Personal Stories

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.

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?

I ran across this video on Youtube showing Matt, a young man who has ALS- Lou Gehrig’s disease, using the EasyStand stander. Shartrina is Matt’s wife and caregiver, and demonstrates how she transfers Matt into the stander and gets him into the standing position. She also has some tips on making it more comfortable, adapting it for use with a ventilator, and more.

Matt and Shartrina have an inspirational website called the Matt White Cure ALS Foundation where they have documented their story and are educating others on ALS. I encourage you to check out www.cureals.org to read about their story.

What do you think of the video? Do you know a person who has ALS?

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?

Matt building strength in the EasyStand Evolv Glider at Project Walk, in Carlsbad, CA.

It’s not everyday that you meet a person like Matt Courson. Matt is a 23 year old college student from Arkansas, who is a T7 Incomplete paraplegic. He is determined, hard-working, and the type of guy that you just sense the great attitude oozing out of him. I say this without meeting him face-to-face, but feel like I have after seeing him on youtube, Mattcourson.org, Facebook, and even the Washington Post.

Through his rehab programs at Kennedy Krieger Institute in Baltimore, Maryland, & Project Walk in Carlsbad, California, and hours of rehab at home, Matt is working towards becoming the 1%. To understand what it means to be the 1%, know that his doctors told him that there was a 99% chance that he would never walk again.

Earlier this year, the Washington Post wrote an article about Kennedy Krieger Institute and activity-based restorative therapy. It includes interviews with Pat Rummerfield, who after 17 years of therapy has regained his ability to walk, and Matt Courson who seems to be following in his footsteps with his hard work, faith and determination.

Matt Courson uses the EasyStand Glider stander, combined with electrical stimulation, to gain strength, build muscle mass, and ultimately achieve his goal of walking on his own again one day.

Watch the Washington Post Video “Possibilities for the Impossible”

What do you think of the Washington Post’s article and video, Medical Marvel- Possibilities for the Impossible?

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.

Karly is a young woman with Rett Syndrome. Since she is unable to speak, she uses her blog “Inspired By Love” as a way to communicate. Karly is a passionate writer, who has the ability to draw you into her world using only words. She says, “I love to write. I am entering some of my writings into an event in our community in December. It was so fun last year to enter my poems and music.”

Karly also uses facilitated communication (FC) to speak to those around her. FC is a process by which a facilitator supports the hand or arm of an individual who is unable to speak while using a keyboard, helping the individual to communicate. Karly shares her experience with FC, “When I was 9 years old, I started communicating with support using a keyboard. Prior to that I had no way to share my thoughts, fears, pain, or wishes. When I started to use this method, there was so much excitement for me and my family.” Read Karly blog post “Facilitated Communication Saved My Life.”

We first met Karly a couple years ago at her school. She uses her EasyStand stander as a way to experience things around her and to improve her quality of life. She talks about how she uses her EasyStand Evolv, “I love my EasyStand. I stand for at least an hour everyday. If I could, I would stand more. It helps so much to get pressure off my back and hips. Now that I am out of school I use it when I listen to books on tape, in the kitchen so I can be near the food and even on the deck.” Read Karly’s Story on our website.

What is your experience with facilitated communication or other assisted communication devices? Are there any disability related blogs that you would like to share?

Stand Up & Breathe-Karly Wahlin’s Story-PDF

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