Amyotrophic lateral sclerosis is a disease characterized by progressive muscle wasting due to the damage of one’s motor neurons. Progressive meaning that it continues on from the time it manifested until one’s death, which is predominantly five years. This disease also referred to as the Lou Gehrig’s disease is incurable.
So does one cope with the daily struggles that he faces every waking day? It certainly is a challenge – one that needs a lot of understanding, patience, and support– because the life of a person with ALS will change dramatically for him and his loved ones.
Managing ALS And Its Effects
From the time a person is diagnosed with ALS, he grows weaker and slower. It is imperative that a health care team be assigned to take care of him aside from the physical and emotional support that he should be getting from his family. Although there is no known cure for this debilitating condition, the person with ALS must get the best possible quality of life while he is living.
Here are the aspects that are significantly affected in an individual afflicted with ALS and some tips on how to cope with the damage.
- Breathing. As the disease advances, breathing becomes more and more difficult due to muscle weakness. Help can be done through physical therapy and through ventilation. Effects on respiration are further examined by Dr. Taha Bali, M.D and collaborator, advised that “respiratory function should be assessed by measuring forced vital capacity (FVC) and maximal inspiratory pressure (MIP; a.k.a. negative inspiratory force (NIF)), and nocturnal oximetry. The potential need for non-invasive ventilation (NIV) should be discussed with patients early in disease, and offered when FVC is less than 50%.” A portable machine is utilized so that it enables the patient to breathe air inside his lungs. Tracheostomy can also be done for those whose condition is in the terminal stage and breathing is too labored.
- Drinking And Eating. Because the muscle weakness is generalized, eating and drinking eventually becomes difficult. To prevent too much weight loss, the patient must try to eat a full diet when he can, as eventually, his mouth and tongue muscle functions will begin to deteriorate. When this happens, the occupational therapist makes utensils that are modified according to his patient’s needs. Consequently, tube feeding is the last resort for the patient to thrive.
Dr. Catriona Steele, PhD. and co-authors, studied the effects of ALS on drinking and eating before the arriving at the conclusion that dysphagia results. She further concluded in her research that “the relationships between swallowing function, disease severity, and secondary health consequences are important to consider when gaining the full clinical picture of ALS and related MNDs. In addition to the physiological health risks associated with dysphagia, swallowing impairments in individuals with ALS are also associated with fatigue and prolonged eating duration, contributing to overall reduced swallow-related quality of life”
- Communication. Dr. Katharina Linse, PhD. and co-authors, explore the effects of ALS on an individual’s manner of communication. “During the course of the disease, verbal as well as nonverbal communicative abilities become more and more impaired. In this light, communication has been argued to be “the essence of human life” and crucial for patients’ quality of life,” Dr. Linse concludes.The patient presents with slurred and incomprehensible speech primarily because of weakness of the face and tongue muscles. It will be more challenging for him to communicate appropriately with others and this adds to his frustration and stress. This is where the language therapist comes in. He is responsible for helping the patient find easier ways to keep in touch with family and friends, even using assistive devices to improve his speech and communication.
- Moving And Getting Around. This aspect is probably one of the most frustrating for the person with ALS, especially if he is used to being physically active. As time – and the disease – progresses, his mobility suffers and it will become taxing for him to move and get around without anyone or anything to support him. Attaching railings to specific areas in his home and utilizing walkers and wheelchairs are a must.
- Mental And Emotional Well Being. Anxiety and depression are mental health issues that are sometimes present in patients with ALS. Help must be availableto teach them strategies on how to handle difficult or complicated conversations with their friends, co-workers and family members about ALS.
A good percentage of individuals suffering from ALS are also emotionally labile, which presents as crying or laughing uncontrollably but not corresponding to their actual mood. Frontotemporal dementia is a condition seen in ALS patients as well, although rare.
Support And More Information On ALS
For someone suffering from this incapacitating disease, it is undoubtedly the most difficult time in his life. It may ease his sadness if he is given physical and emotional support, as well as sufficient knowledge about the condition he has so that he may learn how to deal with the symptoms and live with them as comfortably as he can. Online counseling is also one way of guiding and encouraging him to live – in the true sense of the word.