[paula_w]

We really can’t take each other anywhere.


Part 1- The trip
Traveling alone is becoming hazardous and stressful to others as well as a nightmare for me. I try to be organized and for this trip, I didn’t check any bags because I had a short connection at the Chicago Midway Airport to make a bus going to Peoria. There wouldn’t be another bus for many hours and it took 2 or more hours to get there. I ordered a wheelchair in Orlando to meet me at the gate at Midway and am in several computers as needing one. But this wasn’t one of them or no one had checked.


Deplaning I saw no wheelchair. This happens sometimes and in fact had almost caused me to miss my flight to Scotland. We waited and waited and finally two carts took me there – one before and one after the moving walkway or escalators or something narrow to negotiate prior to boarding the second cart. . When I got to the gate they were boarding and my friend was standing there saying, “ it’s time to get on”…

So this time, I had crammed everything into two bags so as not to get tied up waiting for luggage to make the bus, which awaits just outside the terminal; was leaving in about 35min. The guy at the gate in Chicago said , “oh you need a wheelchair? We have to call them from another building for them to come over here.” I asked the girl how far away the exit to ground transportation was and she said , ‘just two minutes turn right at a sign”.

So I ended up doing exacty what I had taken such pains to avoid. Trekking at high speed across the airport with two peaces of luggage – a small suitcase and a backpack. The suitcase was on wheels but it still is hard and my back pack was open a little at the top. I draped it over the suitcase handle and noted that it was open again and that my phone was visible. I kept my eyes glued to that phone because I had just upgraded my blackberry for a brand new model. It was much longer than two minutes. Who does on believe about anything nowadays? Some learn time estimation better than others.

Of course I had to go to the bathroom and I don’t need to explain that we mean it when we have to go – we must go regardless of the situation. So I found a restroom and threw the bags down and just made it. When I washed my hands and exited the bathroom I had a feeling about my phone, even asked the lady that was cleaning if she had seen one – I don’t think they speak English when they don’t want to sometimes but she said no. – I didn’t see it on top of my backpack. ….was afraid to look so I started fumbling and feeling around and no phone.

I boarded the bus completely sweaty and distraught. I immediately sat in the front seat and emptied my back pack – no phone. It was unbelievable that things could go so badly. The bus driver was saying, ‘try not to get too upset but with all the trekking, redfaced, hot, sweaty and my brand new blackberry lost in the airport, I was coming unglued.

And angry that I had screwed up again. I have lost walking sticks , a drivers license, a winter jacket . all in the last several visits. I was really trying but the wheel chair didn’t come. It would have not happened had the wheelchair been there. Someone let the airport know that I was in need of assistance because the trip back was quite accommodating..

So the busdriver felt sorry for me; he had a blackberry that was brand new and exactly like mine. There were only a few people on the bus and a lady let me call it but it was off from the airplane. So he finally said, go ahead and look I’ll wait for you. By this time all could recognize my state of mind and how I was “different”.

I was so grateful but had to run, yes run back to the terminal because it was already time for the bus to be leaving. I ran into the airport and asked all the car rental people and the first one I asked said someone had found one and was going over there across the airport room to give it to the police. But the police weren’t there and no one knew where they went. So I’m going around , completely unglued., asking where lost and found was and I saw two TSA agents, and asked them if they were the police and had they found a blackberry . They said no one gave it to us.

So I headed back to the bus, asking outside information and others if anyone had turned one in …no luck. I boarded the bus, thanked the driver profusely and settled in for an anxiety driven ride to Peoria. I had planned on using that time to learn the phone, continue entering contacts from my old one.

I thought of asking the lady with the phone if she has unlimited minutes, thinking I could try to find it by checking around the airport. She didn’t have minutes but the busdriver did so I used his blackberry until five min. before arrival in Peoria , at which time I found the phone. They had it at the airport and had called numbers from it until they found me. It would be waiting for me on the way back.

But as I was searching the entire ride, a thought came to me that really calmed me down immediately. I thought of the earthquake and tidal wave that had just occurred in Japan, and a feelling of calm, spontaneously with the thought , took over. What is a cell phone compared to being trapped under a pile of wet debris praying someone finds you/ the tremendous loss of life? How silly and I took some meds, and made my calls and text messages somewhat calmly. My brother was in Tokyo and has to fly there regularly radiation or not. They have a hub there and it won’t stop all flights although some are being cancelled My hands didn’t work tho from the anxiety and physical exertion so I sent out garbled messages to many.

I was so glad to arrive at Bradley University and see Joan, April, and Gary sitting on the bench. I had called Joan from the busdriver’s phone at about 25 min, before arrival but got the answering machine. I erased everything from the busdrivers Blackberry I hope. The typing was so badly misspelled it looked like a real poor reader and writer had written them. Some were like my speech in the evenings – incomprehensible gibberish.

Joan had to go back and change her clothes because she didn’t get to go to the bathroom [ we have to be good travelers but I made the bus late because I had to go to the bathroom and that made the phone fall out]. It was such an emergency that I watched my phone instead of taking the time to just zip it up. It was hard to get closed tho and in such a state of anxiety, I just didn’t. So we went to the hotel and Gary took Joan back home.

I was rooming with April and when I walked into the hotel the ladies behind the desk said ,”are you the one from florida?” I said ‘yes and glad to be here what a day.” They said, " we were all worried about you.” I was too tired to figure out why- maybe I was supposed to call someone, Then the next day, the cleaning man asked, a friend outside my door,” are you the one from florida ?“. He had lived there for awhile.

