Hilary Blue wrote:

> where can one get a copy of that I  used to have one and it was vey good.
> doesnt it also inclue a liset of medications not to take with pd meds? or was
> that separate ?Anway, i gave my copy away, and now i would like another one. .
> Hilary
>
> Michel Margosis wrote:
> >
> > There is also a set of directives from Dr. Mitch Mills, a CG, for other
> > CG's on how to deal with having a loved one in a hospital.  It explains
> > how to maintain control of the situation. Highly recommended.
> > Michel


I would think that Janet might provide it since she knows everything here.
But I found it in my long list of 'sent' file and here's a copy 'as is'.
===============================================

Subject:              Re: my essay on hospitalization
    Date:              Thu, 12 Aug 1999 21:12:53 -0400
   From:              Michel Margosis <[log in to unmask]>
        To:              [log in to unmask]
References:              1


From: Mitchell Mills <[log in to unmask]>
Subject:      Safe Hospitalization for Parkinsons Patients

There has been enough request for the ASCII version of this file that I
decided to send it to the entire list.  I have added a few paragraphs to
it (eg. about preparing liquid levodopa)


All hospitalized patients are at risk for medical injury.  This risk is
probably increasing as nursing staffs are reduced to save money and as
quality of care is considered less important than the cost of care.

For Parkinson's patients, the risk is further increased because they are
very dependent on a high quality of care.  They have an underlying,
chronic neurologic disease that increases both the difficulty of their
care and the chance of complications.  Consider the following facts:

        1. The physician who usually manages your Parkinson's may not be
available in the hospital which you enter.
        2. The physicians whom you encounter may not be at all
knowledgeable about Parkinson's disease.
        3. The nursing staff on your hospital ward is unlikely to have
much knowledge or experience about Parkinson's disease.  Even worse,
because the nurses are overworked, in a hurry and focused on other kinds
of problems, they will probably not be motivated to learn about the
disease in time to benefit your care.  And, still worse, when
complications develop due to improper management of Parkinson's disease,
they will probably blame you for being "uncooperative".
        4. You may be forced on a "drug holiday" because your medication
program interferes with house rules about the administration of
medications or because you are unable to take oral medications due to
the condition for which you were hospitalized.  As you are well aware,
this, added to the stress of your illness, can rapidly result in you
being a very different patient than you were when you entered the
hospital, now under the care of persons unable to recognize and deal
with that.  Again, you may be considered "uncooperative".
        5. Certain drugs given commonly to hospitalized patients for
symptom relief may be need to be reduced or omitted in Parkinson's
disease.  Your doctors and nurses may be unaware of this (see below for
more details).
        6. You can expect some mental changes while hospitalized which
may blunt your ability to care for your Parkinson's disease as well as
you usually do. At the same time, your family may not be permitted to
violate "visiting hours" to be at your bedside to help.
        7. You may be discharged from the hospital too quickly due to
insurance regulations.  This may not allow time enough for you to
recover the same level of independent living you enjoyed when you
entered the hospital.  It also may not allow enough time for helpful
consultations such as physical therapy, occupational therapy, etc.

As frightening as these facts are, they are certainly not impossible to
overcome!  The following are some guidelines for doing just that. I have
omitted specific recommendations for management of Parkinson's disease
which are best decided by your neurologist.

Whenever possible, discuss your Parkinson's disease management with all
of your doctors before you are hospitalized.  Be sure to ask how it
impacts on the risks and results of treatment.  Arrange for your
neurologist to consult with your other doctors and ask that he/she
arrange for neurological care while you are in the hospital.

Designate, in writing, a person to make treatment decisions for you if
you are unable to do so.  This person should be readily available during
hospita- lization.  Copies of your declaration should be given to your
doctors and to the charge nurse to be put on your chart.  You may add to
your declaration how you wish to be treated in case of a terminal
illness.  This should include how you feel about alternate routes of
feeding (i.e. feeding tubes, intravenous lines).  You should, at least,
discuss these matters with the person whom you designate as your
alternate decision maker.  If you do not designate an surrogate in
writing, Virginia law provides the following order of choice: spouse,
adult child (or a majority of the children when there are more than
one), the patient's parents or the nearest living relative.  Please
consult your attorney for details about these matters.

Arrange for a family member to be present in your room at least 16 hours
each day.  In some instances, this may need to be 24 hours a day.
Parkinson's disease is the perfect excuse to get around those usual
"visiting hours".  A cot to allow a family member to sleep in the room
can usually be made available.  Intensive care wards make these sorts of
arrangements more difficult but not impossible.

Present your medication program, in writing, on arrival.  Ask that it be
placed on the chart and copied by a doctor into the "doctors orders".
Ask the attending doctor in your case (the doctor under whose name you
are admitted) to order that you can have your medications at the bedside
to be administered on time by you or your family member, keeping track
of it on a bedside chart.  Insist that changes in the dosages and/or
timing of your medications be made only for medical reasons, not for the
convenience of the nursing unit.  Resist statements to the effect that
"it won't matter".  Ask that your medication  program be continued right
up to the time of any planned anesthesia and surgery,  and that it be
resumed as quickly as possible thereafter. Beware of arbitrary
statements by admitting personnel (such as "absolutely nothing by mouth"
after midnight) which could turn out not to be in your best interest.
Provide the charge nurse with a written summary about your Parkinson's
disease including what happens if you are over or under medicated.
Stress what changes they are likely to observe if you are taken off
medications.

