I started having issues with my body not working properly in the summer of 2013 when I was still just 35 years old my eldest daughter was just turning 5 and my youngest girl two & a half. It was almost 10 months later I was told "I think you have Parkinson's Disease" by a neurologist and started a treatment plan of levodopa (the gold standard treatment) a medication that will only work if you aren't getting enough dopamine. Dopamine is what's responsible for smooth movements, thinking clearly, mood etc... and when brain cells that produce it die that's when symptoms of Parkinson's Disease start to show. On September 19th of 2014 a month before turning 37 my diagnosis was official. Then started the journey of figuring out how to live well with the progressive neurological disease, finding the right medication cocktail to move properly one which for myself seems to change once or twice a year due to progression. To finding balance between your exhaustion and exercising to slow progression to being the best parent you can despite the changes and the things you can and can't do. Which brings me to where I am today on the journey 3 years later.
My youngest daughter 5 year old Izabella is cute and she knows it, fearless, stubborn, funny and doesn't have a care in the world. My eldest Samantha is 8 years old, incredibly smart, perceptive, sensitive, outgoing, caring and a 'thinker'. She takes it all in, constantly watching, listening and feeling what's going on around her. It makes her a very compassionate, sweet, thoughtful little girl and it also makes her worry. Prior to my diagnosis when they couldn't figure out what was wrong (PD isn't typically on the radar for a 35 year old) there were some pretty challenging days. Days where I struggled to get out of bed and when I did walking was difficult & just didn't 'look' right. Days where my fine motor skills were virtually non existent and days of frustration when my body wouldn't cooperate. It was difficult to be a Mom and hide these things from the kids when Dad works on the opposite end of the country and it was just me. There were days I tried my damndest to hide it but failed greatly. Those were the days my sweet Sammy would cry herself to sleep worried about Mom thinking I was dying. It was heartbreaking and hits you to the core.
My sweet Sammy doesn't miss a beat and despite my best efforts to hide days where I may be a bit "off" she sees it all, more than likely anyone else. If I'm having a rough couple days she jumps in to want to be Mom's helper, if she see's me doing laundry she'll tell me to go sit down, that she'll fold it. She'll empty the dishwasher and fill it those kinds of things. Sweet right? Well yes and no. Don't get me wrong, I'm a firm believer children should have chores and learn responsibility and mine have always had age appropriate chores. However when she wants to take over these types of things because she feels I'm unwell that day it's sweet yes, but breaks my heart at the same time for the reason she's doing it. Recently I had an off week, it's rare that happens my PD is managed very well thanks to a boat load of medication I take at extremely frequent intervals (18 pills a day, 3 prescriptions and taken at 8 different times throughout my day). As my off week continued she became more helpful around the house and then about 6 days in I had a gallbladder attack and ended up having to go to the ER. This just seemed to be the icing on the cake that caused total meltdown. In the weeks following her school work started to be affected, she was being sent out of class for disruption, she couldn't focus and was regressing in her school work by a grade sometimes two levels. All things very uncharacteristic of her. At home she would either bawl hysterically or scream in total anger at me. Her behavior spiraled and she started doing things she knew were wrong and became increasingly disrespectful and rude. This is where being a parent was the toughest ever, disciplining her for things that she did that were unacceptable, but yet knowing it was my fault she was hurting and acting out. I would be a Mom and then turn around and go bawl my face off out of sight. The guilt was the heaviest in my 8.5 years of parenting that it had ever been. She wouldn't talk to me at all, where as in the past after a day or two I could usually get her talking but no such luck this time. I spoke with the guidance counselor at her school we decided on a plan to try and help her, her teacher was & is amazing trying everything she could to get her focused and back on track but it was an uphill battle. And then when she finally opened up and started to talk came the guilt overload. She finally sat with me one Friday evening after her sister went to bed, we cuddled and talked about all the things going on with her and she admitted she was scared and worried about me and then she proceeded to remind me of all the things I used to do with her like building sledding tracks in the backyard from the snowplow pile and sitting down to colour with her, and, and.... All things I no longer can do because of either Parkinson's or the Dystonia in my hands. So we discussed the fact that she is right Mom can't do those things anymore and it sucks but that instead I try and replace them with new things that I can do. Like we go to the movies, or we play music together (she's learning piano) and in the summer we go camping alot etc... all things we never used to do much of but now we do cause they are things I'm able. We talked, we laughed and we cried together.
I've always shared PD with my kids, there's no hiding it. But I've never gone to great lengths to explain the disease much beyond what was necessary. However we hit a moment where a bit further explanation was clearly required. So I explained to her that yes there are things she remembers me doing that I can no longer do because of Parkinson's. But that I do my best to replace them with new activities and that as time goes on there will be other things I'll not be able to do because PD does get worse over time. But that I promise that as that happens I will continue to find new things we can do together to have fun. She asked questions about why it gets worse, how fast it'll get worse etc... all in all one of the most difficult conversations I've ever had with her. So we talked about all the things I do when her and her sister are at school. How I go to bootcamp to exercise and I take horseback riding lessons and fiddle lessons and how I turned the garage into a music room, and the various appointments I go to for things like acupuncture. I explained to her that exercise keeps me from getting worse, that the more I do the slower that'll happen. How Music Therapy helps with my memory and it's other benefits. Essentially we discussed how all these things are what I do to take care of myself so that I stay well and can continue to be the best Mom I can be, that these things are now Mom's full time job and that I work hard everyday to do everything I can to stay well and be the best Mom I can be. We of course discussed her behavior and how if something is worrying her she needs to ask questions and talk to me not bottle it up and behave badly and many other things.
I'm thankful to say that things have been settling down in this regard. She continues to see the guidance counselor every couple weeks and no longer seems angry about that and has connected with her and is happy to tell me the days she goes. Her school work is improving and things are settling back into "normal" again but it was nearly 8 weeks of hell. I don't think I ever cried so much in my life as I did watching my poor sweet girl suffer, worry and hurt while I tried desperately to help her. For those of you parents reading this, you are not alone in your guilt or worry about your kids well being as you try to manage this new life and disease. I'd say don't be so hard on yourself and remember what a great parent you are because if you are worried about it then it matters to you and you care. If you're taking steps to try and shelter your kids, or help them through while on this road then you are being proactive and that's fantastic. But I know hearing those things and actually not having the feeling that you are totally screwing up your kids is easier said than done. There is nothing worse than feeling like you are the cause of your child's pain and the feeling that you are screwing this parenting thing all up. However, we are not. We just have to keep doing the best we can and taking things one step at a time and dealing with one thing at a time. If you are struggling with giving things up with your kids it's ok, just find new ways to be engaged that are within your abilities and talk to them. And hang in there, we can do this!
Here are some links to other posts, articles etc... on parenting with PD you may find helpful.
Parenting with Parkinson's:
Guilt is to Motherhood as Grapes are to wine:
Parenting with PD, an interview with former NBA player Brian Grant:
Article in a local paper: