Parkinson's, Stuttering, and Me

“You sound like yourself again.”  That’s what my mom said on the phone from the East Coast recently, and it was so good to hear her say that.  Eleven months after developing a speech impediment, I have regained fluency.  Honestly, it’s just a crazy turn of events, and I am kind of in shock.   A drug for treating Parkinson’s disease started the new chapter to this story.

Parkinson’s disease has come up four times in my search for a solution to my adult on-set speech impediment.  When I first began to notice my speech problem, I did what most people do nowadays: I googled my symptoms.  Parkinson’s disease, the chronic and progressive movement disorder that involves the malfunction and death of vital nerve cells in the brain, was one of the scariest thing I found.  The first neurologist I was sent to ran some diagnosis tests and an MRI to test for Parkinson’s.  He did not believe Parkinson’s was the problem.  Six months later, a second neurologist ran similar tests with the same basic conclusion.  Three weeks ago, the same neurologist returned to the idea of Parkinson’s and decided to try me on a drug that treats the symptoms of Parkinson’s disease, since an adult on-set speech problem can be a symptom.  I have no other symptoms of the disease.  

After a week of taking the medicine, my stutter was almost gone.  I was eased into the full dosage over that first week.  I have experienced a great amount of fatigue and daytime sleepiness, which is a common side effect.  I am now on that full dosage daily and trying to adjust.   I am taking advantage of the need for naps.  The neurologist will re-evaluate and access the situation early next month.   

I have hoped and prayed to regain my speech almost all year, but it has been hard to celebrate when the solution comes with caution, side effects, and more questions.  How long must I stay on this medication that provides a chemical to my brain? Since this treatment works, there’s the concern that I may have or develop Parkinson’s disease.   It could just be that my problem was caused chemically by medication to begin with, and it took a chemical to reverse it.  Right now, I am balancing the grogginess I feel from the medication, the shock, excitement, and confusion of regaining my speech fluency, and the fears and concerns of what this solution may ultimately mean.  

I finally sound like myself again, but I had grown so accustomed to the other sound, this experience is weird too. For the first time in eleven months, my thoughts and my speech are in sync.  It almost feels like I am in the middle of a psychological experiment that I did not sign up for.  My speech therapist says it is unusual to have such a drastic change in speech production, first to disfluency and now back to fluency, and the shock on both sides is real.  I have written on this blog about joy in the midst of sadness, and I am trying to focus on the joy in this now as well.  What an amazing gift to regain my speech fluency.

I read an article in Relevant magazine this week titled “When Life Doesn’t Go As Planned.” This quote spoke to a lot of my experience of late: “The one thing we all can control though is how we respond to being in the middle. When God seems distant, we can choose to have faith that He’s walking with us. When pain becomes suffocating, we can decide to reach out and share what’s happening with someone. When everything seems grim and never-ending, we can choose to delight in a quiet moment, a deep breath ... maybe a chocolate cookie. And when our hearts still can’t let go of wanting that certain outcome, we can choose to realize that no matter what happens we are of immense worth to God and to those who love us.  Despite how things might turn out.  We’re all together in the middle and God’s there too. Even if things are not fine, somehow they are.”

Recently, I was able to pray out loud for a friend one night.  It’s something I love to do.  And, I sounded like myself for the first time in so long.  There were times this past year, I wouldn’t even pray out loud because it was too much of a struggle, or I stopped saying “Heavenly Father” because I couldn’t get the “H” out.  I edited a video for church in the last couple of weeks where you hear me stuttering all the questions from behind the camera.  It was shot just a little over a month ago.  I am still in the middle of this story, and I cannot control what’s next: Parkinson’s meds, the chemicals in my brain, the side effects, the “what ifs.”  But, I can choose to embrace just how much God and the people in my life value and love me. I would not have been able to persevere in one of the most challenging periods of my life without the hope, grace, and love I have experienced from Christ and the community He has provided for me.  His words in 2 Corinthians 12:9, “My grace is sufficient for you, for my power is made perfect in weakness” have encouraged me daily for months. 

I am trying to delight in the moment, even in the middle of uncertainty.  Right now, that means enjoying the sound of my voice -- praying for a friend, speaking to students in my class, and even ordering at Chick-fil-a.  And, if you know me very well, you better believe there will be some chocolate cookies and really awesome food involved.