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

 

___________________________________________

Bob VogelBob 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.

  • Winsor Pilates

Comments

5 Responses to “5 lessons learned from 27 years of having an SCI”
  1. Richard Costello says:

    I broke my neck, C3, C4, in 1974, and have been on a ROHO ever since. Today, 2-29-12, I am driving a PERMOBIL C500 VS, powered wheelchair that stands me up vertical on command, and having a very bad time in attempting to sit on a ROHO. I have tried an 18×18, regular ROHO, an 18×20, single valve, ROHO HYBRID ELITE, a ROHO POSURELITE, and I am now sitting on a ROHO Quatro that I bought 6 years ago.

    I need a cushion that will center me in the chair, and hold air. – Requested help from ROHO, and was advised to see my appropriate, health professional (instead of Mickey Mouse – and to not bother them). – My health professionals are in the same boat I’m in: They are seeking to buy a wheelchair cushion to suit my needs. When we find one I will advise ROHO. Thanks anyway.

  2. Marty Ball says:

    Bob,
    Excellent tips for others with SCI. You are always on top of things to help others, and we all appreciate someone there, who is like us to explain things. Too many others around who speak from only theory, not experience.
    Marty

  3. Hi Bob- GREAT article! and some valuable lessons for sure! I’m at 9.5 yrs out- T-12 incomplete from a hit and run motorcycle accident Nov. 10,2002. I’m the peer mentor coordinator and community resource specialist with the Arizona SCI Association. If it’s ok, I’m going to share this with our peer mentors and have them share it with their mentees and anyone else they come in contact. I think these are all lessons we can all learn over the years as well as refresh ourselves with- especially skin checks! I know I have become lax over the years as well but I have a great caregiver/husband who does it for me..he found one on my right butt cheek at the top of the leg- stayed off for 5 days which helped ALOT! Had he not found it, I would have had more problems I bet…it’s SO important to stay off those sores, for sure! They can turn in a just a matter of hrs! Thank you for sharing all your great tips!
    Karen

  4. Hello Bob I am Disabled pastor Richard Armstrong T4 spinal cord injury incompleat 29 yeaars ago while working as a private security officer did not have my vest on or my back up gun on I was shot with a 357 colt python I had a 357 ruger on a hi rise hoster guarding a massage parlor for a friend he is in prison for 220 hundard years God saved my lfe that night gave me second chance at life 2 months 10 days in Wishard Hospt 5 months of rehab a old heavy E&J wheelchair did not know about Roho cushions had a jay cushion did not fit my body today I am on my 3rd Roho cushion BEST cushion there is made this cushion was a christmas gift I got Ordination March 2001 in a friends church also I was a chaplian in Rehab Hospt of Ind vollunteer for 11 years Wishard hospt trained in trouma for 8 years my email pastorrichard1683@sbcglobal.net also I would like write new letter for your new letter

  5. Richard,
    The cushions from ROHO that will help with centering a person in the middle of the chair would be the Hybrid Elite Cushion that is a combination of an air cell insert with a contoured foam base. The other two would be the ROHO Enhancer Cushion and the ROHO CONTOUR SELECT Cushion. These cushions are all air with the air cells contoured to help with centering the person, as well as help with leg splaying. The ROHO Nexus Spirit Cushion might also be an option for you. I recommend taking those three possibilities to your clinician and having them assess what is best for you.

    One other thing that I would recommend to speak with your clinician about, is finding a wheelchair back that is designed to help keep your body in the appropriate place, either through a contoured shape or through laterals.

    Hopefully, this helps a little, but feel free to email me at online.relations@therohogroup.com.

    Danielle Boenisch
    The ROHO Group

Speak Your Mind

Tell us what you're thinking...
and oh, if you want a pic to show with your comment, go get a gravatar!

*