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! 

Everything is Peachy

This story begins twelve years ago. My Wonderful Husband I were still living and traveling full time in a RV back then. We were staying at a campground, near the Columbia River in Oregon during the summer of 2004.  

The campground was situated along a tributary river that fed into the Columbia and we were lucky enough to get one of the few riverfront campsites. We had a tree close to the water on our site so we had some shade. We'd sit in our lawn chairs and watch the people fishing and water skiing. We could even see the big barges going down the Columbia. It was Heaven. 

Riverfront camping in 2004

The weekend came and people showed up with their tents, campers and boats. A family who was camping near us, but not on the water, asked if they could tie their boat up to the tree, so they wouldn't have to trailer it in and out all weekend. Absolutely, we said, and thought no more about it. 

The next morning, someone knocked at our door. It was the boater with a paper bag full of fresh fruit. We said thank you. There were cherries, apples, and peaches. I ate an apple with my breakfast and my Wonderful Husband had some cherries, both were delicious.

We weren't sure what we would do with the peaches. I had tried fresh peaches before and didn't like them. Wonderful Hubby had fruit allergies as a child, so he had never tried fresh peaches.

The next morning we decided to try one of the peaches. I didn't like the taste or texture, but my Wonderful Husband absolutely loved them. We asked the boater where, exactly, he had gotten the fruit. For the rest of that summer, we went across the river to an orchard in Washington. I'd get apples and he'd get peaches. 

When we got back to Yuma in the Fall, he bought peaches in the grocery store and they were awful. We never made it back to Oregon, so Wonderful Hubby never got good peaches again. 

Fast forward twelve years and the World Parkinson Congress  (WPC) is in Portland, Oregon. The route I planned to get there wasn't the shortest or the most direct but it would take us right near that orchard from a dozen years ago. I didn't know if it would still be there or if they would have any peaches left, but I was willing to take a chance. I didn't tell Wonderful Hubby because I didn't want to get his hopes up. 

As we were driving along I-84, enjoying the view of Mt. Hood in the distance and watching the barges on the Columbia River on our right, we drove past that campground we had stayed at so many years before.  

All of a sudden, Wonderful Hubby remembered the peaches and asks if I remember where the orchard was. Yes, I said, the bridge is up ahead and I've been planning on stopping there ever since I found out the WPC was going to be in Portland. 

We went across the river and turned down the side road to the orchard, keeping our fingers crossed. The trees were barren, but up ahead the fruit stand was open and there were boxes of peaches! 

Wonderful Hubby jumped out and went inside. They had picked the last peaches of the season a day or two before and would be closing the stand in a few days. They cut one open so he could have a taste. It was delicious, he said. He ended up eating the rest of it and he bought a whole box of peaches from their cooler, so they'd stay fresh longer. After all, we wouldn't get back home for about a week.

Box of Peaches

Now all I had to do was make room in our car. I hadn't thought about this part. We squeezed them in between our suitcases and headed off to Portland. It was colder in the hotel garage than in our room, so we left them in the car during the WPC.

On our way home, they got moved inside at each stop and placed right in front of the room air conditioner. They made it all the way back home to Yuma and he shared some with the neighbors. I thoroughly enjoyed watching him savor every bite.

Everything about our trip to Portland turned out to be just PEACHY! 


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Traveling with Parkinson's, Just Follow Your Routine?

You have everything packed and now it's time to leave on your trip. Your Doctor gives you this advice regarding traveling with Parkinson's disease, "Just follow the same routine you do at home." 

Follow my same routine? Yeah, right.

Living in Yuma, Arizona has some advantages. If you are flying, the Yuma airport has just one airline and only two gates, so getting through security takes 5 minutes or less. If you are driving, there are only three roads out; I-8 east, I-8 west and US-95 north. For our Las Vegas trip, we went north.

A LOT of desert between Yuma and everywhere else

Living in Yuma has some disadvantages, too. Once you leave Yuma heading north, the next bathroom is at least 90 minutes away in Quartzsite, Arizona. We got up at 5:30 and left at 6:30 am, so I took my thyroid pill with just a sip of water, instead of a whole glass. Routine slightly off schedule before we even left. 

Once you leave Quartzsite, then next bathroom facilities are in Parker, Arizona (40 minutes away) and then in Needles, California (75 minutes past Parker). There is a LOT of desert between Yuma and everyplace else! 

