… the greatest challenge… in my opinion.
This summer I have not gone biking … at all. I kayaked three times. I walked to the end of our trail twice. I was busy helping a friend – very busy – until midsummer. But even so … looking back at that record is sobering. I have not written more than a handful of letters … in six months. I have got myself down to the pool once a week … half the time. And I haven’t played my keyboard in months.
What gives? I have the ability and the strength to do any of the above. Well … playing the keyboard takes a morning brain. Still …
Just like at times my legs get frozen in place … so does my ‘get up and go’. I was relieved to read that apathy is a biological brain symptom with Parkinson’s. Relieved may seem like a strange choice of wording … but I was glad to find that others noticed this too. And that it isn’t just laziness or a lack of willpower. The part of the brain that regulates the drive to initiate action, or pleasure seeking behaviour … is off duty.
Over these past two years, when I have been dealing with Parkinson’s changing my thinking and affecting my motor movements, I have remained ‘busy’. I kept calendar journals to list what my goals were for a day AND to record what I did each day to make it easier to remember. I signed up for courses at the Seniors’ Centre that had me out three days a week there. Gradually that has eased away. I would miss a session or two … signed up for less the next session … and then have let that go for now.
I thought keeping myself ‘free’ of a schedule this year would let me hike, bike, paddle and swim to my heart’s content. Postponed fall courses as I wanted more ‘summer time’ freedom.
What really happened was I found it almost impossible to be in our big room without laying on ‘my’ couch. And when I am there I am either scrolling through news sites, reading emails (practically zilch from friends – more often ads), and playing games. Truly – entire days of couch surfing interrupted by moving to have afternoon sleeps (two to three hours) in our bedroom. It makes my stomach drop to admit this. To look at it.
Apathy. Apathy, depression and fatigue are different. Depression can feel like sadness, guilt, or hopelessness. I have dealt with that – medication keeps it at bay. Fatigue is physical or mental exhaustion – which I like – bone tired from doing something strenuous. With apathy your mood is flat more than sad. And you are not necessarily exhausted. With apathy it is so… much… harder … to START something. To feel something is worth getting into.
I can find myself laying down – melting into my cozy couch – listening to the water on the shoreline – and I will think through things I would like to do… Do I want to get up and go outside for a while? Not really … How about pick up that book I got from the library? No … It would be nice to play some music on the keyboard. No… too hard to figure out. How about setting up a kayaking date with some friends? I’m not sure how I’ll be feeling that day … Okay, get up and go for a short bike ride. Are you kidding?
Instead I have become adapted to laying very still for very long stretches of time.
I can rally for people. I obviously spent days and days and days helping Shirley and Bruce. Shirley had a TERRIBLE winter and spring. Falls, surgeries, cancer … Bruce has now been moved into long term care for dementia. I was wiped by the time their lives settled down some. So I slept a good month to recoup. That was not apathy – that was fatigue.
I can get up and go to drive my friend Joan to appointments – here in Kingston or to Smiths Falls. I love to fill a day with swimming and playing with Bennie. I have no problems heading out for groceries or going to appointments with Ede. I love to catch up with Chris and Jinny for a visit (that’s how I got kayaking). If I attach an activity to a friendship then I am motivated to get there. Good to note!
Also I have discovered that doing an art project – one that can be accomplished in small steps without any short term finish line – is perfect for keeping me motivated. I have sooooo enjoyed getting back into painting in our study. Everything is organized at at my fingertips. This year I am making and decorating hexaflexagons for the ‘Littles’ for Happy Day. Shhh! Don’t tell anyone.
If I start a day running a friend someplace or working on a project it seems to kick apathy to the curb for a while. There is a ‘golden hour’ for getting myself into gear. If I lay down after feeding the cats … then it is likely the day will be a slower pace.
My go to methods to break out of apathy:
1. Do something WITH someone. Then I feel more motivated to get going.
2. Start the day upright – painting, walking, drawing, playing music, vacuuming …
3. Schedule REST. I sleep most days from 1:00 – 3:00. Then brain fatigue doesn’t kybosh my attempts to keep going for the rest of the day.
4. When apathy does hit – name it – sit with it – and know that you can start again tomorrow.
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