hi peggy -

i think you are absolutely  right to educate yourself
- not that you (or your sister, as the case may be)
shouldn't consult with and listen to your doctor - you
should - but doctors are only human. some of them are
more knowledgeable than others, some of them listen
better than others, some of them make mistakes, and
some of them think they are capable of choosing
options for you that, in reality, you would not choose
if you had all the information necessary to evaluate
the options yourself.

i would recommend going one step further in your
search for information, though - i would recommend
reading the studies upon which treatment decisions can
be at least partly be based.

if you are interested in doing this - assuming you
haven't already - poke around on
http://www.pubmedcentral.nih.gov/, which i just
discovered has full text papers for free.

you can also go to www.pubmed.gov, which has thousands
of abstracts of articles and studies, the full text of
most of which you would have to pay for but sometimes
it is worth it.

i also have some huge number of studies already
downloaded - i just did a search for pdf's on my
computer and came up with about 1200 - most of those
are studies and articles on pd and i would be happy to
send you anything you like.

mackenzie

--- Peggy Rifleman <[log in to unmask]> wrote:

> Jesse,
>
> The internet is the place to start.  I am putting a
> list of the meds and how
> they work that I found on the internet.  Parkinson's
> progression will depend
> on the patient and you will have to work with the
> doctor on getting the
> exact right meds and dosages since everyone's
> disease is different.  Also,
> make sure you ask the doctor about exercise.  My
> opiniion is exercise is
> everything in keeping the muscles in the body in
> tone.   To find Parkinson's
> articles, go to www.google.com and write in
> "Parkinson's."
>
> My advice to you is that when her doctor gives you
> the medicines that you
> have her follow the direction exactly and make an
> hour by hour  journal of
> when she takes the meds and what her reaction to
> them is:  Do the tremors
> stop, is she able to move her feet, etc., does she
> have any involuntary
> movements--and record at what time all these things
> happen.  The doctor
> needs to know if the dosage she is given works and
> if there are any side
> effects and how long after the medicine is taken,
> the side effects happen.
> He will then be able to adjust her medicine so she
> gets the best benefit
> with the least side effects.
>
> I think you're wife is very lucky to have such a
> good friend.  If both of
> you work with your doctor, you will get the best
> results.
>
> There is a website   www.parkinson.org  that has an
> "ask the doctor"
> section.   Be sure that you keep your questions
> short and to the point.
> Read some of the earlier questions so you know what
> information the doctors
> need to answer your  question.  The following is
> from Michael Fox's website:
>
> "There is no cure for Parkinson's disease. Drugs
> have been developed that
> can help patients manage many of the symptoms; they
> do not stop the disease
> from progressing, however. Parkinson's patients
> frequently experience
> dramatic swings in mobility and mood (known as being
> "on" or "off"), which
> may depend on the severity of their disease or the
> timing of their
> medication doses. Because each Parkinson's patient
> reacts differently to
> treatment, doctors and patients must work closely to
> find a tolerable
> balance between the drugs' benefits and side
> effects.
>
> The first drug approved specifically for Parkinson's
> (in 1970)--and still
> the most commonly administered therapy--is levodopa
> (L-dopa), which is sold
> in the United States under the brand name Sinemet.
> Levodopa is taken up by
> the brain and changed into dopamine. In most
> patients, it significantly
> improves mobility and allows them to function
> relatively normally. As
> Parkinson's disease worsens over time, larger doses
> must be taken. The drug
> also has debilitating side effects for some
> patients, including dyskinesia
> (involuntary movements and tics) and hallucinations.
> (Sinemet must compete with amino acids to cross the
> brain barriers,
> therefore protein interferes with this flow to the
> brain--better not to eat
> protein directly before or after taking Sinemet)
>
> A number of chemicals such as carbidopa, the other
> active ingredient
> (besides levodopa) in the drug Sinemet, are able to
> prolong the effects of
> levodopa and help reduce its side effects. Carbidopa
> works by slowing the
> conversion of levodopa to dopamine in the
> bloodstream so that more of it
> reaches the brain. Comtan (entacapone), a so-called
> COMT inhibitor, has the
> same effect as carbidopa when taken along with
> levodopa. It blocks a key
> enzyme responsible for breaking down levodopa before
> it reaches the brain.
> Similarly, the drug deprenyl (in generic form or
> marketed under the brand
> name Eldepryl) can enhance and prolong the levodopa
> response by delaying the
