“Parkinson’s is 24/7, so honor that.” (Davis Phinney Foundation)

I am becoming more and more aware of the many things that people with Parkinson’s have to constantly consider throughout their day in order to make it through. Things that most people can do without even really thinking about how to do them. But PD is always there. Relentless. Painful. Nagging. It is always on my mind.

Clearly I am a fan of alliteration, (see: Reality, Rigidity, Rain or Accept, Adapt, Adjust or Puzzles, Pandemics, Parkinsons or Sandals, Swimming, Sunshine), but the following are the first things that quickly came to mind when I began this piece; sleeping, swallowing, and (not) slipping!

SLEEPING.

Sleeping is never guaranteed. Proof of this is that is currently 3:34am as I type this post. Tomorrow – actually today – is Sunday and the only plan I have is to watch the Bills demolish the Broncos in this first weekend of the NFL playoffs. So hopefully, I’ll grab a nap somewhere during the day to catch up on lost sleep. But this lack of sound and predictable sleep, when followed by an active day ahead, can lead to cancellation, rescheduling, or a miserably tired and shaky outcome. The reason for not sleeping is most often pain and discomfort caused by tense/cramped/rigid muscles. Preparation is the key to successful sleep. This includes a variety of natural remedies; magnesium supplements, not eating after 7ish, pickle juice (reduces muscle tension), zero alcohol, heat pads, extra half-dose of Levodopa, Tart Cherry Juice (natural sleep aid – similar effects of how one feels after a turkey feast!), yoga, mindfulness/meditation, and sleep stories. (I highly recommend: Cillian Murphy Sleep Story which I have playing as I write this post). In combination, sometimes these routines and rituals don’t always work – sometimes nothing helps bring rest. I’ve come to dread ‘bedtime’ as I never know what Parkinson’s has in store for me. Nevertheless, I keep searching for the magic answer.

SWALLOWING.

Swallowing is also never guaranteed. I choke on food, water and pills just a little too often. Swallowing difficulty, called Dysphagia (a coughing-choking event) is common with Parkinson’s Disease and can lead to aspiration (a silent-choking event). They say that as PD progresses, aspiration is the most common cause of death due in part to having the disease. It’s very unpleasant, completely embarrassing, and also quite frightening. I am growing more and more uncomfortable sharing meals with people for fear that I will scare them with my performance. Mindful eating is the key to surviving every meal or snack. Thick cheeses and breads are off the menu. Cutting food into small pieces, chewing slowly and completely, maintaining good swallowing posture and not talking while eating has to be considered with every bite.

SLIPPING.

Slips, trips, and falls are pretty much always guaranteed if I’m not paying attention. While going up and down stairs is a rote activity for most, I need to consider each step carefully. Hand railings are crucial to success as feeling off balance can find me leaning too forward or backward. Outings that involve stairs or uneven terrain need to be considered before I attend. Nose-bleed seating ( the cheap seats) is not an option as steep, narrow, rail-less stairs are an accident waiting to happen. Proper footwear, careful planning, and pre-googling unfamiliar destinations is a pre-requisite.

Cillian’s sleep story is coming to an end, therefore I will stop here as well. It’s 4:21am and I’ll give sleep another attempt. There are many others pieces of PD that weigh my mind down so there is likely a Part 2 in the future, but my eyes are telling me to let them close and I need to listen.

image from: http://www.7cups.com/qa-anxiety