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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, and he would place me on her chest. She couldn't move her arms, but this was the way that she was able to comfort me. My mom had ALS. She died when I was 3 years old.
Most people that I talk to have no idea what ALS is. They've never heard of it before. ALS is a horrible disease that can affect anyone. People need to understand what it is, how it's 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 Alsa.org, it is a progressive, neurodegenerative disease that affects nerve cells in the brain and in the spinal cord. In a way, it's similar to Parkinson's or Multiple Sclerosis in the fact that it affects a patient's motor functions in their body.
Writer, Dudley Clendinen, 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 patient's hands and in their feet. Everyday activities like walking, like holding a pen, those things will be difficult for people with ALS. As the disease progresses, it moves up a patient's arms and legs, and it causes them to become paralyzed. Then, once the disease is in the final stages, it moves into a patient's torso, and that's when it affects a person's ability to eat, to speak, and to breathe on their own. Throughout all of this, the disease does not affect a patient's mind, so they have a complete understanding of what is happening to them.
Arlene Abcaptor [phonetic] said in "Today's 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 it's a difficult disease to diagnose. There's no test for ALS, and it shows up differently for 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.
Arlene Abcaptor 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, Arlene Abcaptor 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. Alsa.org says that research is being done into the causes of the disease. So they're looking at different environmental factors that may cause it. And they're 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, they're looking at different treatments for the disease. So they are experimenting with clinical trials and different drugs. And they're 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 it's 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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