Christopher Reeve's Recovery Program

Posted by Nurse Linda in Daily Dose on January 27, 2021 # Health, Reeve Family

I was fortunate to be one of the organizers of Christopher Reeve's recovery program. What a wonderful experience. Many people have been interested in what he did. This was a turning point in the care of individuals with spinal cord injury. Many of you might be thinking, but I can't do the program or get the equipment, but you can do much of the treatments in your own home. Determination is the key to success.

As you know, Christopher Reeve was injured on May 27, 1995, from a fall in a horse-riding incident. His level of injury was at the C2 level or at the second cervical level. That is a high-level injury that requires mechanical ventilation for breathing. Paralysis and loss of sensation are from the neck down the body. He began the activity-based recovery program in November 1999, more than four years after injury. An activity program is not just for the newly injured. It is for everyone, newly injured, long term injury, young and not so young.

The goal of an SCI recovery program is to achieve neurological activation both above and below the level of injury. Your body above the level of injury might not have a high level of activity or, more likely, has accommodated your needs and has more activity. Knowing how and where to focus your energy is key to the health of your body.

Below the level of injury, your body has been neurologically silent. Activity will provide a varying amount of input. This will be a big change to your body. It is easy to 'overdo' your activity so be sure to start slowly. Very slowly so as not to overexert yourself without being mentally aware or overusing your body too quickly. Remember, your body will respond to soreness, pain, and fatigue even if you do not recognize it. But it will also respond to movement as the body craves it. Providing activity to your body makes you feel good.

Prior to beginning any exercise program, check with your healthcare professional to make sure your body is ready. After spinal cord injury, bones can become weak, which can lead to breaking with tension to them. Joints can be contracted. Blood clots can be hidden in the body, legs, and arms. Movement can dislodge them. You may have periods of orthostatic hypotension (low blood pressure) as your body begins to accommodate the activity. Episodes of autonomic dysreflexia can be triggered. You will need to know how to treat yourself if these issues appear and how to avoid them. Also, be aware that with movement, you can develop new areas of skin sensitivity that were not pressure points before. This can be due to friction from movement or new equipment.

There were four components to the program developed for Christopher Reeve.

1. Standing- is accomplished using a standing frame. This might not contain movement, but it is still classified as an activity because gravity will put the weight through your body. A standing frame is a specially designed seat with an attached pump. You transfer into the chair. Supports are placed across your knees, hips and if needed, across your chest. The pump is used to move the chair, which will raise your body to a standing position. Typically, individuals build up standing stamina over time, eventually to one hour a day.

The benefits of standing are improved breathing since the lungs are helped to inflate by the effects of gravity and cardiovascular function as your heart works to pump blood through the standing body. The pressure is put through your bones to support the weight of your body. The biggest benefit to standing is psychological as this might be the first time in a long time that you see yourself in the upright position.

Many payors support the use of a standing frame. Some standing frames have reciprocal arm exercises that move your legs as you move your arms. This adds movement to your therapy. You may have to make a special request for the standing frame device through a letter of medical necessity by your healthcare professional. If you have a standing wheelchair, the same standing activity can be accomplished.

2. Partial weight supported walking-in this therapy; your body is supported upright in a harness. Robotic arms are attached to both legs, which moves them in a sequence of a walking pattern over a treadmill or around a track in a gym. This equipment is very costly, so this therapy is performed in a rehabilitation setting.

You can mimic this therapy by moving or having someone move your legs in a walking pattern or just moving your joints through passive movement while you lay in bed. Typically used is a range of motion exercises. The key is to imitate patterned movement in the legs. You can also have someone provide patterned movement to your arms if that is of concern to you. Even if the movement to your extremities is not in the weight supported device, you do get the benefit of patterned movement in a modified manner.

The benefits of this therapy are the movement of your muscles. All muscles interact together, so moving the legs keeps the muscle active and supple. Blood flow is increased. The incidence of blood clots is decreased. Spasms or tone is decreased. Most individuals who perform this type of therapy note better urine output and improved bowel programs through consistency of stool and less time to evacuate.

Individuals typically have two weeks of mobility training in their payor policy. Speak with your healthcare professional about using that time to try partial weight supported walking. You can also get instructions for how to adapt partial weight supported walking to your extremities when you are at home.

3. Functional electrical stimulation-electrode pads are placed strategically over muscle groups on the skin. Electrical stimulation is applied to provide the current to the nerves that are not being supplied by the body. The limb will move but not under your voluntary control as the stimulator performs this activity. This can be done to the legs, arms, and abdomen, among other areas of the body. You will need to work up to one-hour tolerance. Again, begin slowly.

