When Flights Go Wrong

We took a vacation trip to Florida and had a great time with family and friends. Then it was time to go home.

Once we got through TSA, I rearranged the carry-on luggage, putting our laptops, zip-lock bags of toiletries and our Passports away, since we wouldn't need them anymore. All was going well, until we got to the gate. Anxiety level 1. 

It looked like all 200+ passengers were already there, crowding around. Anxiety level 2.

Hubby had his hands full with ALL our carry-on luggage, so when he asked me to follow him through the crowd, my brain decided that I was NOT going to be able to move my feet. So I closed my eyes and stumbled through the crowd. I tried to get someones attention to ask to board early but no luck, not that they could have heard me. Anxiety level 3.

And to top it off, there were 5 or 6 TSA type agents, all with big dogs on leads that were sniffing everything.  I'm going to admit that I am afraid of big dogs. Not that they will bite me, I'm afraid they will knock me down or I will trip on their leads. Please don't hold this revelation against me. Anxiety level 4. 

The TSA agents wanted to see everyone's travel approved ID's, again, and our Passports were  in one of the bags, so we dug out our Driver's Licenses and hoped it would do. Thankfully, it did. Anxiety level 5. 

One of the agent's waved Hubby through and he walked past the sniffer dogs and then waited for me. They waved me through and my feet refused to move. I tried to ask for help but couldn't make a sound, so I just reached my hand out and a gloved hand took it. I stumbled through the dogs and Hubby and I headed down the ramp. Anxiety level 6.

When I got to the plane, the tiny gap to get ON the plane was, in my Parky riddled brain, a HUGE step and I froze, again. Anxiety level 7.

Hubby helped me get on the plane and we got seated. The flight hadn't even started and I was completely exhausted and fighting to keep from crying. Anxiety level 8.

We always get aisle seats across from each other, so I can get up during the flight, and Hubby is there to help me. This particular flight was full, but I could still get up, walk to the bathroom and back. Getting IN the tiny airplane bathroom was difficult, getting OUT was a nightmare of epic proportions. Anxiety level 9.

I haven't even begun to describe the back pain I deal with due to the twisting of my torso (look up Parkinson's Pisa Syndrome) Or how the person sitting behind me kept jabbing me in my lower back with her foot. Or how I am afraid that luggage will hit me on my head when people are in a hurry to get off the plane. Anxiety level 10.

I've been home for over a week and still haven't recovered from the plane ride. I'm 99% sure that this WRONG flight is going to be my LAST flight. And there's definitely no humor in THAT. 

PS I want to say a special THANK YOU to the young man who sat next to me: Brady Saxton, an Automation Technician at Axon in the Phoenix area. He talked to me during the flight. He showed me videos of what he does at his job, and racing his drift cars and we discussed pick up trucks, gear ratios, traveling and the scenic places I thought he should go see. Everyone else was glued to their devices with earbuds on and the plane window shades closed. I said that most would be oblivious if their was a UFO outside the plane. He made the flight bearable for me. And for that, I thank him, again. 

When Flights Go Right

Flying on an airplane with its narrow aisles, cramped seating, lack of overhead bin space, along with 200 or so strangers can NOT be enjoyable for anyone. There's no humor to be found. Add in all the variables of Parkinson's disease symptoms and even IF everything goes right, it's still not fun. 

Take for example, my Parky friend Jimmy Choi, who has competed on American Ninja Warrior several times. Jimmy should have ZERO problems when he's flying. But he has uncontrollable movements like tremors and dyskinesia. And because he doesn't want his wiggling, squirming and shaking bothering the strangers next to him (or get him thrown off the flight) he will TRY to stay perfectly still; which requires ALL of his concentration. So he ends up being exhausted when he gets where he's going. No fun for him. 

I don't have any noticeable tremor because the DBS surgery I had in 2012 is still doing its job. And I don't have dyskinesia because I don't take any Parkinson's medications. But that doesn't mean flying is easy for me. On a recent flight to Florida, most everything went right. 

Going through the TSA screening is always scary for me, I know they don't understand my DBS "brain pacemaker" and I'm concerned that it might get accidentally turned off. Thank God, I don't have to take my shoes off anymore. But trying to get my jacket off, put the right items in the bins, not falling down and then getting everything back together again when there's a line of people waiting behind me and grabbing their stuff, just makes me want to go back home. 

I try to get early boarding, if I can get to the gate in time and get the attendants attention. My voice is almost gone and the few words I CAN get out, make me sound like I'm drunk.

I also have trouble going DOWN ramps, so walking the jet bridge is an issue. Even stepping across the tiny gap in between the jet bridge and the plane is a problem. My Parkinson's riddled brain perceives it as a huge gap. All of this and I haven't even got ON THE PLANE yet!   

Trying to maneuver down the narrow aisle is difficult, and that's with the plane empty. 

I would love a window seat, so I could look out the window, but we choose aisle seats across from each other, because I need help to get up from sitting. I cannot stay seated for very long. Even at home I am up and down, up and down. 

On a recent trip to Florida, even though the flight went right, there were times I wish I could have traveled some other way. I wonder IF this is available? 

Now, that would be FUN! 

