Letters: November 2013

FES: Not Rocket Science
The September issue highlighted two similar but very different methods for keeping our paralyzed legs active [“E-Stim for Wellness”]. Both are effective — FES bikes maintain muscle and circulation, while FES rowing provides for muscle and bone growth as well as all-body cardiovascular fitness. The FES bike costs around $18,000 and the FES rower around $3,500. This cost structure means that most people with SCIs cannot afford to have an FES bike in their home but may be able to go to a local rehab center to reap the benefits. The FES rower is commercially available at a more affordable price. However, at the current time, the portable FES unit that is used is imported from the U.K. and is not FDA approved (it must come in under a research protocol or prescription via a hospital or doctor).

I’ve been extremely fortunate to have changed my life 12 years post-injury by enrolling in the FES Rowing Study at Spaulding Rehab Hospital six years ago. Dr. Taylor, the lead researcher who knew nothing about SCI, immediately recognized the benefits of FES rowing when it was demonstrated to him by a group who started it in the U.K.

In general terms, FES is not rocket science, and rehab hospitals should be at the very least introducing portable stim units (there are thousands online) to SCI survivors so that they have the opportunity to maintain muscle and improve circulation from the comfort of their own homes.
Dave Estrada
Boston, Massachusetts

Barry’s Spirit
Thanks for publishing the Dartmouth article about Barry [“Barry Corbet: Nothing Missed, No Regrets,” September 2013]. Barry was one of “them.” I can’t really define “them” very well, but whenever I have met one, I feel the most joyous and positive sense of community the way it was meant to be. I wrote for Barry on and off for many years, and like many other NM contributors, I learned a lot — about writing, and about myself and my “story” — that unacknowledged agenda I carry around in my ego-mind that kept me separate from Life, the Universe, and Everything for so many years.

In the late ‘90s, during a check-up trip to Craig Hospital, I called and asked Barry if I could bring my wife Ellie by his place so I could make introductions. Barry said we could come, of course, but only if we let him cook us dinner. To this day, Ellie and I discuss both that incredible steak and the way Barry made us feel. Ellie called him “solid and compassionate,” and we still laugh about not wanting to leave. (We are always the first to sneak out of social gatherings of any kind.)

Ellie and I recently introduced a book by Pema Chodron into our morning practice of reading three book passages to each other. Raised in religious homes, we were taught that Buddhism was a pagan cult, but Chodron not only gives us wonderful clues about why we loved Barry so much, but continues to teach us simple, effective tools for becoming the kind of human beings our very different churches always talked about but seldom demonstrated. We strive each day to fear less and love more, and one of the keys to that life change is thankfulness, so thank you, NEW MOBILITY, for reminding us about Barry’s beautiful spirit, and about how thankful we are for having it touch our lives!
Kevin Robinson and Ellie Apuzzo
Duck Key, Florida

Delta Disgraceful
What Kanaan experienced is heinous and horrific [“Forced to Crawl, Man Sues Delta,” October 2013 News]. It is disgraceful that Delta, the employees of the airport in Nantucket, Mass., and the non-employee travelers at the airport allowed this to happen. I just visited Nantucket this summer, and after seeing that airport, I can tell you that just about anyone in the terminal witnessing Kanaan’s crawl could have or should have walked out and helped him or demanded that someone did.

That being said, I hope that NEW MOBILITY readers see this as a Delta problem and not a Nantucket problem. As a C6-7 SCI survivor, I can tell you that a visit to a 400-year-old city is full of challenges, but the islanders went above and beyond to make our stay as accessible as possible. I recommend that anyone in a wheelchair reach out to the island’s disability advocate, Brenda McDonough, at www.nantucket-ma.gov/Pages/NantucketMA_BComm/disability. We stayed at a friend’s house, and Brenda went out to their house prior to our visit, outfitted the house with ramps, provided us with a beach wheelchair, and gave us literature highlighting all of the accessible shops, restaurants, and tourist attractions on the island. All of this was free.

What Kanaan experienced is completely unacceptable, and I hope Delta pays. But I hope that others are not discouraged from visiting Nantucket.
Kelly Hamilton
Punta Gorda, Florida

Another Delta Incident
I recently flew Delta from Lexington, Ky., to Denver [October 2013 News, “Forced to Crawl …”] connecting in Detroit. When I transferred to the aisle chair, the flight assistants did not help and I fell to the floor. On my way back home, again in Detroit, when the flight assistants showed up, I recognized one guy. I said, “You let me fall, and he said, “That’s not the first time,” and continued laughing while transferring me.

When I arrived back in Lexington, I complained. The manager said she would make sure the assistant went through training again. You can’t teach someone to have compassion for someone with a disability. Delta called later and offered a $100 voucher for my next flight. I declined and said that will not make up for it since I would never fly Delta again.
Heidi McKenzie,
Miss Wheelchair Kentucky 2012
Salt Lick, Kentucky

Guinness Ad: One Small Step
Since when has any journey been completed with the first step. Inclusion, like anything else in life that’s worth having, is a collection of starts and stops [“Guinness Ad Goes Viral: Inclusion or Tokenism?” September 2013 online News]. The Guinness ad is just that. One step among many.
Eric Stampfli
Danville, California

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