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Amyotrophic Lateral Sclerosis
WHAT YOU NEED TO KNOW:
Amyotrophic lateral sclerosis (ALS) is also called Lou Gehrig disease. It affects the nervous system. The nervous system includes your brain, spinal cord, and nerves. In ALS, the motor nerves that direct your muscles to move are damaged. These muscles gradually weaken, waste away, and can begin to twitch. Over time, ALS may lead to total paralysis (not able to move your muscles), including the muscles for breathing.
WHILE YOU ARE HERE:
is a legal document that explains the tests, treatments, or procedures that you may need. Informed consent means you understand what will be done and can make decisions about what you want. You give your permission when you sign the consent form. You can have someone sign this form for you if you are not able to sign it. You have the right to understand your medical care in words you know. Before you sign the consent form, understand the risks and benefits of what will be done. Make sure all your questions are answered.
Eating and swallowing:
Your doctor may ask a swallowing therapist to work with you if you have trouble swallowing. This person has special training to help people learn safer ways to swallow. The swallowing therapist will also help you learn which foods and liquids are safe to eat and drink.
- You may be fed by an IV or a nasogastric (NG) tube if your swallowing problems are very bad. An NG tube is put in through your nose and goes down into your stomach. The tube may also go directly from the outside of your body into your stomach. This is called a gastrostomy tube.
- You may be given thickened liquids to drink because they may be easier for you to swallow. A special powder is used to thicken liquids. You may also be able to eat softer (mashed) foods. You may be able to eat what you usually eat when your swallowing gets better.
This is also called a feeding tube, G-tube, or gastrostomy tube. A small, flexible tube is put into a small cut in your abdomen. The end of the tube goes into your stomach which is stitched closed to seal the tube. It may also be placed using an endoscope (a long thin tube passed through the mouth and down into the stomach).The PEG tube is used to give you liquids, food, and medicine. The tube may also be used to let air or fluids out of your stomach. You may have a PEG tube for a short time, or long-term. If you need it long-term, your PEG tube will need to be replaced as directed by your caregiver. You may also need to learn how to regularly clean and care for your PEG tube.
You may have one or more of the following tests:
- Blood and urine tests: You will have different tests done on your blood and urine.
- Electromyography: This test is also called an EMG. Nerves that control your muscles are checked and their electrical activity is measured.
- Imaging tests:
- A CT , or CAT scan, takes pictures of your skull and brain. You may be given contrast liquid before the scan. Tell a healthcare provider if you have ever had an allergic reaction to contrast liquid.
- An MRI of the head takes pictures of your brain, blood vessels, and skull. You may be given contrast liquid to help the pictures show up better. Tell a healthcare provider if you have ever had an allergic reaction to contrast liquid. Do not enter the MRI room with anything metal. Metal can cause serious injury. Tell a healthcare provider if you have any metal in or on your body.
- Lumbar puncture: This procedure may also be called a spinal tap. During a lumbar puncture, you will need to lie very still. Caregivers may give you medicine to make you lose feeling in a small area of your back. Caregivers will clean this area of your back. A needle will be put in, and fluid removed from around your spinal cord. The fluid will be sent to a lab for tests. The tests check for infection, bleeding around your brain and spinal cord, or other problems. Sometimes medicine may be put into your back to treat your illness.
- Muscle biopsy: A small piece of your muscle may be removed and sent to a lab for tests.
- Nerve conduction velocity: This test measures the nerve impulses that travel between the spinal cord and muscles. Two electrodes are taped to your skin above a nerve. A small shock is passed through the nerve to measure the size and speed of nerve signals.
Treatment of ALS is focused on trying to ease the symptoms and prevent the disease from getting worse. You may have one or more of the following treatments:
- Central nervous system medicine: This medicine reduces the damage to the motor neurons by decreasing the release of glutamate. Glutamate is a chemical in the brain.
- Other medicines: These medicines may help ease muscle cramps, fatigue, and excessive saliva or mucus caused by ALS.
- Rehabilitation program: This program may include physical, breathing, and speech exercises.
The medicine used to treat you may cause liver problems. ALS may be difficult to treat. The treatments may or may not control your symptoms. If ALS is not treated, you may have more trouble moving, walking, eating, or breathing. Your health, quality of life, and ability to function may decrease.
CARE AGREEMENT:You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment.
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The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.