Last week I traveled to Boston for an ALS Study. The trip was partly an experiment to see if I could manage air travel and ALS. It was a learning experience.
The flight to Boston was on Delta. They offered me a comfort seat. Sounds good, right? Well, a comfort seat is the first row after first-class. The first-class seats are wide and comfy and those passengers are seated first, even before those needing assistance.
When my turn came to be seated, I was rolled down the jetway in my transport chair. From there I transferred to an aisle wheelchair. A private company is contracted by the airlines to help get you into your seat. I felt comfortable seeing two men, one well built, who could assist my husband. I wore a gait belt to help with the transfer. You are strapped onto a narrow seat; seatbelt around your waist and another around your legs. You are advised to keep your arms tucked in against your chest. As I wrote in my Facebook post, if I weighed less it would help.
The transfer was a success, but the design of the aisle in the plane was comical. The aisle was a straight run past the first-class seats. Then it took a zig-zag to the left where my seat was. Sort of a stupid design if you ask me and very difficult for transferring. The comfort seat was not comfortable. It was a joke. The sides of the seat were rigid metal and I had to squeeze into it. I don’t think my bottom hit the seat the entire trip. (Remember my comment about weighing less?) While the transfer went well, the seat was extremely uncomfortable.
The second transfer was not as wonderful and the lone gentleman contracted to assist was smaller than my first well-built hero. Neither the size nor the look on the face of this lone ranger gave me the feeling that things would go well. After a few acrobatics and a painful tug backwards and upwards by the lone ranger on the gait belt, I made it into the seat. The lesson we learned is to instruct those assisting you so they know what you want them to do and how to do it. It also helps to be cooperative and have an open mind because this transfer stuff can be hard work and is definitely not for the faint of heart. I suggest practicing beforehand so no one gets hurt.
Even though the second leg of our return trip was delayed and we wound up arriving home at 2:30 A.M., we discovered that Southwest is the way to go. Southwest is truly an airline that loves its passengers. We were assisted into our seat by a wonderful steward named Dusty, who by the way, appreciated the gait belt and my husband’s instructions. The midnight serenade by the Captain after a 2 ½ – 3 hour delay was an added bonus.
Although the trip was supposed to last from Thursday to Sunday and include a mini vacation, we cut it short. My wise husband decided that there were too many uncomfortable factors to deal with this time around. We learned one important rule – secure an ADA room in a newly constructed hotel. We hope to try again and have better luck. Seafood and a cannoli did help wipe out some of the unpleasantness though.
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Boston Seafood
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Cannoli shopping
Now onto the important part of our trip, the research study. The study was made available through PatientsLikeMe (PLM). The folks at PLM are SUPER accommodating and truly understand the ALS struggle. Their travel agent, Kathy Simonelli of FCM Travel Solutions in Boston, is also THE BEST!
The trip was to collect blood biomarkers from me for a study. The study looks at biomarkers in blood to learn information about diseases. In this study PLM partnered with Denali Therapeutics to conduct “a pilot study to evaluate the biological signature of ALS and to support the development of a potential new treatment for neurodegeneration.” PLM “believe[s that] sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible.” PLM believes that uniting people (patients and researchers) speeds “up the pace of research … [in the hope of] fixing a broken healthcare system.” And I think we all can attest to the brokenness of our healthcare system at present. Collaboration. Something our legislators need to put into action.
References
PatientsLikeMe. Advancing discovery in ALS. Retrieved August 4, 2017, from https://www.patientslikeme.com/advanceals?utm_source=denali&utm_medium=
partner&utm_campaign=denali_als_website_link
PatientsLikeMe, Openness Philosophy. Our philosophy. Openness is a good thing. Retrieved August 4, 2017, from https://www.patientslikeme.com/about/openness
I had a date today with my aide. We went to brunch to celebrate my 60th birthday on Monday. I never imagined celebrating 60 in a wheelchair, but it is what it is. If there were sidewalks here, I’d be out more. It will be interesting to see what happens in the winter. When I took the trip to Boston, I started shivering the second I got off the plane. Seems that 60 degrees is too cold. Heat does not bother me though, or at least it doesn’t bother me now.
ALS and ME 