My husband, Mike, and I watched the NeuroLifeOnline (NLO) Video, “How OFF Impacts Care Partners” with Dr. Melissa Armstrong, who suggested trying to establish “date nights.” Her presentation led to some healthy discussion, additional topics to explore in the NeuroLife library, and an unexpected date night. We found difficult topics become less intimidating with a candle-lit dinner.
“OFF” is one of those problematic topics impacting the patient and their care partners. As patients, we depend on medications to manage our symptoms and shorten our “OFF” time to try to maintain a sense of normalcy. Dr. Armstrong presented “OFF” as times when physical symptoms return. While they typically occur in the morning before taking medications or three hours into a dose, they can be random events or a failure—when medications don’t work.
The physical “OFF” times can be separate or in conjunction with cognitive “OFF” times, a new concept for me. I don’t think I experience apathy or disengagement as an “OFF” symptom. Mike agrees. We both feel that together, we have a sense of when I am “OFF,” and it is the return of physical symptoms, especially rigidity.
Care partners and patients have different perspectives on physical and cognitive “OFF” times. What a patient experiences and what a caregiver witnesses may be completely different. The “Parkinson’s Carepartner Survey,” a collaborative effort of Kyowa Kirin, PMD Alliance, and The Davis Phinney Foundation, reported that 88% of care partners indicated they often recognize new symptoms before the patient, yet “15% felt they were not able to correctly identify an ‘OFF’ episode.”
Admittedly, as patients, we sometimes hide behind a mask we create. However, there are other times when our symptoms go unnoticed, creating stress that permeates our lives, especially our relationships. They change.
Friends ebb and flow—some stay, some step away, and others return. However, family care partners are one constant, and managing those relationships is a delicate balance. A Parkinson’s diagnosis is a family diagnosis. Our spouse signed up for this—our vows say in sickness and health. However, our kids didn’t, and that’s unfair, but they may be more empathetic and better people as a result of our illness.
Ultimately, life was not supposed to be this way, yet here we are, navigating uncharted territory. It isn’t easy. For me, I want my husband to see me as his wife, my sons to see me as a mom, and my Granddaughter to see me as Nonni—NOT a Parkinson’s patient. At the same time, Dr. Armstrong discussed the importance of being pragmatic and tolerating uncertainties, and the reality is that I am a wife, mom, and Nonni…with Parkinson’s.
So, our takeaway is this: There is a difference between surviving and living. Living means understanding that there will be challenges during “OFF” times but finding joy during “ON” times. You may have to look harder sometimes, but perhaps it’s as simple as a candle-lit dinner on a date night.
Until next time, hug your care partners. After all, where would we be without them?
