If you think you have PD, or your family doctor thinks you have PD
and refers you to a specialist, these are some common questions:

How Do I Know If The Specialist Is Good?

If your family doctor picked the specialist your doctor has probably
worked with him (or her), knows his credentials, knows his abilities,
and knows how he deals with people. However, in an era where HMO's
and insurance companies limit your choices, this may not be so. Ask
your family doctor, or the specialist (or the specialist's office
manager):

Is The Specialist A Neurologist?

To practice as a neurologist a doctor, an MD (medical doctor) or a DO
(a doctor of osteopathy) must complete an accredited 3 year neurology
training program.

Is The Neurologist Board Certified?

Upon completion of their training program, a neurologist takes first
a written and then an oral examination in Neurology and Psychiatry.
For a neurologist 75% of the questions are on Neurology and 25% are
on Psychiatry. For a psychiatrist 75% of the questions are on
Psychiatry and 25% are on Neurology. Neurologists and psychiatrists,
upon successful completion of their examination, are notified by the
American Board of Psychiatry and Neurology as being certified in
either Neurology or Psychiatry. Certification by the Board attests
to, but doesn't guarantee, competence. Board certification (as
evidenced by a diploma) is like a Good Housekeeping Seal. There are
exceptions. The best neurologist I knew was not Board certified, he
couldn't bother with the test.

Is The Neurologist A Movement Disorder Specialist?

Within the field of Neurology there are accredited (by separate
Boards) sub-specialties. Movement Disorders (which includes PD) is a
sub-specialty but is not accredited by a separate Board. Movement
Disorders includes PD (approximately 80% of the practice), the PD-
like disorders (Multiple System Atrophy, Progressive Supranuclear
Palsy, Corticobasilar Degeneration), Dystonia, Essential Tremor,
Huntington disease, Restless Legs, Tardive Dyskinesia, and Wilson
Disease. To be called a Movement Disorder specialist a neurologist
must take a 1-3 year fellowship in a Movement Disorder program after
finishing his Neurology training. Usually, the Movement Disorder
specialist will display a certificate attesting to his completion of
the fellowship. If you do not see such a certificate, ask where the
specialist trained in Movement Disorders. There are excellent
neurologists who treat PD and did not complete Movement Disorder
fellowships. They, like all most Movement Disorder specialists,
belong to the Movement Disorder Society (MDS). The MDS is an
excellent organization but it is not a Good Housekeeping seal of
approval. Any neurologist, or researcher can belong if they pay an
annual fee.

Is The Movement Disorder Specialist Famous? Is He (or She) a Thought
Leader?

Does his (or her) name come up when you search for PD articles on
Google, or Medline, or the National Library of Medicine, or
Scirus.com? Is he (or she) listed in the "Best Doctors in America?"
Is he (or she) on television whenever there's a "breaking" story on
PD? Is he (or she) Michael J Fox's, or Janet Reno's, or the Pope's
doctor?

The above reveals the specialist is familiar with PD and it's
nuances. But he or she may not be right for you. He (or she) may be
too busy doing research, writing articles, giving speeches, or
traveling to see you when you want to see him. Or, when you do get an
appointment you may not see him but one of his fellows or associates.
And while he may be available for Michael J Fox, or Janet Reno, or
the Pope, he may not be available for you.

What Else Should I Do or Know?

Ask yourself, "Why am I seeing the doctor? What is my main problem,
complaint, concern?" Although you're anxious, afraid, depressed, and
you may not remember everything you want to ask, try not to come with
a long list. A long list will make the doctor anxious and depressed.
List the 3 or 4 main problems, complaints, or concerns in their order
of importance to you. If you're satisfied the doctor has answered
your 3 or 4 main problems, complaints, or concerns, and there are
others you want the doctor (and not his staff) to answer, make a
return appointment. .

If you're going to see the doctor because you think you have PD, say
exactly what prompted you to come. The following are examples: "I
think I have PD because I have a tremor." "My wife or a friend or
another doctor said he or she thought I might have PD." "I saw
Muhammad Ali, or Michael J Fox, or Janet Reno, or the Pope on
television and I think I have what they have."

Bring a summary of your medical history including serious and chronic
illness, hospitalizations, surgeries, allergies, medications taken,
family and personal risks, occupational risks, lifestyle risks. If
what you have to talk about is difficult to discuss, practice how to
bring it up. If you expect bad news bring someone supportive with you.

