“Comfort – the enemy of progress” – P.T. Barnum
“Getting comfortable with feeling uncomfortable” – me
When I woke up this morning, I hung my feet over the side of the bed. The toes on my left foot were curled downward. (F#@k!)
I stood up, and the pain that I’ve been feeling for a couple of months now kicked in as soon as my foot hit the floor. I walked awkwardly into the bathroom and the pain soon disappeared.
But the curling thing is new and definitely unwelcome.
This is called Dystonia.
dys·to·ni·a: noun. a sustained or repetitive muscle twisting, spasm or cramp that can occur at different times of day and in different stages of Parkinson’s disease (PD); a common early symptom of young-onset Parkinson’s disease.
For close to a year, my left foot has been odd, awkward, unusual. My gait has changed somewhat and my foot no longer strikes the ground like it should…like it used to…like my right foot does.
PD is progressive. (Strange word choice because progress is usually a positive thing, but in the case of diseases, progressive is never a good thing!) And while I am aware that my condition will worsen over time, I don’t welcome any of these progressive changes.
I read. I learn. I try to figure out how to slow another symptom down…halting progress. This is what I found; “People with PD most commonly complain of a painful dystonia of the foot on their more severely affected side. This usually occurs first thing in the morning, when dopamine levels are at their lowest as nighttime medications wear off” (parkinson.org).
At my last visit to my neurologist, we discussed my left foot. We talked about the potential need to add another pill (carbidopa/levodopa 25/100mg) before bedtime. Seems easy enough, but there are negative side effects to increasing PD meds and I have always been encouraged to stay on the lowest dose possible for as long as possible.
I somehow feel as though I will be losing if I start to take more meds…and I hate to lose!
I’m left with trying to figure out a balance between taking more meds to reduce dystonia or pushing a little further to prevent other issues from taking too much medication.
Maybe I just need to get comfortable with feeling uncomfortable for now.
MJFF – Dystonia
Parkinsons.org – Dystonia
Pondering PD 