5 lessons learned from 27 years of having an SCI

Guest blog post by Bob Vogel

This Friday, March 2, marks the 27th anniversary of my SCI (spinal cord injury)—T10 complete para—the result of a crash while performing aerial acrobatics on skis at age 25.

Each year when the anniversary rolls along, I honor it by taking a few moments to reflect on the amazing life and adventures I’ve had since my injury, as well as, odds and ends I’ve learned along the way. Here are a few random thoughts on life with SCI—things that have worked for me and things I wish I had known and/or would have done differently.

 

Random Thoughts—Things That Have Worked

1. The most important tool for healthy skin is a mirror-check twice a day.

An example of how a mirror check helped me avoid skin problems happened back in the mid 90s—a new cushion manufacturer offered me a demo of one of their cushions—a unique design that looked and sounded really cool and worked well for some people.

Before using the new cushion I had a pressure map reading (a system that displays areas of high and low pressure points—typical high pressure points are usually bony areas) done on it. From the pressure map reading, it looked good, so I gave it a try.

I did a mirror skin-check that evening and the skin on my butt was bright red—a serious warning sign. By the next morning the skin color had returned to normal so I figured I’d give it another try. While sitting on the cushion, I double-checked to make sure that I wasn’t bottoming out—and I wasn’t. After a few hours, I did a mirror check, and sure enough my skin was bright red and looked even worse than the previous night. I returned the cushion. If I hadn’t been in the habit of doing daily mirror checks, I wouldn’t have known the cushion wasn’t working for me. The first sign of trouble would have been a major pressure sore.

Another important reason to do a mirror check is because pressure sores usually occur with within the first years of the SCI, or 15 or more years after the SCI. The reason pressure sores often occur 15 years or more after SCI is that skin gets thinner and weakens as we age.

Too often I’ve heard of a friend that has gone years with healthy skin and no redness, and becomes complacent about checking. Without daily mirror-checks they don’t notice any areas of redness—a warning sign that skin, or posture has changed—and the red area continues to worsen. The first sign of trouble ends up being a major pressure sore and a hospital stay. Something that could easily be avoided by a simple mirror check.

 

2. Document medical issues for reimbursement purposes.

Often we wheelers become so adept at managing small SCI problems like minor pressure ulcers, or back or shoulder pain that we neglect to mention it our physicians. But we should. By making sure your physician documents—writes it down in your charts—any and all pressure ulcers, however minor, or back or shoulder pain, you have a written record in your medical charts, something that can make all the difference when it comes to time to request reimbursement for a specific cushion or wheelchair.

In my case, when I first got out of rehab I was sent home on a memory-foam cushion despite asking for a ROHO^® HIGH PROFILE^® Single Valve Cushion. Even though I was diligent about doing weight shifts, I got a small pressure sore within three months. Fortunately, I caught it during a mirror check and went to the doctor right away. After the pressure ulcer was documented, I was immediately approved for a ROHO and managed to heal it at home.

 

3. Connect with others with SCI.

Connecting and networking with other people with SCIs has been vital for me on many levels. It has helped me learn tricks and tips to living and thriving with an SCI. Being able to share thoughts and feelings, and get feedback from other people with SCIs helps put things into perspective.

Since I first attended SCI support groups in rehab, mentors with SCIs have had an important impact on my life. At the support groups, I was still trying to grapple with the idea that there is life after SCI, mentors would wheel into the support group and share their lives and what they were doing and show that life goes on after SCI. It is every bit as rich and exciting as ever.

When I first got of rehab, a hang glider pilot acquaintance, Dan Buchanan, who is also a T6 para, became a mentor to me and helped me with things from how to set up hand controls in my car and how to modify my hang glider with wheels, to suggesting foods and strategies to help avoid bowel accidents, and what to do when the inevitable accident did happen. Dan and I became lifelong friends and we still bounce thoughts and ideas off of each other.

Over the years, I’ve been very fortunate to form close friendships with others that have SCIs, to this day we often touch base to ask about or trade information on some type of SCI subject, or just check in to exchange thoughts and feelings. A perspective from a friend that has experienced similar feelings and or circumstances often makes all the difference.

Good places to meet friends and mentors with SCIs are at various adaptive sports and recreation programs in your area. Local Centers for Independant Living (CIL) often have this information, or simply do an online search for an adaptive activity you are interested and your location.

There are also plenty of online options and chat rooms share SCI thoughts, stories, ask questions and get mentoring advice and feedback from other folks with SCI. (See Resources)

A word of caution—just like anything else online, do not provide personal information for safety reasons.

