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." 

Parkinson's: How Food Affects Medication Efficiency

If you have Parkinson's disease, what and when you eat may affect how well your Parkinson's medications work. 

Here's an overview of how our digestive system works. From the moment food enters your mouth and you start chewing, the process starts. Saliva containing enzymes is secreted and starts to break down the carbohydrates.

From there it heads to your stomach, where it combines with acids and pepsin and churns until it's a soft fluid goop called chyme. 

Then it goes into the first part of your small intestine, which is called the duodenum. There it mixes with enzymes from the pancreas and bile duct to break it down further. From there it slowly travels through the rest of your small intestine, which is about 20 feet long, and this is where many of the nutrients are absorbed into your bloodstream via "carriers." 

Think of this as a huge crowded train station and all these nutrients are trying to catch their particular trains: the F trains for fats, C trains for carbohydrates and P trains for proteins. The problem is the carbi/levodopa pill you swallowed also needs to catch a P train and the proteins are bigger and more pushy, so your meds get shoved to the back of the line.

Catching the right train.

Once they are on a train and on their way to your brain, they encounter the same problem. Those pushy proteins fight to get in first. This is why you may want to take your carbi/levodopa before you eat. So it doesn't have to compete with the others.    

The rest of the goop then enters the large intestine, where most of the water and vitamins are absorbed. Bacteria completes the digestion process and the rest, well, it ends up as poop! (bowel movements) 

Sometimes due to Parkinson's, the normal rhythmic motions of our digestive tract get slowed down and then constipation can be a big problem. Constipation may also be caused by dehydration, lack of physical activity and not enough fiber. So drink plenty of fluids, keep moving and add some extra fiber (bran, beans, berries, peas, greens, nuts, squash or fruit) to your diet. Just add it SLOWLY to avoid gas.   

Bran muffin

In my case, because I take so little carbi/levodopa since having DBS surgery, I do better if I take my pills right after eating. Which is best for you? You need to figure out that answer yourself. 

Who says I can't make this humorous? 

First you add a scoop
Of veggies to your soup
Then your tummy does a loop
And mixes it into a goop
From there it travels in a group
Like a tumbling acrobatic troupe
Until it exits as your poop! 

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Here's My Daily Routine, What's Yours?

As long as I follow a daily routine, my life with Parkinson's disease runs smoothly. This is not one of my humor stories; in fact, it's boring, but you might find it useful. 

Here's what MY typical day looks like:

7:00 am: My bladder awakens me. I stay up, because I can’t find a comfortable position if I try to go back to sleep.
8:00 am: I take my thyroid medicine with at least 8 oz water. 
9:30 am: I eat breakfast, which consists of fiber rich cereal and 1% milk.  
10:00 am: I take 1/2 of a 25/100 mg carbi/levodopa tablet with either water or juice. 
1:00 pm: We eat our main meal of the day and I drink at least 16 oz water.
3:00 pm: Nap for 30 minutes.
6:30 pm: I eat a sandwich on fiber rich bread or a salad and drink another 16 oz water.

7:30 pm: I take the other 1/2 of carbi/levodopa with water or juice.
9:30 pm: I have a snack: 1/2 an apple, or a few peanut butter filled pretzels or crackers.
11:00 pm: I go to sleep

These times vary, but not by more than 30 minutes either way.

If I take the carbi/levodopa before I eat, I get dyskinesia in both feet (watch video). 

As long as I eat my fiber rich cereal and bread, I don’t get constipated. I have a daily bowel movement, between breakfast and lunch. Keeping hydrated and extra fiber is my key to this.  

Occasionally we eat out at mid-day, but mostly we eat at home. It’s easier to reduce the sodium and fat levels if you make it yourself and my Wonderful Husband is an excellent cook!

Once a week, we have dinner out with a group of friends at 5:30 pm. On that day, my evening sandwich gets eaten around noon. Since we aren’t used to eating a large meal in the evening, and most restaurant portion sizes are huge, we often share an entree.

If a neighbor invites us over for dessert in the afternoon or evening, I skip the sandwich.

I don’t like the taste of coffee or tea. I don’t drink sodas because I don’t need the calories and caffeine makes me jittery, so I just drink water. 

On the morning of our Parkinson's Support Group meeting, I must take my Parkie meds early, so that my speech is understandable. We wait until after the meeting is over to eat (eggs, bacon, hash-browns and wheat toast), so I skip my cereal on this day. I know ahead of time I will be dyskinetic, but my only other choice is to set an alarm and get up several hours earlier and that throws the rest of my day out of sync.

Please don’t suggest that I add this or subtract that. This routine works for me. I don’t gain weight, in fact I've lost a few pounds. It keeps me regular and my medicines seem to work well. It took lots of experimentation to figure out what is best for me.

Your Doctor doesn't have time to figure these things out, it's up to you to find your own routine.