(From: Janet) This is just a continuation of previous posts on same
subject. If you were not interested in them press DELETE Now!
If we're taking a vote Re: "Get A Clue" & etc. Count me FOR: Poop, Toot etc
(Humor) ("It does good, like a medicine") FOR: Compassion & Caring - (Disease
is merciless) FOR: All the wonderful information FOR: Welcoming relaxed
atmosphere - FOR: Debates FOR: Mr. Joly's idea about identifying the major
topic in subject line where possible & the idea someone had about putting PD
before the PD related subjects, like (PD - JOBS, MEDICINE,UDALL,SURGERY,
etc,) then other subjects like (HUMOR, BANTER,PERSONAL TO (whoever))as a
courteousness to those who have little time and want to skip anything not
truly PD related.
(Personal to Den Gen)
I came in the back door on the antihistamine thing. I started taking
antihistamines because I believed my PD was allergy related. It wasn't
until later that I found out that antihistamines are sometimes
PRESCRIBED for Parkinson's.
(Personal to BB)
Unlike some of you, I could not afford the luxury of patiently (pun?)
waiting for research (though I am glad for you if you can). That time for me
had passed, and though I felt I didn't even know enough to accurately estimate
my stupidity, I had a big incentive - I was the one who was being mauled, and
also,as I said,I had built in test equipment, which was constantly providing
firsthand insight into the disease. I am an expert on my symptoms, (though
amazingly enough some people have tried to tell ME how I FELT at times! I can
be told just about anything, but I adamantly REFUSE to let someone else tell
ME HOW I FEEL! You will also notice that I have been consulting the best
experts I can and most everything I've learned besides my personal experiences
has come from them. I have high regard for the experts, however some very
valuable knowledge & insight can ONLY be had by experience, and the sufferers
themselves are really the ONLY ones who can tell if something actually works
or not, plus the fact that for a good amount of time my senses were not
"drugged" (although it was NO FUN) and I could get glimpses of the behavior
of the underlying disease that ordinarily I would not have had (who wants
to wrench their guts out when you can have relief?) And of course one reason
I posted on the list in the first place was to expose my idea to public scrutiny.
to see how it stood up. Daylight is a good disinfectant.
For enough disclaimers to choke T-Rex please see past posts.
(In case you've forgotten I'm the ca-RAZY lady who believes my PD is caused
by airborne allergens, and I still believe it, so you know where I'm coming
from as I speak ..)
I continue to test my belief, not so much for myself but for others.
My latest test was:
My husband is a computer programmer and worked for IBM originally (his
division (FSD) has subsequently been sold a couple of times but he is at
the same "desk" so to speak),anyway, a part of the operation here is a
computer chip manufacturing line. A strictly dust-free environment must be
maintained where the chips are manufactured because dust particles can ruin
computer chips - so my husband got permission for me to visit for a few hours.
I didn't actually visit in the manufacturing part per se, but in the "air
swept" adjoining room where they put on the special lab suits, so it wasn't
PERFECT, but very good, and though every trace of symptoms did not instantly
disappear I was TREMENDOUSLY improved, in fact as soon as we got out of the
room, my condition did a NOSEDIVE. Pavlovian response?, psychosomatic?, I
don't think those flaky arguments will hold up, because in many previous
incidents it would have had to be retroactive, because I didn't know until
later how I was supposed to feel.
Also I went to Johns Hopkins again, this time I saw Dr. Stephen Reich in the
neurology section. His diagnosis was Idiopathic Parkinson's, although I had
previously been told (by my neurologist) that I had evidence of multiple
system involvement, I no longer have that. I wasn't surprised, in fact I
suspected that I had improved enough that they could no longer justify that
diagnosis.
I apologize for all the vague terms I have used - ie "good", "bad",
"improved".etc I will roughly define by listing my symptoms at my worst state
and how they are now.
