“On” and “Off” - terms commonly used in the Parkinson’s community to describe the times when symptoms are or are not adequately controlled by our medications. A situation that up until now I could conceptualize but had been fortunate not to have experienced for most of the fifteen years I’ve lived with this disease. But it no longer remains an abstract phenomenon…recently it has become reality, a harsh reminder that this disease marches on despite my protests.
Being “off” is a very strange feeling. In my case, my legs feel very heavy and not only am I battling the twisting dystonia in my feet but my hips no longer flex adequately. I plod along as though my joints were fixed by some invisible super glue - unyielding, rigid. Doing any fine motor activity such as buttoning my sweater requires great patience and begrudgingly occasionally some help from one of my always attentive daughters. Larger movements are also lost be it reaching for something or turning over in bed. Even my face gets in on the act, eyes wide, mouth twisted and open, an assault upon my vanity if I happen to glance in the mirror. There exists a fierce conflict between what my mind demands my body to do and what my brain will allow – a monumentally frustrating tug-of-war. A conflict that I am determined to resolve in my favor, but I struggle with now on a daily basis.
There is such a fine line between taking adequate doses of drugs to push your body into an “on” state and over replacement of the depleted dopamine which results in even more bothersome medication side effects. To complicate matters, the dosing regimen that worked so well yesterday, may not be effective today, being highly sensitive to variables such as sleep, stress and activity. Unpredictable and difficult to figure out but at the moment there is no choice.
Thankfully once I am able to figure out the correct combination of medications and they slowly begin to take effect, I start to feel the tense state of my muscles give a little, easing some of the discomfort. Gradually my movements become looser and increase in range, as much as my baseline flexibility will allow. I no longer walk with the stiffness of someone in their nineties and the anxiety and frustration that these “off” periods bring, start to resolve. Overall I feel more aligned and comfortable in my own body, having regained some measure of control.
These “off” periods, other than a cruel reminder of the progressive nature of Parkinson’s, also reiterate the need for adherence to self-care routines and medication regimens. There’s no stronger reminder to get enough sleep, exercise consistently and to reduce your stress, than literally being unable to function when you don’t. And the fact that missing or delaying a dose of medication can literally bring you to a halt, is also hard to ignore.
As I now look down at my fingers, stiff and typing every key except the one I’m aiming for, I am also reminded of a quote I once read “We give advice by the bucket, but take it by the grain.”
Although tremor is a very common symptom in Parkinson’s Disease it only one of many issues faced by those that live with the challenge of this illness.
What I fear most is not so much losing my independence (that I still believe I will maintain) but…