for the classic tremors that one sees in famous
> > people with PD in the mass media.  I just read about the
> > symptoms on the internet for the first time two days ago
> > and was surprised that i have many or most of the
> > symptoms.  I thought it was a disease that elderly people
> > got -- only elderly people -- and that the tremors were
> > very extreme, like the whole arm shaking.
> >
> > I read this article yesterday:
> >
http://www.umm.edu/patiented/articles/what_parkinsons_disease_what_causes_it
_000051_1.htm
> >
> > In that article, the parts that caught my attention the
> > most, that describe the kind of neurological problems i
> > have been having are:
> >
> >
> > *       Tremors may first be only occasional, starting in one
> > finger and spreading over time to involve the whole arm.
> > The tremor is often rhythmic, 4 to 5 cycles per second,
> > and frequently causes an action of the thumb and fingers
> > known as pill rolling. [This is the first time i have
> > heard this expression, "pill rolling," but it describes
> > very well one of the first things that started to worry me
> > -- about 4 years ago.  I get that in many different
> > fingers, but mostly fingers in my right hand.  I get
> > those, but i also get faster side to side twitches in my
> > fingers, especially during electrical storms, which we get
> > a lot of in Japan.  Once in awhile all the fingers in my
> > right hand will start to curl up, like my hand is trying
> > to make a fist but failing.  I notice this sometimes while
> > i am standing.  Once in awhile i feel embarassed when i'm
> > standing and talking to someone and this happens, and i
> > flex my hand to make it stop].
> >
> > I also get what i call "twitches" on my lips, eyelids, in
> > my toes, arms, legs, and other places.  They only happen
> > when the muscle involved is at rest.  I notice them the
> > most when i'm in bed, either when first waking or going to
> > sleep.
> >
> > *Muscles may become rigid ( akinesia). These symptoms
> > often begin in the legs and neck.
> > [I have suffered from a very stiff neck for the last 6 or
> > 7 years, but what surprises me is how on some days, it is
> > perfectly fine, with no stiffness at all.  I have tried
> > all kinds of stretching, with no luck.  I also experience
> > rigidity in my foot, where i cannot pull the foot/toes
> > upward, esp. when riding a bike.  And i have some rigidity
> > in my fingers sometimes].
> >
> > *Intestinal motility (the ability to swallow, digest, and
> > eliminate) may slow down, causing eating problems and
> > constipation.
> > [In the last year i have developed problems with
> > constipation, for the first time in my life.  The worst
> > has been this autumn.  My lower abdomen has been hurting
> > when i first wake up each day lately.  I have had trouble
> > swallowing for the last few years, to the point where i
> > don't start eating unless i have something to drink close
> > by].
> >
> > [I have all of the following]:
> > *       Orthostatic hypotension. Some patients experience a
> > sudden drop in blood pressure when they stand. This can
> > cause dizziness and fainting.
> > *       Changes in sensations of temperature, hot flashes, and
> > excessive sweating. My wife often says during the summer
> > she can't believe how much i am perspiring.
> > *       Leg disorders. Cramps and burning sensations in the legs
> > are common.
> >
> > I'm not sure if one would call it depression because
> > i'm usually pretty content with my life and everything,
> > but once in awhile i start crying about things that are
> > not a big deal and the crying becomes uncontrollable,
> > where i want to stop but cannot.  (My son recently said to
> > me, to my surprise, that he had never seen me cry -- not
> > that i think that real men don't cry.  I'm just not the
> > crying type.)  The first time that happened was about 5
> > years ago while watching a silly soap opera.  I don't
> > watch soap operas and watch very little TV in general.
> > Later i could not explain to myself why that soap opera
> > got to me.  I don't remember what the story was about at
> > all now.  I have had a number of similar crying bouts
> > since then, where later i cannot understand why i was so
> > upset.
> >
> > Most of the other symptoms in this list i guess i
> > experience but am less sure about -- either i'm not sure
> > if my symptom is being described or if mine is not that
> > bad.  For example, "shuffling."  I am not sure if it looks
> > like shuffling.  My stride seems shorter than it used to
> > be, and i sometimes feel a little difficulty in pulling my
> > leg upwards as i lift my feet for a step forward.  That
> > could just be tiredness though.  But i have been making a
> > conscious effort over the last year or so to pull my legs
> > up higher and take longer strides.  I have always been the
> > type who walks fast, but recently i am surprised to find
> > people on the street walking past me, where i am the slow
> > one.  And i have had trouble with stairs for the last 7
> > years or so.  About 7 years ago, i remember a friend, who
> > was in her late 50s, say to me as we were walking up the
> > stairs, "Come on old man!  Why are you so out of breath."
> > I have always been into exercising and sports -- riding my
> > bike everywhere, running, baseball, and other other things
> > -- and always strong and healthy, so i was surprised to
> > hear her say this, and similar things have happened many
> > times since on stairs.  I always have trouble keeping up
> > with the other train passengers while walking up stairs in
> > train stations in Japan now.  I'm 37 years old by the way.
> >
> >
> > My thumbs twitch a lot at times, always moving in the
> > direction of the other fingers.
> >
> > Somewhere i read something about excessive salivating as
> > one of the PD symptoms.  I have had trouble with that a
> > number of times in the last few years.  This autumn i have
> > had two periods of really extreme salivating, both for
> > about 2 weeks.  I had some sores in my mouth during the
> > 2nd, latest period, and my dermatologist said the sores
> > would heal naturally.  It happens a lot in fall here to
> > people.  So that may or not be the same as the other
> > salivating, which i don't remember being accompanied by
> > sores in my mouth.  A month or two ago i woke up one day
> > with my pillow case wet from salivating while sleeping.
