ALS awareness has increased greatly as a result of grassroots campaigning such as the ice bucket social media challenge, in addition to the strong advocacy work performed each year. But most people in our society don’t know much about ALS past the point of, “it is really serious.” This sentiment is certainly true. ALS, or amyotrophic lateral sclerosis is defined as an increasingly progressive neurodegenerative disease that affects nervous system cells in both the brain and the spinal cord. The lengthy medical name means “no muscle nourishment.” When muscles do not have nourishment, they atrophy.
The term, “lateral” designates the portions of a person’s spinal cord where some of the nerve cells that signal muscle control are housed. When this area degenerates due to the illness, it leads to a hardening and/or scarring (known as, “sclerosis”) in this region. As a society we now understand that ALS exists, but we do not understand the extent of treatment that is required by someone who is afflicted with this disease. This article will provide a general overview of the healthcare needs of ALS patients.
Motor Neurons and Types of ALS
In the human body, motor neurons span from the brain to the spinal cord and also, from the spinal cord to the body’s muscles. ALS causes a continued degeneration of these motor neurons. What happens when motor neurons die? Without motor neurons, the brain loses its ability to control and moderate muscle movement. The loss of voluntary muscles movement will cause the loss of speech, ability to eat, move, and even breathe.
ALS is classified into two different types, sporadic and familial. Sporadic is the most common form of ALS. In the United States, 90-95% of ALS cases are classified as sporadic ALS. This means that anyone may be affected without a foreseeable reason. Familial ALS (FALS) comprises 5-10% of all cases in the U.S. and means that the disease has been inherited.
How is ALS Treated?
Although research continues, there is no cure for ALS currently. However, there are treatments that have been shown to effectively slow the progression of the disease in addition to improving its symptoms. These treatment options are typically classified as either being part of drug-therapy or non-drug therapy.
Benefits of Drug Therapy
The first drug that was approved by the Food and Drug Administration (FDA) for the treatment of ALS was Rizole (Rilutek). Encouragingly, this drug was shown to reduce the damage that ALS causes to motor neurons. But it is important to remember that Riluzole does not reverse damage that has already been done due to the progression of the disease. In clinical trials conducted featuring patients afflicted with ALS, Riluzole was shown to prolong life by several months and also allowed patients to survive for longer without needing the support of a ventilator (National Institute of Health ALS Fact Sheet, August 2000).
Benefits of Non-drug Therapy
The benefits of non-drug therapies for ALS patients are not to be ignored. Non-drug therapy treatments can hold significant health and wellness benefits for patients suffering from ALS. An additional benefit of non-drug therapies is that they can also improve the quality of life for caretakers of ALS patients. Learning about these therapeutic options can help with the coping process:
- Physical and Occupational Therapy – Physical and occupational therapy treatments may include physical exercises and/or special equipment that can assist with symptom management and can help to increase overall mobility.
- Proper Nutrition – The help of a nutritionist can help ALS patients and their caretaker plan more nourishing meals that can be served in smaller amounts throughout the day.
Speech Therapy Assistance – Assistance from a professional speech therapist can help patients to communicate better when they are having difficulty speaking.
- Practicing Relaxation – Techniques such as relaxation therapy can help ALS patients and their loved ones cope with their illness in a more positively impactful way.
- Massage Therapy – Massages help to decrease the severity of muscles stiffness while simultaneously relieving discomfort caused by any cramps. Massage provided to the patient and/or caretaker can also provide a much needed pleasurable experience during this difficult time.
- Distraction Through Activities – Activities that actively engage the patient’s mind can cause them to focus on more positive aspects of life and will help to relieve some symptoms caused by psychological discomfort.
- Psychotherapy – An advisable step. Speaking with a mental health professional can help patients vent and communicate the negative emotions they are experiencing as a result of the disease. Regular work with a mental health professional will benefit both the patient and their caregiver.
