ON OFF

The on/off phenomenon that Parkinson’s patients can experience is hard to understand.  When I treated Parkinson’s patients, I was aware of the on/off (freezing as in “can’t move”) periods they could have but never really appreciated the cataclysmic effects an off episode could cause.

This morning, I am “off”.  Imagine walking through a muddy bog, the thicker the mud, the harder it is to move your feet.  My feet feel like they glued or cemented to the floor.  Most of the time, if I muster all of my strength, I can move them.  Often, once moving, I’ll freeze again. Episodes can last minutes to hours and occur on a random basis.

When I use the term cataclysmic, I’m not exaggerating.  Imagine you have to urinate.  You head to the bathroom and freeze at the doorway to the toilet room.  (Freezing at portals is common.)  You’ve really got to go, and you can’t move.  Yep, you wet yourself and the floor.  Now, imagine that rather than being home, you are at the grocery store. “Off” periods are horrible and capable of scaring anybody who is around you. 

Imagine seeing me in the local market, standing rock still at the entrance to the bathroom, wetting myself.  Horrifying?  Luckily, it has never happened.  When you have unpredictable off periods, you stop at every bathroom you pass. It’s not uncommon for me to go straight to the bathroom when I enter the store and prior to leaving the store.  When we moved to Carolina, Renee learned the names of the key roads we would need to get around.  I learned where all the clean bathrooms were.

“On” periods can be amazing.  If you see me during an “on” period, you might think I’m normal.  On a rare occasion, an “on” is so good that I almost feel normal.  Other times, I can move but still feel like shit. “Ons” are precious moments in which you can exercise, swim, work on a project or simply enjoy a shower without fear of falling.

So, what can you do to help? The first thing to do is simply ask me if there is anyway you can help.  I’ll tell you to tap on my right shoulder as sometimes that helps.  Most of the time, I do not want to hold on to your arm or hand.  I can’t explain it but holding on to someone seems to make it worst. 

Just as thresholds may provoke an off episode, so might obstacles on the floor.  I might ask you to clear a path for me.  On occasion, I can’t break the “off,” in which case having a chair to sit in is very helpful.  So far, I’m lucky.  My “off” periods are always followed by “on” periods.

If you know someone with Parkinson’s, talk to them about the on/off phenomena and be prepared to assist them if necessary. If you see Renee hitting my left shoulder, I probably pissed her off.  If you see her tapping my right shoulder, I’m frozen and she’s trying to get me moving.

Here’s your joke for the day:

Difficult things to say when Drunk. 1. Innovative 2. Preliminary 3.Cinnamon. Very Difficult things to say when Drunk. 1.Specificity 2.Passive-disorder 3.Transubstantiate

Things that are just down right impossible to say when drunk.

1.No, thanks, I’m married.

2.Nope, no more for me.

3.No, I don’t want to see your tits.

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