Living with Parkinson's a Moment at a Time
For most of us diagnosed with Parkinson’s, we’ll have Parkinson’s as our constant companion for many years. Throw in that it is a progressive disease, with almost all treatment being palliative, and most people start feeling depressed, anxious, and apathetic. It’s really easy to give up, sit by, and wait for the next Parkinson’s manifestation to appear.
I have been in that depression, anxiety, and apathy pit multiple times and can easily get myself right back in it. Giving in or giving up is all too easy. I experiment with a lot of different ways to escape the "give up" mode. These are among the practices that are currently working for me.
Seeking a positive attitude
I try not to obsess about negatives in the future. Example: There’s no cure. They’ll either find a cure or they won’t. There is little I can do to affect the outcome. If I can’t fix it, I let it go.
I accentuate the positives in life. I make a list of the positives in my life (for the naysayers, there are positives, you just have to look) and review that list every morning. I think about actions to take to insure the continuation or achievement of those positives.
I begin each day by practicing at least one relaxation technique. Meditation, muscle relaxation, deep breathing; they’re all mood elevators. I eliminate "Shoulda, woulda, coulda" from my thinking. You can’t change the past; you can only learn from it and change your current or future actions.
Finally, I keep engaged with my old social circles or find new ones. Joining a Parkinson’s exercise group is a way of forming a new social circle.
Being active and engaged
Can no longer engage in old hobbies? I rethink my activities. I ask myself, "what did I enjoy about the old hobbies?" and make a list. I find new activities that can offer the same satisfactions and I don’t stop looking until I find new hobbies. Think outside the box!
When it comes to exercise, most of us can’t face it alone. Finding a Parkinson’s exercise class has helped me. Depend on each other for motivation. Think you’re beyond the ability to exercise? Think again! The wheelchair group right after my exercise group has been a strong motivation for me. If they can do it, what’s stopping me?
I set realistic goals. Whatever I'm thinking of, it’s probably too big. Example: My goal is to lose 25 pounds. Think I can achieve that goal? Millions of us have tried and failed. It’s too big and takes too long.
Keep the goal, but set incremental goals that are measurable and achievable. Example: I will lose 25 pounds. I will do it by losing a pound a week, exercising, and changing my caloric intake. I’ll weigh myself twice a week and record.
I think in shorter increments. I exercise with a personal trainer, a physical therapist, and with other friends in a Parkinson’s exercise group for 5 sessions a week. I pedal a recumbent 6 days a week. How did I, a person who has always hated exercise, end up doing what some say is a crazy amount of exercise? I started small with a Parkinson’s Power Up exercise group and found I liked the social aspect and responded to the idea of a mutual obligation to be in class.
Narrow the horizon
I added my personal trainer because I wanted to improve my execution skills and challenge my abilities. I see a neurologic physical therapist because he helps develop new neural pathways and pushes me physically. I added the recumbent as I set a goal to lose weight.
If I had tried this much exercise all at once, I wouldn’t be doing any of it. Narrow the horizon. I don’t think about doing 10 or 12 exercise sessions a week. I think it’s Monday morning and I have a session with Kristin. If for some reason I’m not looking forward to my session, I think of it as being over at 11.
It's a process
Do the possibilities I’ve listed guarantee me from dipping back into depression, anxiety and apathy? Sadly, no. Parkinson’s is a very slippery disease and a lot of hard work.
However, I have learned, when I find myself heading back to the couch, to forgive myself in the moment, change my goals, and shorten the time unit for measurement success.
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