 

Important Lessons Learned—Things That Didn’t Work

1. Get a second opinion for important medical issues

When it comes to important medical issues, it is very important to get a second and even third opinion. This is another area where networks of friends with SCIs can offer advice.

In 1989, I hurt my lower back while mono-skiing. A few days later it still hurt and I went to the ER. An X-ray confirmed that I had severely fractured my sacrum. I was advised to take it easy and the sacrum would heal on its own. Over the next few weeks my back got worse, I went back to the hospital to ask if I should be put in traction, I was advised it wouldn’t be necessary. I asked about getting a second opinion and was advised that wouldn’t be necessary that the doctor on my case was “the best in the business.”

Having a wide circle of friends with SCIs—like I do now—or the ability to bounce the question off an online group like CareCure Community or another chat room would have led me to seek a second opinion. Instead, I listened to the first doctor and didn’t pursue any further treatment.

It turns out I should have gotten a second opinion and should have been in traction—by not getting a second opinion, my spine fused in a crooked position. It’s something that could have been avoided by a second, or third medical opinion.

 

2. It’s important to ask a physical medicine and rehab (PM&R) physician to weigh on medical advice

In 2000, I fractured my right hip—the result of rolling over in bed with my feet caught in the corner of the covers, combined with osteoporosis—from 15 years using a wheelchair (see resources below)

I went to the ER and had surgery—four screws to secure my femur to the ball (trochanter into the ball). The surgery went perfect and I was released the next day. I asked the surgeon if I had any restrictions while healing. He said “Nope, it should be solid.” Unfortunately, he didn’t have any PM&R experience; he wasn’t thinking that with SCI the muscles surrounding my hip wouldn’t pull the hip together like they would in a non-disabled person.

Within a month, the screws pulled out and the hip came apart. My lesson—I should have asked a PM&R doctor to weigh in on the healing process. If I had, I wouldn’t have done transfers that pulled on the hip during the healing process and it would likely have healed just fine.

When the hip pulled apart, the surgeon said I could get an artificial hip. Not knowing anything about artificial hips I figured it would be a good option and scheduled surgery to remove the screws and put in an artificial hip the next week.

Luckily, I was learning my lesson about getting a second opinion. Two days before surgery I consulted with a PM&R doctor. He immediately referred me to surgeon versed in PM&R. The surgeon said that in my case an artificial hip would severely limit the mobility of my leg and cause a high probability of severe complications including hip dislocations and high potential for fracture in the middle of the femur. The artificial hip could have cost me the leg.

Instead I had a girdlestone procedure—the ball of the hip was removed. The procedure went well, and 12-years-later my leg is fine. Learning to get a 2nd opinion from a physician versed in PM&R saved my leg!

 

Resources:

Chatrooms/Forums/Message Boards

• CareCure Community: http://sci.rutgers.edu/forum/index.php
• New Mobility Message Board: www.newmobility.com/bb/ubbthreads.php
• Osteoporosis Update: Avoiding the Breaks: www.newmobility.com/articleView.cfm?id=11538&srch=Osteoporosis
• QUAD-LIST Discussion Group: www.makoa.org/quadlist.htm

 

___________________________________________

Bob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at
online.relations@therohogroup.com.

The ROHO Group to Unveil New Wheelchair Back at the International Seating Symposium

The ROHO Group will unveil the new ROHO^® AGILITY™ Back System at the 2012 International Seating Symposium in Vancouver, Canada.

With the unveiling, The ROHO Group will offer International Seating Symposium attendees a firsthand look at the new ROHO AGILITY Back System. The unveiling will take place on Wednesday, March 7, 2012, at 10:40 a.m. at The ROHO Group Booths 65 and 66 in the exhibit hall located at the Westin Bayshore.

The unveiling will begin with an introduction by The ROHO Group’s President, Tom Borcherding, and followed with a presentation by The ROHO Group’s Sr. Director of Training and Education, Darren Hammond, MPT, CWS. Following the presentation, attendees and media will be able to have hands-on experience with the new product.

“The International Seating Symposium is rapidly becoming the premier global conference for professionals around the world with a focus on seating, positioning and mobility, making it the ideal event for the ROHO AGILITY Back System unveiling,” The ROHO Group’s Senior Vice President of Sales and Business Development Pat Chelf said.

Don’t worry if you can’t attend the International Seating Symposium. You can still sign up to receive the latest scoop on the product at agility.therohogroup.com.

