The diagnosis of a serious illness can be difficult to navigate. If you or a loved one has been diagnosed with bulbar onset ALS, you may be wondering about your next steps. This brief guide will help you understand bulbar onset ALS, including symptoms, treatment options, and hospice care.
What Is Bulbar Onset ALS?
Bulbar onset ALS is a rare form of amyotrophic lateral sclerosis (ALS) that starts with weakness and atrophy in the muscles responsible for speaking, swallowing, and breathing. This type of ALS accounts for only a fraction of all ALS cases, but it can be particularly challenging for patients and caretakers because it affects essential bodily functions.
The more common form of ALS begins with weakness in the limbs, but bulbar onset ALS patients may experience drooling, slurred speech, difficulty swallowing, and shortness of breath as their first symptoms.
Symptoms
Patients may experience weakness or twitching in the face, neck, and tongue. Other common symptoms include weight loss, fatigue, and insomnia. Although patients may experience different symptoms, the most challenging and distressing symptoms tend to be those related to speaking, swallowing, and breathing.
Treatment Options
Unfortunately, there is currently no cure for bulbar onset ALS. The primary goal of treatment is to maximize the quality of life and minimize the severity of symptoms. Riluzole, a medication that slows the progression of ALS, may be prescribed, and patients may undergo speech and swallowing therapy to learn how to manage their symptoms. Most importantly, doctors may advise patients to seek hospice care, which offers palliative care and support to help them and their families manage the challenging symptoms of this disease.
Hospice Care
Hospice provides specialized care for patients with life-limiting illnesses, including ALS. Hospice care can be provided in the patient's home, a hospice center, or a hospital. Care may include nursing, medication management, counseling, and spiritual support. Hospice aims to improve a patient's quality of life by managing symptoms, providing holistic care, and supporting the family through this difficult time.
Bulbar onset ALS can be devastating for patients and their families. We hope our brief guide to this condition can help patients and families plan for the future and make decisions that suit their needs. Hospice care offers support and comfortable care for patients with bulbar onset ALS and their families, allowing them to spend valuable time together. Contact Soulistic Hospice today to learn more about our hospice medical care in the greater Tucson area. Our team of qualified professionals will ensure your loved one gets the best level of care during this difficult time.
