Life in a Wheelchair

With Christmas a little over a week away, everyone is scrambling to finish up their shopping (me included). So far, I’ve only bought two gifts. And I have about eight more gifts to buy. Not a crisis-amount, but it still seems a lot if A) You use a wheelchair, a B) Live in a freezing cold climate like I do (it’s -8 in Minneapolis right now). Not very conducive to leaving the house…I’m not new to this wheelchair-using existence though, and have over 15 seated-Christmas shopping experiences under my belt. Shopping while using a wheelchair can be both awesome and awful, and here’s why.

Why It’s Awesome

- Your feet never get tired and you can shop for hours on end. The bad thing about this, you could end up spending too much.

- If your chair has push handles (raises hand), you have the perfect place to hang all of your shopping bags. This is especially awesome if you’re mall shopping and slowly accumulate more and more bags as the day progresses. Drawback: You may end up looking like a bag lady.

Why It’s Awful

- Everything (and I mean everything) is crowded. Whether it’s the crowds of people crowding everything from handicapped parking spaces to the wheelchair-accessible bathroom stalls at the mall, to the crowds of merchandise placed awkwardly in stores, making it next to impossible to get through certain establishments, it’s enough to make you want to give up and go home.

- The condescending “Merry Christmas” chats you’ll get from random strangers while out shopping. A lot of able-bodied “do-gooders” will get in your face around the holidays because they feel sorry for you, thinking this is the perfect time of the year when they should be conducting random acts of kindness. While they’re generally well-meaning, for people like us, it can be very annoying (at least for me it is). It’d be nice to go through my holiday shopping experience unscathed one year.

Shopping Solutions

- Online shopping has been around as long as it has for one very good reason: Because it’s awesome. I’ve been online shopping since the mid-’90s and have loved every second of it (except for that time I bought a Tina Turner t-shirt on Ebay from a seller in Bangkok, only to have the shipment permanently delayed due to rioting at Thailand’s airports). Online shopping is like magic: You move your mouse around, click a little bit, then wait a few days, and voila! A package is delivered to your door. Online shopping is so perfect for people who use wheelchairs, it’s almost as if it was invented just for us.

Tiffiny doing some early Christmas shopping at a thrift store in Venice Beach this past summer.

- Be wary of where you place your purse/ money-holder on your person while you’re out shopping. I usually hang my purse on my right push handle, but when I’m shopping amongst throngs of holiday shoppers, I move my purse to my lap because the purse could be easily swiped. Beware! Just because you use a wheelchair doesn’t mean people won’t steal from you. Believe me, they will.

I’ll be fighting the massive crowds at the Mall of America later this week, and will be arriving freshly caffeinated with a hat on (that way I don’t have to worry about my hair throughout the day), and will also (most importantly) be determined and ready to get it all done in one singular day. Oh, and having a MP3 player helps too. It’s all about concentration. I’m like the Michael Phelps of shopping, people. Maybe I should put some Lil’ Wayne on my pink Zen Stone?

Matt does motivational speaking as a way to give back to those who supported him & extend a helping hand to others less fortunate.

What makes someone a role model? A role model can be anyone, some one you learn and take guidance from, some one who makes a difference in your life or the lives of others, or some one who uses their disability to inspire and help others.

Sometimes when we think of great role models we think of famous people with disabilities like former actor Christopher Reeve. Christopher & his wife Dana funded research to find a cure for spinal cord injuries & help improve the lives of people living with paralysis through grants, information & advocacy. Football players Doug Betters or Mike Utley, inspire others through their hard work & determination & hold events to raise money for SCI.

But there are many other disability role models out there that strive for a cause and make an impression on the people around them everyday. Matt Courson talks about this in his EasyStand Story, “Being a former athlete, I thought the Michael Phelps and Darren McFaddens were the athletes and heroes in our society. However, after attending these therapy centers, I learned that the girls and guys putting in the time and effort to achieve common goals were the real heroes. Instead of scoring touchdowns or winning gold medals, these individuals were defying medical history by recovering from paralysis!”