On your first visit take a family member or friend. They will provide
you with emotional support and comfort. They're more likely to be
objective and to hear what the specialist said rather than what you
thought he said. A word of caution: too many family members or
friends in the room, more than two, changes the nature of the visit
If you have small children get a baby sister: children may be
frightened by being in a doctor's office, and they can cry and be
disruptive.

Look for a courteous, caring, and polite staff. Look for a clean
office. Look for information on PD: books, pamphlets, and
newsletters. Look for nurse or an assistant to ask you to fill out a
form regarding PD. Such a form tells the specialist what he thinks is
important. The questions asked, the clarity with which they are
asked, and the detail into which they go into will give you an idea
as to how the specialist thinks.

Waits of more than ˝ hour are rarely justified. Before you visit ask
if the doctor goes to the hospital before seeing patients If he does
this may result in delays because of unforeseen emergencies If the
doctor goes to the hospital ask for an appointment on a day he does
not go. If you asked the doctor to "squeeze you in", and he did,
expect a delay. A doctor who will see you as an emergency or as a
favor will generally set a time he can see you, or he will say, "I
cannot fit you in but I can have my associate or my colleague do so."

The Examination

Although the diagnosis of PD may be apparent as soon as you walk-in,
the doctor should stifle the urge to make such a quick diagnosis To
begin with, the diagnosis may be incorrect, or if correct, disturbing
and not appreciated by you or your family. At the beginning of the
illness, you and your family are frightened and anxious. You have
probably sensed something is wrong but have denied or dismissed the
symptoms. Now you and your family are guilty and angry for not
seeking help sooner. If then a stranger, the doctor, rapidly point
out the obvious, it succeeds only in reinforcing your guilt and
redirecting the anger toward – the doctor.

A recurrent theme of patients seeking another opinion is that the
previous doctor: "Didn't examine me or listen to me." For a
satisfactory doctor-patient relationship to be established, the
doctor must appear caring and involved. He should take a careful
history, conduct an examination, and spending time with you and your
family. After such a relationship has been established, his diagnosis
is more likely to be accepted and his recommendations followed.

During the history, you may make a remark that confirms the
diagnosis. Statements such as the following are almost diagnostic of
PD: "My hand only begins to shake when I sit down" or

"My handwriting has gotten so small that the bank won't cash my
check"

It may become apparent to the doctor that you are not aware of any
difficulty either because of denial or because of your inability to
sense the difficulty. Although tremor and difficulty moving are
prominent symptoms in PD, there may also be perceptual, behavioral,
and personality changes that can interfere with your ability to
recognize your difficulties.

It may become apparent during the examination there is marital
discord. A spouse who constantly answers for you without being asked
and makes remarks such as: "He walks bent down like an ape" will not
be the sympathetic care-giver necessary for successful management.
Marital discord should be addressed. This is best done in a
subsequent visit after the doctor has a better understanding of your
family dynamics. It's helpful if the doctor asks whether any family
member or friend has PD. If you have direct knowledge of someone who
became bed-ridden because of PD you will need reassurance that PD
will not similarly affect him.

The activities of daily living (ADL) of the Unified Parkinson Disease
Rating Scale (UPDRS) include speech, salivation, swallowing,
handwriting, cutting food and handling utensils, dressing, hygiene,
turning in bed, falling, freezing, walking, tremor, and sensory
symptoms. The doctor or his assistant's review of your daily
activities should not be reviewed the way you review a laundry list.
Careful and imaginative questioning is always helpful.

You should be asked if there has been a change in your voice. Voice
implies difficulty with the mechanical rather than the linguistic
aspects of speech. An answer such as "yes, my voice seems to fade out
at times and people are always asking me to speak up" is almost
diagnostic of PD. You should be asked if you have recently noticed
saliva escaping from the corner of your mouth. This is a private
symptom often apparent only to you. The question usually elicits a
reply such as "Yes, my pillow is wet at night, but I didn't mention
it." Although drooling may be a relatively minor complaint, the
symptom in the minds of many patients and families is associated with
dementia. You should be reassured that your drooling does not mean
you will "loose your mind." Prominent swallowing difficulty early in
PD disease usually implies a PD-like disorder. Difficulty with
handwriting, cutting food, handling utensils, dressing, and hygiene
to some extent depends on whether your dominant hand is affected. If
you appear to be unaware of any difficulty with these tasks, the
doctor may ask you if your are slower in performing them. This
question usually elicits a response such as "Yes, but that isn't
anything, is it?"

