Self-care and living with Parkinson's — what it can mean to you |
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What is self-care or self-management?It is exactly what the individual words mean. Self -— an individual, namely you. And for "care" or "management," a visit to my thesaurus gave me the word: watchfulness, which suits this description perfectly. So let us accept a definition of "self-care" as watchfulness over yourself. Self-management can be very important for people with PD (PwPs) because managing any chronic disease is a lifetime task, and self-care can help you make your own decisions. PwPs learn to cope with Parkinson's disease (PD) and manage it socially and at the workplace. (1)
So what do I do?I pay attention to myself, and I keep a notebook where I jot down this information. How is my mood? Am I depressed? Have any new symptoms appeared? Have any symptoms disappeared? Are some things better or worse? And since I'm all for using technology whenever possible, I've searched for a smartphone or ipad application to use, but sadly have not found anything I would recommend yet. But I know that an app for PD self-care is being planned.
(1)http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3863859/ |
I also keep track of my cycling and any other exercise that I do. For my cycling, I have found an iphone app that tracks mileage, time, speed and has a GPS built in. Why do I bother?I am in a Phase 1 Gene Therapy clinical trial. While the trial protocol does not require a daily log, I find it is better for me to keep a log of my daily life with PD. Without some written notation, there is no way I will remember just when an event happened. So my documenting my symptoms helps me be a better informed patient and clinical trial participant.
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