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!
- 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