Dear Susan,

I wish I could provide answers for all your questions (below) regarding your
Mom's problems, but hopefully others on this PD List will be more able to
knowledgeably do so than I.

However, I am herewith attaching 3 LYNX-based addressbooks that I've created
over a long period of time, targeting internet-based info-sources related to
health and PD; perhaps they'll be of use to you in seeking answers.

Simply open these files with Internet Explorer (or perhaps Netscape), click
on the item that you want to pursue, and you'll be connected to the
appropriate website. (Note: The file "b-medalt" focuses mainly on
"alternative medicine" sites; "b-med.PD' focuses mainly on PD-related
sites.)

Separately, I'll also e-mail you a search-engine-page that is aimed at
finding health-info; I'm sending it privately because I don't know if it's
legit to place that page on the PD List. That mailing will also include
either the page, or a link to the page, for the FDA site, and maybe more.

But I do not recall having found a site that contains photos or color images
of meds -- although perhaps one of the sites that I haven't checked for
quite some time now has them. I guess you'll have to search around -- or
maybe even send an e-mail to the FDA (and some of the other sites) asking
them where you can find that information.

As to the meds that you mentioned; I'm not familar with all of them, but I
do recall reading that Artane, while it may be very appropriate for some
people, has been superseded by various other PD meds that were said to be
more effective and better tolerated. As for Prednisone (the correct
spelling), I recall too that this can have strong unwanted side-effects
(depending upon dose etcetera) and requires careful watching.

I strongly urge you to not only do what you're doing -- i.e., to
conscientiously discuss all these things with your Mom's doctor(s) and to
look into getting a Movement Disorders Specialist involved in her care --
but also to consult with, or bring in, if you can, a well-credentialed
holistic MD or holistic nutritionist; their approach, if they're good, will
likely be to seek to root out the underlying causes of your Mom's
physiological problems and to prescibe cellular/systemic-health-revitalizing
noin-pharmaceutical regimens, whereas allopathic medicine -- while of course
seeking to get the patient well -- instead typically emphasizes the
necessity to use pharmaceuticals, which usually bring with them negative
side-effects. (For example, various major antibiotics, while perhaps
necessary in a given situation, also depress the body's natural
immune-system and its production of red blood cells -- side-effects that it
would usually be best to avoid.)

I wonder if, as others have suggested on the PD Listserv, your Mom may be
suffering from a really bad interaction of all those emds that she'd been
taking. Had some of them been newly (or recently) added to her regimen when
these symptoms began to appear or as they progressed? That may be a clue.
Or, prior to the start of the problem, had she typically been taking her
meds at certain times, or with meals (for example), while one of those
factors changed at about the time that the problem began? This too could be
a clue.

I've read, at times, in the PD Listserv, reports of persons whose PD-like
symptoms terribly increased shortly after they'd been put on a new medical
regimen -- and that, despite the doctors in those cases not knowing what to
do (or so said the writers), when the individual used his or her own
judgement and went off the suspected meds, that person's condition sometimes
markedly improved. So perhaps, again, you might want to press your Mom's
doctor(s) about whether any or all of her meds may be contributing to her
current problem.

By the way, h etc., as you described earlier, does sound as though she'd
been getting TOO LITTLE Sinemet; but a good Movement Disorders Specialist
can help figure this one out.

Hmm, another thought: Did she, sometime not too long prior to the onset of
these problems, have amalgam dental fillings put in or replaced? The U.S.
dental community, of course, generally takes the position that amalgam
fillings are safe; but there is much dispute over that position, its
opponents citing much research that states that the mercury in the fillings,
and the vapors that the mercury allegedly emits, are toxic to the Central
Nervous System. If your Mom did have such dental treatment recently, this
too may be a clue. Note: If you need to research this topic, I may have a
link or two noted in one of my LYNX-address-books. Or you can go to a
search-engine and have it search on the word "amalgam" or a phrase such as
"amalgam and (teeth or mercury or fillings)". There's lots of literature on
this topic.

I also wonder if your Mom's doctor(s) have conducted an MRI or CAT scan, or
run other tests, to see if she may possibly have had a mini-stroke that
started these problems; it couldn't hurt to ask; I doubt that she's had a
ministroke, but why not play it safe and check?

There's another diagnostic procedure that might be well worthwhile to do --
but the only problem is that most allopathic-based hospitals and doctors
either don't know about this test or reject it outright. I'm referring to
the Darkfield Microscope Live-Cell Analysis diagnostic test, which most
holistic MD's DO know about and value. In essence, it involves taking
literally a single small drop of blood from a pricked finger, and placing a
number of tiny samples of that droplet onto a microscope plate, and viewing
the samples -- by a properly trained person -- under a Darkfield Microscope
at (as I recall) between 2,000-25,000 magnification. The viewed sample, of
LIVE BLOOD, is lit in such a way as to allow the image to be projected onto
a TV monitor, by which you can actually see the living behavior of the red
blood cells, the white blood cells, bacteria, fungi, etcetera -- including
how they're interacting, how the red blood cells are clumping or flowing,
and more.