Parkinson's Fun House in the Daytime

I toddle towards the hallway bathroom, up on my tiptoes and go in to brush my teeth. I'm leaning up against the waist high vanity because it's easier for me to reach the sink. To exit the bathroom, I need to move my left foot over my right foot, like doing the Vine dance step, which I used to do without thinking in my dancing queen days. But I stumble and almost fall.   

Note to self: that doorknob I bumped into is going to leave a bruise. 

I toddle towards the other bathroom to get in the walk-in shower which has multiple grab bars. Wonderful Husband, bless him, always stays nearby; in case I fall or need help getting out of the shower. Only after I'm dressed for the day, will Wonderful Hubby get his shower.

We head to the kitchen to get breakfast, I'm walking flat-footed, taking what I think are normal length steps when Wonderful says STOP and LOOK at YOUR FEET. My left foot is pointed straight ahead but the right foot is pointed outward at almost a 90° angle! I am shocked to see this. I didn't have a clue. No wonder I can't step over the right foot with my left without stumbling. 

As the day goes on, I pay close attention to how I walk, and am surprised how often I'm up on my tiptoes and taking tiny steps. My feet are getting stuck to the floor more and more often especially if I'm carrying anything. I find myself grabbing doorways, the counter tops or the back of a chair to keep from stumbling when my body pitches forward as if the floor is slanted downward. The worst is when I walk into the kitchen corner or go to look out a window, I can't back up! I really have to try to figure out HOW to get turned around without falling. If Wonderful Hubby is near, I can just reach out my hand and he will come rescue me. 

The only consolation is that IF I can get OUT of the Parkinson's Fun House, out in the open, I can generally walk just fine. So, is it all just a visual optical illusion, like the hall of mirrors in the carnival fun house? I don't know, my Parkinson's specialist doesn't know, does anyone know? 

In the meantime, I'll try to keep moving forward while staying upright. Adapt, adapt, adapt. 

The Parkinson's Fun House

When I was a teenager, I used to love to go to the Central Florida Fair. I always enjoyed going through the Fun House. The slanted and uneven floors, dead ends and optical illusions were enjoyable and the distorted mirrors were always good for a few laughs.  

These days though, it seems like I am living in a Parkinson's Fun House 24-hours a day... and I am having trouble finding humor in this situation. Let me explain:

Imagine your feet are roped together but not tightly, that you have powerful magnets attached to the heel and ball of each foot and there's a button that makes you walk up on your tiptoes, some times just one foot, some times both feet. You have NO CONTROL over the length of the rope, when the magnets might be activated or the tiptoe buttons will be pushed. 

So here's what happened last night: 

I wake up at 230 in the morning because I need to go pee. I sit on the edge of the bed and slowly slide off because I don't know what 'feet' I'm going to get. As I grab the top of the heavy dresser next to the bed, I slowly stand up. 

I try to take my first step and find out that the rope between my feet has been shortened to mere inches and the right toes button has been pushed. I grab the edge of the bed and am taking tiny steps with my right foot up on my toes. I get to the end of the bed and need to turn left. 

I am able to do that but now both feet are up on my toes and I am still taking tiny steps. I just need to get across the open area between the bed and bathroom doorway. A distance of about 36 inches. 

That's when my whole body pitches forward as if the floor is suddenly slanted downward and luckily I manage to get there without falling. 

As I try to go through the bathroom doorway, both feet are stuck to the floor as if the magnets have been activated. I get my left foot loose and flat on the floor. Then I force my right foot to release. I almost fall, but catch myself by grabbing the sink. 

After I am done in the bathroom, I have similar trouble getting through the doorway, however once through, I can take the three normal length steps back to the end of the bed with both feet flat on the floor. As I try to go around to my side of the bed, the tiny steps start again and I stumble into bed. It takes me awhile to get back to sleep.

Now it's 530 in the morning, daylight has lightened the room and I have to go pee again. You'd think it would make it easier with the room being bright and some days it is but today isn't one of them. I sit on the edge and slide off grabbing the dresser. As I turn to walk to the bathroom, I catch my reflection in the mirrored closet doors and I freeze. I can't get either foot to move so I sit back down.

I take a few deep breaths and try again. This time I don't look at my reflection but then I realize that Wonderful Husband isn't in the bed. So now I have to figure out which bathroom he's in and go to the other one. 

I manage to walk to the hallway bathroom and both feet cooperate. On the way back to bed, my left foot goes up on my toes and I kinda bump into the walls on both sides of the hallway. I'm so used to my right foot being up on my toes that I don't even notice it half the time, unless the rope between my feet is too short. 

Instead of going back to sleep, I just laid there thinking about how I can explain this phenomenon to my readers. 

Then it was time to get up for the day. My body is quite relaxed while I am sleeping but if I stay in bed after waking, I stiffen and it becomes painful to bend and move due to arthritis in my back and hips. 

I slide off the bed and wonder if my feet will work, they do, kind of. I'm walking on both tiptoes but the rope length is allowing me normal stride length. Thankfully I made it through the night shift without falling, crashing into anything or getting hurt. 

I toddle off to brush my teeth, get my shower and get ready for the day shift in the Parkinson's Fun House, which I will write about another day.