ALS affects slightly more men than women, with a male-to- female ratio of about 1.5:1. The average life expectancy for peo- ple with ALS is two to five years from the time of diagnosis. How- ever, about 10% of people with ALS live for 10 years or more, and some people with the disease can live for several decades. The incidence of ALS is highest in the United States and Europe, and it is rare in other parts of the world. The reason for this geo- graphic variation is not fully understood. There is no known cause of ALS, but research has identified several potential risk factors, including genetics, environmental factors, and lifestyle factors such as smoking and physical activ- ity. STAGES OF ALS How does ALS present itself to individuals or Person’s with ALS (pALS). While the end point is the same for all people with ALS, the disease progression varies among all those diagnosed. The muscles affected first are different from person to person. Some individuals progress quickly through the disease process while others may plateau at times, or even revert for brief peri- ods before resuming the ultimate decline. Because there is no single test that can definitely diagnose ALS, a healthcare provider will conduct a physical exam and review your full medical history. A neurologic examination will test the patient's reflexes, muscle strength, and other responses and will be held at regular intervals to assess whether symptoms such as muscle weakness, muscle wasting, and spasticity are progressively getting worse. Here are current tests physicians might perform to help di- agnose and or rule out ALS from the National Institue of Health (NIH ALS Diagnosis). These usually involve muscle and imaging tests to rule out other diseases and confirm the diagnosis of ALS: • Electromyography (EMG) is a recording technique that de- tects electrical activity of muscle fibers and can help diag- nose ALS. • A nerve conduction study (NCS) measures the electrical ac- tivity of your nerves and muscles by assessing the nerve's ability to send a signal along the nerve or to the muscle. • Magnetic resonance imaging (MRI) is a noninvasive proce- dure that uses a magnetic field and radio waves to produce detailed images of the brain and spinal cord. • Blood and urine tests may be performed based on your symptoms, test results, and findings from the examination by a doctor. A physician may order these tests to eliminate the possibility of other diseases. • A muscle biopsy may be performed if your doctor believes you may have a muscle disease other than ALS. Under local anesthesia, a small sample of muscle is removed and sent to the lab for analysis.
ness or twitching in one or more limbs. They may also notice dif- ficulty with fine motor movements, such as writing or buttoning a shirt. The symptoms may be mild and not interfere significant- ly with daily activities. Noted symptoms can include: • Muscle weakness, twitches, and cramping, followed by problems with balance, coordination, and gait. • Increasing effort to breathe, slurred speech, and some dif- ficulty chewing and swallowing. • Typically, no impact to behavior or cognition • This is where voice banking may begin but often patients do not fully engage in this process, incorrectly believing they have more time to complete this activity. • Touch, eye tracking or switch-based computer access may be prescribed. MIDDLE STAGE OF ALS - at this stage two to three regions of the body are now involved. The symptoms in this stage be- come more pronounced and begin to affect the patient's ability to perform daily tasks. The weakness spreads to other limbs and muscles, including – often early in the disease - those responsi- ble for speech, swallowing, and breathing. Patients may require assistive devices such as a wheelchair and may also require as- sistance with daily tasks such as grooming and feeding. Noted symptoms could include; • Muscles become increasingly paralyzed, atrophied, or per- manently constrained. • A wheelchair and/or respirator are typically prescribed, and constant care is needed for daily activities. • A small portion of ALS patients may spontaneously laugh or cry (pseudobulbar affect), and nearly 50% show some signs of Aphasia-like language impairments (An Evolving Understanding of ALS with Frontotemporal Degeneration). • Users will require eye gaze or complex switch access through the entirety of this phase for language/communi- cation or environmental access. • The end of this stage is typically marked by gastronomic intervention (a feeding tube) as secretion or bolus control becomes problematic. LATE STAGE OF ALS – The end of life. In the final stage of the disease, the patient is completely dependent on others for care. They may be unable to move, speak, or breathe on their own and may require mechanical ventilation. For the most part, the patient's cognitive function remains intact, but they are unable to act on this cognitive awareness. • The top causes of death for pALS are respiratory failure, pneumonia, and heart complications (in order). • Around 30% of patients will exhibit dementia and/or se- vere aphasia by this stage (An Evolving Understanding of ALS with Frontotemporal Degeneration). • The Trochlear nerve is often the last to be affected by ALS, so users can use eye gaze to generate communication
EARLY STAGE OF ALS – first region of involvement in the body is noted. In this stage, the patient may experience weak-
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