Raising children in the midst of Parkinson’s disease By Dr. De Leon

I have often said that being a neurologist was infinitesimally much easier than raising kids. Even in the toughest crises of life and death situations, I often felt much more at ease dealing with some of the complex issues of medicine /neurology than being a mom.

After all, I spent 12 years training to become a neurologist but only 9 months to have a baby in which a manual was not even included. All of you who have children know from experience that as soon as you figure something out, there is a new challenge or new stage and you have to move on and start the learning process all over again. ( much easier if you have more than one child I assume- can use learned experienced but then again every child IS VERY DIFFERENT and SAME RULES DON’T ALWAYS APPLY!)

Now, imagine you are a parent with a chronic illness like Parkinson’s in which your life is in constant flux then throw in the mix of having to rear another human being who is completely and solely dependent on you for ALL their needs when most days you can’t even take care of yourself…makes for a very interesting life to say the least!
What if you had a “special needs” child – you would have to be a magician to be able to juggle everything…just thinking about it wears me out!
I think I need a nap…
But, as more and more people like me and you are diagnosed with young onset Parkinson’s disease or even typical PD (since some of us are waiting longer to have children) this issue of how to raise children in the midst of Parkinson’s becomes an extremely crucial one!

Many questions come up?…..

Will I be around to see my child grow up?
Will I be able to partake in their activities?
Will I be able to have (more) children?
How do I tell my child I have PD & should I tell?
These are just a few of the many questions….

First, of all chances are that you will be able to see your child(ren) grow up since according to current medical thinking having Parkinson’s disease does not necessarily shorten life span especially if you start treatment early on and are followed by an MDS (Movement disorder specialist) or neurologist. Studies have shown better quality of life when treated by one of the latter..

Second, again because although there is No cure for Parkinson’s , there are a great deal of new therapies including medications and surgical procedures along with holistic methods like exercising , cycling, yoga etc. which may not only maintain function but improve allowing you needed flexibility to care for your little ones.

Thirdly, you should always tell them..
There are many books available nowadays to help guide your conversation with your loved ones whether they are 3 or teenager or even adults.

I was diagnosed with Parkinson’s when my daughter was 6 years old but before then my grandmother who also had PD lived with us…so my child has practically grown up with Parkinson’s disease since she was a toddler…

Here are a few things that I have learned through the years of raising my child and dealing with my own personal fight with PD. Perhaps some of my insights may be of help to some you who have children or grandchildren living with you.

The first thing, never underestimate your children’s intelligence no matter their age…they may not understand everything but they are smarter than you think and they will always get cues from you as to what’s going on….and if you are not upfront and explain to them at a level appropriate to their age they will be potentially traumatized, and forever worried about you…which may lead them to act out, get depressed, become overly anxious and clingy and if very young extremely protective which may in turn lead to separation anxiety. They may also develop night terrors or nightmares…and even become withdrawn or aggressive.

Be upfront with them…
Act out your symptoms with them make it a game if they are toddlers or under 7…talk about the ” wiggles” or the “shakes” or being taken over by a ” slow” bug. Tell them that with their assistance some of these symptoms can get better…walk faster if they hold your hand for instance.

Initially, since my daughter was only 3 when my grandmother died when I got diagnosed with PD she became very upset every time I left…come to find out that she was afraid of me dying because all she ever knew was that grandma had “Parkinson’s” and subsequently she went to heaven. So, when she heard me tell my husband I had Parkinson’s she assumed I would be dying soon as well…
I had to explain that grandma died because she had cancer and was elderly not because of the Parkinson’s and “mommy” was going to be around for a very LONG time -Yes! even until she went to college and got married!
I also explained I needed a little vacation from my work ( because me closing my office and letting go of my employees which were like family was very difficult for her too!) so that I could get better and spend ALL my time with her doing “mommy things” & Fun things…which she immediately embraced and asked I don’t return to work until she goes to college!

I said this was great, but I would need her help from time to time because sometimes I might just be too slow to get dressed or shaky to do her hair or carry her or put her shoes on but that did not mean I did not love her or want to do things for her and with her! I deputized her as Mommy’s ” little helper.” She was happy with that…
Now she had a role…and a mission
Encourage whatever creativity they might have….
she wanted to help me raise Parkinson’s awareness so she drew a tulip stating: ” I am not shaky, I am dancing!”
she Now Knows that mom may be slow in the feet (walking) but she is FAST in her HEAD! and even though I can’t keep rhythm or beat very well we can still dance together and make music together!

Encourage spirituality as well. Use this as a means to teach them values and importance of faith, helping others and having positive outlook in life always (Hope!). Our life is define not by what obstacles and challenges come our way but how we handle them….I reminder that is always important to have a dream and never give up no matter what …she likes story about Walt Disney who was rejected by 300 banks before he got a YES! when trying to build Disneyland.

But, the Most important thing in raising a child with any chronic illness is to maintain a sense of normalcy as much as possible in their life…your problems should not be their problems…they already worry …( tell them PD is NOT contagious and just because you have it DOES NOT mean they will too!) ….let them be children…allow them to participate in activities in and out of school, have friends over, teach them new things, spend time with them , show them unconditional love, find games that both you and they can play…if your down- a board game, coloring/drawing, guessing games ( especially funny if your voice is off, are dyskenetic or having bad tremors) ,cards (especially if you use cookies or alike to make things interesting), or dominoes.

if your having a good day go for a walk with them at park, ride bikes together (especially in tandem), or go for a swim…all of these activities will not only help you bond but will also help your PD as well.

Laugh at your symptoms and clumsiness together…( ask them to show you how they see you then ask them to tell you how they feel about you…you might just be amazed at what you might discover! After all, laughter is the best medicine…my daughter thinks of me as a silly, crazy, fun, smart, wild hair mom who sometimes just can’t get right…

Get them involved in your Parkinson’s projects or any other projects…my daughter and her Girl Scout troop planted tulips one year to raise awareness in our community…another time she made bracelets for me to distribute at one of my talks …to raise awareness…

Help them do their homework although it may be more difficult some days than others…. some days my brain simply cant do math so, she knows now when to ask help with that subject and when to stay away..
Play Wii together especially brain academy and balance games not only will you have loads of fun as you struggle and make complete fool of yourself but you will also be enhancing your neuro- connections and improving your PD symptoms ..I guarantee it!

Try to make their favorite foods when you are able to ask for their help…they will enjoy making a mess with you if your having bad day and will learn something when you are having good day either way they will have fun and appreciate the effort while building their self esteem.
They will know that PD or No PD they are number one!

Finally, even when they are teenagers or young adults -Don’t forget they still need you, miss you and need your attention in their lives..
So, DON’T let Parkinson’s RULE your life..is only a part of it …it does not define you …there is a life outside of PD…make it a grand one!

Remember, our children are our greatest assets!

What are some of your concerns?
What advise do some of you have ? feel free to share……

Here are some books which may help you as parents or grandparents broach the topic with your children ..Read them together…these are some of my daughter’s favorite books on PD (ages: toddlers to young teens):

” Who is pee dee? :Explaining Parkinson’s disease to a child” by Kay Mixon Jenkins ( http://www.whoispeedee.com)
“Monica, Mama, and the Ocotillo’s Leaves” by Adele P. Hensley ( http://www.thewordverve.com)
“I’ll hold your hand so you won’t fall: a child’s guide to Parkinson’s disease ” by Rasheda Ali (www.meritpublishing.com)

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Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com
may also contact me at
deleonenterprises3@yahoo.com