Spinal Cord Injury Rehabilitation: Centers, Expectations, Tips, and Treatments
Spinal cord rehabilitation centers play an important role in spinal cord injury (SCI), providing assistance to those who are working on their recovery. But just as no two people will experience their spinal cord injury the same way, treatment and rehabilitation also needs to be personalized and specialized in regards to mental and physical injury.
Specialized centers of care have radically changed the treatment SCI survivors receive. This includes:
- Decreasing the amount of time spent in the hospital
- Providing access to a wider variety of specialized professionals
- Being treated in cutting-edge modern facilities
- Having greater access to assistive technologies
In this post, we’ll look at different types of spinal cord injury rehab facilities, ten considerations when choosing a facility, what to expect during and after SCI rehab, and more.
Different Types of SCI Rehab Facilities
Spinal cord injury rehabilitation centers can be part of the hospital at which you receive your initial treatment, or they can be independent facilities, depending on the level of care you need or want to receive. While choosing the right center can be difficult or even confusing, it is something that must be carefully considered to ensure that you receive the best and most appropriate level of care.
Some rehabilitation for spinal cord injury centers offer activity-based therapy (ABT), providing specialized recovery and rehabilitative care for SCI survivors. They focus on physical therapy for spinal cord injuries, or therapeutic activity, which improves strength and helps you to regain motor functions that may have been lost as a result of your injury. Even individuals who have been rendered quadriplegic have benefited from these active physical therapy regimens, both physically and psychologically.
10 Considerations When Choosing a SCI Rehab Center
Finding a center that can fully serve your type of injury is critical; ultimately, the best spinal cord injury rehab facility is one that suits your unique needs! As you or a loved one ask questions over the phone or tour a facility in person, it’s important to be selective and not necessarily just go with the first center or program you find. Once you have found the ideal center or team, you will establish with your doctors your spinal cord injury rehabilitation plan. Here are ten things to look for when choosing an SCI rehab center.
You’ll want to find out how much experience they have in treating your type of injury. For example, if you have a complete spinal cord injury of the cervical spine, are they experienced in treating your level of injury? This level of care would be radically different from that required for an incomplete lumbar spinal cord injury.
2. Variety of Programs/Treatments
You will want to know what types of programs or facilities are available, such as counseling, physical and occupational therapies, hydrotherapy, and electrical stimulation. Are there peer support groups available? And what types of activities, if any, are planned for patients on the evenings and weekends? As part of your recovery, you will need and want to be stimulated and not be stagnant outside of your therapy hours.
3. Ratio of Caregivers to Patients
Knowing how many patients are in a program, particularly with injuries similar to yours, can play a role in your decision about which facility to choose. Are you someone who feels like you may be lost in a crowd and would just be another number? Then you’ll want to know how many caregivers are available in comparison to the number of patients being treated at the facility.
4. Level of Care
Many SCI survivors are prone to additional health problems as a result of their spinal cord injuries, including high or low blood pressure, and cardiac and respiratory issues. You’ll want to know whether the facility is equipped to manage life-threatening medical emergencies. Additionally, if you are someone who needs more frequent respiratory care, you’ll need to know whether the center and its staff are prepared to provide 24/7 respiratory care.
Continuity of care is important to any traumatic injury recovery. Ask whether you will be working with or will be treated by the same team each day, or if patients are shuffled between different teams.
5. Patient Results
Rehabilitation facilities measure patient outcomes in terms of “functional improvement.” You can ask what a facility’s average functional improvement measure (FIM) score is for SCI patients. You also can inquire about how many or what percentage of patients return to their homes or communities versus long-term care facilities after treatment.
6. Financial Considerations
What are your financial considerations for receiving treatment? You may want to look into whether Veteran Assistance for SCI is available, or if there are grants available to help alleviate some of the financial burdens associated with receiving specialized care. To learn more, check out our blog on spinal cord injury grants.
If you’re looking at spinal cord injury long-term care facilities, you’ll probably want to choose a facility that is close to your loved ones so that they’re able to visit frequently. On the other hand, if you’re simply making weekly trips for physical therapy, distance may not matter. Of course, while location is important, you shouldn’t sacrifice quality because of it.
8. Interaction with Others
The spinal cord injury community is a strong one, and it’s important to try to find a rehabilitation center that supports interaction with other SCI survivors. By immersing yourself within a space that accepts and validates you as an important person, regardless of your walking ability or whether or not you use a wheelchair, gives you the self-confidence to carry on. Retaining an active social life and attending events designed to support individuals in the SCI community like PushNation Fest, can be key to achieving a balanced and normal lifestyle.
Some facilities serve all, while others specialize in specific age groups (pediatric, youth, seniors, etc). Choosing a facility in which you or your loved one will feel comfortable is important. Staff at age-specific facilities may be better attuned to needs based on life stage and interaction with other SCI survivors may be more meaningful when patients can relate more closely with one another generationally.
