There is such a lack of knowledge about ALS and I’m constantly amazed at the shock when I explain what’s going on physically with my husband due to this disease.

We discovered his diagnosis simply due to slurring of words. Essentially it began in his tongue, causing weakness and restricting movement causing his words to be more slurred or mumbled. He has to eat slower because it takes longer to move food. Little things like chewing gum isn’t an option anymore. He can’t whistle.

He also has had twitching (or fasciculation) in his upper lip which has caused some changes in his smile and capability to tightly close his lips.

He doesn’t feel like he is any weaker at this point, however, he does have the  muscle twitches throughout his arms, legs and chest with it more heavily affecting the left side of his body. Muscle twitches or fasciculation are a symptom of nerve death.

He feels more out of breath despite his lung test coming back normal, but that may be due to muscle loss, basically causing him to be more out of shape. People with ALS lose muscle mass quickly.

He also occasionally chokes on water or has it go down the wrong tube. This could be due to his tongue not moving correctly or it’s possible his swallowing is starting to be affected. His swallow study in November will help us determine what exactly is happening. 

He is also a little bit affected by Pseudo Bulbar palsy. This is something often caused in Bulbar ALS as it’s a similar part of the brain caused by brainstem damage. It can cause emotional lability. What does this look like? He laughs more. He can’t get to the end of a joke without laughing. Our daughter cracks him up more. Essentially he has lost his capability to maintain his composure in regards to laughing a little bit. It’s not very noticeable.