LOTS Mobility

A common issue for people affected by LOTS is mobility or a person’s ability to get from one place to another. Poor mobility may be caused by a combination of muscle weakness, spasticity and coordination problems.

Spasticity: Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and may interfere with movement and manner of walking. Spasticity treatments may include such medications as baclofen®, diazepam®, tizanidine® or clonazepam®. Physical therapy regimens may include muscle stretching and range of motion exercises to help prevent shrinkage or shortening of muscles and to reduce the severity of symptoms. In rare cases, surgery may be recommended for tendon release. Botulinum toxin® injections may be used to temporarily sever the nerve-muscle pathway.

Coordination: People with LOTS often have difficulty with coordination because of excess storage material that builds up in the cerebellum, the area of the brain that regulates coordination. In this case, evaluation by a physical therapist and occupational therapist may be helpful in making suggestions to help compensate for impaired coordination.

Weakness: People with LOTS may have weakness of their arms and legs because of excess storage material that builds up in parts of the brain and spinal cord that affect muscle strength. In this case, evaluation by a physical therapist and occupational therapist may be helpful in making suggestions to help compensate for weak muscles, and recommend the use of proper bracing, canes, wheelchairs and motorized vehicles when necessary.

Regular exercise is strongly recommended for all affected individuals to help maintain the highest level of mobility possible. Everyone can do some type of daily physical activity, regardless of limitations. For example, you can raise and lower your arms, turn your head slowly from side to side or up and down, and tighten and relax your muscles. Any exercise is better than no exercise at all. However, it is important to not over exercise muscles, especially weak muscles, and an exercise program should be designed under the supervision of a qualified physical therapist.

LOTS is a progressive disorder and even with the best of care, physical therapy and regular exercise, mobility may become more difficult over time. It is important to notice the signs of reduced mobility:

• Frequent falls
• Difficulty getting from point A to B
• Exhaustion after short movements

It is essential to seek out evaluation from a physical therapist to evaluate current mobility and to recommend the most appropriate assistive devices, if necessary. Often people with LOTS view another step on the mobility progression as a new limitation, but in fact the right assistive devices will provide more independence and autonomy.

NTSAD appreciates the high cost of new mobility assistive devices and can work with you to appeal for insurance coverage. Many times assistive devices, especially motorized wheelchairs and scooters, ramps, and stairway chairs can be purchased secondhand. However, it is important to make sure that the correct device is purchased, and it is always best to have a physical therapist evaluate the assistive device.