The ROHO Group will also be posting updates from the unveiling on their Facebook Page at https://www.facebook.com/therohogroup and on their Twitter account at @TheROHOGroup.

The International Seating Symposium features the latest developments in the areas of seating, positioning and mobility. Topic areas include product development, research, outcomes and service delivery. More information about ISS can be found online at www.interprofessional.ubc.ca/iss.

 

For more information, contact:
Danielle Boenisch
eMarketing & Support Surface Product Coordinator
The ROHO Group
800-851-3449 ext. 2220
mediarelations@therohogroup.com
TheROHOGroup.com

The ROHO Group Names Becky Pelton As Vice President of Human Resources

The ROHO Group, manufacturer of support surface products for medical and consumer applications, names Becky Pelton as Vice President of Human Resources.

In her new role, Pelton will be in charge of managing staffing, culture and diversity, benefits and compensation and employee relations.

“I am extremely excited that Becky is joining our team as the new Vice President of Human Resources,” said Jeff Baker, CFO of The ROHO Group. “With her human resources leadership experience, Becky will bring her own unique skills and perspective to The ROHO Group’s HR function and to our organization as a whole.”

Pelton has more than 16 years of HR experience, including employee relations, benefits and compensation, staffing, performance management and training and organizational development. Pelton previously served as Director of Human Resources at Home Depot Direct and Vice President of Human Resources at Knight’s Ltd., both in St. Louis, MO.

Specializing in shape fitting technology^®, The ROHO Group manufactures and distributes a variety of standard and custom-size wheelchair cushions and accessories, back systems, powered and non-powered support surfaces and the full line of XSENSOR^® Pressure Mapping Systems. For more information, visit The ROHO Group’s website at www.therohogroup.com or contact customer service at (800) 851-3449.

###

Contact:
Danielle Boenisch
eMarketing & Support Surface Product Coordinator
The ROHO Group
800-851-3449 ext. 2220
mediarelations@therohogroup.com
TheROHOGroup.com
Facebook: https://www.facebook.com/therohogroup
Twitter: @TheROHOGroup
LinkedIn: http://www.linkedin.com/company/the-roho-group

Why there is such a big price difference in medical products that look so similar

Guest Blog Post by Bob Vogel

Evaluating a product by price alone can be confusing and misleading. Why do two cushions that “look” similar have significantly different prices? This is an important question, especially when it comes time to order your next cushion. In order for a DME (durable medical equipment) cushion to be sold as a medical device in the US it must comply with a specific set of rules and tests set forth by the FDA. These rules and tests are a good thing — I want to be sure that the cushion under my butt has been tested and proven to protect my skin.

However, there is a big difference between doing the minimum required to meet regulations and doing the maximum to ensure that wheelchair users have the best skin protection possible.

The first expense is research and design costs associated with making a cushion before it can be submitted to the FDA for approval to be sold. Companies like ROHO (and other market leaders) spend a tremendous amount of money in this area, while other companies that might make similar looking products spend very little in this area. ROHO continually invests money in research and design in an ongoing effort to make the best product for consumers. Research costs include a prototype tool for every research cushion — something that is very expensive with no guarantee that it will ever reach the consumer — laboratory studies, clinical studies, and support papers for the research. Examples of published ROHO papers and research can be viewed here: http://www.therohogroup.com/roho institute

The FDA has a specific set of rules and tests it requires for DME complex rehab cushion to be sold as a DME product in the US. The manufacturer has to be registered with the FDA and pay associated fees on an annual basis and must meet FDA quality system regulation (QS) manufacturing requirements for designing, purchasing, manufacturing, labeling, storing and servicing medical devices (in this case, cushions). The manufacturer has to have traceability of the product (cushion) and report if there is any kind of recall or adverse event with the product.

The FDA inspects manufacturing facilities and if an inspection or an FDA audit finds there isn’t compliance with its rules, the FDA can shut down the plant.

ROHO takes quality control much further than the FDA model with its quality management systems’ being certified to two ISO standards — ISO 9001:2008 and ISO 13485:2003, which is a medical device quality standard. Manufacturing all ROHO cushions, except the PostureLITE™ by ROHO Cushion at its plant in Belleville, Illinois, ROHO is able to maintain the highest levels of quality control in every aspect of every cushion.

An example of ROHO quality control is the neoprene used to make its cushions. Instead of relying on an outsourced compound, ROHO compounds and mixes its own neoprene and every batch is tested to ensure each cushion maintains the highest standard. To further enhance quality control, each ROHO cushion has a unique serial number that ties it back to the specific date that it was made and processes under which it was manufactured in order to pinpoint any issue regarding quality if needed.

