Young people who are diagnosed with Parkinson's face challenges that
are typically not encountered by older patients. One of these
involves the parenting of young children and adolescents.

Caring for a child of any age is time-consuming, patience-wearing,
draining both financially and emotionally…. and at the same time, one
of life's richest experiences. Managing an exhausting schedule of
diapers, play groups, sporting or school activities and birthday
parties while also coping with PD can be a daunting prospect but one
that can be managed.

Building a support team

Coping with both a child and PD requires a support team. In the best
of all worlds, this will include the healthy spouse as well as
relatives, godparents, friends and neighbors. As the child gets older
and is involved in more activities outside the home, help from these
team members can allow the PWP to concentrate on what he or she is
able to do and worry less about what is not being done because of PD.
Even for two healthy parents, ready access to babysitters, carpools
and help at home is extremely helpful. For the parent with PD, it
becomes a necessity.

Managing Fatigue

Being a responsible parent can be tiring enough for anyone, but when
parenthood is combined with PD (and the PD medications which can
themselves can cause fatigue), the results can be truly exhausting.
Again, relying on your support team to whom you can delegate
different tasks can allow you time to regroup. List-making can be
strangely liberating. Prioritize it so that those items at the top
are "must-do" while those lower on the list can be ignored, delayed
or, better yet, delegated among your team members. Being realistic
about one's abilities is also important. For example, volunteering
for afternoon pickups from school rather than early morning carpools
(if you know the effects of your medications are more predictable
later in the day) can allow you to be an active and participating
parent within your own abilities.


The children…..

Having a parent with physical limitations can change a child's
outlook on life for the better – especially if he or she has a
positive attitude. It can allow the child the opportunity to develop
compassion for those with physical challenges and feel comfortable
talking to, playing with or otherwise interacting with people who
are "different."

On the other hand, if either parent is embarrassed by the PWPs
limitations or by the physical appearance of the symptoms, the child
may develop the wrong outlook about physical disability. If one or
both parents is always complaining about the limitations PD has
caused instead of living their lives to the fullest, the child can
grow up to be resentful and inconsiderate.

Just as the PWP can become frustrated by his disorder, so too can the
children who also must cope with it on a daily basis. Joan
Blessington Snyder, a young-onset PWP from Chillicothe, IL who has
two teenage children, (and who is a co-editor of the widely praised
book of Parkinson's poetry: Parkinson's Disease: Voices from a
Parking Lot) tells us that her children have always known her with
Parkinson's and that at times, she feels it has been a burden to
them. She said, "When I fall, when I hurt myself or when I cry
because of "little things that don't amount to a hill of beans," my
children get angry and sometimes they yell at me. It takes all of my
strength of character to remember that they aren't yelling at me but
rather at a faceless, cowardly enemy they cannot fight."

Some suggest that a child who grows up in a household in which one
parent has a significant physical handicap means that child will
mature more quickly and thus lose his/her childhood. But having a
child share in the chores around the home can help to teach that
child responsibility and yes, that encourages maturity. Is that so
bad? Will that child grow up resentful for not having been allowed to
remain a "child" longer? More likely, the child will be proud of his
or her accomplishments.

Mrs. Snyder talks about the opportunities her children have
experienced because of her PD. She tells of the PWPs from all over
the world her family have met because of their Mom's involvement in
the PD community, of meeting members of Congress and of helping to
build a Habitat for Humanity house for a wheelchair-bound couple.

How to explain PD to your child

The explanations needed will change as your child ages. Once he or
she can talk, questions will follow about new discoveries or
experiences but remember, Mom's tremor or Dad's slowness isn't new.
When the child starts to come into more regular contact with other
parents and begins to see that his own Mom or Dad is "different," the
harder questions will come.

What to explain about PD, how and when, depends on the level of the
questions asked and the child's comprehension levels. One lady, when
asked by her 4-year-old why she shakes, simply said, "You know how
your nose gets stuffed up when you get a cold? Well, I have a problem
that makes me shake but that just makes me able to tickle you
better!" She said just explaining that one symptom seemed to allow
her son to accept all the other little "hiccups" she experienced due
to her PD.

Another woman told me that the hard questions began after a biology
class on genetics in which inheritance factors for hair and eye color
were discussed. Her son came home clearly upset and absolutely
certain that he would inherit PD from his Dad just as he inherited
his Dad's brown eyes and black hair.