We stopped for breakfast in Needles at 10 am (pancakes, eggs and bacon.) From Needles, the next bathroom is another hour away, so I drank very little at breakfast and kept my fingers (and legs) crossed. Routine off even more.

We got into Las Vegas, Nevada about 11:30 am and got stuck in a huge traffic jam. Our daughter and grandson (The Kids) had flown to Las Vegas from Orlando, Florida the night before. The Kids call to ask where we were. Stuck in traffic, we answer. We could see the hotel from the highway, but it would take another 45 minutes to get there. We don't have ANY traffic jams in Yuma, except inside the grocery store on Senior discount day!

The Kids have a normal routine as well, and with the three hour time zone difference, we assumed their routine would coincide with ours. Wrong. Instead of going right to sleep when they arrived the night before (2 am their time), they stayed up until 4 am (7 am their time.) They had just awoken, were starving and ready to eat a big meal and we weren't hungry at all.

So, we stalled them for an hour or so and then ate. Later that evening we went to see a very humorous comedy show, walked up and down Fremont Street and then The Kids were hungry again. So we had a slice of pizza at 9 pm. We finally went to sleep at midnight. Routine completely gone, but we had a great first day (except for the traffic jam.)

On Day Two, we were up at 7 am and it was raining lightly. One of The Kids called at 10 am; she'd just woke up. The other Kid was still sleeping. Who knows when time they went to bed? The three of us had donuts at 11 am. Routine gone. 

The Kids were finally ready for a big meal at 3 pm. In the evening, we watched an Elvis type band on Fremont St and The Kids napped. They came down later and were hungry, so we had hot dogs at 10 pm. We finally went to sleep at 1 am. It was then that I realized I hadn't had a bowel movement in two days. Routine completely gone, but still having a great time. 

On Day Three, we slept until 9 am. I walked over to McD's and got some milk and oatmeal cookies. The Kids woke up at 1 pm and we went to a buffet. The Kids only had one more day here, so we grabbed our cameras and drove up to the Las Vegas Speedway.

Our Grandson went Drift Car Racing in a Camaro with a professional driver from Monaco. He had a blast and the huge grin on my Grandson's face was priceless. 

Grandson riding in Drift Race Car

We ate late, again, and went to bed about 11 pm. Routine gone, still no bowel movement, but we are having fun.

Day Four, our last full day together, came too quickly. We were up early. I did the McD's milk and cookies for breakfast again. I finally have a bowel movement. Maybe it was the oatmeal cookies? 

The Kids were up slightly earlier today and we had lunch at 1 pm. Our Grandson did a zip line from one end of Fremont Street to the other (about 4 blocks.)

Then we just sat in our room, took pictures and visited for a while. 

Grandson, YumaBev, Daughter, Wonderful Husband

Later, we got in the car and drove to the Stratosphere Hotel. My Grandson did the Sky Jump, which is like the free fall part of skydiving. We ate late again and said our goodbyes (the worst part) as The Kids had to leave for the airport very early the next morning. We got to bed after midnight. Routine completely gone.

Grandson getting ready to jump

He jumped from way up there!

I had set an alarm for 6 am and called The Kids to make sure they were up. Heck, for all I know, they may have never gone to sleep. Since we were awake, we went ahead and got ready to leave, too. We walked down together and they hopped into a cab and were gone. 

The Kids heading back home

We climbed into our car and headed back south through the desert to our home. Once again, I was mindful of just how far between bathrooms it is.

Just as we pulled into our driveway, we received texts from both Kids saying they had just landed back in Orlando (2300 miles.) Routine still gone, but who cares? 

It took about 5 days to get back on my "normal" routine. We had a wonderful visit and I'd do it all again next week. Except for the traffic jam, I definitely don't want to be in another traffic jam. Unless it's Senior discount day, of course. 

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Traveling with Parkinson's, What to Pack

Your travel reservations are confirmed and your trip is only a few days away. You are excited because you will be spending time with family or friends and seeing new things. All you need to do is figure out what to take and then pack it.

