Amyotrophic Lateral Sclerosis (also known as ALS, Lou Gehrig’s disease, or motor neuron disease) is a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe.
ALS is not contagious. There is no cure for ALS and few treatment options for the majority of people living with the disease. Approximately 80 per cent of people with ALS die within two to five years of being diagnosed.
This is a very rare disease.
A terrible way to die. Being trapped in ones own body, knowing that you are choking but not being able to do anything about it.
This is one of the many reasons why it's been so hard on us. Because it's terribly difficult for my father in law to grasp what is happening and he just wants a diagnosis so that the doctor can fix it. Because in his mind, if they find the problem, they will be able to stop it.
But we are stuck in this paradigm of having to say over and over again, it won't get better, it will get worst. You will be passing from this and there is nothing the doctor's can do to help stop it or slow it down.
So every week, we see him degrading rapidly. We hold out or breaths not know if today will be the day we get a call. We often do. Whether it's loosing mobility or that he's fallen again. The phone rings often and that's when our hearts stop for a second.
We are now in the late stages. He can still walk but with a walker. He has no more muscle function in the neck and so his head is always looking to the ground.
His tongue has shrunk making it difficult to swallow his own spit let alone food. His throat is starting to get constricted and it become hard to talk. I can get about 5 minutes of phone conversation with him and that's it. He gets too tired and because he's loosing all muscle mass, it's taking him a lot of energy.
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