Letters July 2013


Nice to Know My Options
The “Wheeling Beyond Limits “ article was especially helpful [“Wheeling Beyond Limits: Add-Ons for Your Chair,” May 2013]. I’ve had nothing but problems with the power chair I keep trying to use. It only works about 50 percent of the time, and no-one, including the manufacturer, can figure out what the problems are — hence they can’t fix it. I have some time to go before insurance will help with a new power chair. The alternatives for making manual chairs do more, instead of having to use a power chair, are truly exciting! I had no idea what is out there.

As a 31-year complete para, my hands and shoulders definitely feel the wear and tear. I still prefer my manual chair though, and do still wheel about five miles a day, and even do occasional 5K races. I love knowing there are new products out there that will help maintain me in my manual chair.

Also, I loved your article about wound care [“A New Model for Wound Care,” April 2013]. I wish I had this information a few years ago when I got my first pressure sore. My doctor wanted me to get a new chair and the one “they” chose didn’t fit. I lost nearly four years to down time, including 10 surgeries (two for flaps), seven rounds of multiple super-strong IV antibiotics (six to eight weeks at a time), a lot of time spent in a Clinitron bed, multiple hospital stays, and much of the entire time on a wound vac. There was MRSA in the ischial, thanks to the nurses who left pieces of sponge from the vac in the wound. I was lucky to live, let alone to be able to resume my usual routines and activities.

It’s exciting to know about the progress being made in wound care treatment. I had no idea how debilitating pressure sores could be before my experience. I was so lucky to finally find some doctors who could help me. It’s been about five years since that all happened, and I’m doing really well now … no new problems.

Kudos to Dr. Ruben and his staff! I’m making a copy of the article to give my doctor.
Joyce Tucker
Clermont, Florida

 

Rio Mobility makes manual (pictured) and power attachments.
Rio Mobility makes manual (pictured) and power attachments.

Check Out the Dragonfly
I have had a great experience with a clip-on handcycle type device called Dragonfly, made by Rio Mobility (riomobility.com). It has been a great alternative to pushing. I also use the Surge handrims mentioned in your article [“Wheeling Beyond Limits”]. My shoulders, wrists and hands have had a lot of issues and this “bike” attachment has allowed for a completely different type of movement, which was especially useful during rehab of my shoulders. It has added a cross-training function in my exercise routine. I have to mention also that it is an incredibly easy snap-on option for local travel. I highly recommend it.
Johanna  Greenberg
Santa Rosa, California

How About Rota?
Good article about add-ons for your wheelchair to help with pushing [“Wheeling Beyond Limits”]. As a high quad, I would liked to have seen Rota mentioned (rotamobility.com). It uses a push lever and so is just another way to “wheel,” and as quads are so unique in their abilities I thought it may help someone.
Joyce Murland
Lynden, Washington

A Shout-Out to Ralph Braun
As a long-time user of Braun lifts and minivans, I have heard a lot about Ralph Braun. I would hear stories about Ralph from my dealer and occasionally I would read little articles about him and The Braun Corporation.

While living in Champaign, Ill., I had driven to the Winamac, Ind., plant on at least two occasions for service work on my lift. I once sat in one of Ralph’s personal vans to get an idea of how something he used for himself might work for me. Still, I never met the man. When I would visit the Winamac plant, Ralph was out to another of his plants in Florida or elsewhere. I had one of those six-degrees-of-separation relationships with Ralph. For me, Ralph had been this rural, folk hero guy who invented wheelchair lifts, the demand for which led him to become an industry leader in automotive mobility products for people with disabilities around the world.

So today this story from Jenni Gold gives me pause [“The Legacy of Ralph Braun,” May 2013]. I am 65 years old and bought my first Braun lift in 1985. As I reflect over my young mobility escapades, my schooling years, my career and my family vacations, I have to give a major shout-out to Ralph Braun. This man has had a major impact on my life. Without the mobility products that Ralph brought to the marketplace, I would not have had the mobility that I needed pursue to hold down a job, to take on all those evening classes that led to my graduate degree, to zip across town for another meeting, to broaden my career, to take my children to school, to go grocery shopping on my own, to serve on my community’s park board, to become a respected leader in my profession. Now I get to pick up my 5-year-old and 3-year-old grandchildren from school in the afternoons. I drive them to the park, to the movies, to … everywhere!

My power wheelchair is fantastic. I can fly up and down those sidewalks at 6 mph. My grandkids love to ride on the back of it. But my Toyota Sienna Van by BraunAbility is my passport to a whole and complete life.

So thank you, Ralph Braun, for living your life to the fullest. And thank you, Jenni Gold, for reminding me of how important a man Ralph has been to me and countless others like me.
John Tuohy
Champaign, Illinois

More Budget-Friendly Content
I enjoy your magazine, but I wish you’d do a better job for those of us who can’t afford products like brand new vans that are $40,000-$60,000. You do a lot of good stories about people working, but not enough stories about those of us who can’t afford this stuff.

You have the opportunity to do more with your magazine than cover high-priced travel and other stuff that most of us can’t afford. Please think of us as well.
Barbara Clark
Belleville, Michigan

MV-1 Falls Short
It is incredibly distressing that the MV-1 has, yet again, taken two steps forward and three steps back. Why shouldn’t there be an option for drivers who’d like to drive from their chairs? That would take care of the lack of a passenger up front. Also, why is the price so high? This type of vehicle was supposed to be designed with the average wheelchair user in mind. Well, the average wheelchair user wouldn’t be able to afford the new version MV-1, not to mention the original. How does this help? Is it any wonder that the only people with disabilities who do well are those who are well off?
Justyna Niewiadomski
Chicago, Illinois


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