Keep a bedside log (or have the family do so).  Take the names of all
persons who care for you and record them in the log along with any
significant occurrences.

Question all treatments and medications until you or your surrogate are
satisfied they are necessary and correct.  If you are not satisfied, ask
to speak to the nursing supervisor or your doctor. If the result is
still not satisfactory, seek out the hospital administrator on call or
the "ombudsman" which many hospitals have.

If you are in bed most of the time and/or have difficulty changing
positions in bed, be sure you are provided with a special mattress which
helps to avoid pressure sores.  An overhead trapeze bar can also be
attached to a hospital bed quite easily.  It is used to help pull
yourself up and change positions.

If your mobility is severely limited, ask for "anti-embolism" stockings
and question whether or not a blood thinner is necessary to help prevent
blood clots in the legs and lungs.

Avoid drugs which can themselves cause Parkinson's-like symptoms.  These
include the phenothiazines (e.g. Compazine) often given for nausea and
vomiting, haloperidol (Haldol) commonly used for agitation and
hallucination, and metoclopramide (Reglan) which is used to improve the
motility of the gastro- intestinal tract. Before accepting any drug for
the relief of nausea, vomiting, anxiety or agitation, you or your family
need to ask if the drug is compatible with Parkinson's disease or can
cause Parkinson's-like symptoms.

Drugs used for high blood pressure (hypertension) must be used with care
because, in a Parkinson's patient, they can cause a dangerously low
blood pressure. Your blood pressure needs to be checked with you lying
down and standing and the dose of the drug adjusted accordingly by your
doctor.

If you take selegilene (Eldepryl), there are possible severe adverse
reactions when combined with  the common pain reliever meperidine
(Demerol) and with certain antidepressants (e.g. Prozac and Zoloft).

Certain antidepressants (monamine oxidase inhibitors) may require a
reduction in the dose of Sinemet (e.g. Nardil).

Your neurologist is familiar with all of the above potential drug
problems and should be consulted about them.

Diazepam (Valium) (in small doses) and diphenhydramine (Benadryl) seem
to be safe sedative drugs for Parkinson's patients.

Consultations with Pulmonary Therapy, Physical Therapy, Occupational
Therapy, Dietitian, Speech Therapy, and Social Services are often
indicated and will be most beneficial if begun early.  Don't hesitate to
suggest them to your doctors.

A dietitian consult immediately on admission may be necessary if you
require a low protein diet for breakfast and lunch and a high protein
dinner.  As a general rule, self selection of your diet for each meal is
the best way to be happy with your hospital food.

If the surgery you are having precludes taking anything by mouth for a
significant time, you can make liquid Sinemet which can be sipped as
needed or put down a stomach tube (taken off of suction for 30 min). The
total daily dose is mixed in a small amount of warm water containing 2
grams of ascorbic acid powder (vitamin C). Then enough water is added to
make one liter. It is taken in divided doses during the next 24 hours.

If dyskinesia (extra movements) occur, the dose of Sinemet (levodopa) is
reduced. It is common to need less levodopa after surgery and while on
bed rest, probably because one is moving much less than is normally the
case. As moving about increases, the dose of levodopa is increased until
one gets back to the usual daily requirement.

If mental status changes do occur (confusion,  disorientation,
hallucination), please realize that,  frightening as they are, they are
nearly always temporary.   They clear up completely and you get back to
baseline as soon as you get better.  Be sure your family knows this
too.   They are often the most upset about such changes.  If the family
is present in the room, it will often avoid the necessity for restraints
on your arms and legs.  Even so, side rails will be put up on the sides
of the bed at night.  Again, family members can help to manage these if
you need to get out of bed in a hurry.

With regard to anesthesia, fortunately, there are very few special
problems in Parkinson's patients.  Nevertheless, it  is important to ask
to speak to your anesthesiologist pre- operatively (or have the family
do so).  This will assure that he/she is aware of the details of your
Parkinson's disease which could modify some of the decisions made during
and after the anesthetic.  Examples would be pre-anesthetic medication,
when to consider local anesthesia with safe sedation and when to
consider the use of a respirator for a
time after the operation.  As mentioned previously, the anesthesiologist
will be happiest if you are optimally medicated for your Parkinson's
disease right up to the time of surgery. He/she may have to call the
admitting office to let them know that it is all right for you to take
Parkinson's medications in sips of water right up to the time of
surgery. Your neurologist and/or your  anesthesiologist may want you to
stop taking Eldepryl several weeks prior to surgery so that you can take
narcotics such as Demerol safely. Discuss this well ahead of planned
surgery.

Discharge planning discussions should begin soon after admission.  A
planning conference should sometimes be held prior to discharge.  A
family member (care giver) should attend this conference.  I know that
some of the above may seem to be an unnecessarily paranoid approach to
this subject.  However, It is based on over 30 years of experience with
hospitalized patients as well as a review if the current literature.  I
feel that it can be carried out with a fair but firm  attitude that will
achieve the necessary goals without  alienating the care givers unduly.
The bottom line is: it is just not safe to sit back and  assume that all
will be done correctly.  It is necessary  that we be strong advocates
for ourselves and our loved  ones.

Mitchell Mills, MD., 9/2/97
5