Last week I went in for a checkup with my Movement Disorder Specialist. He evaluated me, asked me for my autograph and beamed with delight. You see, I’m not his average patient. Not because I’m half their age, but because he’s seeing positive results in a non-curable, degenerative world.
As we evaluated my meds, we discussed my current trifecta’s effects on my increasing dyskinesia. I found even cutting the Sinemet (the staple Parkinson med that contains L-dopa, the precursor to dopamine) in half was still too much for my body to handle at once. He told me the Azilect (a drug thought to slow the progression of PD) and Mirapex (a dopamine promotor) were aiding in the dyskinesia and to stop taking both. He said discontinuing Mirapex really shouldn’t matter since I was only taking a baby dose of a half milligram three times a day. I shook my head and said, “No. I’m cutting those in half as well.” He looked at me stunned, chuckled and just like that, discontinued all current medication. He then simplified the routine to Stalevo (slow release of L-dopa) and Amantadine to address the dyskinesia.
Finding the Stalevo in only 50 milligrams was difficult to start, since it’s half the dose most people start with. But, once finally on it, I thought I had it made. No tremor, my dyskinesia disappeared. No involuntary movement!
Only one day off my previous life source of medication for almost 2 years, anxiety began rearing its ugly head. Anxiety that felt so heavy it hurt to breathe. Fear of the unknown, feelings of inadequacy and altogether feeling lost in this ugly, cruel world took over. After a week and a half of an exercise sabbatical to nurse my shoulder, I decided I needed therapy to release some of this anxiety. I headed to the track after going to the gym. But, it felt as though I was running with another person on my shoulders. It felt as though I had never worked out in my life before. The weight continued to weigh me down as the week pushed forward. I found myself crying throughout the days.
Friday, a day that is usually a day to rejoice, felt dark in my eyes. Friday meant a routine weekend without my child. Throughout the day, fearing the time without her grew inside. I couldn’t wait for the school bell to ring. I needed to hug her. I needed to hold her.
When we got home, I set up a game to help with schoolwork. As a normal child, she didn’t want to “play school” after a full week of being in school. I told her, I just wanted to play with her, and she needed to be thankful, rather than always complain.
Then I packed her up, and handed her off to her father. When I hugged her goodbye, it felt as though it was for the last time. I got in the car, covered my face with my hair, and broke down in tears. I thought I was coy hiding it. But, she saw through my strands of blonde and ash.
I received panicked text messages saying she was upset, which made me hysterical. What is wrong with me? Not only are these meds messing with my head, but my precious daughter’s as well.
I realize that I have an uphill battle, and maybe I am very far in denial, but I do not feel that Parkinson’s will win this fight! I now concede that my neurological medication is making a huge impact on my state of mind. I’m unsure if this current state is because I am thinking more clearly at reality, or dwelling on the uncontrollable past. Regardless of semantics the innocent bystander is my child.
I called trying to calm her down, which only made me worse and didn’t make her better. The knight who saved us both, was my ex-husband, consoling her and talking me down. I explained to him that I didn’t know what was wrong with me, other than my switch in medication.
I went back for more therapy, this time taking to the ninja gym. I gave them ample time to make it home, before calling to check on my daughter. In the sweetest, broken voice she said, “I’m the reason. I’m the reason you got so upset. I hurt your feelings by not wanting to play the game.”
I explained, “Honey, Mommy switched medications, and my medication is to blame for me crying. You, my darling, are not at fault. But, you are right, you are the Reason. You are the Reason I wake up every morning. You are the Reason I get dressed and go to work every day. You are the Reason that I laugh and sing. And you are the Reason that I’m alive today.” And with that, I told her to never blame herself for Mommy’s moods. I told her to love on her daddy, have a wonderful weekend, and I would think of her always and forever.
I will probably be labeled, and criticized for being so open. Why do I write my innermost thoughts and feelings for all to see? I will be judged as a Christian and a mother. I shouldn’t want to be her friend. Nor should she be the Reason that I am here today. But, soon she will learn about Santa, and the Easter bunny. And she’ll wonder why we lied. But, we tell those stories to our children to teach them about faith in things we do not see or cannot touch in ways they will understand.
Just like those stories, I believe God sends us angels, to watch over us from Earth. I had a cat for 21 1/2 years. One time when I was crying, as a little girl, I asked that kitty to promise to never leave. That Earth Angel licked away my tears and meowed. I took that as her promising. My first Earth Angel left this earth when I was pregnant with my second, and I took that as a sign she knew I would be taken care of. I believe our Earth Angels are put here as reasons to wake up every morning, get dressed every day, and laugh and sing. They teach us about God’s love for us, so that we may understand.
I’ve learned the hard way, NEVER switch neurological meds cold turkey. I should have tapered. According to my neurologist, even though I was taking such a “baby dose”, I was having withdrawals much like an addict. This is a lesson I won’t soon forget. I’m already on my way back to my normal self. For those of you switching up your meds heed my warning. I hope those single moms who are struggling to find balance and feel like you are drowning, know you are not alone.
This is life. It is filled with ups and downs, suffocating and joyous moments, and times when you feel as though you’re carrying the weight of the world, but remember your Reasons. Know this time will pass. And never let a moment pass when you don’t thank God for giving you Reasons to live.