The Commission on Accreditation of Rehabilitation Facilities (CARF) is a resource for locating accredited rehabilitation facilities. To be awarded CARF accreditation, a facility must pass an in-depth review of its services. There is a difference between a general CARF accreditation and a spinal cord injury accreditation, so be sure to select “Spinal Cord Specialty Program” when searching for a provider. You can also call toll-free at 888-281-6531.
What To Expect During SCI Rehab
As you undergo your spinal cord injury rehabilitation treatment, remember that although you are an individual case, and your treatment will reflect that, you are not alone in your experiences. Make the most of the support your medical team will provide you with, and learn as much as you can about your injury in order to be fully educated with your situation and prognosis. The road is tough, but it can be paved!
Getting in Touch with Your Emotions
Perhaps the first thing you will experience during spinal cord injury rehabilitation is your own feelings and emotions. Unless someone has experienced a spinal cord injury, there is no way to know how overwhelming and emotional the whole situation is.
Losing the ability to walk and move like you once did can be a grieving process, and entering the rehabilitation stages is no different. Facing months of slow progress can feel like too much for people to handle, but with the right team and family support, your feelings will change.
Meeting Your Care Team
Depending on where you choose to receive your rehabilitation care, you will be supported and guided by a variety of professionals on your treatment team. They help you answer the questions, “How can I improve my spinal cord injury and my mental health?”
Often, this team is led by a physiatrist, alongside physical and occupational therapists, social workers, psychologists, nurses and nutritionists amongst others, all experienced in working on rehabilitation-focused cases.
You can expect to have many professionals supporting you throughout the rehabilitation period, not only assisting in your recovery, but teaching you about your injury and how to make adjustments in your everyday life. This may include:
- Recreation therapists who will show you the wide range of recreation options available in your community.
- Vocational therapists who will help assess your job skills and work with state vocational rehab agencies to obtain equipment, training and placement.
- Rehab psychologists who will assist with the often-dramatic life changes of SCI.
- Sex and family counselors who will help you better understand sexual function, family planning, etc.
Understanding Your Care Plan
Your care will be based entirely on your injury, situation, and body, and be designed around your capabilities and at your speed. Your physical and mental health will be addressed and will cover a myriad of topics, including diet and nutrition, relationship skills, and occupational therapy. This total package of care ensures that your mind recovers alongside your body.
Mobility will be the primary phase of rehabilitation, concentrating on regaining strength and movement back in the arms and legs. Physical therapy will follow, and allow an individual to increase their abilities to move and communicate. By strengthening muscles, it encourages individuals to use adaptive devices.
An occupational therapy program will assist in the redevelopment of fine motor skills, such as using cutlery, dialling on a phone, and other smaller and more precise movements. There will be other programs too, tailored to your needs, to address common challenges spinal cord injury patients face, such as bladder and bowel management and dealing with spasticity.
Although a lot of the rehabilitation work will concentrate on physical attributes and aspects, vocational tests will determine the dexterity and cognitive capabilities. These are likely to be used in further determination for future interests and employability.
Rehabilitation will also address your emotional and mental well-being, and assist you in ways that will benefit your life after your physical rehabilitation. Just because you experience a spinal cord injury, doesn’t mean you have to avoid all recreational and social activities. You may even find a new activity to take part in!
Ongoing Care Post-Rehab Facility
Depending on the severity of your SCI, following your stay in a spinal cord rehab facility you may want to find an occupational therapist (your rehab facility can offer recommendations). This person will be focused on integrating adaptive devices into daily life to support independence at home and at work. This could include wheelchairs, lifts, spinal braces and orthoses, controls for home (for lights, television, or phones), bathroom equipment, and driving tools.
The good news is, adaptive devices and always improving, and new technologies that make life easier and more enjoyable for spinal cord injury survivors are constantly evolving. One such technology that we think is very exciting is virtual reality for spinal cord injury.
Virtual Reality for Spinal Cord Injury
A revolution is happening in the spinal cord injury rehabilitation world and technology is playing a big part in this change. This change is virtual reality (VR). VR in medicine is being used to complement the rehab experience for SCI survivors.
Although VR has been around since the 1980s, it has recently seen a resurgence with the technology upgraded and marketed towards gamers, sports fans, movie fans, and more. But Mieron has a different idea: VR used for spinal cord injury. Founded by Josh Dubon and Jessica Maslin from Long Beach, California, they have created an entire system specifically geared towards people with spinal cord injuries and other mobility disabilities with the hope that the technology will one day be possible at home.
Their VR system requires a monthly subscription, but this ensures that your system is always operational, and you'll always have 24/7 support when you need it. There are dozens of applications that come with the system too, all in an effort to expand your mind by tapping into your brain's neurons, which is one of its main goals – to reawaken certain parts of the spinal cord by activating parts of the brain.
