More Polio-Related Reading (plus a video)
My article “Conquering Mysterious Foot Pain,” published in the PHI newsletter, can be found at: http://www.post-polio.org/edu/pphnews/PPH28-fall12p.1-5.pdf. It delineates the odyssey
I went through discovering that I had acute tendinitis and tenosynovitis in my strong foot, and how I eventually healed this condition. There are also links within the article to the exercises I learned that were essential to my healing. The link may say the article is in Japanese (the Japanese polio community was especially interested in the article), but it’s not!
My article “The Wild Handicapper in Yosemite” (Ability Magazine, Feb/Mar 2016), can be found at: www.abilitymagazine.com/Ray-Romano/Yosemite.html. It is also mentioned in Post-Polio Health International Polio Place: www.polioplace.org/history/artifacts/accessible-yosemite
The War on Microbes, PBS/Nobel Media. This is a half-hour film on the eradication of diseases through immunizations, in which I appear as the polio representative, and also the only person in the film who talks about what it was like to have a communicable disease that has since been nearly eradicated through the use of vaccines. You can view it at: http://www.nobelprize.org/mediaplayer/index.php?id=1824.
“Sixtieth Anniversary for Polio Pioneers,” by Karie Youngdahl, shares stories from people who participated in Jonas Salk’s 1954 blinded polio vaccine trial. It can be found at: https://www.historyofvaccines.org/content/blog/sixtieth-anniversary-polio-pioneers.
“When Meeting Friends with Disabilities,” thirteen general rules from Easter Seals on how to treat friends with disabilities: http://es.easterseals.com/site/PageServer?pagename=ntl_friends_hint.
Pain-Free Living, a magazine with useful, researched articles and tips. www.painfreelivinglife.com
Helpful Technologies
Dynamic Bracing Solutions, www.DynamicBracingSolutions.net. Contact for an orthotist near you. Not for everyone, but those with less-severe polio effects may find very helpful. [email protected].
Human Gait Institute, www.humangaitinstitute.org. Training orthotists, research of orthoses for musculoskeletal deficits, some financial support for newer orthotic technology for those who need it. Closely connected with Dynamic Bracing. 9461 W. 37th Place, Wheat Ridge, CO 80031-5438, (303) 829-1538.
Lofstrand crutches: The best brand of these arm cuff crutches I know of is WalkEasy, based in Florida. They ship all over; the crutches are made in Germany and France, depending on size, so they are available in Europe as well, though probably under a different name. They come in lots of different colors, too! www.walkeasy.com, (800) 441-2904.
TravelScoot, www.travelscoot.com. These scooters are made in Germany. I love mine: it’s lightweight, comes apart, and the heaviest part weighs only about twenty pounds. No lift is necessary for putting it into a trunk or the back of a car. You do not take it apart for plane travel; you just remove the lithium battery and take that into the cabin, and the scooter is taken to the hold, just like a baby stroller. It is not recommended for people who have severe mental difficulty or poor balance, since it is tricky on hills with slanted paths. (800) 342-2214 in the USA; website directs you to foreign availability.
Pride Go-Go scooters (www.pridemobility.com) are also an option, though these require either a van with a lift or a strong individual to lift the parts, the heaviest of which on the small model is about thirty-five pounds. These and heavier models are fine to rent, and may better serve on rougher grassy or graveled terrain.
Disabled or Handicapped Sports
Disabled Sports USA, www.disabledsportsusa.org. Snow and water sports for people with handicaps, including mental handicaps.
National Ability Center, www.discovernac.org. Programs for the differently abled in many sports.
Achieve Tahoe Adaptive Sports Center, https://achievetahoe.org, founding chapter of Disabled Sports USA, Alpine Meadows, Northstar, and Squaw Valley, South Lake Tahoe, CA. Snow and water ski instruction for ability-challenged.
Handicapped Travel
The Rough Guide (published New York, London, and Delhi) and Lonely Planet (published in Oakland, London, and Melbourne) are my overall favorite travel guides for just about any destination. While these are not specifically written for handicapped travel, they often describe the difficulty of a particular walk and, importantly, exactly how long it is, as well as whether there is an elevator where you want to go. They also sometimes indicate wheelchair accessibility. I have also used the AAA guides (Automobile Association of America). I use the Trip Advisor website frequently to search hotels, though once I find lodging that seems well located, has a pool, and doesn’t require me to use stairs, I call to see if there is accessibility for the pool, the front door, and whatever else I need in order to be comfortable there. Trip Advisor reviews tend to be reliable and I have reviewed about one hundred hotels myself on that site. Rarely does anyone address handicapped issues, so I always note whether there are accessibility problems (even if I can manage, but a wheelchair user would have difficulty).
