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Self-care and living with Parkinson's — what it can mean to you

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)

Jeans daily log

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.




Sara's graphic


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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blogger partner WPC 2016 in Portland