Each and every ROHO cushion goes though multiple layers of quality inspection to ensure each cushion performs to specification before it is shipped.

Another important thing to consider when ordering a new cushion is warranty return policy and customer service — a manufacturer expense that ROHO feels is of vital importance. If you have a problem with a ROHO cushion you call customer service and give them the serial number of the cushion and tell them the problem. Customer service will be able to immediately tell the manufacture date, exact model and size of cushion and warranty information. If it is under warranty, they will send you a new cushion right away, and have you send your old cushion back in a pre-paid shipping box. This enables ROHO to examine the cushion, document the problem and further enhance quality control by gaining knowledge to take steps to work on eliminating problems and improve cushions.

An example of this is, years ago ROHO identified an area of wear on the cushion where the cell met the base of the cushion. To address this, ROHO Engineering spent a great deal of money to redesign the cushion so the cushion cells had a more gradual taper. The redesign meant great expense for re-tooling for all cushions, but the end result was a longer wearing cushion for the customer.

When it comes to qualifying for reimbursement for a DME cushion, most insurance companies follow Medicare guidelines — the product has to meet a Cal-117 Fire safety test, the cushion must have minimum of an 18-month warranty and show that the cushion will pass a Simulated Immersion Laboratory test — a test that measures a cushion’s ability to allow cylindrical devices (meant to simulate a human pelvis) to sink 40 mm into a cushion with a 31-pound load without bottoming out — about 18 months of use. 40 mm is the goal because it simulates immersion of the entire pelvis.

Unfortunately, the Simulated Immersion Laboratory test does not measure pressure, meaning you could end up with a cushion that passes all of the tests, yet puts tremendous pressure on bony areas of the pelvis and puts the user at risk of a pressure ulcer.

Which brings us to another example how ROHO goes the extra mile for consumer safety. ROHO, in conjunction with Sunrise Medical, has spent considerable time and a huge sum of money to develop a superior Simulated Immersion Laboratory test device — one that is in the shape of a pelvis, designed to address the most difficult seating/pressure challenge. The device has eighteen sophisticated pressure sensors imbedded in the indenter at typical pelvic pressure points so you can see the actual pressure readouts on the pelvis. The device is designed to measure all 18 points when immersed at 40 mm in the cushion — the goal is equal pressure distribution on all areas without any high pressure points. An analogy is a scuba diver under water — they have a ton of force applied to them but it is equally distributed so they don’t develop problems.

To make seating safer for all consumers, ROHO and Sunrise have done all of the testing and research on their Simulated Immersion Laboratory test device, and are offering the research and plans for the device to testing agencies for free to try and raise the bar and make seating better and safer for all consumers.

When looking at your next cushion, do your research:
• Where is the cushion manufactured?
• How long is the warranty? (ROHO cushions’ warranties are 24-months and 36-months depending on model).
• What is the warranty policy?
• Is the manufacturer continually improving the product?
• Does the manufacturer include research papers about its product on its website?

The bottom line of all this is, there are a lot of cushions that “look” like a ROHO but cost less — performance, seating and positioning and how a cushion protects your skin, how a cushion protects your bottom, should be the bottom line on cushion choice. And as always, it is vital to ask and make sure the exact make, model and size of cushion are included on all therapists’ and physicians’ prescriptions as in “ROHO^® Quadtro Select^® High Profile^® Cushion, 16″ X 16″.

 

___________________________________________

Bob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at online.relations@therohogroup.com.

7 Adaptive Parenting Ideas and Tips

Guest blog post by Bob Vogel

A good friend excitedly shared the news that she is expecting her first child. She is a T4 complete paraplegic and asked if I had any adaptive ideas that will make parenting easier.

Although my daughter Sarah is going on 11-years old, it seems like just yesterday that I was asking the same question, and coming up with solutions of my own — here are some of my favorites.

1. Develop a shift schedule for sleeping

The first adaptive parenting hurdle Joanna and I ran into had nothing to do with disability — it was figuring how to adapt and function on little to no sleep. As any parent can tell you, the feeding and changing needs of a new baby quickly lead to sleep deprivation that rivals commercial crab fisherman. Our method to battle this was to parent around a “shift schedule” — “on watch” spending nights on the futon next to the bassinet for 72-hours, while the other parent got to sleep in the bedroom with the door closed.

