----- 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 > > > > ---------------------------------------------------------------------- > > To sign-off Parkinsn send a message to: > > mailto:[log in to unmask] > > In the body of the message put: signoff parkinsn > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn