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PHENOMENA: PHACTS or PHALLACIES <P> (This is a continuation - sorry I'm so SLOW .. These are just my thoughts and I'm just another person.) > > <P> I am attempting in my own feeble way to list the 'phenomena' associated with PD and discuss them according to what I believe is the cause of my PD - airborne allergens. If you can think of any other PD 'phenomena' please let me know. > <P> THE THEORY: (This is a repeat; I'm using it so everyone will know how I'm thinking.) > <P> The commonly accepted theory about PD goes like this I believe: > Eighty to one hundred % of PDer's brain cells that produce dopamine are dead > which results in loss of dopamine that is shown on scans and the PD symptoms > the patient had while living and loss of substantia nigra found in PD patients at autopsy. > Surrounding this theory are many 'phenomena'. These 'phenomena'are actually known > FACTS. They are categorized as 'phenomena' because although they are FACTS > they do not FIT with the commonly accepted theory about PD, but rather seem > to REFUTE, CONFLICT WITH, and CONTRADICT it. So since we hold this theory > to be correct, they are classified as PHENOMENA and PARADOXES. > They just don't fit, or rather we SHOULD SAY I think that the THEORY does > NOT fit with the FACTS. It could loosely be like saying that if the shoe does > not fit, the FOOT is the wrong size. There are a number of these ill-fitting FACTS. > <P> > My theory says, NOT, but RATHER that reduced blood supply to brain is the basic > cause of my PD and that when blood flow is returned to normal, > PD symptoms go away. I believe that the hypoperfusion of my brain > is due to chronic sustained cervical (neck) muscle spasm (which > is shown on my MRI and also I have a positive arterial Doppler > on right while doing the Adson's maneuver) and that my neck muscle > spasm is a result of allergic reactions (as in asthma/bronchospasm) > and probably also because of overactivity of acetylcholine because > of the reduced amount of dopamine in my brain. The reduced amount > of dopamine I believe is from (1) the hypothalamus being faked out > by detecting not enough adrenalin because the whole volume of > blood getting through being reduced and therefore it signaling the adrenals to > produce MORE, causing tremor, until there is a sufficient amount > to 'break through' the muscle spasm, since adrenalin (epinephrine) > is an antagonist to the effects of histamine on muscles, which results > in a flood of adrenalin & dopamine (L-dopa which I take by mouth) to the brain > which causes the body's own producer of dopamine, the substantia nigra > to decrease and/or stop production and (2) The ischemia induced rise > in histamine which may cause a 50-60% reduction in dopamine as well > and the chain reactions that these occurrences initiate. (see past posts). >One reason that I believe this is because I found I could make all my Parkinsonian symptoms go away briefly simply by massaging my neck muscles with a heat/massager while on NO medication. > So, here is PHENOMENON #2: Paradoxical Kinesias (I covered this one in "My Story", so some of you may not be interested in reading any more on the subject.) > > In reality symptoms come & go without medication being a factor. > Then do the dead brain cells come back to life & die over and over again, > i.e. death & resurrection #1, death & resurrection #2, death & resurrection #3, > and so on???? We are required to do some extremely FANCIFUL theorizing > to explain it. Some WILD-sounding FANTASTICAL theories have been created > to try to make this FACT fit the theory. > > "Paradoxical kinesias" are referred to in about every book that I have read on > Parkinsonism. In Dr. Duvoisin's "Parkinson's Disease - A Guide for Patient & > Family" Raven Press copywrite 1991 it is discussed on page 37. (Third > Edition). These occurences are neatly filed under "Phenomenon". (shouldn't > happen given what we accept about the disease, but occurs so frequently we > can't deny their existence so we just say, "beats me - I don't have any idea > why it happens.") There are some pretty fantastic stories about paradoxical > kinesias. In Oliver Sacks "Awakenings" he tells of the "silent room", > where two almost totally motionless patients stayed. Suddenly one > day the "silent room" erupted into a maelstorm and everyone rushed to > the room to find the two patients up in the middle of the floor fist fighting. > Afterwards they returned to their motionless, silent state for many more years. > The examples run the whole specter, from simple to spectacular, and no one denies > they are fact. In Glenna Atwood's book on Parkinson's she mentions that > showers always help. Dr. Duvoisin mentions that many times the patient or spouse > will complain that they cannot demonstrate the disability because the patient > is always so much better at the doctor's office. Dr Stephen Reich of Johns > Hopkins commented to me that the joke is that if a building caught on fire > the Parkinson's patients would be the first people out. > > Here are some of my own experiences of "paradoxical kinesias", (and these are > just a sampling - there are many more: > > I was evaluated by Dr. Thomas Platts-Mills, an allergist at the University of > Virginia in Charlottesville, VA. A young doctor took my history and after I > had been in the room ~20 minutes I got really bad. I could hardly think, > speak or move. I learned later he had a cat for a pet at home and his clothing > had been worn around him. Then I was allowed to sit in the "patient sensitive > area". After ~10 minutes, I was COMPLETELY NORMAL. Medication was not a factor. > <P> > On two occasions my husband & children went on trips and to keep from staying > home alone I went even though > I was too sick to go. On both occasions I was much improved. On one trip my > symptoms did a complete reverse - it was time for my medication and normally I > would be very bad, but instead my symptoms went away for a time. (I > believe now that there were very specific reasons why these two places were so > good - on one we stayed in a new house, new clothes (because of pregnancy), > higher elevation, cleared, mown grounds, & a lot of time spent outdoors, the > other trip was under similar circumstances - very good allergywise.) Each > time when we returned home my symptoms were much worse. > > <P> > After renovating our house to take out "rags & paper" (or allergy no-no's- > carpets, upholstered furniture, draperies, books, clothing, linens, etc) we > had the ductwork professionally cleaned. They hooked up a huge vacuum > in the basement and