Joseph, Has anyone done a BP and HR readings- laying, sitting and standing ?? There should be researchers there who study parkinsons and autonomic failure or autonomic dysfunction. sounds stupid but have u had blood work done recently? magnissium, calcium, potasium , creatine levels? Joseph Essertier wrote: >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]. > > does that happen only when u stand? >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]. > > where in ur neck? >*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. > what are ur BP and HR?? >* 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. > > What do u do for Protein? >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