By being open and honest, these parents had built a wonderful,
trusting relationship with their son and they were able to allay his
fears. His mother told me she explained to her son that knowledge
about Parkinson's was always expanding and she needed help keeping up
on it all. This young man immediately volunteered to help and they
(Mom, Dad and now 16-year- old son) began reading the newsletters
from each organization as they arrived.

Communication

As we all know, communication skills can be compromised as part of
Parkinson's disease. The soft, monotonous speech pattern that often
accompanies the condition can alone impede communication. The mask-
like facial expression may also exacerbate the problem. To a child, a
PD parent's expressionless face can suggest a lack of interest,
either in the child himself or in what child and parent are
discussing. Making the extra effort to show interest, excitement or
approval is important; for example, Mrs. Snyder commented that she
now makes a real effort to speak more with her eyes and through
touch. "Often, a kiss must take the place of a smile that won't show
on my frozen face," she says.
In this area as in so many others, the key is giving your children
the opportunity to express their fears, concerns, worry or even anger
so that you as their parent can offer counseling or alternative ways
of coping with whatever the situation may be.

Will I be alive and able to dance at my child's wedding?

No one can accurately predict when we'll be able to slow/stop the
progression of Parkinson's but parents can and should be optimistic
about their future abilities. If research continues at the pace it
has for the past 40-plus years, and there is no reason to expect it
won't, the outlook for the current and future PD community is quite
bright. With quality medical care that optimizes symptomatic control,
regular exercise, well-balanced meals and an optimistic attitude, a
parent diagnosed with Parkinson's today should be confident in the
prospect of dancing at a daughter's wedding.



Questions on Pregnancy & PD

An article on parenthood wouldn't be complete without a discussion of
pregnancy.
For that small population of PWPs who are either contemplating
pregnancy or who are now pregnant, the following facts may be useful.

Will I Pass On My PD?

For most people, PD is not thought to be inherited. Scientists have
suggested that if there is a genetic factor involved in PD, it will
likely turn out to be more of an inheritance of a slight
predisposition which then requires triggering by one or more
additional factors if it is to develop. These other factors might
include environmental concerns (naturally-occurring or man-made), a
past illness/disorder or some sort of trauma, or a combination of
these. The one caveat here is that ongoing research is suggesting
that early-onset PD may have a somewhat larger inherited component
than the more common version of the disease.

Getting Pregnant

Having PD does not affect someone's ability to reproduce. It does not
affect a woman's ability to carry a baby to term and it does not
increase the chances for either physical or cognitive birth defects.

That said, there ARE considerations and concerns for a woman who is
diagnosed as having PD who wishes to become, or already is, pregnant.

Pregnancy and the antiparkinson medications

In general, the medications used in the symptomatic treatment of
Parkinson's disease will not harm the sperm or egg, and have no
adverse effect on the fertilization process.

At the same time, none of these medications has been tested in any
extensive way in pregnant women to determine what the effect, if any,
may be on the fetus. For this reason, most physicians recommend
reducing the dosages of medications - including PD drugs – during
pregnancy, - especially during the first three months of pregnancy
when fetal development is at its most critical stage.

Pregnant women who have PD should be aware of two specific medical
warnings. One concerns amantadine hydrochloride (Symmetrel). As Dr.
Kathleen M. Shannon (RPSL, Chicago) has stated in her article,
Pregnancy and Parkinson's Disease, "animal research has suggested
that large doses of this drug might cause congenital abnormalities,
and there has been one infant reported to have a congenital
abnormality (a heart defect) as a result of this drug administered
during pregnancy. If possible, drugs other than amantadine should be
used."

The second warning concerns Sinemet (levodopa/carbidopa) in very high
dosages. Again, data gained from animal research suggests that the
use of significant levels of this drug can cause abnormalities in
bone formation. This was not seen in lower doses, among humans. In
Dr. Shannon's words: "there have not been any specific abnormalities
described in the scientific literature in offspring of women treated
with levodopa." (Printed copies of this article are available via the
PDF office in Chicago.)

It goes without saying that reducing antiparkinson medications during
pregnancy is likely to enhance the severity of parkinsonian symptoms.
The additional effects of hormonal changes and pregnancy-associated
stresses may further exacerbate symptoms. In these circumstances,
stress management techniques, rather than pharmaceutical options, can
often allow for better control and comfort.