My name is Bill, and I have worked for 180 Medical for over 10 years. About 26 years ago, I was involved in a motocross accident that rendered me quadriplegic. You can learn more about my story here. Over the years since then, I've been able to use my experiences to help and counsel others who are also dealing with life after a spinal cord injury. I am happiest when I am helping others, and these days at 180 Medical, I spend a lot of time just talking to our customers on the phone who are new to self-catheterizing.
As you may already know, September is Spinal Cord Injury Awareness Month, so, as a C5-6 quadriplegic, I'd like to share a few helpful tips for anyone living with an SCI, particularly those new to their injury and recently released from their rehabilitation center.
1. Plan a daily routine.
While in rehabilitation therapy, my fellow patients and I were woken up every day at 6:00 a.m. and kept to a pretty orderly schedule from morning to night. If your rehab was anything like mine, they probably had you on a daily schedule like this. I recommend trying to stick to something similar, or perhaps you can come up with a daily routine of your own that will work better for your individual needs.
Having a routine re-establishes a sense of dependable structure after such an injury that does alter your life in many ways. When we create positive habits, whether we live with a SCI or not, this practice has a way of enhancing your life. Especially in early recovery after you're released, having too much extra time without a schedule or tasks to do can lead to depression. Find something you love to do or participate in, create a routine, and eventually, it will become a habit.
Important note: Be sure to continue your self-cathing and bowel program as your doctor or healthcare professional has prescribed.
2. Exercise and eat well.
Exercise will help you maintain or even lose weight, if necessary. I know it's not uncommon for those with spinal cord injuries to gain weight once they are in a wheelchair, mainly due to inactivity. But it's important to try your best to stay in shape, and not just because it's always a great idea to maintain optimal health, no matter your level of injury. Exercise may also help you regain your independence, and you might find that it becomes a lot easier to transfer from your wheelchair to your car, a toilet, or to your bed, and continue your other daily activities.
While in rehabilitation therapy, you may have been taught a daily exercise routine with weights, resistance bands, and wheelchair pushes, as I was. When you return home after your release, you might not have access to all the necessary equipment at home. It might be worth checking with your rehabilitation center to see if they offer continuing outpatient-based visits, so you can continue to use their equipment or get assistance with workouts. You might also check with your local gym or fitness center, as they might also have adaptive equipment.
For exercising at home, you may find, as I have, that resistance bands are a great help, because they're not only very effective but inexpensive as well. You can also purchase hand weights or even wrist band weights if you have limited hand dexterity like me.
Continuing to work on pushing your own wheelchair (if you are physically able), is also of great importance. I recall when I first returned home, I would spend an hour during the day pushing my chair as long and hard as I could. At first, I could barely push up a ramp, but with continued effort, I was able to push on my own for a few miles, which was a huge success! I also made sure to keep going to my local rehab center at least three times a week to lift weights and resistance train.
Maintaining a healthy diet is also important to your health. Your rehabilitation therapist or healthcare professional may be able to counsel you on the best foods for your health or refer you to a certified nutritionist to formulate a specialized diet for you.
3. Consider going back to school or work.
If you already had a job before your injury and are planning on returning to work after rehab, your employer should assist you in making any necessary accommodations, so you can continue to work for them. If you are interested in trying to go back to work or plan on working in the future, get in contact with your local Department of Rehabilitation Services, who can assist you in helping find a job, as well as designing a plan and providing you with the necessary accommodations you might require in order to work. They can also assist you in making a plan for any continuing education. Fortunately, they also often offer resources that may help pay for all or part of your education costs.
There are also scholarships available to those with disabilities, such as 180 Medical's annually offered College Scholarship Program. You can learn more about that at our scholarship page.
Most schools and universities have a department specifically to assist those of us with disabilities. They help make sure that your classes are accessible for you, and if you have any other special needs, they can work to make the necessary accommodations for you. Examples of this could range from getting someone to assist you in taking notes to getting a classroom location changed, if the original classroom is not physically accessible.
I knew a young man who had done construction work all of his life, and, after breaking his back, he realized that he would no longer be able to do that type of work anymore. Even though he had limited education originally, he decided to go back to school went back to school, ended up becoming an attorney, and has been very successful.