In Matt’s Story he also talks about his role model, “My father is my hero, he has portrayed to me what a hero is. He would work his job during the day and at night come home and do spinal cord injury therapy with me for a couple of hours. He is truly the man I want to be someday!” Matt we think that you are a great role model too!

We want to hear from you! Who is your role model and why?

Here’s a story about Myron Wright, a former high school athlete who was injured in a 2002 football game when an opposing player slammed him from behind. He vowed to someday walk again. For the past 8 months, he went through SCI therapy at the Project Walk spinal cord rehabilitation program in California.

Before attending Project walk, he had limited range of motion and his doctors told him that the shape of his body was resembling a wheelchair. At first he was hesitant to try many of the machines at Project Walk, including the standing frame. Myron has made a lot of progress, and now stands in his EasyStand at home. His family hopes to raise some money so he can return to Project Walk to continue his therapy.

Read the full article “Paralyzed Thibodaux man one step closer to walking”, published by the Thibodaux Daily Comet.

Take Action & Be Heard!

As promised, I am sharing part of the latest legislative update from NCART:

The November 4 election marks a change in the executive branch of government and its effect on the HME industry and complex rehab is unknown. President-elect Obama has not addressed the issue of HME and his selection of Department of Health and Human Services Secretary and CMS administrator will be key. Health care reform is a top priority for President-elect Obama and Democrats in Congress have said they are committed to making a comprehensive effort to reform our health care system. Work is currently underway to lay for foundation for legislation next year.

Under President-elect Obama’s proposal, most individuals would continue to receive coverage through their employer. Individuals who are uninsured would have access to a new public plan – modeled on the current federal plan for federal workers, or to private coverage through a “National Health Insurance Exchange.” This Exchange would also reform the private insurance market, incorporating a ban on excluding coverage due to health status. The plan includes a “pay or play” mandate for employers to provide insurance or contribute a percentage of payroll toward the cost of the national plan. Small businesses would be exempt from this mandate and would receive tax benefits to help purchase coverage.

President-elect Obama’s proposal includes an array of health system changes to improve quality, reduce waste and drive down health care costs. Proposed system changes include the use of comparative effectiveness research, disease management and care coordination, preventing Medicare waste and fraud, and increasing competition in the insurance and drug industry. Many elements of these reforms have support from Democrats and some Republicans.

Medicare is likely to be a big part of the debate. Many Democrats believe coverage through a public program is part of the solution for the uninsured and many leading Democrats have sponsored legislation that would allow individuals to “buy-in” to Medicare. Congress could also turn to Medicare savings as a way to finance health reform. President-elect Obama and many Democrats have called for reductions in payments for Medicare Advantage and for Medicare prescription drugs, among others. Any of the proposals for Medicare savings debated by Congress in 2007 and 2008 could be on the table, including the elimination of the first month purchase option for power wheelchairs.

Sen. Baucus (D-MT), chair of the Senate Finance Committee, expects to release this week his options for health care reform, and Sen. Kennedy (D-MA), chair of the Senate’s Health, Education, Labor and Pension Committee has been working on a proposal also. NCART will monitor these efforts at comprehensive health reform and advocate for more reasonable reimbursement of complex rehab and to avoid policies and programs that could potentially harm people with disabilities who need complex rehab technology.

Other health care legislation to be considered in 2009 includes the reauthorization of the SCHIP program which expires in March, and legislation to “fix” the current physician reimbursement reduction scheduled to go into effect in September. These two pieces of legislation, in addition to health reform legislation, are possible vehicles for attaching a proposal to eliminate the 9.5 percent reduction for complex power wheelchairs.

2009 is quickly approaching, now is not the time to sit back and wait to see what direction the new administration and Congress will take Complex Rehab and the HME industry. Now is the time to be vocal and let your Legislators know what you (either as providers of Complex Rehab, or consumers of these devices) need!

What actions are you taking to be proactive? How are you making your voice heard?

Did you see this video on 60 Minutes? It features a guy with ALS and a lady with a stroke who are both completely paralyzed and nonverbal. Neuroscientists have found a way to tap into the thoughts in their brain, and make them into actions performed through a computer. The gentleman with ALS is able to communicate by choosing letters on the screen, and the woman was able to move a cursor around the screen and even operate a power wheelchair with just her brain power. They also showed a monkey who actually controlled a robotic arm with his brain.

