Leonore Gordon has lived with Parkinson’s disease (PD) for nearly 15 years. As an educator, poet and mental health professional, she offers some lesser-known tips for caregivers and people living with PD.
Also see her informational blog at www.alphapdny.blogspot.com.
• For those working with people with PD, be aware that our newly impaired attention spans and short-term memories may require keeping us focused and sticking to a task.
• When PD patients say “I’m going off”, it doesn’t mean they’re about to act crazy. Their medication is wearing off and soon they’ll barely be able to move. Likewise, “I’m frozen” doesn’t mean you need to turn off the air conditioning or close the windows, it means we can’t move at all.
• People living with PD may find it difficult to transition between activities and initiate a new activity. This means we can get “stuck” or feel immobilised while engrossed in any activity, e.g. reading a book, leaving the house or watching television.
• Gentle but very firm encouragement helps to shift people with Parkinson’s out of being stuck. Remember we’re not trying to be difficult or stubborn. Criticism or personalising our difficulties won’t help getting things rolling.
For people with Parkinson’s disease:
• Symptoms of PD may appear intermittently throughout the day and can be both preceded and followed by hours of apparently being symptom-free.
• PD presents challenges in things like multi-tasking, decision-making and prioritising. Make daily to-do lists and check off what you’ve accomplished.
• Be realistic and don’t over-plan your day.
• You may need to shift familiar family roles – don’t be afraid to discuss things openly.
• PD reduces your emotional resilience and you may find it difficult to manage your stress. Join a support group or get counselling if you need it.
The bottom line is that, despite the challenges of Parkinson’s, you can take charge and improve your life at every stage by ensuring you have the right specialist, medication and treatment strategy in place.