> > No sores then.
> >
> > Fatigue, of course.  I have gone through a few periods of
> > extreme exhaustion, that wouldn't be solved by rest.
> > Three summers ago i had the summer from hell, where i
> > would go to work at 9 AM, leave for home at 4 PM sharp
> > (yes, really easy hours), take a nap until dinner time, go
> > to sleep after dinner, and wake up the next day at 8 AM.
> > All i did was sleep and rest, but was still tired.  That
> > lasted for at least 2 months.  It was a very hot, humid
> > summer, but i had been through many such summers in Japan
> > before.  What was so special about that summer?  I still
> > don't know, but i think the last two summers have not been
> > a problem because i changed my diet.  I have a near
> > vegetarian diet now with mostly whole grains.  I really
> > avoid white bread and white rice now because of the
> > constipation.
> >
> > I was diagnosed with seborrheic dermatitis the other day.
> > That's what got me started thinking about Parkinson's
> > because i read that people with Parkinson's get it a lot.
> > I have suffered from this for at least the last 5 years,
> > but never went to the dermatologist about it.  I thought
> > it was just dandruff, which i guess it is, but i have
> > major flaking or scaling on both sides of my nose, and all
> > the other typical places.  That has just become steadily
> > worse.  Only in the last year did it really start to
> > bother me, where my head and face were incredibly itchy.
> >
> > I have another skin condition, which used to be called
> > "neurodermatitis," which i know because my grandmother had
> > it -- she always wore white cotton gloves because of it --
> > but is also called "housewife dermatitis" in Japanese.  I
> > can't remember the doctor's name for it at the moment.
> > It's like psoriasis.
> >
> > Three years ago i was diagnosed with "panic disorder."
> > I'm not sure if i really have it because usually there is
> > a psychological component.  I have had about 5 panic
> > attacks in the last 5 years, the first one on a packed
> > "bullet train," but i rode trains hundreds of times after
> > that without fear, and never had another attack on the
> > train, which is the typical place for panic disorder
> > patients to get them in Japan.  (The trains are very
> > crowded and there is less oxygen, so...)  The doctor gave
> > me the equivalent of Xanax, in case i had another attack,
> > but i never took it.  He recommended that i take another
> > drug every day, but i said no thanks.  I avoid drugs of
> > all kinds.  If i can live with the symptoms, i'd rather do
> > that than face the side effects of the drugs.
> >
> > Finally, one problem i had that might relate is epilepsy.
> > I had grand mal seizure(s) -- not sure if it was one
> > seizure or more than one -- at the age of 3.  I took
> > phenobarbitol for a year or so, until my parents became
> > worried about how drowsy and unfocused i was, and took me
> > off of it.  Never had another grand mal after that, but
> > was tested for it in high school, and the doctor said i
> > was still having petit mals, which i occasionally noticed.
> >
> > This is a very long-winded introductory message, but i
> > guess my question is, "Do you think that these symptoms
> > are serious enough that i should go to a neurologist?"  I
> > already did go once before, to a neurologist in Japan.
> > That was about 5 years ago, when my symptoms were not as
> > bad as they are now.  He said that i was having these
> > twitches in my fingers, toes, and face -- this was before
> > the really strong ones, like all my fingers starting to
> > curl up, or the time my whole right hand wobbled back and
> > forth -- because i was just really "tired."  He
> > recommended rest and some tranquilizers.  Again, i said no
> > thanks to the tranquilizers.
> >
> > I went to cardiologists twice because the panic attacks
> > made me think i had a heart condition.  My heart is very
> > healthy though.
> >
> > The only doctor who actually helped me was a doctor in the
> > States.  Without actually seeing me in person, he guessed
> > that i would benefit from omega oils?  Fatty acids.  So i
> > take cod liver oil now.  I also take, on his
> > recommendation, vitamin B complex and magnesium
> > supplements.  The magnesium really relaxes me and helps me
> > to sleep through the night.  I was waking up too early for
> > awhile.  Thanks to him, i think, the twitches have
> > actually been not as bad during the last 2 years, as they
> > were during the previous 2 years.  New symptoms have
> > appeared and some other things have become worse, but the
> > twitching, esp. "twitching" of my heart (panic attacks),
> > has become much less frequent.
> >
> > One other thing i did, upon the recommendation of some MS
> > patients on the internet, was have all my mercury fillings
> > removed and replaced with composite resin.  I had about 8
> > "silver fillings," which are like 50% mercury and only 35%
> > silver.  That seemed to improve things a little, but
> > nothing dramatic.
> >
> > I am wondering if i should consider Parkinson's and maybe
> > try going to a neurologist once more, maybe a different
> > one here in Japan, or to one in the States the next time i
> > am there.  I have read a little about Alzheimer's.  An
> > expert on that disease on an MS site recommended that i
> > read a certain book on Alzheimer's, which i assume was
> > because he thought i might be a candidate for that.  I
> > think i had low blood sugar problems, which seem to have
> > gone away as i increased the amount of chlorophyl-rich
> > foods i eat and started eating brown rice.  Low blood
> > sugar is a cause of Alzheimer's, as is mercury.  As
> > mentioned, i considered MS.  I also read about ALS.  At
> > this point, i don't know what the problem is and i am just
> > avoiding neurotoxins, eating healthy and safe food,
> > getting moderate exercise and rest.  That is my strategy
> > in a nutshell.  I'm doing okay, except for certain
> > inconveniences and some pain once in awhile, but i am
> > thinking that the sooner i understand what the cause of
> > all these symptoms is, or what the causes are, the better.
> >
> > Thank you.
> > Joseph
> >
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