Everyone has their own way of dealing with it. I know some parents who have done their very best to hide the fact they even have PD from their children. A wait it out method of wanting them to be older when they are told so they can understand the scenario better. I know others who very much involve their children in their journey and use it as a life lesson to encourage their kids to participate in fundraising initiatives for the cause. There are various other scenarios as well and the fact of the matter is that nobody knows their own child (or children) better then them. So I do not think there is a right or a wrong way to go about parenting with Parkinsons. You simply have to find what works for you and your family. That being said, in my own experience I've come up with a list of suggestions of what I feel are important while parenting with this disease, but again not everyone's situation is the same. Take it as some 'food for thought'.
1. Don't keep your children in the dark.
You clearly notice the symptoms of your Parkinsons hence ever going to a doctor to begin with to end up with a diagnosis. Don't assume your children don't see your issues. They are smart, VERY smart. In fact I think children are much more perceptive than adults are and often very quickly sense when things are wrong. So imagine them noticing some of your 'issues' despite your best efforts to hide them and what goes through their little minds of wonder. Be honest with them, find age appropriate words to try and explain to them that you have Parkinsons and what that means so you can try to alleviate any fear they may have.
2. Stay engaged with your kids.
This is so important. Think back to what kind of a parent you were before you had PD or before your symptoms started to arise. What kind of Mom or Dad were you then? Were you the parent who got down on the floor and played with your kids, or always took them to the park, or played catch with them all the time, or never missed a soccer game? Then keep doing it! Don't get me wrong, there are things I used to do for my kids like building luge tracks in the backyard from the pile of snowplow snow in the winter that I no longer can do. BUT, that does not mean I can't do other fun things in the snow with them instead. Last winter we did snow art with food coloring instead, they loved it and we still had our playtime in a form that was much more manageable for Mom.
Put yourself in your child's shoes, if you were always with them, playing with them and engaged with them before PD imagine how they feel if suddenly you're always on the couch and pawning them off on their other parent with little interest or ability to still have fun with them? Your child may know you have PD and understand to some extent what that means, but a child's mind doesn't rationalize the way ours do. The last thing any parent would ever want for their child is to have them think that Mom or Dad doesn't love them anymore. The reality of going from an engaged parent to a lump on the couch is that they may very well feel like they are no longer important to you...
3. Make NON Parkinsons memories with them.
I am a big believer in my girls knowing that Mom has PD and being involved in fundraising for it and raising awareness about the disease. I think there are valuable life lessons in these initiatives and having your kids take part. However, you do not want the only time you spend fully engaged with them centering around the fact that you have the disease. Make fun memories with them on your good days. Of course there are going to be days that PD takes control and you're struggling and that's not the time to choose to go on a nature hike with them. However on the better days take them to the beach or the amusement park or the zoo, have a family game night. Whatever it is that you know will be fun and exciting for them. It doesn't need to be something that costs money, children want our TIME, attention and love. Think back to what some of your favorite childhood memories were? Chances are they were simple pleasures like a road trip or baking with your Grandma or going to a farm to see the animals. Whatever you do, do not let your kids grow up when the only memories they have of you are ones of you crashed on the couch or locked in your bedroom. Not to mention there are studies out now that prove that puttering around and staying busy can actually help PD symptoms. So get on the move with your kids, play with them and make memories and enjoy their cuddles and laughter.
4. Don't let the guilt take control.
On those days you just don't have it in you to 'play' or be on the go with the kids, don't beat yourself up. I often will have a crash day where I'm not the most fun Mom in the world. It sucks and it makes me feel guilty. However on those days I try and focus on the fact that I really do try my best to be engaged and an active part of their lives and memory banks. So, explain to them that you're not feeling the greatest today and that you're sorry but you just don't feel like going to the park. That you need a bit of a down time or a rest day and you promise you'll do something fun with them later in the week. (Don't promise tomorrow, because we all know sometimes a bad day can be multiple bad days). Be realistic with your activities, promises and abilities. Do not let guilt take control of your parenting methods and let them become holy terrors and get away with murder because you feel guilty. That won't help them or you in the long run. So instead be honest and try and give yourself a break, being too hard on yourself won't make anything better.
5. Do not let your spouse become a single parent.
Rely on your other half as you need to. When you just can't get to that hockey game because you know you can't handle the cold that day or you're just exhausted, send your spouse instead. That's perfectly ok. However, do not rely on them to the point where they are the only engaged parent in your kids lives. Co-parent in the ways that you're able to and make necessary adjustments but do not stop being a Mom or a Dad. I often say "I am a MOM first, Parkinsons comes second" and I try my best to live by that. If you give up parenting because you're depressed, which is a common PD symptom or because you don't think you "can" do those things anymore you are only going to cause resentment in your relationship. The last thing you want to do is make someone you love feel hurt or resent you for not at least making the effort to chip in, even if it's not the same ways you once did. My husband works in a different province, this can be very hard sometimes particularly on the bad days. However, I think it's also beneficial for me as a Mom, because I do not have the choice of relying on him to do everything for the kids or around the house. I appreciate him when he is home for everything he does do to give me a break. So don't expect them to do it, be appreciative for what they do, but always chip in!
The reality of life is that sometimes things just don't go the way we planned them or expected them to. I can say with certainty that no one with PD ever thought they would live a life trying to manage the disease. Most definitely no parent out there thought or had hopes and dreams of being a parent with Parkinsons. However, that's what has happened for many of us. We cannot change that, but we can change the way we deal with it moving forward. You can still be a great Mom or Dad, a loving wife or husband and a caring friend to those you love. Your children look up to you, love you unconditionally and simply want you to love and be there for them. Do not let Parkinsons take that away from them, nor the joy it will give you to be their parent! Parenthood is a gift, one that some people long for, so don't take it for granted. Parkinsons has already taken enough from you, don't let it take away the greatest job in the world too....
I am a MOM first, Parkinsons comes second... and it always will!
Have fun with them! Even if it means just watching them play in the snow in the winter, or taking them for an ice cream in the summer! Sometimes the little things are all that matter!
An article I was interviewed for recently about Parenting & Parkinsons:
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