It's helpful for the doctor to obtain specimens of your handwriting
and compare them with past samples. This may show when your disease
actually began. In some people it's reassuring to know they had PD
for several years before they were aware of their symptoms. This
implies their PD is progressing more slowly than they thought.

If your non-dominant hand is primarily affected, the questions should
be directed so as to include those activities you usually performed
with that hand. Thus if you're right-handed with left-sided PD, you
may be asked how you buttons your shirt sleeves on your right side or
how you wash your right shoulder.

Patients rarely associate difficulty with turning in bed with a
disease, do not mention it, and are surprised when asked. Such
questions provide you with insight into the scope of your disease by
making you realize that symptoms as different as tremor, drooling,
and difficulty turning in bed are part of the same process.

The diagnosis of PD is made after taking a history (such as that
described above) and by performing an examination in the office. A
Movement Disorder specialist should be able to diagnose PD and be
correct 85% of the time. Sometimes, because of unusual symptoms or
because of unusual finding on the examination the doctor may order an
MRI-scan. An MRI-scan does not diagnose PD. An MRI-scan can "rule-
out" other conditions that MAY mimic PD: hydrocephalus, small
strokes, tumors. Rarely a PET-scan (Positron Emission Tomography)
using a special isotope called fluro-dopa or a SPECT-scan (Single
Photon Emission Computed Tomography) using a special isotope may be
necessary to confirm the diagnosis. These tests are not available
everywhere, require special expertise in interpreting them, and are
supplements not substitutes for an examination by a Movement Disorder
specialist.


The Stages of Parkinson Disease

In 1967, before L-dopa or levodopa, Sinemet, or the dopamine
agonists, Drs Margaret Hoehn and Melvin Yahr began rating people with
PD on a 6-point scale: 0, 1, 2, 3, 4, 5. In 1967, the Scale reflected
the underlying state of their PD. Sinemet and the agonists changed
PD, symptoms receded and became masked or hidden. Sinemet, however,
doesn't halt the progression of PD. Thus, when you are rated, the
rating reflects not your underlying PD, but your outward appearance.
To rate the underlying PD state, Sinemet must be stopped for at least
one month. For most people this is impossible.

After 2 – 5 years many PD people fluctuate: your day consists of
being "ON" (Sinemet working) followed by being "OFF" (Sinemet not
working). If this is so you should be rated in both your "ON"
and "OFF" state. The Hoehn and Yahr Scale rates : mobility. It does
not rate anxiety, aberrant behavior, depression, dyskinesia, memory
loss, difficulty thinking, or difficulty swallowing. In many people
with PD these symptoms overshadow mobility. The Hoehn and Yahr Scale
is NOT a Cancer Rating Scale: it is not a guide to treatment and
outlook. However, despite its limits, the Scale has endured,
attesting to its usefulness.

The Hoehn and Yahr Scale

You should note whether Sinemet is working, whether you are "ON" Or
whether Sinemet is NOT working, whether you are "OFF" The doctor will
select the Stage that best describes you:

0: No visible symptoms of PD.

1: Symptoms of PD confined to One-side of the body.

2: Symptoms on Both-sides of the body, NO difficulty walking.

3: Symptoms on Both-sides of the body, minimal difficulty walking.

4: Symptoms on Both-sides of the body, moderate difficulty walking.

5: Symptoms on Both-sides of the body, unable to walk.

The Hoehn and Yahr Scale, your handwriting, or symptoms such as
progressive curvature of the spine may be used to track the
progression of PD

In addition to the traditional symptoms of PD: tremor, rigidity,
slowness of movement and difficulty walking, many PD people develop a
curved spine. Initially, their chin touches their chest, then their
shoulders stoop, then their spine curves. Their spine may bend
forward or to one-side. A curved spine may be the earliest symptom of
PD. The curved spine of PD differs from the curved spine of
osteoporosis. In osteoporosis the curve results from softening of
bones. In PD the curve results from an unequal pull of muscles: the
muscles in front pulling harder than those in back. This may be a
form of dystonia. In PD, unlike in osteoporosis, walking increases
the "pull" and increases the curve. In PD, unlike osteoporosis, lying
down decreases the "pull" and decreases the curve. In PD, drugs that
decrease the traditional symptoms of PD, may decrease the curve. In
some PD people, including Pope John Paul II, the curved spine and
stooped posture are their most prominent symptoms. And the progress
of their disease, like the Pope's, can be followed in pictures. In
2001 the picture's of the Pope are those of a person with PD. And, in
retrospect, so are his pictures in 1987.