I thought this may help about Young-Onset PD for our friends in Denmark.
 
THE YOUNG PARKINSON S PATIENT
By Erwin B.  Montgomery, Jr., MD
Reprint from YPSN,  Movers & Shakers  New Member Packet
 
 Editor's note: This article appeared in the Parkinson News & View, Southern
Arizona Chapter APDA, June / July 1994.  It is reprinted with their
permission. Dr. Montgomery is an Associate Professor of Neurology at the
University of Arizona College of  Medicine and advisor to the Southern
Arizona Chapter of APDA.
 
There is a misconception that only old people get Parkinson s disease.  While
it is true that most Parkinson patients develop the disease in their late
fifties or early sixties, we know that at least 8 percent develop the disease
younger than 40 years of age.  There is growing concern that the number of
young Parkinson patients is increasing.  It is unclear whether the disease is
actually increasing among the young or we are just recognizing it more often.
 We know that Parkinson s disease affects the young and old in different
ways.  Parkinson s support groups, educational organizations and publications
have started to address these differences more directly in recent years.
 
Young patients tend to have more tremor, but better balance and walking.
 Young patients sometimes have more involuntary movements or dyskinesia in
response to medications, but have fewer problems with thinking abilities.
 The disease progresses at a slower pace for the young patients, and they are
better able to tolerate some of the side-effects of the medications.
 
The psychological and social impact of PD on a working person with family
responsibilities is different from the impact on a retired person whose
children are grown and out of the house.  Many young patients are very
concerned about whether they will be able to keep their jobs and continue to
support themselves and their families.  In my own practice I have seen many
young patients forced to retire prematurely.  There are psychological factors
related to job loss that go beyond financial considerations.  Individuals may
not be prepared for the drastic changes in lifestyle associated with forced
retirement.  There is often a loss of self-esteem and the attendant risk of
depression.
 
There are laws to protect working Parkinsonians from unfair termination
(Americans with Disabilities Act).  However, despite these laws, finding or
maintaining a job can be extremely difficult for the young patient.
 
The Cost of Medical Care
 
Another unique concern of the young patient is the cost of medical treatment.
 Often young patients are many years away from Medicare eligibility and must
rely on health insurance provided by their employers.  This dramatically
increases the concern about maintaining a job.  Many health insurance
companies have clauses that exclude benefits for pre-existing diseases.  This
means that young Parkinson patients are at risk of losing their medical
coverage if they change jobs.  Thus, some young patients find themselves
unable to advance in their careers.
 
The future of health care delivery is under intense debate, both nationally
and on the state level.  The Parkinson community, particularly young
Parkinson patients, needs to take an active voice in determining the shape of
future health care.  They should act aggressively in making sure their state
and federal representatives understand the need to do away with the
pre-existing condition problem.
 
Medical Care of Younger Patients
 
The medical treatment of young Parkinson patients is different from that of
the more elderly patient.  The young patient has to anticipate dealing with
the disease for many years.  There is evidence suggesting  that how a patient
is managed early in the disease can have a profound impact later in the
disease.  The issue of slowing the progression of the disease and delaying
complications is of importance to all patients, but of paramount importance
to the younger Parkinsonian.  Unfortunately many physicians do not understand
how early treatment decisions can affect long term outcome.
 
There is concern that long term exposure to levodopa can increase the risk of
developing complications.  This has led many Parkinson experts to use
medications other than levodopa such as direct dopaminergic agonists
(Pergolide or Permax., Bromocriptine or Parlodel.).  These medications are
used less frequently in the elderly because of the high risk of side-effects.
 However, younger Parkinson patients can tolerate these medicines much
better.  Early use of these medications can delay the time that levodopa
therapy must be initiated and perhaps delay the onset of complications from
long term levodopa use.
 
The Problem of Denial
 
All patients and caregivers have to put up with misconceptions and prejudices
about Parkinson's disease.  However, these misconceptions and prejudices may
have a greater impact on younger patients and their families, who often bear
a greater burden in trying to hide their illness from neighbors, employers
and coworkers.  This leads to a state of denial where patients ignore or
minimize the effect their illness has on them and those close to them.  This
denial may keep younger patients from seeking the kind of help that could
make a significant difference in their lives.  It is difficult to get young
PD patients to attend public education programs or support groups, partly
because information is often geared toward the elderly or more severely
affected patient, and partly because of a genuine reluctance among younger
patients to be associated with this illness and its elderly patients.
 
Often younger patients deny the existence of their disease even when the
symptoms are quite obvious to everyone around them.  It is very difficult to
say how this situation should be handled.  A great deal depends on the exact
circumstances.  Young PD patients may wish to discuss this issue with their
physician, or with a psychologist or social worker.  Children are often
astute observers of symptoms and will become alarmed if their Parkinsonian
parent insists that nothing is wrong when problems are obvious.  Many
children of Parkinsonians are reassured when told that although their parent
does have an illness that won't go away, the disease can be managed.
 Consulting your doctor or a counselor can be helpful in specific instances.
 
Resources for Younger Patients
 
Little is known about the unique effects Parkinson's disease has on younger
people.  Most of the medical textbooks have been written based on experience
with elderly patients.  It has only recently come to light that significant
numbers of young people develop Parkinson's disease.  As health care
professionals, we need the young patients to educate us, so we can understand
what they are facing.  We urge younger Parkinsonians reading this newsletter
to contact APDA's Young Parkinson's Information and referral Center in Santa
Maria, California and to become part of their national data base.  Call (800)
223-YPSN to request their questionnaire and other information.  We also
encourage younger Parkinsonians everywhere to make local organizations aware
of their particular concerns. And, please, attend your local Young
Parkinson s Support Group meeting.     END
 
 
Regards,
Alan Bonander ([log in to unmask])