literally pulled air from the upstairs rooms. I was > sitting in one of the bedrooms upstairs after they left and it was time for my > meds and instead of being bad, my symptoms did another reverse and I became > normal for a few hours. (The ductwork wasn't so wonderfully clean, but it was > the fact that they had PULLED the air out of the rooms). This was another > instance that made a lasting impression on me. After the renovations and > multiple filtering of our central heat/AC system, I began to improve, and > many of the worst symptoms went away - incontinence, mental symptoms (brain > fog) confusion, agitation, etc., I could eat again and began gaining weight, > and reclaimed some of my life that had been lost to PD/MSA. Currently > we have purchased a new home in the small town nearby since new > always seems to be better for me and there are so many of my known allergens > where we live now, and I still seem to be much better away from home, > even with the improvements. > > <P> > My husband is a programmer and part of his company manufacturers computer > chips. A strictly dust-free environment must be maintained in the manufacture > of computer chips because dust can ruin computer chips. So he got permission > for me to come and visit the chip line to see how it affected me. I sat in > the "airswept" room where they put on their special lab suits and not in the > line itself so it wasn't perfect but very good, and I was tremendously > improved, almost normal, while there. > > <P> > While staying with a friend of the family for a few weeks I discovered that > if I played "Mrs. Clean" - washed bedding, gown, cleaned room thoroughly, I > could sleep without pain - (I was on minimal meds because of pregnancy). > > <P> > I stayed in a Courtyard Marriott for several weeks and found that if I went > to the indoor pool/hottub room after the hottub had been in use for a time > that I could move normally for some time (on minimal meds w/pregnancy) but as > soon as the forced air heat came on it was all over. > > <P> > As I have said, it appears to be true in the extremes and also > in the smaller things - ie rainy days are better, showers help, steamed down > rooms are better, places like golf courses where there are few people and no > animals are better, (My neurologist told me his all time record breaker was > a pro-golfer - twenty years and still at it, doing fairly well), > usually hospital rooms & many doctor's patient rooms are > better because of good filters, hard floors that are regularly cleaned are > better, conversely crowded places are bad, cars or the smaller the enclosed > area is and the more allergens it contains the worse it is. > <P> > Watch for these type things, many of which have shown up on the Parkinson > list at times: (These are off the top of my head, so I may not get them > precisely right): Oxygen helps all kinds of symptoms - Don McKinley's breathing > Bill Levinson's dad's cognition, Shy-Drager list - oxygen helps pain for > several people. When I go to the Emergency Room I don't mince words. I > tell them it's an allergic reaction and ask for oxygen. Oxygen & antihistamines > and maybe an IV, and my usual meds will put me back on my feet even when > I'm having such a bad reaction I'm shaking all over, (from MY OWN adrenalin) > which could easily progress to a seizure, twisted up like a pretzel, > and in severe pain, and having breathing problems. It's what I'm NOT > getting when on oxygen - airborne allergens. Church buildings are usually > good - makes sense - because they are not frequently used, are usually cleaned > thoroughly, there are no animals and people wear their newest clothing > usually and they sit still. > Don mentioned going to church and all of a sudden his digestive system kicked > in. One list member mentioned her symptoms went away at her granddaughter's > Bat Mitzvah (sp?). > Some Shy-Drager people have mentioned that their severe orthostatic > hypotension confines them to a chair, but oddly they can go for a walk > outside. Ron Vetter I believe mentioned that several list members > find they can have "on" time by doing the 'bicycle' exercise. Someone mentioned > pushing against a wall or something solid with feet and head can help, > sort of 'reverse stretching'. ALL my symptoms went away by just massaging > my neck muscles a long time while on NO medication. Barb M. & others mention > that they are much better at the doctor's office. Many times when people > are admitted to the hospital they are much better. I hope you will at least > count it as a lead to check out in your own case. It's the AIR, that we are > breathing. Air is NATURE and people with allergies react to NATURE, > which is EVERYWHERE. You can't see it, but it's there. If there are > plants, there is pollen. If there are wooded areas there are usually > animals. If there is decaying leaves, etc there is mold. It can be > measured. Those with chemical sensitivity from a lot of pesticide or > some type of chemical exposure would react to chemicals in new buildings > etc. instead, but it's the same principle. > > If the commonly accepted theory about Parkinson's is correct, then > we must say that all these things will bring dead brain cells back to > life. IT'S STEW-PID. > > I say, and I am the only one that I know for sure who does, > that we have 'paradoxical kinesias' when the air that we are breathing > does not contain things that we are sensitive to, whether chemical > or nature, depending on the individual, or when we have an adrenalin > rush because epinephrine (adrenalin) & dopamine are antagonists to > histamine, and histamine is released when an allergic person is > exposed to their particular allergens. Other factors are anything > that helps keep the neck muscle limbered up - relaxing, massage, > certain types of exercise, swimming, golf, etc. because the basic > problem is that with the neck muscle spasm, the already tightly compressed > neck area is even more tightly compressed, lessening the flow of blood > through the neck and causing chaos by distorting the signals between the brain, > the control center, and the body. > > Also the fact that time to disability may > vary as much as 40 years, and types of symptoms and severity are almost > totally individualized on people who are supposed to have virtually > the same number of dopamine producing neurons - 0 -conflicts with the > commonly accepted theory about Parkinson's. > > I believe this extreme variability is explained by the fact that > nothing could vary more than each individual's sensitivities and > the ways that our bodies react to them. > > Thanks, > Janet > [log in to unmask] >