TRANCRIPT OF THE VIDEO SPEECH
Whenever I woke up crying in the middle of the night when I was a baby, my mom would always have my dad go and get me out of my crib and bring me back into their room. He would place me on her chest. She couldnt move her arms, but this was the way that she was able to comfort me. My mom had ALS. She died when I was three years old. Most people that I talk to have no idea what ALS is. Theyve never heard of it before. ALS is a horrible disease that can affect anyone. People need to understand what it is, how its diagnosed, what treatments are available and what research is being done to try and find a cure. ALS stands for amyotrophic lateral sclerosis. And according to , it is a progressive neurodegenerative disease that affects nerve cells in the brain and in the spinal cord. In a way its similar to Parkinsons or multiple sclerosis in the fact that it affects a patients motor functions in their body. Writer Dudley Clendinon who was diagnosed with ALS, described the disease in an article he did for the New York Times. He said, The nerves and muscles pulse and twitch, and progressively they die. From the outside it looks like a ripple of piano keys in the muscles under my skin. From the inside it feels like anxious butterflies. The disease affects each patient differently, but in a typical case of ALS the disease starts in a patients hands and in their feet. Every day activities like walking, like holding a pen, those things will be difficult for people with ALS. As the disease progresses, it moves up a patients arms and legs, and it causes them to become paralyzed. Then, once the disease is in the final stages, it moves into a patients torso, and thats when it affects their ability to eat, to speak, and to breathe on their own. Throughout all of this, the disease does not affect a patients mind, so they have a complete understanding of what is happening to them. Arleen M. Kaptur said in Todays Caregiver that 50% of patients die within 18 months of being diagnosed. There is no cure for ALS. The symptoms of ALS will become obvious over time, but its a difficult disease to diagnose. Theres no test for ALS, and it shows up differently in each patient. So, doctors essentially have to work backwards. They have to rule out everything else before they can make that eventual diagnosis of ALS. Arleen M. Kaptur said in her article that there are certain tests that can be done, blood tests, biopsies, MRIs, those are the type of tests that are done to rule out everything else before they make that final diagnosis. Once the disease is diagnosed, there are certain treatments that patients can use. In her article, Arleen M. Kaptur said that there is one drug that is available, which is called Rilutek. And what Rilutek does is it slows down the symptoms of the disease. So, patients are, they can live a little bit longer, but it is not a cure for the disease. Patients can treat specific symptoms. So, they can work with a physical therapist to help them with their movements, and they can also work with a nutritionist because patients will typically lose a lot of weight when they have the disease. And then at the very end they can use a feeding tube or ventilation when they can no longer eat and breathe on their own. There are only a few treatments available for ALS, but research is being done to try and find a cure. Research has to be done in a lot of different areas because so little is still known about the disease. says that research is being done into the causes of the disease, so theyre looking at different environmental factors that may cause it. They are also looking at different gene mutations that may cause the disease. They also have to research how the disease progresses because it does show up differently in each patient. And then, of course, theyre looking at different treatments for the disease. So, they are experimenting with clinical trials and different drugs. And theyre also looking into stem cell research. But there is no cure yet for the disease. ALS is a disease with no cure, and people need to understand what it is, how its diagnosed, what treatments are available, and what research is being done to try and find a cure. People diagnosed with ALS face death in their near future, but scientists are researching the disease and every day we get closer to finding a cure.
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