A heavy heart – a dear friend – helplessness
A dear friend has been diagnosed with Lou Gehrig’s disease and my heart feels as though it will break. So many memories of this friend surfaced when I heard the news and I just keep wishing it ‘away.’ Oh God . . .
Lou Gehrig’s disease damages motor neurons in the brain and spinal cord. Motor neurons are nerve cells that control muscle movement. Upper motor neurons send messages from the brain to the spinal cord, and lower motor neurons send messages from the spinal cord to the muscles. Motor neurons are an important part of the body’s neuromuscular system. The neuromuscular system enables our bodies to move and is made up of the brain, many nerves, and muscles. Things that we do every day — like breathing, walking, running, lifting stuff, and even reaching for a glass of water — are all controlled by the neuromuscular system.
Here’s how the neuromuscular system works: If you want to make a fist, your brain first sends signals through upper motor neurons to the area in your spinal cord that controls your hand muscles. Then lower motor neurons in your spinal cord signal the muscles in your hand to move and make a fist.
Over time, Lou Gehrig’s disease causes these motor neurons in the brain and spinal cord to shrink and disappear, so that the muscles no longer receive signals to move. As a result, the muscles become smaller and weaker. Gradually the body becomes paralyzed (say: par-uh-lized), which means that the muscles no longer work. However, someone with ALS, even at an advanced stage, can still see, hear, smell, and feel touch. The nerves that carry feelings of hot, cold, pain, pressure, or even being tickled, are not affected by Lou Gehrig’s disease. The parts of the brain that allow us to think, remember, and learn are also not affected by the disease.
Management Issues in an ALS patient: ALS as a disease is incurable as of now. That said there is a lot which can be done to help a patient with ALS. Only one medication by the name of riluzole is approved for the treatment of ALS. That too prolongs the life expectancy by only a few months. Patients with ALS need a multitude of services and their care is best handled by a multi-speciality team consisting of neurologists, respiratory therapists, gastroenterologist, physical and occupational therapists and speech therapists. As the disease progresses and takes its toll, patients are prone to pneumonia and other respiratory tract infections. As their swallowing and speech functions become progressively impaired, nutrition (feeding) may have to be accomplished via either a feeding tube or a tube in the stomach (we call this a PEG tube). Physical and occupational therapy helps to preserve motor functions. These patients are greatly helped by assist devices like motorized wheel chairs, a simple straw to aid them in drinking water and other liquids etc.