The author, Dr. Montgomery, gave me permission to reprint his article in the
Massachusetts YOPD Newsletter, "Young & Restless.". However the article was
first published in the Southern Arizona APDA Chapter newsletter, "Parkinson
News & Views." It is an excellent publication.Dr. Robinson often writes
outstanding articles for the AZ newsletter. Contact them by writing to the
Information & Referral Center, 1650 East Fort Lowell #302, Tucson, AZ, 85719,
or call (602) 326-5400.
 
The Young Parkinson's Patient
 
 
Erwin B. Montgomery, Jr., MD
 
Dr. Montgomery is an Associate Professor of Neuro/ogy at the University of
Arizona College of Medicine, and Medical 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% 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 Parkinson's disease 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.
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
 
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 aggessively 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 tneir 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 Parkinson
patients reading this newsletter to contact APDA's Young Parkinson's
Information & Referral Center in Santa Maria, California and to become part
of their national data base. Call 1(800) 223- 9776 to request their
questionnaire and other information. And please, attend a Young Parkinsonians
Support Group meeting .
 
If you, the reader, know a young PD patient who does not receive this
newsletter, we would appreciate your giving it to that person. Together,
young and old can work to ease the burden and find a cure.