Management of Disease-related Symptoms
ALS is a progressive neurodegenerative disease. This means that as time goes on, patients will continue to develop new and different symptoms. On a positive note, there are effective ways to manage many of these uncomfortable symptoms. Should additional support by needed, it is also important for patients and caregivers to know when they should contact the patient’s healthcare team. Below is information on how to manage some of the common physical symptoms that may present themselves throughout the course of the disease:
- Muscle spasm and cramps – muscle spasms and cramps are most commonly managed by conducting regular stretching exercises, maintaining a healthy level of fluid consumption and the use of prescription medications (in some cases).
- Swelling in the Hands and/or Feet – Elevating swollen limbs may help with swelling. However, if swelling continues despite elevation, it is recommended to reach out to the patient’s doctor.
- An excess of saliva or drooling – In patients who are demonstrating a buildup of excess saliva or drooling, there are medications that can assist with drying the patient’s mouth.
- Clogged throat and nose – Clogging of the throat and nose may be being caused by a patient breathing through his/her mouth more than the usual amount. An effective means to mitigate this symptom is to utilize a room humidifier. If the problem continues to persist, it is best to talk to the patient’s health care professional.
- Teeth chattering – Jaw or teeth chattering may occur when a patient is either cold, yawning or even speaking. This symptom may present itself in a minor fashion however, for more noticeably or serious symptomatic displays, it is advised to contact the doctor that oversees the patient.
- Difficulty breathing – Short periods of difficulty in breathing can occur and it is always scarey for the patient and their caretaker. It is important to discuss with the patient’s doctor if brief spells of difficult breathing, gasping for air or a feeling of suffocation are to be expected. If so, patients can take certain measures to avoid the uncomfortable symptom to a degree by avoiding strong odors including but not limited to smoke, alcohol, cold air, and spicy foods, which have been shown to cause this symptom to appear.
- Indigestion and heartburn – Some patients with ALS may also suffer from gastro-esophageal refluxdisease (GERD). Avoiding foods and liquids that cause GERD to flare up such as caffeine and spicy foods may prove beneficial. Additionally, doctors may decide to suggest a medication for managing the symptoms of GERD.
- Speech difficulties – ALS causes difficulties in verbal communication that can make communicating with patients somewhat difficult. If a speech problem is evident, it is important to encourage the patient to speak slowly and to pronounce their communication as clearly as able. As recommended earlier, a speech therapist may also be able to assist patients in communicating more effectively.
How To Care For Someone With ALS
Nobody expects to have to face a terrible disease like ALS but, loving and devoted caregivers give patients support across the U.S. every day. However, there will come a point when a caregiver must relinquish a significant amount of care of their loved one to a professional team. Caregivers should not feel guilty doing this because it is not a question of devotion. Rather, the decision to enlist professional medical care is a decision that is made to enhance the overall quality of life for both the patient and their caregiver.
How Hospice Can Help ALS Patients and Caregivers
Hospice care for ALS patients is available to patients who are at the end-stage of the disease and can provide numerous benefits to patients and caregivers. Hospice care provides several different options such as:
- Supplementing a patient’s care while they remain at home.
- Providing caregiver respite for caregivers who need to take a break and recharge themselves.
- Providing in-patient, 24/7 care at a separate facility.
Hospice services are designed to support patients and caregivers on a day-to-day basis, providing both care and comfort. A hospice care team can take charge of administering medications (including those needed for pain management), assisting with tasks relating to hygiene and additional daily and medical tasks. Another benefit of hospice assistance is the compassionate support that is provided. Hospice care professionals become nurturing friends to patients and caretakers. The feeling of support provided during this difficult time is invaluable to families who are otherwise being pushed past their limits.
Contact Harbor Light Hospice For Support
If you or a loved one is suffering from ALS and would like to discuss the potential benefits that hospice care has to offer, contact Harbor Light Hospice by phone or by sending an online message today. Our organization is ready to provide you with useful information and is happy to discuss you or your loved one’s needs. Although no one wants to face serious disease, no one has to face it alone. Harbor Light Hospice is ready to support you each step of the way.