Parenthood and Parkinson’s Disease

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.