other HD parents, names excluded if you wish.
My family has also gained a sense of humor as a result of PD. My
husband, Paul, and I have used humor to relieve the tremendous stress
that accompanies PD, as well as to put others at ease who otherwise may
feel uncomfortable around me. Following our example, my children poke
fun at the amusing characteristics of PD and the funny predicaments
that the disease has put me in.
My daughter, Stephanie, was age 6 when she announced to the family "I
know about the Easter bunny!" Her older brother was skeptical and
demanded more proof. Being careful not to disclose the secret to her
younger sister, Stephanie grinned and cleverly responded, "I know it has
PD is also providing lessons on sensitivity and on the need to show
compassion to people and their problems; their training having begun at home,
with me. My daughter, Becky, is especially empathetic. One fall day
we went to the "Apple Butter Festival" in a nearby town. The festival was
actually a huge craft fare with thousands of people and countless rows of
tightly spaced tents, housing the venders and their precariously displayed
merchandise. Navigating through the maze of people, strollers, tents, and
tables was a challenge for the average person, and a nearly impossible
feat for someone with PD.
After several hours of successful dodging, I had reached my limit. Heading
for our car, my feet suddenly froze as we came upon a sharp decline in the
road--another obstacle! As I stood assessing my options, a small handslipped
into mine and gently tugged me on. At age 10, Becky had the sensitivity to
recognize that her hills were my mountains.
PD is also encouraging my children to be creativity independent rather than to
depend on an often slow and inefficient mother. They have prove that "where
there is a will, there's a way." Before kindergarten, they each could tie their
own shoes, braid hair, make their own tuna sandwich(starting with the can), and
fold their own laundry. Before high school, my son could prepare a dinner,
wash a load of laundry and operate a sewing machine. PD has fostered an unusual
independence which has likelyaffected their self-confidence and self-esteem.
Finally PD is preparing my children for the future. In later relationships, they will
draw on their experience, growing up with parents that loved "for better, for worse
....in sickness and in health," a living example of unconditional love. And my children
will be well equipped to handle any unexpected challenges that may arise in their
lifetime. Quoting Becky(now 12), "If my mom can make something as hard as PD look
easy, I know I can handle anything that happens to me in my life."
I may not be the perfect parent, but fortunately, children are both forgivingand resilient.
Their ability to understand something as complex as PD always amazes me, which brings
me to a final story. At age 3, myyoungest, Gina, told our minister, "My mommy can't smile
very good because she has PD." Then she thoughtfully added, "But she smiles in her heart."
This is a reminder to all of us "imperfect parents" that it matters not so much that our
smiles are seen but that they are felt!
-Resist the temptation to depend too much on your child's help, which is neither healthy for
you or your child. Children are very willing and generous helpers, and like to feel needed.
But they need time to be nurtured rather than always playing the part of the nurturer. Tell
and show your child regularly that you deeply appreciate them and their efforts to help.
-Be open and honest with your child about PD. Welcome their questions, and don't
underestimate their ability to understand.
-Be specific concerning your difficulties, relating them to everyday situations.
Example "My fingers are stiff, and don't move easily, so it is hard for me to button
-Encourage your child to laugh with you at the many amusing aspects of PD. Laughter
is an excellent stress reliever for the entire family.
-Verbalize your feelings frequently, rather than expecting your child to rely on
misleading visual clues. Explain that people with PD may look sad or mad when they
are not feeling that way inside. Remind your child regularly that PD makes it hard
for you to smile. Let your child know that he/she makes you very happy even when
you don't show it.
-Be sure your child knows that he/she had nothing to do with your having PD.
-Apologize to your child when you have lashed out in misdirected anger at him/her,
anger that was a result of feeling frustrated by PD.
-Remember that how you cope with PD will be a powerful influence on how your child
deals with his/her own future challenges.
-If you are bitter or depressed much of the time, get help, if not for yourself, for your
-Engage your child in some activity that helps the cause of "easing the burden and
finding the cure." By setting aside part of their allowance money for a donation, or
offering their time by working at a PD fund-raiser, children will remain hopeful about
the future. Hope is the strength that keeps people moving forward.
Sandi Gordon is the author of Parkinson's: A Personal Story of Acceptance (ISBN 0-8283-1949-9)
-NOT APPLICABLE TO HD
Do not assume that your child knows that PD is not contagious or fatal. Be direct in assuring
your child that he/she can not catch the disease from you, and that people don't die from PD.
Here, for HD, something would need to be added that address their at-risk status. After the
"open and honest" above, for HD you might add:
Let them know that their dreams should never stand still because of the risk of HD. That their
lives will be enriched beyond their imagination if they pursue their goals and dreams, no matter
what the future might hold. That each and every day of life is a gift,not to be wasted.