Grits and Dread(locks)

6/1/00

Grits and Dread(locks)

It's difficult to describe to someone without PD what "being off" (specifically in public) feels like. This changes (for the worse) as the disease progresses but always contains the following elements:

1) An unexplainable loss of balance (I begin to wonder how my two legs supported all that mass hovering above them and how my feet, now seemingly made of lead, can pick themselves up and move like everyone else) combined with a lack of dexterity (my left side of my body shuts down for business).

2) A sense of panic (Am I going to be able to stumble to the public restroom in time? I took my meds over an hour ago......or did I forget? What if I freeze and can't maneuver in a small hallway or cramped facility? What if I wet myself?) in regards to weak bladder muscles and the sense of urgency it produces.

3) An inability to speak with clarity or volume (slurred mumblings). Only those who truly care what I'm saying will lean in close enough to hear me try to make myself understood.

4) A cloud of gloom and despair that paints your mood and thoughts in dark colors (This is so depressing having to live like this .. .there is no cure yet .... do I get more brain surgery? ... this is so hard going through all this by myself...)

These four items change for the better once the PD meds kick in but they lie patiently waiting for the beneficial feelings of the meds to dissipate.

Scenario:

Last trip to Memphis (after a little over a year) ...six-day stay.... checked into local hotel rather than stay at Mom's apartment. Got up, got ready to be picked up each day for breakfast where meds taken earlier SHOULD kick in.

This morning, Mom took me to the Barksdale Restaurant where I ordered grits along with my "I-Want-A-Heart-Attack" breakfast special. Unlike CA, there was also cigarette smoke being produced at a nearby table (for our eating pleasure/health). Between the copious amounts of greasy food, the layer of smoke in the air, and the several cups of coffee I ingested (trying to help the meds "kick in"), my body informed me that regardless of whether I was ready to move, it was time to excuse myself. The timer in my head turned upside down and the sand raced out of it at an alarming speed.

I noted the location of the restroom(s?) and started stumbling in that direction. Navigating a narrow hallway while "off" is like being a human pinball as I bounced off one wall then the next, trying to make it before disaster struck (you'd be amazed at how often people clear away from you when you move like this).

Having arrived with little bruising to show for my efforts, I entered the room and shut the door behind me. The door had one of those flat bars that you slide across to engage with the piece on the door frame. The little knob on this piece was missing so I slid it into place by nudging the bar to the left with just my finger and it slid into place and I completed my business.

But when I went to unlock the door, there was no way to grab that bar now that I'd nudged it into place (even dexterity would not of helped since it was physically impossible to reach). The right side of the bar was hidden from access by the piece it slid into on the door-frame while the left side had been moved to the left, also free from physical access since he handle on the bar had been removed.

Trying hard not to panic, I contemplated my situation , locked in a restaurant bathroom without a way to open the door I'd locked from the inside....without the necessary voice to call out for help (I could imagine the confusion that would arise from me saying I'm locked in a public bathroom and can't, for whatever reason, unlock the door I just locked). My mind was racing in many woe-is-me directions and the general ambience of the room started to turn my stomach.

I'd said that the handle that was used to slide the flat-bar back and forth was missing and I looked closer. There was a round hole where the handle used to attach that I could try and use something to act like the missing handle. On the back of the toilet was a coat-hanger holding the roll of toilet paper (this was NOT the Four Seasons!) and I used the end of this coat-hanger (with great effort due to my lack of dexterity) to push the bar back to the left. I left the bathroom and bounced back to my table, still reeling from this mini-crisis.

The actual time for all of this must have been five minutes but in my PD-world, it had seemed forever. And that was just one of the fun-times I remember fondly (not) from my "vacation".



		6/1/00 Grits and Dread(locks) It's difficult to describe to someone without PD what "being off" (specifically in public) feels like. This changes (for the worse) as the disease progresses but always contains the following elements: 1) An unexplainable loss of balance (I begin to wonder how my two legs supported all that mass hovering above them and how my feet, now seemingly made of lead, can pick themselves up and move like everyone else) combined with a lack of dexterity (my left side of my body shuts down for business). 2) A sense of panic (Am I going to be able to stumble to the public restroom in time? I took my meds over an hour ago......or did I forget? What if I freeze and can't maneuver in a small hallway or cramped facility? What if I wet myself?) in regards to weak bladder muscles and the sense of urgency it produces. 3) An inability to speak with clarity or volume (slurred mumblings). Only those who truly care what I'm saying will lean in close enough to hear me try to make myself understood. 4) A cloud of gloom and despair that paints your mood and thoughts in dark colors (This is so depressing having to live like this .. .there is no cure yet .... do I get more brain surgery? ... this is so hard going through all this by myself...) These four items change for the better once the PD meds kick in but they lie patiently waiting for the beneficial feelings of the meds to dissipate. Scenario: Last trip to Memphis (after a little over a year) ...six-day stay.... checked into local hotel rather than stay at Mom's apartment. Got up, got ready to be picked up each day for breakfast where meds taken earlier SHOULD kick in. This morning, Mom took me to the Barksdale Restaurant where I ordered grits along with my "I-Want-A-Heart-Attack" breakfast special. Unlike CA, there was also cigarette smoke being produced at a nearby table (for our eating pleasure/health). Between the copious amounts of greasy food, the layer of smoke in the air, and the several cups of coffee I ingested (trying to help the meds "kick in"), my body informed me that regardless of whether I was ready to move, it was time to excuse myself. The timer in my head turned upside down and the sand raced out of it at an alarming speed. I noted the location of the restroom(s?) and started stumbling in that direction. Navigating a narrow hallway while "off" is like being a human pinball as I bounced off one wall then the next, trying to make it before disaster struck (you'd be amazed at how often people clear away from you when you move like this). Having arrived with little bruising to show for my efforts, I entered the room and shut the door behind me. The door had one of those flat bars that you slide across to engage with the piece on the door frame. The little knob on this piece was missing so I slid it into place by nudging the bar to the left with just my finger and it slid into place and I completed my business. But when I went to unlock the door, there was no way to grab that bar now that I'd nudged it into place (even dexterity would not of helped since it was physically impossible to reach). The right side of the bar was hidden from access by the piece it slid into on the door-frame while the left side had been moved to the left, also free from physical access since he handle on the bar had been removed. Trying hard not to panic, I contemplated my situation , locked in a restaurant bathroom without a way to open the door I'd locked from the inside....without the necessary voice to call out for help (I could imagine the confusion that would arise from me saying I'm locked in a public bathroom and can't, for whatever reason, unlock the door I just locked). My mind was racing in many woe-is-me directions and the general ambience of the room started to turn my stomach. I'd said that the handle that was used to slide the flat-bar back and forth was missing and I looked closer. There was a round hole where the handle used to attach that I could try and use something to act like the missing handle. On the back of the toilet was a coat-hanger holding the roll of toilet paper (this was NOT the Four Seasons!) and I used the end of this coat-hanger (with great effort due to my lack of dexterity) to push the bar back to the left. I left the bathroom and bounced back to my table, still reeling from this mini-crisis. The actual time for all of this must have been five minutes but in my PD-world, it had seemed forever. And that was just one of the fun-times I remember fondly (not) from my "vacation".