My Wonderful Husband and I travel light. We have a “Go” bag packed and in the closet by the garage door. It has almost everything needed to spend a night away from home: toothbrushes, toothpaste, deodorant, combs, shampoo, razor, flashlight and a nightlight. There is a list of items to add; hat, jackets, prescriptions, DBS remote, cell phone charger, camera and a second list of things to do before leaving home; turn off the air conditioning and the water, set the alarm. All we have to do is grab some clothes and go. This is perfect if we are driving our car and staying out for one or two nights, but if we are staying longer or flying then things become more complicated. For example:

We just returned from a 5 day/4 night trip to Las Vegas, Nevada. Our daughter and grandson flew in from Orlando to meet us there. It’s only 300 miles from Yuma, so we drove our car. All we needed was extra clothes, right? No, because we’d be gone for five days, I had to bring extra batteries for both the DBS remote and my camera, the original pill bottles and the pill splitter. 

The DBS remote goes through batteries like crazy, so I purchased rechargeable ones and found a charger that can charge both AAA (for DBS remote) and AA size (camera & flashlight) at the same time.  

Packing these is the easy part; just toss them in the bag. It’s what to do with them once you get there that is the problem. At least for me it is.

I carry a small fanny-pack type purse. It’s barely big enough for car keys, ID’s, cash, credit cards and my cell phone. My shoulder won’t tolerate anything heavier and if my shoulder starts to hurt, I can put it around my waist. Here’s a photo of it next to a business size envelope.

See how small it is?

There’s no room for the DBS remote or my camera unless I get rid of something else. And both are larger and heavier than my keys and cell phone.

I tried to put the car keys in my jeans pocket, but the pockets in ladies clothes are worthless. It might be okay if I never sat down.

The DBS remote comes with a holder, but it’s designed to clip onto a belt and then you don’t have the antenna with you. I think the design engineers were all male.

So, what did I do? I left the car keys and DBS remote in the hotel room and squeezed the camera into my purse. Some people carry their DBS remote with them everywhere, I don’t. At home it stays in the cabinet with the pill bottles. I use a daily dose pill holder that fits easily in my purse.

I currently take 1/2 of a carbi/levodopa 25/100 mg tablet twice a day and 1 thyroid pill. I can easily fit a couple days worth into my little pill holder. However, the directions on the bottle says take a whole one 4 times a day. Why? Because of cost. The price of 90 pills (a 3-month supply) is the same as for 360 pills (a whole years worth.) My Doctor understands this and gladly writes the script this way to save me money, since I don’t have drug insurance coverage.

I keep my fingers crossed that I don’t end up in an Emergency Room and have to show them the original pill bottle. At four times my normal dose, I’d be a dyskinetic mess.

Here are a few other packing tips:

Print out a personalized info card, stating you have Parkinson’s and what symptoms YOU may have happen in an emergency. I have a large one in the glove box of our car and a smaller one in my purse/wallet, both in bright neon green, so they are easy to find.

MY emergency info sheet

Make sure you have your health insurance cards and phone numbers for all your Doctors, especially your Neurologist (including the after-hours contact info.) If you are traveling out of your home country, consider travel insurance, as your medical insurance from home may not cover you in a different country.

Take at least an extra week worth of all prescription medicines, in case you get delayed returning home. There is nothing worse than showing up at an Emergency Room because you ran out of Parkie meds. If flying, ALWAYS carry your meds in your carry-on bag, never put all of them in the checked luggage. 

If you have a cane or a walker that you use at home, even if it’s only once or twice a month, TAKE it with you. You will be staying and walking in unfamiliar surroundings and falls can be deadly. If you wear eyeglasses and have an extra pair, toss them in your bag as well, especially if without them you can't see.

Ladies...forget your vanity! Wear comfortable shoes! They make snazzy sneakers.  You will be more active than you are at home, and blisters or sprained ankles could ruin your entire trip. 

YumaBev's Sexy, Snazzy Skechers Sneakers

We have a night light and a small flashlight in our Go bag (it uses the same size rechargeable batteries as the camera.) Both come in handy when you need to go to the bathroom at night. Hotel rooms are notoriously dark and I know several who have broken a toe by not seeing that piece of furniture.

There's one more item in our Go bag; a canister of disinfecting wipes. We wipe down everything we may touch (light switches, faucet handles, curtain pull cords, TV remote, phone, door handles, etc.) I don't want to catch a cold from a previous occupant or housekeeping.

I refill our Go bag after each trip, so it's always ready for the next time. When toothpaste or deodorant gets low, I buy new ones for home and put the used ones in the bag. There's no sense carrying heavy full ones when you only need a partial one.  

Mostly, have fun, take lots of pictures and make wonderful memories, we sure did. 

Family Time in Las Vegas

A good friend says, "Just remember to pack your glasses, teeth and drugs, everything else…they sell at WalMart."