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
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