At my worst I had in varying severity: (1) Mental symptoms - depresssion,
anxiety, agitation, confusion, mental fogginess (word search was in slow
motion). It was like being so sleepy I would have to try hard to make sure
what I said made sense - my children said I was "just there"- stuporishness,
insomnia, inability to concentrate,etc. (2) Bowel & bladder incontinence at
times. (3) PAIN -almost exclusively right sided - neck, arm, leg,etc. (4)
Intermittent loss of hearing, slow eye focus, loss of smell (4) Fifty pound
weight loss - even during pregnancy) (5) Circulatory: Low blood pressure,
discoloration, swelling,heart palpitations, coldness - right side (6) Right
sided infections - nose, eye, skin, (7) Classic Parkinsonian symptoms -
Tremor, bradykinesia, rigidity, right side. (8) Micrographia - (small
handwriting)(9) Slurred speech, also low volume and slow (10) drooling (11)
Breathing difficulties, etc.
Now I have no significant mental symptoms, (somehow that sounds funny) no
incontinence, I am gaining weight and eating about anything, hardly any
infections, much less pain, normal blood pressure, I have regained a portion
of normalness that I had lost, ie driving, taking care of personal needs,
taking care of baby, family, etc. some cooking & household chores, shopping,
at times I have even felt really good for awhile. But I also believe that if
I really miss those horrible symptoms I know how to get them back. It's
unbelieveably nice to think you have at least some control over the horrendous
mess.
I just wanted to note that if you are intrigued enough, there are probably
endless ways to test it out for yourself with a test of your own design
which could be much simpler than mine. I did some of these because they
were done publicly and under circumstances that would not be as easy to deny,
but there are probably a multitude of very simple ways to do a test.
If anyone decides to try it out, here are some things that have helped me:
(1) I was told in the beginning that if it is allergy related the longer I
could stay away, the better I would be, so look MAINLY for improvement over
time, although there is often quick results,you can't expect them EVERY time
to the degree you might think, because other factors sometimes affect it -
stress, exercise, etc - similar things that might affect asthma.
(2) Deal with it as you would the Ebola virus except, it is affecting
only ONE person in the house, and they are the ONLY one who can tell if
it is working or not.
(3) If you are newly diagnosed or have mild symptoms or
medication is still able to mask your symptoms almost totally, you will not
be able to "sense"any difference.
(4) A caregiver is not a good judge, it is something that the sufferer
must judge, because they are the only ones who can tell, and
because of medications, etc (it is possible to attribute
just about anything to medication - too much, too little, side effect,
interaction),it is even difficult for them at times.
(5) Note that in the UVA incident it was only ONE person's clothing that
had been around animals that caused that bad of a reaction - I am
THAT hypersensitive. I was told also that clothing that contained allergens
was particularly bad because with moving around the allergens are constantly
put into the surrounding air. (We have certain clothing that we wear
around the house or when the children are with me).
(6) In my allergy test results there are indoor & outdoor substances --
pet dander, house dust, pollen, mold, some trees & grass, ragweed, etc,
so outdoors is not as wonderful as you might think. Dr. Creticos told me
that "cat (dander) is ubquitous" - measurable in about every public place -
and that is only ONE of my particular allergens.
(7) Our central heat/A/C system is bad news for my condition, as you might
imagine and we are still trying to decide how to best take care of that
problem, not only does it accumulate dust, etc in the ductwork that even
the pros can't get out good enough for me (I've tried it), but it blows
around what is brought in by other means. At present I have put as good
filters as I can find on the return, the central filter & each vent and
multiple filters in the rooms I use, but just the fact that it blows
everything around is not too good.
(To those with low blood pressure problems - Shy-Drager, orthostatic hypotension
etc - this site might be of interest - http://shuttle-mir.nasa.gov/science/
spinoff/bloodpre.html
I would appreciate hearing anyone's reaction whatever it is to this or my
other posts.
Thanks & IYQ Janet ([log in to unmask])
(one L)
