Living With Spinal Muscular Atrophy
It can be very challenging for patients to raise a child with a physical disability. The need for constant physical support is mandatory for managing the symptoms of spinal muscular dystrophy. As most spinal muscular atrophy patients are children, usually infants, the caregivers are bound to take care of such a child. Spinal muscular atrophy affects the aspects of the child’s day to day life. The child has a more challenging time getting around, but there are also risks of complications. In this scenario, the patients must stay updated about the condition to give their child a healthy and fulfilling life. Some of the complications of spinal muscular atrophy are scoliosis and respiratory problems.
Try to use spinal braces or respiratory masks depending on the complication of the symptoms. As the child is overgrowing, they only require a spinal brace, but the adults might need surgery or medication for the painful symptoms. The patients might need known invasive ventilation (NIV) in which there is the delivery of air from the room to the lungs by using a mask or mouthpiece. School-going children have normal emotional and intellectual development, while some of them might have above-average intelligence. The parents must encourage their children to participate in as many physical activities as possible. The child’s classroom is a place where he or she can excel, but the child with spinal muscular atrophy might need extra help to manage workload.
The physical disability of the child can assert challenges and makes the person less confident in social situations. The pressure to fit in can be very stressful for children with spinal muscular atrophy. To find ease in social settings, it is essential to go through therapy and counseling. The proper nutrition for children with spinal muscular atrophy is crucial as the neuromuscular disorder affects the muscles involved in chewing, sucking, and eating food. It is an excellent possibility that the child might become malnourished so keep your options open for tube feeding. The less active lifestyle of spinal muscular atrophy patients makes them more prone to get obese. Again, the balance in eating and maintaining a healthy lifestyle will help keep spinal muscular atrophy symptoms. There is a great variation pattern for the life expectancy among the spinal muscular atrophy patients as most of the children having type 1 SMA only live for a few years. Still, people seeking proper treatments have promising improvements in the quality of their life and life expectancy. Simultaneously, children with other types of spinal muscular atrophy can survive longer until adulthood.
The two people with spinal muscular atrophy can never be similar. It is impossible to know what you are expecting. Attracting physical therapy and some degree of help in doing daily chores will ensure a healthy life for the children. The management of complications with spinal muscle atrophy must be proactive. The parents must provide their children with the help and support they may require. A medical care team must be present to keep informed about the condition of the patient. The adults who have physical disabilities must acquire support groups and occupational therapists’ services to keep spinal muscular atrophy complications at bay. As the disease runs in the families, a person must go to test genes before getting married. The coming progeny does not suffer from the dangerous consequences of disability. You can also get information from the patients about the strategies they use to optimize symptoms management. Try to develop strong relationships and normalize the gatherings in social networks because this will make you discover more innovative approaches to manage your symptoms. Try to devise emotional and physical strategies to manage your symptoms.