Amyotrophic lateral sclerosis (ALS), also known as Lou Gherig’s Disease, is a progressive degenerative disease that affects the nerve cells (neurons) in your brain and spinal cord. ALS/Lou Gherig’s Disease causes a loss of voluntary muscle control and affects walking, talking, and swallowing. Once symptoms begin, they worsen over time.
Unfortunately, there is currently no cure for this disease, nor are there any effective treatments to halt or reverse its progression. However, treatments are available to help reduce symptoms, make patients more comfortable, and may even help patients live longer.
Causes of ALS
Most cases of ALS are sporadic, which means no specific cause is known. About 5-10% of ALS cases are classified as familial, which means that the condition was inherited from a parent.
The risk for ALS increases with age. The most common timeframe to develop ALS is between 40 and 70, although symptoms can develop earlier. While there is ultimately no way to cure the disease, the progression rates for ALS are incredibly variable. Patients who receive an ALS diagnosis typically survive three to five years post-diagnosis, while others may live ten years or even longer.
First Symptoms of ALS
Amyotrophic lateral sclerosis is a difficult disease to diagnose early because it can mimic other neurological diseases. Additionally, there is no single test that can diagnose ALS; a diagnosis requires a variety of exams, tests, and scans to figure out whether you have ALS or something else, which takes time.
It typically takes anywhere from nine to twelve months for someone to be diagnosed with ALS after they first start noticing symptoms. Early symptoms of ALS can start in the muscles in the hands, arms, legs, or feet, or they can begin in the muscles that control speech and swallowing. Since not all people with ALS have the same symptoms, it can be difficult to determine whether a patient is experiencing the first symptoms of ALS or another disease entirely.
Common Early Symptoms of ALS
Nearly two-thirds of ALS cases begin in one of the limbs, such as a hand or foot. The most common early symptom is muscle weakness without pain.
Early Signs of Limb Onset ALS
- Muscle weakness (without pain)
- Muscle stiffness
- Difficulty walking (stumbling, tripping)
- Involuntary jerking of a limb
- Difficulty holding things in your hand
- Muscle cramping in arms or hands
- Muscle twitching
In about one-third of cases, the first symptoms of ALS involve the muscles that control speech and swallowing.
Early Signs of Bulbar Onset ALS
- Slurred speech
- Difficulty swallowing
- Muscle spasms in the face or throat
- Choking on liquids
- Uncontrolled laughing/crying
Other early symptoms of ALS can include respiratory onset, such as shortness of breath, although that is a relatively rare early symptom. ALS can also affect the mind; cognitive and behavioral changes typically begin after the onset of physical symptoms, but in some cases, they may appear first.
Treatment and support are available to help address most symptoms of ALS. Individuals diagnosed with ALS can benefit from many different specialists, including but not limited to
- A neurologist
- An occupational therapist
- A respiratory therapist
- A speech therapist
- A psychologist
- A palliative care doctor
Assistive devices like braces and wheelchairs can also help reduce pain, as can approved medications.
The Benefits of Hospice and Palliative Care for ALS
Capital Caring can help those who are suffering from ALS symptoms. By the time a patient reaches end-stage ALS, functionality significantly declines. Hospice and advanced illness care at Capital Caring can help relieve the pain and both the physical and emotional stress of ALS to help ensure the greatest level of comfort for our patients and their families.
If you or a family member could benefit from hospice or palliative care for ALS, do not hesitate to reach out. We offer both inpatient and at-home services throughout the mid-Atlantic area. Please call us anytime, day or night, at 800-737-2508 to learn how we can help.