The hope is that the technology can help people with disabilities to communicate and control mechanisms like a wheelchair. See for yourself!

Watch the 60 Minutes video “Brain Power” or read the text version of the story here.

Because I sit in my wheelchair most of the day, my trunk muscles are not strong enough to steady my gun. Standing in my EasyStand helps me to steady my hand, making it easier to hit my targets.

One of the many activities I enjoy while standing is target practicing in from my patio. By utilizing my EasyStand Evolv stander, I feel it gives me the true position needed to target practice.

First of all, Iʼm in a standing position. Second, the tray on top of the standing frame helps steady my shot. Third, I have a better view. Finally, the support and balance the standing frame gives me is by far the most beneficial.

With all things considered, the stander helps prepare me for the real hunt. Thanks to EasyStand for improving my quality of life as a T5 paraplegic.

To read more about Jadian Foley, his activities, and standing routine, read his EasyStand customer story.

Does standing help you perform tasks or activities that are otherwise more difficult when in a wheelchair? What activities do you do while standing?

Ryan has Cerebral Palsy and uses a power wheelchair for mobility, but doesn’t let his disability slow him down. He does fun therapy in his standing frame, walker, and bike to keep his muscles strong for other activities. He goes horseback riding, skis, swims, and does many other things that able-bodied kids do. His mom, Luann, shares how Ryan stays healthy and active through daily standing therapy and a variety of other great activities.

When you see Ryan, you see a glowing kid, full of potential. Ryan started standing in an EasyStand Magician-ei when he was only three years old; he worked his way up to an EasyStand Magician Comfy and is a third grader already! We had the pleasure of meeting Ryan at his home during a photo shoot with the new EasyStand Bantam. In this video, you see Ryan standing in the Magician-ei, Magician Comfy, and Bantam.

What do you think of Ryan’s story? What activities do you do for fun?

I’ve had my standing frame for over a decade. I think I received it in 1994, but it’s been so long now I can barely remember. The exact date I got my standing frame is besides the point though. The worthwhile thing to blog about? The fact that my standing frame, an EasyStand 2400, still works as good as the day I got it. Now that’s something to write home about.

It can be a chore (at least for me) to work standing into my everyday, stressful schedule. As a freelance writer, a C6 quad, and someone who depends on PCA’s everyday (and does her own staffing to boot) my life is chock full of things that need to be taken care of. Taking a break from everything and putting things on hold as I stand for a 1/2 hour can feel counterproductive.

But at the heart of things I know it isn’t. In fact, after I stand I feel happier and ready to take on the day. Knowing my body is still able to stand is a huge ego-boost. Sounds silly, I know, but it’s the truth. So over the years I’ve learned how to multitask while standing. Just look at this pic taken this morning of me working on my laptop and drinking my morning coffee, all while I stand:

Here I am, drinking coffee and working on my laptop while standing in my EasyStand.

So in conclusion, it’s just a matter of life organization, in re: to working your stander into your life. It may feel like your dragging your sorry butt to the gym on a day you’d rather be in bed sleeping, but take it from me, it’ll still feel worth it when you’re done; and you’ll be very glad you did it. It’s a more-than-beneficial work-out.

I’m very lucky to have my standing frame, even if it’s over 10 years old. A standing frame may cost x number of dollars, but being able to stand? Priceless.

This powerful and encapsulating commercial from Liberty Mutual shows the challenges a young woman in a wheelchair experiences, while going out to vote. Nothing stops her, including a car that won’t run, rainy weather, or an inaccessible polling place. This inspirational commercial stars our friend and EasyStand Glider owner, Teal Sherer.

Teal is an L.A. based actor, writer, and activist for performers with disabilities. You can read more about Teal’s story and ambitions on her website at www.tealsherer.com

This commercial is a great reminder to get out and vote, and not let small obstacles stop you from doing big things.

Have you run into accessibility issues at the polls? DontBlockMyVote.org helps to engage people with disabilities and their supporters in the election process.