I’ve been carrying this Medical Alert card in my wallet since being diagnosed with Parkinson’s more than 11 years ago. Fortunately I haven’t had to use it.
When people without Parkinson’s ask me what it’s like when my Parkinson’s meds aren’t working effectively (or “off” as per On-Off Fluctuations in note below*), I tell them I feel like I’m drunk. I searched “drunkenness” on the web to discover that indeed there are similarities between being “off” with Parkinson’s and being drunk.
Wikipedia, the free encyclopedia, defines drunkenness as the “state of being intoxicated by consumption of alcohol to a degree that mental and physical facilities are noticeably impaired. Common symptoms may include slurred speech, impaired balance, poor coordination.”
Even without alcohol, my experience of being “off” with Parkinson’s is similar to the wooziness of intoxication from alcohol. Just like there are different degrees of drunkenness, there are different degrees of being “off.”
When I'm "off," everything is in slooooooow motion. I’m stiff like the Tin Man without oil, slurring my words, slow thinking and robotic-like. I walk slowly with shuffling steps and muscle-cramped toes. I would certainly fail the “walk the straight line” sobriety test in this “off” with Parkinson’s condition.
When I’m “off” with Parkinson’s, I feel like a drunk who is not only slow and clumsy, but also one who is edgy and jittery – a drunk who guzzled a Triple Expresso chaser in an attempt to sober up. I worry that others may see me in a negative light if they perceive me as being drunk when I'm sober. I get anxious when thinking that being “off” might become a permanent, 24/7 condition of Parkinson’s.
Everyone living with Parkinson’s experiences being “off” differently. For some, “off’ feels like having the flu, while others say “it’s like cellophane separating me from the rest of the world.” I’d like to hear from you about your “off” with Parkinson's experiences.
*Note: On-Off Fluctuations
Fluctuations that occur in response to levodopa therapy in which the person's mobility changes suddenly and unpredictably from a good response (on) to a poor response (off).