A member of the Spinal Cord team had a chance to use this technology and was quite impressed. “I went into the experience expecting it to be just okay, but rolled away feeling like I had actually done a thrilling experience,” he reported. “The goggles are very light, making them easy to wear for a quadriplegic like myself, but the best part is the different games that are on the system.”
“One of my favorite games is the tightrope, which is used for gait training,” continues our associate. “Although I was still in my wheelchair and not in a gait training system, this was still quite fun. With the misty mountains surrounding you as you walk across the tightrope, it really does feel like you are there. You can feel your mind easing up instantly... This is the power that this technology can have on people with spinal cord injuries.”
Another application on Mieron VR that many people will want is exercise/rehab therapy at home. It can be used to enhance core strength and upper body mobility, including trunk stability, which are things quadriplegics work on. Holding the controllers can also be their own exercise, with some rehab centers installing a weightless horizontal lateral bar or a swim noodle.
VR for medicine is also being used with Functional Electrical Stimulation (FES) bikes. This cycling experience adjusts the speed as the user sees fit, and can also be used with the upper body. “It’s 10 times more fun than any Nintendo Wii game, and the full 360-degree experience transports you right there,” our associate reported. “But, my all time favorite experience was their track/running experience, originally created for a paralyzed man who missed running. Mieron recorded an entire running experience on a track for him and it turned out awesome. Running around a huge red track, it’s meditation for the soul.”
To learn more, visit Mieron’s website here: info.mieronvr.com/mierongo
Figuring out life isn’t easy. Figuring out life after a spinal cord injury is even harder. It can differ greatly from what you are taught depending on where you go for rehabilitation after a spinal cord injury. Some places skim through the essentials, pushing you out right away, while others take their time and try to teach you everything they can think of. The only problem is that it’s impossible to cover every base. There's always one thing they'll forget to teach you, and it'll be up to you to learn it on your own.
With social media you can learn these things from others quite easily. If you have a new injury, here are a few important things to take note of in case your rehab experience forgets to teach you them.
Interacting with Family & Friends
Going home after a spinal cord injury is one of the hardest things to do. Everything seems brand new, and not in a good way like when you fall in love. It seems like you are a ghost in many ways, and this is especially so when you interact with family and friends.
Many will treat you differently, and unfortunately, many rehab facilities do not teach people how to mentally deal with this. It can be quite frustrating and even cause depression. Rehab facilities are beginning to put together better mental health programs to help with this huge transition, and it’s something to ask about when choosing one. Just remember, this is not an easy thing so if you are struggling with it as well, know that you are among friends.
Dressing Your Best with Adaptive Devices
Learning how to dress again in a wheelchair is incredibly difficult, and many rehab facilities will only teach things like where to buy adaptive clothing – not how to dress stylishly or even how to adapt clothes you already have.
Rehab facilities almost never teach you how you can still feel confident and sexy wearing adaptive gear, whether you are a man or woman, after a spinal cord injury. For example, many women have to learn how to wear high heels again from others on social media! An occupational therapist may be able to offer support in these areas.
Understanding and Coping with Long-term Effects
Many rehab facilities will teach you how to take care of your new body, how to return to work, and how to date again, but one thing they will rarely teach you is the long-term effects of your spinal cord injury and how it will affect your body.
Many people will experience sore shoulders after years of pushing themselves or have other joint issues. Osteoporosis, hemorrhoids, skin issues, and mental health can all come into play the older we get and live with a spinal cord injury. Be sure to ask your rehabilitation team about these issues if they remain unaddressed..
Hiring Good Caregivers
Hiring a caregiver, or a team of caregivers, is much more involved than just picking up the Yellow Pages like back in the day. You need a caregiver that is respectful and reliable, and skilled when it comes to working with SCI survivors. You may be able to find reputable caregivers through your insurance plans, or ask for referrals from your rehabilitation center. Read more in our blog How to Hire an Amazing Team of Caregivers.
Maintaining a Healthy Self-Esteem
Last but not least is maintaining a healthy self-esteem, which is something that many people struggle with after a spinal cord injury. It can ebb and flow depending on what’s going on in your life. Many people do find comfort in finding a therapist they can talk to. Oftentimes dressing well, good hygiene, and staying busy is enough to have a good self-esteem after spinal cord injury.
We Bring the SCI & TBI Community Closer Together
Have you or a loved one suffered a spinal cord injury or traumatic brain injury? Having a place to share your story and get advice from others who have been in your shoes can make a huge difference. Be part of a community that cares and will support you with stories and advice that can help you adapt to life with SCI or TBI by joining our community. And, if you’d like to speak with a spinal cord or traumatic brain injury legal specialist, you can always contact us online on call (877) 336-7192.
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Spinal Cord Team