No matter what you were doing before you had your spinal cord injury, the sky is the limit on what you can do in the future. While it took me a while before I was able to get my first job, I was so grateful to finally have a daily purpose with going to work, because I was starting to get depressed by not doing anything. No matter what your level of injury is, see what job options might be available to you if that is of interest.
4. Join a local support group.
I can't say enough good things about support groups. These meetings can be so beneficial. Not only does it allow you to share ideas with people who are going or have gone through the same things, but some of my best friends today are people I met through my local support group.
Most states, cities, or larger towns have spinal cord injury support group meetings or an association of some sort. For example, i'm originally from a small town of approximately 15,000 people, and even there, we had a group that met every month. There were not that many of us, but it was nice to meet people in my area with similar disabilities and understood some of the issues I was also encountering. If you live in a rural area, you might have to travel to get to the nearest meeting. The Spinal Cord Association in Oklahoma City offers their meetings by Skype, so that people who are unable to make it to the meeting can still participate. If there is not already a support group in your area yet, you might consider starting one.
5. Use the Internet.
There is a wealth of information available to you on the internet, from educational information, community activities, local support groups, helpful webinars, adaptive equipment and clothing, charitable associations, and more. If you have found this article, then you already know what I mean. I have written several blogs for 180 Medical discussing all types of issues which you may also find helpful, all the way from achieving independence as a quadriplegic, traveling, adaptive clothing for people in wheelchairs, and even my experience with adaptive sports like kayaking.
Some great resources to start:
Christopher & Dana Reeve Foundation
National Spinal Cord Injury Association (United Spinal)
Bryon Riesch Paralysis Foundation
DREAM (Disability Rights, Education, Activism, and Mentoring)
6. Start driving again.
For me, personally, getting behind the wheel again was the biggest step in feeling as if I had gained my independence back. While I know that some people have too great a level of injury to be able to drive themselves, many others are still able to do so.
Most paraplegics are able to transfer into a car or truck, break their wheelchair down, and load it into their vehicle, so the only modifications they may require are hand controls and possibly a steering wheel knob. These modifications are usually under a few thousand dollars. As a quadriplegic, I require a van with a lift, automatic door openers, a 6-way seat base, hand controls, and a tri-pin on my steering wheel. These adaptive modifications to one's vehicle can end up being very costly, however. There are more types of modifications available.
If your ultimate goal is to get back to work, then the Department of Rehabilitation Services might help pay for the disability modifications, but you are responsible for paying for the vehicle. If you currently have a vehicle, check to see if it can be modified. If you are purchasing a new vehicle to have modified, most manufacturers offer up to $1000 to assist in paying for your adaptive equipment.
7. Participate in Adaptive Sports and Recreation.
Whether you want to professionally compete in sports or just enjoy doing something for fun, there are so many options available to you, both indoors and outdoors. I personally enjoy swimming, kayaking, riding my hand-crank bike, water-skiing, and I even went snow-skiing once but haven’t had the opportunity to go back yet. Check your local resources and give the internet a quick search to see what is available.
A few helpful organizations and informational websites:
Life Rolls On (Surf and Skating events)
National Wheelchair Basketball Association
VA Adaptive Sports (US Department of Veterans Affairs)
Disabled Sports USA (this includes local chapters and youth programs as well)
Blaze Sports America
Christopher & Dana Reeve Foundation information on Team Sports
Paralyzed Veterans of America Sports
Oklahoma Adaptive Sports Association (OKASA)
Adaptive Sports USA
8. Never give up.
Above all, don't lose hope! Life is not over for you, even if it has been drastically changed by your injury. There is help and assistance available, and many opportunities exist out there.
As someone who has been where you are right now as a newly injured person living with a spinal cord injury, I wish you all the best on your new journey and hope you will be able to reach out for any support you may need at this crucial time in your life.
Did you know that September is Spinal Cord Injury Awareness Month? Learn more:
Bill has worked for 180 Medical for over 10 years. He loves getting to talk to our customers, sharing his first-hand experiences as a quadriplegic, and helping those with in-depth questions about self-catheterization. He enjoys spending time outdoors, as well as watching and attending motocross events. Learn more about Bill's story.