abundant lifestyle tips for living with transverse myelitis
Fly United
Realize all these stories are mine alone. We fly United. No matter what your United bias, their act’s together for handicap accessibility air travel. At O’Hare, we "check in" at a special location. Staff Pushers take us through security to the departure gate, then use an aisle chair to get me aboard . . . Upon arrival they pick me up, get my luggage and get me to a taxi. They rock!
Drive with BraunAbility
Rick Braun lost the use of his legs at 15, so he built BraunAbility handicap driving innovations around his own experience. Others followed his lead. In fact, you may not need a converted van, just hand-controls, many of which can be found on Amazon.
Check the video below.
Hotel Cautions
Handicap accessibility may be required everywhere today, but I’ve seen no standard application. Marriott and Hampton Inn work pretty well for us; but talk directly to the hotel whenever possible. Reservation call centers often don’t have all the local information.
Attending Conventions
Using restrooms is my biggest challenge at conventions. It’s almost always difficult to get through the entry door. Then, for some unexplainable reason, the Handicap Stalls are always at the furthest point away from the entry. It’s a lot of work. Don’t ask me what I do when I discover someone in the stall that clearly doesn't belong there.
Eating Out
We’re “foodies” and eat out often. In most cases moving around the restaurant is easy. There’s plenty of obstacles but most guests are friendly and move out of the way. The Big Problem – getting in the restaurants, especially older ones with steps but no ramps. Take your business elsewhere. Frustration doesn't add up to an enhanced lifestyle.
Movies & Accessibility
Movies are our passion. Sometimes we go together. Sometimes Barbara enjoys going alone. We find most modern theater complexes well designed for handicap accessibility, with one exception: thick carpets make rolling up inclines difficult. Another issue: older facilities like our favorite Pickwick Theater have no elevator to the theaters on their 2nd floor.
Retail Therapy
While shopping is clearly Barbara’s thing, she’s taught me bunches about it. I enjoy Thrift Stores in particular. The smaller ones usually don’t have the space for those of us in wheelchairs. But try Goodwill, Salvation Army, and St. Vincent’s DePaul. Most have wider aisles, good lighting, and friendly helpers. Plus, the money you spend helps great causes.
Reading - My Passion
Being handicapped – at least for now – allowed me to start semi-retirement. This new state of being gives me much more time for my lifelong passion for reading. While all bookstores are my haunts, I particularly like Half Price Books. Getting to their top shelves can be a strain, but they usually have lots of friendly booksellers ready to help.
Helping with Gardening
I love getting my hands deep in the rich soil around our home, whether in our perennial border gardens, our wildflower patch, our shade garden, or the flower pots on the back patio. However, It’s a tough chore. Wheelchair wheels on grass get pretty shaky. Any suggestions? I’m trying to convert a 4-wheel furniture mover to a low-to-ground cart I could use to move around. We’ll see.
DIY & Woodworking
Like reading, this is a passion, but unlike reading a separate room for projects is a must. Right now I’m looking for a way to create a shop space. In the mean time, potential projects, like my antique surveyor’s tool, are waiting in the wings. Salvage and repurposed projects are part of my new enhanced lifestyle.
Getting Outdoors
I really miss not being able to get out of the house and go for a walk with Barbara or ramble through one of our local nature preserves. But, I have very little experience in this area as yet. PLEASE send us an email with your advice and stories. Here's a website that has figured out some things for us:
TrailLink at https://bit.ly/2KmD2i8
Getting Under Water – Scuba Style
Cody Unser began her Transverse Myelitis journey at 12. She embraced her TM as an opportunity to make a difference by establishing the Cody Unser First Step Foundation (CUFSF) which quickly evolved to include Quality of Life through an Adaptive SCUBA Program - Cody's Great Scuba Adventures.
Watch a SCUBA story at https://beat-tm.com/video-gallery
More Transverse Myelitis Lifestyle Tips
Financial Issues
Over the last two years of my treatment for Transverse Myelitis, it's estimated that we've spent close to $2 million. Thank God for my initial Advocate/Blue Cross Blue Shield insurance then Medicare. For many, the cost of our healthcare can be catastrophic. Since most of us are under 65 years old, private insurance and state Medicaid may be the only way to go.
Sources for Aid
If you're expenses are overwhelming every other part of your lifestyle, talk to your private insurer or Medicaid Rep. They may be able to refer you to other sources of help, like the Lutheran Social Services of IL. https://www.lssi.org/ They will work with you to develop an approach custom suited to your needs. . . and there's other great folks like them.
Enhanced Lifestyle Travel
We recently heard about Wheelchairjimmy.com https://bit.ly/2kKMRM7 with reviews of handicap accessible travel to cities worldwide.
In the mean time take a look at our TM Information page. NIH has published a good Fact Sheet at
America the Beautiful Pass
The America the Beautiful Pass, otherwise known as the the National Parks and Federal Recreational Lands Pass, is a FREE lifetime pass available to US citizens or permanent residents that have been medically determined to have a permanent disability. Passes can be obtained via phone, online, or in person at the parks.
Even though federal law requires accessibility in all State and National Parks, these cover a lot of ground, multiple trails and attractions. With that in mind, here’s a list of the most accessible trails across the good old U.S of A. Click here - https://bit.ly/2KnQ1k4
On the Road, Again
Welcome to the Able family! They travel across the country, with 3 kids, 2 adults and two dogs living in a 33ft RV. They're a family living life to the fullest and having fun and adventure along the way. Brian (dad) (living a great life in a wheelchair as a T10 paraplegic) Diane (mom) Jarod (16) (proudly one minute older than his twin sister) Makenna (16) Alexandra (11) Spoiled dogs Caramel and Pepper (3) (providing unending cuteness) Cute Bunny Clover. We make fun family videos to inspire people to live life to the fullest. Watch the Intro here
https://www.youtube.com/channel/UC0bFq7oeX3s-qZdz59fyK-Q
Now check out our Video Gallery 4 Fun on an accessible playground.
Wheel-Life Magazine
A global initiative for people like us and our Caregivers. It addresses the multitude of questions and challenges that come with using a wheelchair. Wheel:Life resources help us:
* Find quality health and medical resources, related research and news;
* Explore educational and employment avenues;
* Research the proper adaptive equipment, assistive technology, home modification and home medical equipment;
* Network within local and virtual peer support groups;
* Discover accessible travel destinations; and
* Enjoy a full and active life as a wheelchair user.
Just go to www.wheel-life.org