The police had called April [her number is in my phone] and told her they were running to catch up with me and had the phone but the bus had pulled out. So I felt safe now, very relieved about the phone, very tired, but we needed to get something to eat; they don’t serve snacks on a bus and I had been too unglued to eat much. So we decided to go to Bob Evans. Joan was at home and Gary, April and I went to the restaurant.
Part 2 follows:

Now the fun began -it is much lighter than this one but I think there comes a time when you need an airport chaperone or the highest amount of help possible. I had to catch an early ride to the Orlando Airport and had a few hours to kill. They let me use the wheelchair to cart my stuff around, then I got on the plane first with it. Very helpful. And needed. There are some really nice people in the world. Parkinson has taught me that lesson. At first glance and hearing me speak they often are taken aback . I sometimes tell them when my speech is bad. But they figure out it is handicapping and are calling me sweetheart and honey before the ecounter is over. Ok – on to dinner.


Part 2
A kinetic demonstration of how we are all different.

April and Gary had traveled together because April needed assistance. Gary went to her home and they flew in together , rented a car and were taking me around and back to Midway on Monday so we all chipped in on the car. We got there early and others were not in yet or coming in the next day so the 3 of us went to Bob Evans

I knew I needed food but as often happens I take so much medicine that I can’t eat. My swallowing and vocal chords, throat are all worse from sinemet. The lower part of my face caves in and my voice becomes inaudible, consonants are not heard.


April still talks clearly so her dystonia isn’t as visible but she has a rumble of a tremor – it renders her useless, and she can’t walk, We were all tired and the food was just enough after a long day to make us all go off. Gary’s symptoms are similar to mine but he has dyskinesia in an eye and one side of his forehead. But he can’t walk either; he has to run. I can walk off but it’s with a right side limp that hunches me over like groucho marx with a limp. I can’t straighten up and shuffle walk, The balance on my right side is terrible. Bottom line, none of us could get out of the restaurant as we discovered just going to the restroom.

Again, April was shaking quite vigorously and had to sit. I could stand but would pitch forward if trying to walk and my right side doesn’t go with me. I didn’t go into dystonia or I would have needed a walker or something to get out. Gary can only run. So of course April and I got the giggles. We all three were paralyzed in different ways. We knew that others were looking at us. I explained to the employees that we would have to sit here and wait for our meds to kick in. She was very accommodating and said take your time.

We chit chatted , mostly with moans and groans until finally April ‘s tremors subsided and she thought she could walk. But Gary had to wait [and I’m belly laughing as I write this] until he had enough space to run. He could run but not walk.

I can’t remember how we got the doggie bags in the car. But April and I finally set out and made it to the corner where she could brace herself. I was holding her by the other arm and hoping neither of us fell because I need room to get into a safe stride and was off balance and festinating.

We were doing pretty well until we heard Gary’s feet shuffle running up behind us and then we both lost it. Now we had to contend with laughter, possible accidents in a number of orifices and staying on our feet. Gary had made it to the sign that said wait here to be seated and he wasn’t going any further until we were out and holding a door each for him. We did it and he ran all the way out the restaurant and through two doorways and to the car.

When you lose it, you may as well lose it big. We had many stares but how could anyone avoid it? I wonder if they understood why we thought it was so funny? I truly don’t know what people think sometimes. It’s hard to define us …..we are all off and on but no two exactly the same.

But we laugh. It made me giggle to sleep after a long and frustrating day of travel. And in the morning I would meet Beatrice, the dog.
That's full circle. Thanks for reading it!

[lou_lou]

just from midwest to west coast...
you do well paula!?
god bless you...

[1stLadyDawn]

I hate to mention this but without the deep pockets found in men's trousers, they run less risk of losing a cell phone than a woman does because the phone is usually not on our person. It might be a good idea to put your phone in a lightweight case which can actually be worn around your neck. A long enough chain or strap will allow you to use the phone withough actually removing it from your neck.

I don't have Pd, my husband does. But travelling with him can lead to distractions and if I lost my phone with all of that vital info while on the road, I would be distraught. As a matter of fact, I did lose it this year and it was never found. I had my number disconnected within a couple of hours and reinstalled on a spare phone my husband had but I lost years of info. I can't imagine what you went through.

I am trying to be much more careful but when we travel together, I will be using a case which won't become separated from my body.

When we know we are going out for awhile, my husband wears disposable adult underwear. He really doesn't need it but it eases the stress. However, if on a plane or bus, you can't be too safe. He thinks they show, they don't. But they do ease the tension and anxiety associated with "that fear".

It would probably be a good plan to ask about the wheelchair at check-in. Wait until they have actually looked it up and re-confirmed its availability before you move on.

The stress of air travel these days makes it so much more difficult for people with Parkinson's. You did a great job on the bus because it was less impersonal. Next time you fly, think of the airlines as if they were the folks you met on the bus.

[paula_w]

1stladydawn,

i know a pwp who fell and was able to call for help because he had a cell phone around his neck. You are absolutely right about trying that. I simply must. Thanks for understanding, but you[carer] are affected as well when things get confusing for us pwp. That really bothers me - i see others having stress in part because of me, or at least i feel like that.

Thanks for the suggestions!
paula