Life on Parkinson's Medication

Have you ever played the game Catch Phrase? It’s the fast-paced game where you describe a word or phrase to your team and try to get them to shout it out before the timer runs out.  It’s similar to the old television game show Super Password.  I played the game for the first time in a long time recently at a retreat.  Mid-game, I was overcome with joy at the ability of my thoughts and speech to be in sync.  A year before that weekend, I had just begun the process of trying to figure out what was happening to my speech when I developed an adult onset speech impediment.   There’s no way I would have played that game at any point last year.

I have moments of joy like that Catch Phrase moment often these days: saying my order quickly at Starbucks, teaching a lesson in class that I rearranged last year to avoid longer stretches of lecturing, speaking freely at back to school night, random conversations with cashiers, talking to co-workers I do not know as well in the copy room, just to list a few.  For five months, a Parkinson’s medication has allowed me to speak freely again.  It’s difficult to express how exhausting it was to struggle to form words every time I spoke for almost a year.  Avoiding conversations was partly because it was embarrassing and discouraging, but mostly, it was to save my energy for the conversations that mattered most. 

The speech impediment literally changed how I communicated on every front.  I almost never spoke in meetings.  I rarely called most friends or left voicemail messages.  Parties and big dinner gatherings were painful.  I drew closer to my closest friends in town and saved my struggle for the most life-giving or critical conversations.  One of my co-workers recently said to me, “I feel like you lost your voice in the conversation.”  Another friend echoed those comments, and said, “It’s like you’ve now gotten your sense of humor back.” Timing is a big part of humor and jokes, and timing was not my strong suit last year. 

So, I am finding my voice again and rediscovering the joys of conversation, socializing more in groups, and trying to overcome my new fear of public speaking.   Unfortunately, the solution to my speech problem has come with a price.

Three times a day, I take Parkinson’s medication.  The average person who takes this medication is 77. 

I see a neurologist regularly.  The neurologist does not believe I have Parkinson’s disease, because I have not shown other symptoms of the disease.  There is no clear test for Parkinson’s, so she is continually monitoring my medication and progress.

If I get off my medication schedule by as little as three hours, the speech impediment begins to return.  Something is chemically wrong in my brain, and I need this medication to speak clearly.  It’s a little scary and frustrating. 

The worst part is the medication makes me almost constantly drowsy.  It’s kind of like having jetlag all the time.  Sometimes, it’s like jetlag plus a Nyquil hangover.  My sleep patterns are all over the place.  Caffeine and herbal remedies help, but minimally.

I feel like I am choosing between being Porky Pig and Sleepy Dwarf.  Both are endearing characters, but not exactly the animated characters of choice. 

My goal each day is to do whatever I have to do to maintain the quality of life I desire as much as possible.  Some days, that means a nap whether I want to or not.  Some days, that means going to bed as early as 8:30pm.  Some days, it means having a co-worker watch my class while I take a walk around campus to help break through a rough moment of drowsiness.   Some days, it means I stay at home and rest.   Some days, it means I just push through to be able to do what I want or have to do.  It is a new normal.

In the midst of it all, there is a thankfulness that’s hard to describe.  Last year at this time, I felt silenced and discouraged.  I was in speech therapy and trying to relearn to clearly say simple words and phrases.  Now, I feel communicative and hopeful.  One of the greatest gifts I have discovered in this situation is a fighting spirit and perseverance that I know could only come from God.  In my weakness, He is strong (2 Corinthians 12:9-10). I read a passage recently from Henri Nouwen’s “The Dance of Life” that describes how I am trying to live in this new normal.   

“I have to learn to ‘steal’ all the joy there is to steal and lift it up for others to see…I don’t have to wait until all is well, but I can celebrate every little hint of the Kingdom that is at hand.  This is real discipline.  It requires choosing for the light even when there is much darkness to frighten me, choosing for life even when the forces of death are so visible, and choosing for the truth even when I am surrounded with lies.  I am tempted to be so impressed by the obvious sadness of the human condition that I no longer claim the joy manifesting itself in many small but very real ways.  The reward of choosing joy is joy itself…There is so much rejection, pain, and woundedness among us, but once you choose to claim the joy hidden in the midst of all suffering, life becomes celebration.  Joy never denies the sadness, but transforms it to a fertile soil for more joy.”

Today I am not denying the sadness of the situation, but celebrating the joy in the returned gift of my speech.