Accessible Cruise Planners—worldwide destinations. 800 801-9002. My info says, “ask for Steve.”
Accessible Journeys, www.disabilitytravel.com, is dedicated to travel for people in wheelchairs and their companions.
Access Tours, www.accesstours.org, offers accessible package tours of National Parks and other areas in the western states. (800) 929-4811.
Angloinfo “People with Disabilities” page, www.angloinfo.com/how-to/france/healthcare/people-with-disabilities. Disability info for English-speaking travelers in Paris, France.
MyHandicap, www.myhandicap.com. A European site; not a lot of info, but a start.
National Park Service “Accessibility” page, www.nps.gov/accessibility.htm. Here you can download the National Park Service’s access guide for visitors and potential employees. I download this guide when I go to Yosemite to update myself on their latest wooden and paved pathways and options.
No Limits Foundation, www.nolimitsfoundation.org, provides a camping experience to children who have lost a limb. They also partner with Yosemite National Park to bring wheelchair access there.
Travelconsumer.com “Traveling with Disabilities” page, www.travelconsumer.com/disability.htm. Lots and lots of info! It even lists cruises that have dialysis available.
VacationsToGo “Travelers with Special Needs” page, www.vacationstogo.com/special_needs_cruises.cfm. Information about the special-needs facilities, amenities and services provided by a number of cruise companies.
Yosemite Conservancy “No Limits: Yosemite Adventures for Wheelchair Users—2017” page, www.yosemiteconservancy.org/visitor-services/no-limits-yosemite-adventures-wheelchair-users-2017. A program partnering with the No Limits Foundation to provide greater access to a wider range of Yosemite National Park for adult and youth wheelchair users, with adaptive outdoor recreation assistants.
Buying Mis-Mated Shoes
National Odd Shoe Exchange, www.oddshoe.org, accepts new mis-mated shoes as charitable donations and also matches people with mis-mated shoes, though I have not been successful in determining how to trade shoes in the last several decades. I just donate my mis-mates and take a tax deduction.
Nordstrom, www.nordstrom.com. You buy the two different-sized pairs and then ship back the mis-mates (with an explanatory letter and request for refund), and they give you a credit card refund for the price of the less expensive pair.
Zappos, www.zappos.com. They do not split pairs, but this is the easiest way I have found of buying shoes: just buy two pairs and donate the leftovers. They also provide free shipping coming and going.
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Acknowledgments
Thank you to everyone who has hung in with me during this project, listening to both my perhaps self-absorbed excitement and my occasional discouragement. But in particular, thank you to my writing group, Just Write Marin County, and within that group, especially Aline O’Brien, Lori Samuels Amada, Maryan Karwan, Johanna Kee, Steve Shoen, and Sandy Handsher, who have either read parts of the book or listened to me read, and most importantly, provided unlimited encouragement and camaraderie. Thanks of the bow-down-and-grovel type to Gillian Glover, Shirley Klock, David Wagner, Sharon Skolnic
k-Bagnoli, and Steve Bratman, who read entire, early, partly-crummy, mind-dump drafts and gave me valuable feedback on potential refinements. Thanks to Leslie Davenport (also for your feedback), Katherine Falk, Nancy Falk, Farida Fox (who knew the brand was “Taylor Tot,” not “Trailer Tot”), Tom Paratore, Alan Rinzler, David Roche, and anyone else I’ve neglected to include who also read beta versions, even partially. Special thanks to Ed Gray, Susan Richards Shreve (whose memoir inspired me to write mine), Brian Tiburzi, and Anthony Tusler for reading the whole nearly-final draft and “getting” the book, and for your feedback. Thanks to Brooke Warner, Lauren Wise, Julie Metz (who expertly made the cover I imagined better than I dreamed it would be), and the staff at She Writes Press for believing in this book. Deep appreciation to Krissa Lagos, my kind and intelligent editor, who listened to my revision anguish through email and knew which rambling side trips to cut and what needed magnifying; and thanks to Chris Dumas for his eagle proofreading eye. Kudos to Maggie Ruf of SparkPoint Studio, who apparently did a mind/heart meld with me to create my website; I stand amazed. Thanks to Dave Eggers for your generous encouragement and advice. Thanks to Daralyn Hansen for nearly seventy years (and counting) of friendship. Thanks to Krysten Elbers for your surprise contribution and for always knowing what is important to me. Thanks to Mom for not giving up on my little leg and loving me as best you could. (Next lifetime, if there is one, more fun, OK?) And a constant thanks to Richard Falk, who supports me in all ways and without whom I would not have had the time or financial wherewithal to write and publish a book.
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