Basically, it provides -- unlike the standard blood-test which involves
centrifuging components out of blood serum and simply quantifying those
now-deactivated components -- direct evidence of the health (or lack of it)
of the living components of blood and of the "living" blood itself.

For example, it can reveal, right there on the "live action" television
monitor, how bacteria or fungi might be attacking and burrowing into the
walls of red blood cells, or it might show whether or not the white cells --
which SHOULD be moving around like amoebas and engulfing bactreia and
fungi -- might instead be unmoving and "paralyzed" by such items in the
blood as too high a level of sugar (which holistic MDs usually say can
indeed "paralyze" white blood cells and thus diminish the blood's ability to
fend off attacks by bacteria or fungi). And, to the trained eye, this simple
diagnostic procedure is said, by its proponents, to provide valuable clues
that can aid in the planning of appropriate remedial procedures for the
patient. (Personally, i wish it had been allowed for my Mom, but at the
hospital she was in -- a major, highly rated one here in New York City --
the med-lab microbiologist whom I approached about this diagnostic test told
me he'd never heard of it.)... If you want to research this topic further, I
may have made some links to sites about it in my "b-medalt" LYNX-book, or
you can use a search-engine to do your own search on the topic.

On the care side, yes, it's a good idea to have the nurses place
double-sheets, and/or a thick fabric matteress-pad, on the mattress, so that
your Mom doesn't sweat, especially if she's on an air-mattress. It's also
good that the nurses are seeing to it that she gets to walk around every so
often -- that can be very important and health-helping for her.

I think you're doing the right things -- it's just a tough time. But keep
your spirits up; remember, things can indeed improve, and they probably
will.

Well, that's all for the moment. I hope that some of this is helpful to you.

Best wishes,
SJS
[log in to unmask]
11/4/98
*****************************


  Date:    Tue, 3 Nov 1998 14:04:15 -0800
  From:    Susan Tomlin <[log in to unmask]>
  Subject: Hi

  To SJS

  Is there any place on the Internet that I can look up perscription drugs
with  color photos?

My mother doled out her own pills. Unfortunately, she kept perscriptions
she no longer took with ones she did in a cardboard box along with
vitamins, so all I could do was check the dates on the bottles.

I found two bottles of sinemet, one from '94 100/25 and a more recent one
200/50 from  '96 she only took a quarter of a tablet when she felt like she
needed it as was perscribed on the later batch.

She takes Artane (trihexyphenidyl ) one tablet daily

She was also taking methotrexate 2.5 mg ( for Arthritis ). 8 tablets once
each week. An increase of one pill since June.

Provera ( for osteoporosis ) one tablet daily 5.0 mg ( last week she was
switched to 2.5 mg but she hadn't started taking them, yet )

Premerin ( C.E.S. ) 0.625 mg one pill daily.

Didrocal ( I can't locate the package I saw it last week ).  She started
taking that several months ago for her osteoporosis.

Calcium 500 mg
vitamin D 1,000 iu  she split each pill in half.
folic acid 1mg
vitamin E 400 ui

Tonite when I speak with our Doctor I will find out exactly how much
Sinemet they are giving her now and why? Plus a whole bunch of other
questions!!!!! I also will mention if they could check to see if she has a
bladder infection too...

In 89/90 mom took Prednezone (sp) and Gold injections for her Arthritis.
Mom went from being a strong healthy woman to being bed ridden and
paralyzed from the knees down and as weak as a kitten in 2 1/2 months. I
did not know if she would live or die and neither did the doctors... She
had bad reactions to both the medications and later they felt she had
neuropathy. I did notice when she was in the Hospital that her right hand
was trembling when she held a styrofoam cup of water ( co-incidently that
was the same hand that took her that got her diagnosed with Parkinson's 2
years later ). Sometimes I wonder if those drugs caused her Parkinson's.

With mom being in the hospital I worry she might become dyhdrated. They
only seem to hand out those little juice cup things and a jug of water
which mom is unable to handle right now. When I was there I made sure she
drank something. The staff are helping her to eat too.

Her eating habits ( at home ) were good as I did all the cooking. I would
make sure that she got a smaller portion of meat and more veggies. She ate
three meals a day.

Mom slept with her patio door open so I'm sure she got more fresh air than
I got at night. She is sure sweating now that she is in the hospital. They
rigged up a fan for her.

I phone the hospital three times a day and ask if they are getting her up
to use the commode or bedpan, how many times etc. Today they told me they
took her for a walk around the ward and are going to start taking her to
the bathroom tomorrow. I want to make sure that they get my mom up and
moving as much as possible. Some of the staff in the hospital know me and
how much I care for my mother, so I think that in one respect, because of
that they will treat my mother slightly better than the average person ( I
hope ).

Question: What type of clothing would be suitable for my mother both cool
and easy for her to get on and off ( remembering her hands are bad ). We
got velcro put on her shoes and she could manage that ok.

Thanks for all your help so far :-)

Take care

Bye for now

Susan


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