The benefits of this therapy are the supply of electrical stimulation to the muscles, which causes the nerves to react. Other benefits include cardiac and respiratory gains, improved blood flow, bladder, and bowel function improvement, decreased blood clots, decreased spasms and less skin breakdown due to muscle building.

Functional electrical stimulation has a response for individuals with upper motor neuron injury. It is less effective in those with lower motor neuron injury, but individuals with this type of injury benefit from stimulation mobility with braces and passive exercise.

Electrical stimulation to a few muscle groups is available in just about all therapy facilities now. Christopher Reeve used functional electrical stimulation to power a specialty bike. This is a good therapy, but the bike feature is not available everywhere. Stimulation is. You can use your two weeks of mobility training to include electrical stimulation. A letter of medical necessity probably will be needed for the possibility of a home stimulation device or stimulation bike, which is more challenging to obtain.Christopher Reeve aquatic therapy

4. Aquatic therapy is a therapy provided in a pool. Most individuals with spinal cord injury will require a heated pool to avoid complications. A warm pool environment reduces the susceptibility of spasms and other common SCI complications. It is easier to move your body in warm water as it relaxes muscles. Coldwater stiffens muscles, which is not preferred.

The benefit of water is that it provides therapeutic treatment but with the forces of gravity reduced due to the buoyancy of water. In pool therapy, you may notice somebody's movement that you cannot perform on land due to gravity. Once you practice the movement in the water, you will be able to learn to translate that movement on land.

Schedule your pool therapy around your bowel program to avoid an incident in the pool, which then must be closed for cleaning. An adult continence garment or pediatric swim diaper is worn under your swimming attire. Individuals who have seizures should not participate in this therapy. You will need special permission if you use mechanical ventilation, but some facilities will not accept the responsibility even if you obtain this. Open wounds, ostomies, or suprapubic catheters must be covered with watertight dressings to keep pool water from entering your body.

Pool therapy is being offered in more and more locations. There may be a certified pool therapist in your area. You may have to travel some distance as locations are not plentiful. Look outside of your SCI diagnosis for treatment. Many individuals with MS or CP receive aquatic therapy. These are both spinal cord injury diagnoses from disease, not trauma, but the therapy can be translated to your needs.

Payors may or may not pay for aquatic therapy. You can attempt to get payor funding with a letter of medical necessity from your healthcare professional. Larger rehabilitation sites have pools so you can put the request in with your two weeks of mobility training. Fortunately, aquatic therapy is somewhat affordable so you might be able to work it into your budget.

Previously published reporting of Christopher Reeve's recovery over more than two years was recorded using the ASIA scale of 0 to 100. ASIA motor score increased from 0 to 19, ASIA light touch score from 5 to 77, ASIA pinprick score from 4 to 60. Sensation improved more quickly than a motor. The results of his improvement were that he could move every joint of his body under his own power. He could walk in the pool but needed support to hold up his body. Balance is always a separate challenge. The buoyancy of the water reduced the effects of gravity. He had sensation, which allowed him to direct someone if he needed a positioning adjustment. For him, his most positive accomplishment was that he could feel hugs from his family.

These reports and scores were life changing. Nothing like this had been accomplished previously. Today, activity programs are much more refined. They target the needs of the individual, not just let's try it all. You will want to work with your healthcare professionals to see which therapies are best suited to your individual needs. This program was a full-time project. Individuals today want to do more than just therapy all day long. Programs today take that into consideration.

This was the plan for Christopher Reeve's recovery. You probably will not require all these therapies. There are more treatments and therapies available today that are more efficient. Remember, he was the first person in this program, so he tried everything. Now, therapies are much more targeted to the particular needs of the individual. What you need is patterned movement and determination to keep with it. Nurse Linda

Pediatric Consideration: All the above therapies are also available to children, plus more. Unfortunately, the process to obtain therapies is still a challenge, but improvements in policies are helping.

Children have the advantage of the developing nervous system. This makes it even more imperative to work with your healthcare professional to obtain all the treatment possible. Know that you most likely will be turned down at your first request but keep asking. The determined adult does meet with success. Nurse Linda

Linda Schultz, Ph.D., CRRN, a leader and provider of rehabilitation nursing for over 30 years, and a friend of the Christopher & Dana Reeve Foundation for close to two decades. Within our online community, she writes about and answers your SCI-related healthcare questions in our Heath & Wellness discussion.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.