ALS Feels Like…

What does ALS feel like? Let me see if I can put it into words…

Hands, have you ever carried a heavy item and when you put it down your fingers won’t move, they are stiff. After a moment they return to normal. Well for me they don’t, they remain stiff and unresponsive. They are also very weak, can’t grasp or lift a tissue.

Legs, when they aren’t cramping they are weak and while walking they don’t respond to my desired requests. They actually feel as though I have 100 pound ankle weights strapped to each leg. My knees and anklets give out from time to time risking a fall.

Eating, first off it is unavoidable that ALS takes the ability to swallow, however it begins with the tongue. You see the tongue becomes unresponsive and difficult to control. At this point imagine getting anesthesia in your mouth and your tongue is affected. In essence manipulation of food is challenging. This makes it difficult to move food away from the back of your throat causing frequent gagging. Now the epiglotis, the flap that separates your airway from your esophagus, well it starts to falter, allowing food to remain at the opening. This causes repeated swallowing and can lead to coughing and choking.

Laryngeal spasms, has your dog ever sounded like they are about to hack up a furr ball? Thats a spasm. In a person its sounds very scary. Imagine getting the wind knocked out of you, when you try and take a breath you cant… thats what it sounds like. It scares my family every time.

Neck, many ALS patients lose muscle strength and tone in the neck as it progresses, thus needing neck braces or head restraints. Imagin having a 50 pound weight on your head, eventually you can’t hold your head up. Many patients can’t hold their heads up so it look like they are looking down constantly.

Breathing, simply put, try this at home. Gather the following: large shake straw, regular straw and a coffee stirrer. Now try this, take a normal healthy breath, now repeat breathing through each straw. You have just simulated progressive respiratory decline in an ALS patients. Now don’t panic and catch your breath.

Last exercise; now find a a busy location in your home, sit in a chair and don’t move, think of your favorite drink or snack. Now without speaking or moving communicate to your family that you would like that drink or snack.

This is what ALS feels like…


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