Rehabilitative care is essential to prevent secondary complications of immobility and to improve functional skills. It is important to begin therapy early during the course of recovery to prevent inactivity-related problems (like skin breakdown and soft tissue contractures) that lead to loss of range of motion.
For patients who have had optic nerve inflammation, residual vision loss can be experienced. Patients can possibly note blurred vision, loss of color vision, difficulty with depth perception and potentially glares or halos around lights at night. Furthermore, patients who fully recover vision after optic neuritis may experience transient returns of blurred vision during times of stress, exertion or heat exposure.
During the early recovery period, family education is essential to develop a strategic plan for dealing with the challenges to independence following a return to home. Ongoing problems typically include ordering the appropriate equipment, dealing with re-entry into school, work, and community, and coping with the psychological effects of this condition on both those diagnosed with NMOSD and their families. Being saddened or demoralized by the diagnosis of NMOSD is appropriate. The inability to move past this grief in a reasonable period of time such that it interferes with relationships and functional living needs to be addressed and treated. Many fear that depression reflects on oneself as an inadequate ability to cope with their diagnosis and feel weak. But it is not a personal strength issue, and depression is very much a physiological manifestation and treatable. Both talking to a psychiatrist/psychologist and medication management can have benefit, and some studies indicate a synergistic effect of combining the two. Depression can rebound and can at times become more resistant to treatment.
Spasticity means stiffness or muscle spasms, and is often a very difficult problem to manage. Some stiffness in our muscles is necessary in order to control our movement, but when they become too tight, the result can range from slightly bothersome stiffness (particularly upon wakening) to uncontrollably painful spasms. When the latter occurs, small triggers such as changes in position, temperature, humidity, or presence of infections can cause this painful spasticity. The key goal is to remain flexible with exercise, a daily stretching routine, and a bracing program with splints, as needed. These splints are commonly used at the ankles, wrists or elbows. Medication options to relieve spasticity can be used in conjunction to these techniques, as well as therapeutic botulinum toxin injections and serial casting. The therapeutic goal is to improve function in performing specific activities of daily living (i.e., feeding, dressing, bathing, hygiene, mobility) through improving the available joint range of motion, teaching effective compensatory strategies, and relieving pain. Left untreated, severe spasticity can lead to shortening of the affected muscle or joint called contractures, further impacting mobility, rehabilitation, and independence.
An appropriate strengthening program for the weaker of the spastic muscle acting on a joint and an aerobic conditioning regimen are also recommended. Assessment and fitting for splints designed to maintain an optimal position for limbs that cannot be actively moved is an important part of the management at this stage. The effects on mobility as a result of NMOSD can vary widely, however, from paralysis to mild weakness. Either way, physical therapy is instrumental in returning function. Because physical therapists deal with many different types of injuries and diseases, it is ideal to work with one who has a particular interest in spinal cord rehabilitation when possible. Assistive devices may be necessary for weakness – it can be difficult and oftentimes humbling to take the necessary step of using an assistive device, but when faced with the alternative of broken hips, heads, and the downstream effects of lost wages or jobs, it is an important and sometimes indispensable step in maintaining independence. It is also always very important to remember to exercise, as tolerated, in order to maintain physical health and stamina.
Managing Bladder and Bowel Complications
Another major area of concern is effective management of bowel and bladder function. Constipation is the most common bowel elimination issue. A high fiber diet, adequate and timely fluid intake, medications to regulate bowel evacuations, and regular exercise are all important contributors in helping with gastrointestinal motility. Common bladder problems include incontinence, frequency, nocturia (frequent urination at night), hesitancy, and retention. Treating incontinence, frequency, and nocturia is often easier than treating hesitancy and retention, where clean intermittent urinary catheterizations are the basic component to success. Working with a good urologist is imperative to prevent potential serious complications, particularly one who understands spinal cord disease. Urodynamic testing is necessary to determine urine retention to check risk for urinary tract infections, particularly if there is a history of UTIs to guide the urologist in terms of the best management.
Fatigue is the lack of mental and/or physical energy. Fatigue can be a direct result of a disease process (primary fatigue) or an indirect result (secondary fatigue). In NMOSD, fatigue is more often thought to be a result of secondary fatigue. Examples of secondary fatigue include fatigue from medications, depression, stress, poor sleep patterns, infections, or changes in walking, which increase energy requirements. The key is to try to identify the underlying cause of the fatigue – for example, if one is not sleeping well because of pain, bladder dysfunction, or depression, this needs to be identified and addressed; not getting consistent sleep will worsen every other aspect of NMOSD! If too much energy is exerted due to changes in walking, physical therapy can help identify better body mechanics that will help conserve energy. When nothing else can be identified as contributing to fatigue, REST is recommended! Conserving energy such that activities are planned and paced can allow for these activities to be more enjoyable rather than stressful. Also, reorganizing home and office can help to reduce the amount of wasted energy exerted so that energy can be saved up for activities that are enjoyable. Also, exercise routines incorporated in the day can actually help build stamina and reduce fatigue in the long-run – it’s also a great stress reducer! Pilates, yoga, and swimming are great, but the key is to find something enjoyable and not overdo it.
Changes in sensation often occur and can manifest as lack of sensation, or numbness, as well as painful sensations called neuropathic pain. This pain is described in many different ways, including burning, squeezing, stabbing, or tingling. Having the sensation of pain means the nerve signal is getting through, but in an inappropriate way. While this can get better over time, there is a long list of medications to treat these symptoms. The same medication doesn’t work for everyone, so the trial and error of finding the right medication can be frustrating. Alternative therapies such as acupuncture and meditation have also been utilized, with varying success.
While the body is constantly working toward repair, once damage is done to the central nervous system, there will always be evidence of this damage, usually evidenced on an MRI. Clinical fluctuations of old symptoms, particularly in the setting of infection, stress, heat, menstrual cycle, or anything that increases core body temperature or throws the body off of its normal course are also possible. It is important to note that this is not inflammatory driven and therefore in no way represents worsening of the condition.