When it comes to ALS, we've been there, done that, now serving 50 tips in 6 categories ranging from ALS Research to What is ALS?.
ALS is a disease in which patients will have an average survival rate of two to five years after being diagnosed. As the disease progresses, it removes the person's ability to carry out daily activities and care for themselves. Home Health Care will be able to provide a nurse or aide who will come into the home and evaluate if the needs of the person with ALS are being met. This is especially useful for patients who are already wheelchair bound or their caregivers, who might need a break.
The muscles that control breathing are innervated by motor nerves and when they cease to function, there will be problems controlling breathing. A pulmonologist will be able to evaluate the breathing capacity of a person with ALS and suggest ways to help with breathing such as a tracheotomy and/or respirator. ALS sufferers with a history of chronic obstructive pulmonary disease (COPD) or asthma will benefit tremendously by seeing a pulmonologist.
Since ALS is a terminal disease, if you have ALS, seeing a social worker or psychologist is extremely beneficial. A psychologist or social worker can provide support to the patient as well as their caregiver and family members. A social worker or psychologist can also help people with ALS cope with the feelings of shock, anger, and sadness they may experience, especially if there are signs of depression. Social workers can help the patient and family members decide on hospice care during the end stages of the disease.
As the muscles for chewing and swallowing weaken, ALS patients will suffer from an increasing difficulty to eat, leading to reduced nutritional intake. A reduced appetite can also be a side effect of certain medications someone might be taking. People with ALS also mention how fatigued they feel when eating large meals or hard to chew food, and are unable to finish it.
These situations can all lead to poor nutrition and weight loss. Diet or nutritional therapy can help prevent poor nutrition by providing menus or suggestions for meals. A dietitian or nutritional therapist can in addition give suggestions for increasing caloric intake and prevent fatigue while eating. As the person loses the ability to chew and swallow, a dietitian or nutritional therapist can be consulted about setting up the procedure to put in a feeding tube.
Even if there is no indication of spastic bulbar palsy symptoms initially, there will be changes of the face and mouth eventually. As problems with speaking, eating, and swallowing develop, a speech pathologist can suggest ways to prevent aspiration. There are various methods and equipment a speech pathologist can give people with ALS to help with communication.
Occupational therapy is a necessary supportive treatment to help people function normally, and as independently, as possible. This type of therapy is able to teach people with ALS, new skills to help them take care of themselves on a daily basis. For example, teaching the skill of how to dress alone with weakness in the hand. Occupational therapy is also helpful when the person has to be fitted for wheelchair, or need new techniques to help them conserve their energy and prevent fatigue.