I have a friend who was diagnosed with Amyotrophic lateral sclerosis(ALS), a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. I wanted to find out more about this disease, what it does to people, how we can help them, and maybe how we could find a cure. If you have not heard of ALS you probably know of it by its other name, Lou Gehrig’s disease. About 1 out of 10 people with this disease are diagnosed by a defect genetically. For the other 9 the cause is still unknown. The neurons or nerve cells die away and no longer have the ability to send messages to your muscles. It means that you will lose muscle, begin twitching, and will lose the ability to move your arms and legs. And at some point you won’t be able to move your body at all. It slowly gets worse. This disease never affects the ability to think but you will eventually die to the fact that the muscles in your chest will stop working and you will asphyxiate. Some symptoms are having difficulty breathing or swallowing, head drop as cause of weakening muscles, cramps, speech problems, unusual weight loss and hoarseness in the voice. People typically die within 3-5 years of the diagnosis but about 1 in 4 will live a little more than 5 years. There are devices and therapies that can manage the symptoms, keep as much independence as possible and prolong survival. It doesn’t affect the brain at all and they are usually aware of their loss of functions and movement. People may even become depressed. A protein test was conducted last year to help physicians and researchers find the patients that have the highest risk for a rapid progression. These patients could then be given therapies that are new and being tested. Dr. Boylan said “A test like this could help identify those patients who are at risk for faster progression of weakness.”If there were a way to identify people who are likely to have relatively faster progression, it should be possible to conduct therapeutic trials with smaller numbers of patients in less time than is required presently.” The test measures the neurofilament heavy form in the blood and spinal fluid. They are proteins which provide structure to the motor neurons which are damaged by the disease. The proteins are then broken down and float around in blood serum and in your spinal fluid Dr. Boylan said that they found an association with high levels of the protein in the blood serum and spinal fluid and a faster progression of muscle weakness in patients. So far we have not found a cure to this disease but we a making new discoveries and progress. If you and/or a family member have already been diagnosed or you think are beginning to have symptoms, talk to your doctor about places, people, and medicine to help the symptoms.
Some questions for you;
Is there pain will ALS?
How does it start and is it constant?
Why is it referred to as Lou Gehrig’s disease