Week 4 of Parkinson’s Awareness

And this is the last week, folks, so breathe a deep sigh if you’re tired of reading about 1238f8c1e97790f9900e02bddf7ca22cParkinson’s and you have already reached “Unagi.”

V is for Variable. I like to think of Parkinson’s as a “boutique” disease. Everyone person’s Parkinson’s Disease is designed specifically for them; no one has the exact same set of symptoms and issues. It’s as if some (awful, nefarious, hateful) supernatural being said, “Hmmm, for this one, we’ll go heavy on tremor, pain, and loss of executive functioning. That one will get stiffness, constipation, apathy, and depression. The one over there? Let’s see. We’ll give them hypersensitivity to all PD meds, combined with slowness of movement, tremor, rigidity and hallucinations.” Yes, there’s a larger set of symptoms that most folks with PD experience some of the time, but on the day-to-day, people can have VASTLY different lived experiences with their Parkinson’s. Parkinson’s can also progress at different rates and with symptoms developing at disparate times.

Parkinson’s is likely to be an umbrella term. As we dig into genetic reasons for PD and learn more about which brain areas lead to which PD symptoms, we will probably be able to discuss specific PD sub-types and (HOPEFULLY) target them with specific therapies, including gene therapies.

W is for Walking and gait problems. Parkinson’s often leads to issues with walking, postural instability, and balance. People with PD may have a short, shuffling gait and be unable to lift their feet off the ground normally. When highly symptomatic, people may take very small, quick, shuffling steps, but lean their body precariously forward–like they’re trying to move faster, but their feet are unable to keep up–which can lead to falls. PD also affects balance, so people are more likely to trip, to fall when turning, to have difficulty on stairs. When walking, people with PD may “freeze,” like their feet are stuck to the floor, and be unable to get their feet to start moving again. This freezing is especially common when they are moving from one walking surface to another–like from a carpet to a tile, from one color carpet to another, across any sort of visible dividing line, or even across a threshold. Putting on music or a metronome (or even clicking your tongue in a rhythmic fashion) can help someone start moving again if they are frozen. (Isn’t that interesting?) Falls are one of the biggest risks in advanced Parkinson’s.

X is for eXam. When neurologists do a physical exam to assess someone for Parkinson’s, here are some of the things I’ve seen them do:
– Have the person walk, to see if one arm does not swing, to check for small, shuffling steps, to observe how fast they can walk.
– Watch the person tap their thumbs and forefingers together on both hands as quickly as possible. Do both sides move the same? Can they tap quickly?
– Ask the person to write. Is the writing small? Does it taper off through the length of a line?
– Can the person draw a spiral, from the outside to the center?
– Assess the person’s balance by pushing on their shoulders gently while they are standing. Do they stumble or stagger a step? Can they resist the push?

CAUTION: Unless you’re a neurologist, do not try to diagnose someone with Parkinson’s by doing these things. 🙂 I just think the physical exam is very interesting and I thought you might like to know what it’s like. If you or your loved one has PD and you’ve observed an assessment, what other things have you seen?

Y is for Yes.

Yes, if someone tells you they have Parkinson’s, it’s okay to talk about it and to ask questions. If they don’t want to talk, they’ll let you know! (But it’s weird when someone finds out and then is all HOW ABOUT THOSE METS, because they are super uncomfortable with the idea of disease and disability–feels like a rejection.)

Yes, it’s okay to ask me how I’m doing and how Gary’s doing–even better if you really want to know, if you want to know how my heart is feeling.

Yes, it’s also okay to NOT talk about Parkinson’s sometimes. You can help me compartmentalize and focus on other things.

Yes, it’s okay to complain about whatever’s going on in your life or bitch about some small partner-related annoyance. I don’t have the monopoly on life struggles. If you say, Wow, I wish X would do the dishes, so frustrated, I promise I won’t say, OH YEAH, WELL GARY HAS PARKINSON’S SO SHUT UP YOU LUCKY FOOL. 😉

Yes, it’s also okay ask us to do things, even if you’re not sure if we can. And it’s even better if you understand that we might need to change plans some of the time.

Yes. All if it is okay, as long as you approach me, Gary, life, and Parkinson’s with compassion and understanding.

Z is for Zzzzzz. Sometimes dealing with Parkinson’s is so wearying for both of us. Not just on a physical level, but on a mental and emotional level. I would love a day when I didn’t have to remember to remind Gary about his medications. A day when I didn’t have to consciously stay in the moment to prevent myself from worrying about the future. A day when I didn’t notice and monitor symptoms.

No matter how wearying it is for me, I know it is more wearying for Gary.

I wish we could just have a vacation from Parkinson’s. Like, just a day. A week. Too bad that’s not a thing. But it’s not, so. Day by day.

Last post for Parkinson’s Awareness Month: April may be over, but some of us live with the reality of PD every month, every week, every day, every hour. Thank you for supporting us by reading my posts, by trying to understand, by sending your love, by helping when you can.

Please share your own lives and struggles, so I can offer the same to you!

Be hopeful, my friends.  Life is short and we have not much time to brighten the lives of those around us. Be swift to love, make haste to be kind.

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