So what is it like to travel with someone with Lewy  Body Dementia, you may ask? Well after recently traveling with my husband who suffers this unpredictable disease, from Boston to Houston, via United Airlines, I feel fairly equipped to answer that question. Let me give you a snapshot of day 1 (I promise, only one day here!): Limo pick-up perfect! But then again, our driver is a close friend who often accompanies us to and from our Mass General Hospital appointments, who just happens to drive limo for the same company Art did prior to his diagnosis. Walter, ever the early bird, arrived (as expected) 15 minutes earlier than our requested time. Let’s check that time….5:15 a.m. The other former limo driver in our family was waiting outside smoking a cigar when Walter arrived. Yes, my love still smokes those nasty things, and as much as I detest it, I will not deny him this simple pleasure when so much else is out of his control. Onward to the airport with the sun rising before us…

Once at the airport a wheelchair was procured by our favorite limo driver. I wondered if anyone else around us thought it weird that our limo driver retrieved our luggage and then gave us each a hearty goodbye hug. (Who is that limo company again? Their drivers sure are friendly! ) Once inside, the airport personnel jumped into action pretty quickly, and we had our efficient escort in no time at all, which proved beneficial all the way around. We breezed through baggage check and security (Art never having to leave the wheelchair)-the first time ever his C-PAP machine glided seemingly unnoticed through the  x-ray machine! This escort was truly amazing-we never had to so much as hit a counter or machine-he did it all for us! All I had to do was just stand and watch over my guy in the wheelchair! With all the usual hurdles passed, he gently rolled Art right into a nifty spot directly beside the desk at our departure gate. No questions asked. We were there, we had arrived with minimal effort on my part and topnotch efficiency on this gentleman’s part. Makes it all seem pretty seamless and easy, right? Well, maybe for one of us…

You see, the unexpected tends to make the Lewy Body sufferer incredibly nervous, and anxiety plays a huge part of bringing on an attack. That morning, Art suffered one of the worst attacks he had ever experienced. While he knew where he was, he was often confused as to what our escort was doing, asked more than a few times, “Why are we here?” and “What’s happening?” all the while his body was writhing with unforgiving jerks, making him feel like all eyes were glaring at him, judging him.  He struggled to speak, but once he managed to get the words out they crushed me to the core. “They must think I am a drunk with the  D.T.’s.” With those heart wrenching words expressed, he cupped his hands around his eyes, so he couldn’t see what he felt must certainly be throngs of gawkers, unmercifully staring at him.

Thankfully we were allowed to be the very first to board the plane. That in itself was an experience, as the wheelchair goes to the plane, not on the plane. There is little room in the isle for it, and thus, Art had to take the long, rather halting, tough walk down the narrow aisle to the back of the plane, where our seats awaited us. What a blessed relief they were! We learned sitting in a window seat works best for him, as he continued throughout the four hour flight to suffer the severe jerks and tremors that had horrendously invaded his body. He could lean on the window/plane to help control his severe movements, which tends to help slow things down for him. Putting my arm on his shoulder, even better around him, helps as well. As he put it, “I feel like I am not going through this alone when you have your hands around me.” And so I do. Being in the window seat meant the person feeling the full effects of his tremors would be me, and not the person on the opposite side of me. Also, he feared his uncontrollable body  movements would have been knocking into the stewardesses and others in the aisle as they made their way past us. Thanks to our physical therapist and occupational therapist friends-we  listened and did this right! Inner seating a must!

Deplaning means waiting to be the last people off the plane. The wheelchair was a welcome sight as we maneuvered our way around with our new, eager to please young escort. This was day two on the job for him, and he was still learning where everything is. We eventually made it to our fairly cleared out luggage carousel, again last….but hey, our one piece of luggage was on it, so score!! I was especially happy to see my brother-in-law Barry walking towards us as soon as I had snatched up our suitcase! Yes, you read that right-one suitcase for an entire week. Also, one carry on. That’s it!! Being seasoned, veteran fliers we have learned to economize our luggage over the years. That in itself was a blessing this time around! Not having too much to schlep around was heavenly! We were afforded door-to-door service using the wheelchair-from the door of the plane, to the door of Art’s brother Bob’s pick-up truck. I can’t say enough about the support and assistance United Airlines provided, as well as the two international airports we traveled through.Things I have learned as a result of this flight: most people are glued to their technology in this day and age, and barely even notice you. Additionally, people are in general kind and helpful, regardless of what you may have heard before! Oh yes, and lastly, when the person on the aisle seat next to you asks questions, and you (me) share a bit of your (mine) faith them, they just may surprise you and share a strong faith in God as well. So Hannah, our lovely, curious,  twenty something young seat mate, who is headed off to Antioch College in the fall to begin her studies on the brain, thank you for telling me that sitting next to  us was “A blessing.” I can assure you, it was indeed a blessing sitting next to you.

 

 

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