 

2. Find a table for changing diapers that’s wheelchair accessible

To make it easier for me to change Sarah we put a changing pad on the dining room table — dinner parties would be a distant dream for a while — because the table was the perfect height and enabled me to wheel right up to the table to change her. A word of caution on changing — there is a Velcro strap in the center of a changing pad, it is there to secure your infant’s mid section so they don’t scoot off the table. Get in the habit of using this early — many parents can attest there is no warning between, “The baby never scoots” and, “I turned my head and the baby scooted off the table and onto the floor!”

 

3.  A high chair with wheels

Kristi Hruzewicz has a 6-month-old boy named Alex. Hruzewicz — a T4 para — adds some adaptive tips. She recommends the Chicco high chair (see resources) because it has wheels and you can roll the baby around the house with you when they are awake or sleeping. It also has a reclined position so you can use it on infants that don’t have the ability to hold their head up yet.

 

4. Bassinet/crib that has sides that lower or open

For sleeping, Hruzewicz uses a Side Crib (see resources) bassinet that has a side that lowers so she doesn’t have to lift Alex up and over the side of the bassinet. She says when Alex outgrows the bassinet she has a standard size crib that has sides that open like a barn-door so she can easily wheel him in and out of the crib. This is great idea, as I recall it was really difficult trying to get Sarah up and over the rails of her crib from my wheelchair and even more difficult to get her out of the crib.

 

5.  Lifting an Infant or Toddler

To make it easier to pick up your child Hruzewicz suggests a Baby B’Air Flight Vest, a small cotton vest designed to secure an infant to the seatbelt on an airplane (see resources). Hruzewicz says being able to grab the vest makes it much easier to pick her child up from a chair and makes her feel like a momma cat.

 

6. Use a baby sling or carrier for transporting an infant

When it comes to carrying an infant or toddler all day — we wheelchair users have a huge advantage — a permanent lap. When Sarah was an infant I carried her in a baby sling (see resources). A word of caution, the U.S. Consumer Product Safety Commission issued an advisory safety warning on the proper way to use an infant sling (see resources).

When Sarah was strong enough to hold her head up, I switched from the baby sling to a BabyBjorn baby carrier (see resources). At the time it was the only chest pack baby carrier that enabled carrying a toddler with their legs facing forward, so they can sit on your lap in your wheelchair. Although it’s kind of pricy, you can find them used on craigslist or eBay and when your child outgrows it they sell quickly online.

As Sarah outgrew the need for the chest pack I made a custom seat strap to keep her on my lap, it consisted of a soft stretchy material about 6″ wide and long enough to wrap around my back and Sarah’s waist. It also had Velcro on one side that made it easy to instantly put it on or take it off.

To this day I treasure memories and the time I was able to spend with Sarah on my lap, doing anything from working at the computer and puttering around the house, to going on walks.

I do have a couple important words of caution about wheeling with an infant or toddler in your lap. First, be aware that the extra weight of your child in your lap puts extra load on your wheelchair’s front casters that will make them more susceptible to catch on rocks or cracks. The added weight on your lap also puts added pressure on your butt — it is important to be extra vigilant with mirror skin checks.

 

7. Develop a method for putting the infant into a car seat

Last, but not least is figuring out how to get an infant into a car seat. I found the best way to do this was to strap Sarah in the car seat when it is free from the base — then with her securely fastened in, move it across the back seat of the car to the car seat base and latch it into the base. It is a maneuver that works, but takes quite a bit of time — and I learned to plan extra time into my trips accordingly.

When Sarah was finally big enough that she no longer needed a car seat — at age 7 — simply getting my chair in and out of the car seems like a breeze.

Resources:

• Baby B’Air Flight Vest:http://www.babybair.com/product.html
• Baby Bjorn Baby Carrier:http://www.babybjorn.com/products/baby-carriers/baby-carrier-synergy/synergy/
• Baby Sling Advisory:http://www.cpsc.gov/cpscpub/prerel/prhtml10/10165.html
• Example of Baby Sling:http://www.amazon.com/Karma-Organic-Cotton-Twill-Sling/dp/B001TEIS0A
• Chicco High Chair:www.chiccousa.com/gear/highchairs-hookons/polly-highchairs/polly-highchair-adventure.aspx
• Side Crib:http://www.diapers.com/p/arms-reach-concepts-inc-mini-co-sleeper-natural-74235?site=CI&utm_source=cse&utm_medium=cpc_D&utm_campaign=Google&utm_content=pla&ci_sku=AR-036&ci_gpa=pla&ci_kw=%7Bkeyword%7D

*The ROHO Group is not endorsing these products and we have not tested them.

___________________________________________

Bob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at online.relations@therohogroup.com.