> breakdown of levodopa-formed dopamine.
>
> Other drugs work differently. So-called dopamine
> agonists such as Parlodel
> (bromocriptine), Requip (ropinirole), Permax
> (pergolide), and Mirapex
> (pramipexole dihydrocholoride) work directly on the
> target cells of the
> substantia nigra in a way that imitates dopamine.
> Dopamine agonists are
> often used in combination with levodopa.
>
> Some people with Parkinson's disease take drugs
> called muscarinic
> antagonists, which include Artane (trihexyphenidyl)
> and Cogentin
> (benztropine). These may be particularly effective
> for parkinsonian tremor.
> Symmetrel (amantadine) is sometimes useful for
> tremor or for making levodopa
> work better, but exactly how it works is not clear.
> It may also dramatically
> reduce dyskinesia in some patients with this side
> effect."
>
> Jesse, this is a list of medications so that when
> you talk to your doctor,
> you will have a little better knowledge of what he
> is prescribing and why.
> Sometimes doctors will start with the last group of
> drugs so that Sinemt
> will be held in reserve for when the symptoms get
> worse.  The main thing is
> to work with the Doctor and if you don't get
> results, you can always get a
> second opinion.
>
> Good luck,  Peggy
>
>
>
>
> ----- Original Message -----
> From: "Jesse Brown" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Monday, October 02, 2006 12:16 AM
> Subject: Re: New Member on list with lots of
> questions
>
>
> > Peggy, my name is Jesse Brown, my wife Catherine
> has shown symptoms of
> > parkinson's starting six month ago, we now have an
> appointment with a lady
> > Neurologist in Spartanburg, SC we live in Bostic,
> NC, any answers that you
> > get from your letter about your sister I  would
> appreciate any help I can
> > get, all this is new to me, I want the very best
> for my sweetheart.
> >
> >  Jesse Brown
> >
> >
>
>
>
> > Peggy Rifleman <[log in to unmask]> wrote:
> >  Dear Friends,
> >
> > I am Peggy Rifleman, the sister of a 72 year old
> woman who has had
> > Parkinson's for at least 12 years. I apologize for
> this long introduction,
> > but I am desperate for information.
> >
> > My sister started on levadopa and carbidopa
> (sinemet) in the beginning and
> > I searched the internet for information about the
> disease. I ran into a
> > person who charted his medicine and food and found
> the best amount of
> > medicines and when to eat without disturbing his
> symptoms. Perhaps he is a
> > member of this list. I could not get my sister to
> try the system--she just
> > takes the medicine given to her by the doctor and
> has been bumbling along
> > all this time until last year when her symptoms
> seemed to take a turn for
> > the worse. She was having trouble moving and she
> heard about COMT
> > inhibitor and mirapex. The first day she started
> taking mirapex, she
> > walked a mile and quarter without any trouble and
> then walked back. She
> > was doing for well for the entire year, but now
> something is wrong.
> >
> > She is bobbing, bobbing so bad that her neck is
> being jerked and she has
> > to hold her head. The doctor at my urging cut down
> her levadopa--she was
> > taking it 4 times a day. He cut it to 3 times a
> day and then cut the
> > midday levadopa to 1/2 pill. she takes the mirapex
> 3 times a day.
> >
> > I understand the biochemistry of levadopa levadopa
> crosses the brain
> > barrier in the amino acid channel (thus protein
> inhibits the crossing) and
> > then leva is cut from the dopa which makes muscles
> move.
> >
> > There is an enzyme in the blood that cuts the leva
> from dopa before it can
> > get to the brain barrier--the carbidopa inhibits
> that enzyme. She is also
> > now taking the COMT inhibitor with the sinemet
> which also inhibits that
> > enzyme.
> >
> > Then she is taking Mirapex, which is a dopa
> agonist which means it
> > competes with dopa for the dopa receptor and
> delivers approximately the
> > same result as the dopa.
> >
> > Agonists may lead to new neurons or at least they
> may not destroy neurons
> > as it is thought leva dopa does.
> >
> > The doctor said the idea is to get her on the
> lowest amount of dopa and
> > the best amount of mirapex.
> >
> > The doctor also said he was trying to balance the
> dopa and cholinergic
> > amounts or something like that..
> >
> > In the first 10 years, the doctor hasn't suggested
> any other regimen of
> > medicines until she asked for Mirapex.
> >
> > Yet there are a myriad of medicines out there to
> choose from, one of them
> > reduces bobbing and that is Amantadine. Why didn't
> the doctor prescribe
> > that?
> >
> > What are anticholanergic medications?
> >
> >
> >
> > I would like a plan. How can I approach all these
> medicines that are out
> > there for Parkinson's? And find the best regimen
> for my sister? I need all
> > the help I can get. Thank you for allowing me to
> share this list with you.
> >
> > Peggy Rifleman
> >
> >
> >
> >
> >
> >
>
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> >
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