Parkinson’s and Doing as Much as You Can for Your Self

Yes, I have Parkinson’s. I believe I should do as much as I possibly can for myself. My best friend, wife, and caregiver, also believes I should do as much for myself as possible. She might add “safely.” I’ll give her that one.

Time is a factor with Parkinson's

There’s a complicating issue that I don’t recall being connected to the idea of doing as much for yourself as you can. Here’s an example with time thrown in. I wear boots with accompanying AFOs (ankle foot orthesis). I can still put on my Boots and AFOs, lace my boots and double knot my laces. Yes, I can even with neuropathy in both hands. Impressive? When I add it might take me close to two hours, it doesn’t sound quite so impressive. Our morning schedule is crowded. I have dialysis three mornings a week starting at 7 AM. Other days, it's not just that I have a doctor's appointment but what else we need to get done.

For many of us, it may not be a question of whether or not you can do something for yourself, it’s really about time and compromise. In the case of my boots, the real question is less about my capabilities and more what I’m willing to give up in order to do the boot thing. I would have to get up two hours earlier and give up two hours of sleep. I’m already sleep compromised. Before someone asks, we’ve thoroughly investigated shoe alternatives. I have balance issues and I’m even more of a fall risk without my AFOs and ankle high boots. If you’re keeping score, we are way beyond whether or not I can safely tie my shoes.

Lots of little steps

Another small example is brushing my teeth. I can open the drawer, get out the tooth paste, wet my toothbrush, squeeze out some toothpaste, brush my teeth, spit in the sink or into a glass, rinse sink or glass, put toothpaste back in the drawer and put toothbrush back in its charger. Lots of little steps. Throw in tremors and bradykinesia, and it does take me longer to brush my teeth. The time might be absorbed into our schedule but there’s another factor. How often do I drop the toothpaste off my brush and onto my clothes? How often do I drool onto my clothes? How big a mess do I leave at the sink? The answer is frequently. Now, I need help changing my shirt or trousers. Dialysis doesn’t require you to be a runway model but they expect basic cleanliness. Add up the additional time and the time required to clean up my mess, and we have to take that additional time out somewhere.

For my family, none of the things I do for myself are done in a vacuum. Time, mess, safety and potential alternatives all affect the comprehensive decision of ‘Yes, I can do X for myself’. Safely? Fit in the family schedule? Not disrupt the family routines without time compensation?

Most of us live in a family unit, so ‘I can do that’ can’t be decided in a vacuum. Is doing as much as you can for yourself important? Absolutely! If any of the other things stop you, look for alternatives.