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…

TJ&O

Disparities between Our ALS

Living with ALS:

Disparities between pALS (Person with ALS)

If you only knew how many variations of ALS there are. Not types or distinct versions, but manifestations. From onset to the final moments. Yes there is a constellation of symptoms everyone shares. However each one person manifests their own spark of light, their own symptoms. If each were a distinct color there would be a spectrum so large that you can’t even imagine it. It’s maddening to see one pALS deteriorate aggressively yet others remain with a single physical deficiency for years, eventually though ALS progresses for everyone.

I personally know this all too well, having lost friends all too quickly as I progress at a modest pace. I am both grateful and deeply saddened by this. I have connected with pALS from around the globe who have been living with ALS/MND for many years. This lends credence to the randomness of this disease. Five years from diagnosis and possibly six and a half of symptoms I can:

Still stand & walk with assistance
Eat a normal diet
Speak
Breath without mechanical assistance
Have limited use of my hands (every post with one finger)
Act like a fool (per my wife)

Each one of us simply tries to hang on one more day, one more moment. In the end moments are all we have, all of us, ALS or not.

Enjoy every moment with your loved ones.

Resilience

Truth behind the strength and resilience of persons living with ALS.

You have read time and time again from me and many others how strong ALS patients are. There is truth behind this. But where does that strength come from?

Are ALS patients just wired differently? I venture to say no, we are not. We simply choose this outward affect for several reasons, let me remind you these are my thoughts.

For me the reasons are: Anger, Fear, Resentment, Obstinacy and a slew of many other feelings and emotions.

Anger because I don’t deserve this, neither does anyone else. This is a dreadfull way to live, knowing there is nothing you or your loved ones can do. Angry because my wife, kids and parents don’t deserve to live with a ticking time bomb that is ALS. Angry because so many organizations have the ability to make drastic impacts on ALS, yet money, politics and outdated health care policies stymie progress.

Fear, because, well it obvious; because its scarry as shit to live with ALS. Im afraid of waking up trapped in my body. Afraid of leaving my family with a gaping hole in their hearts. Scared as hell of struggling for every breath as my condition progresses. Scared that a cure or viable treatment won’t hapen in my lifetime.

Resentment, because anger and fear create it. I accept my condition but I resent it. I resent the physical limitations even though my mind is in tact. I want to do but simply can’t command my body to do so. I resent becoming a burden. I resent that my family resents me, well not me but my ALS.

Obstinacy, why this? Because I have learned that ALS has caused my stubbornness to surface. And I will sure as hell not let ALS dictate our lives, influence yes, but not dictate! I will try every therapy availed to me to kick ALS’s Ass.

Yeah we pALS may come across as hyper-resilient, but as you can see theres a fire fueled by so many internal factors. Factors that create the outward appearance that we are unstoppable. Just know and understand that although our outward affect is strength we still need You and your support, we draw courage from it.

Stay strong my friends…

The Juan and Only