LIVING with ALS: Celebrating In Dependence Day

One of the hardest things about LIVING with ALS is the loss of independence. You become dependent on everyone else to do things for you that you used to do on your own. Before my ALS progression, I used to be very independent. If I wanted to do something, I usually did it. Now I am dependent on others for everything! Losing your independence sucks! But I’m #grateful to be ALIVE!

Losing your independence is gut wrenching. Imagine no longer being able to drive. You can’t go to the store or get a bite to eat at your favorite restaurant. I must have someone drive for me, usually that’s Carol in the Big Ass Van. I have to have someone else sit with me in the back of the van in case I need to cough, or something else I need, or in case of an emergency. Losing your independence sucks! But I’m #grateful to be ALIVE!

I have to have someone dress me daily. Imagine no longer being able to brush your teeth or shave. I can no longer shower myself. It takes 2 people to safely shower me (usually Carol and a caregiver). Don’t get me started on going to the bathroom (either #1 or #2), I must have someone help me with that too. The loss of privacy and dignity takes a toll on me. Losing your independence sucks! But I’m #grateful to be ALIVE!

Someone has to feed me 4 times per day (I have a figure to maintain). I have to get hydration whether it’s water or beer, after all I’m a BEER MAN! Just think about not being able to go to the refrigerator and get your favorite beverage. Or go to the pantry and get your favorite snack. Losing your independence sucks! But I’m #grateful to be ALIVE!

I must depend on others to change the TV channel for me. Because I can no longer control the remote. I have to ask someone to turn the lights on or off. I do have some technology that allows me to control the TV, lights, and even the shades from my computer. At least I have something I can control! Losing your independence sucks! But I’m #grateful to be ALIVE!

It takes 2 people to safely move me from the bed to my chair during the day. Once I’m in my recliner I generally don’t move anymore until bedtime. Because it’s too difficult on Carol and the caregiver. I’d like to go outside more or just go out more, but that too is difficult to safely move a 6’ 8“tall, 285-pound guy around! Losing your independence sucks! But I’m #grateful to be ALIVE!

Don’t get me wrong, I have the best caregivers in the world, including my primary caregiver and the love of my life, Carol! I appreciate everything they do for me! I love them all! They have become family to me and Carol. But I would like to have some of my independence back. Losing your independence sucks! But I’m #grateful to be ALIVE!

Despite losing my independence, I’m #grateful to be ALIVE! I’m #grateful that I have great friends and family who surround us with love and support. I’m #grateful for my caregivers, Bernadine, Alicia, Erica, and Regina who give me so much love and take great care of me! They are truly the best in the world at what they do! They are truly a gift from God! I am a very blessed man.

Be #grateful for what you do have. You might lose it tomorrow. John Wooden once said, “do not let what you can’t do interfere with what you can do”. I think that’s an important lesson for all of us.

What are you #grateful for?

#maketodayyourbestday #EndALS #FaithoverFear #grateful

LIVING with ALS: Losing my Senses

We learned in elementary school that the human body has 5 senses: touch, smell, taste, vision, and hearing. In this ravaged ALS body of mine, I have lost the first three senses: ability to touch, smell, and taste. Allow me to explain.

When my body lost the ability to move any muscle, the arms, hands, and legs were the first to go. Accompanied by the loss of my ability to touch. Even if I wanted to, I could no longer touch something like a basketball, pet the dogs, or the typical things we do when we touch something. I took those things for granted, until I lost the ability to touch. Oh, I can still feel it when someone touches me. I can still feel pain. But what I really miss the most is my ability to show affection. Like holding hands with Carol. Like hugging Carol or kissing Carol. I can still feel all those things, but Carol must initiate it.

I got my feeding tube in 2020 because I could no longer swallow. I lost my sense of taste. Then I got my trach and had to breathe through a tube in my throat. One of the side effects from not being able to breathe through my nose is I lost my sense of smell.

Losing my sense of smell was a big loss for me. I don’t miss the bad smelling stuff. Like skunk smell, picking up dog poop (or even smelling my own poop), or taking out the garbage on a hot day. There are a lot of bad smells I don’t miss.

But I do miss the smell of Carol’s cooking. I miss the smell of a good hamburger or a juicy steak cooking on the grill. I miss the smell of movie popcorn or the smell of chocolate chip cookies or brownies baking. I miss the smell of barbecue. There are a lot of smells I do miss.

My ability to taste things was a HUGE loss for me. I can’t taste Hershey’s chocolate almond bar anymore. I miss the taste of Peanut M&M’s or a Payday Bar. I can’t eat a Chik Fil A sandwich (or their waffle fries) anymore. I miss tasting McDonald’s French fries, Quarter Pounder with cheese, or an Egg McMuffin. I miss the taste of a Wendy’s Baconator. I can’t eat a juicy 16oz ribeye at Ruth Chris or Little Alley Steak anymore. I miss tasting Jelly Bellies. Come to think of it, this is maybe why I ballooned up to 355 pounds!

The restaurant ads on TV are torture for someone who can’t taste! Have you seen the ad for Chili’s 3 for $10 deal, where you get chips & salsa, a hamburger, and a Diet Coke? It causes my mouth to water every time I see the commercial. What I wouldn’t give for just one taste of their chips & salsa or for the baby back ribs! Don’t get me started on the Papa John‘s commercials. I like Shaq, but come on, really!

But what I miss the most is the taste of an ice-cold beer! After all, I’m a Beer Man at heart! Oh, I can still drink beer. I just have to funnel it! Who would have ever thought that the funneling skills I learned at Auburn would come in so handy!

Now I’m stuck with eating Real Food Blends through my feeding tube. Many of the things I wouldn’t have eaten ever before my ALS diagnosis. Things like salmon, kale, broccoli, and others I would not have eaten. If it came out of the water, I didn’t eat it! Now I eat those things 4 times per day!

I don’t want to lose my other two senses, hearing, and vision. Losing 60% of my senses is ENOUGH! When I embarked on this ALS journey, I didn’t realize I would lose any of my senses, but here we are. Never take for granted your God given senses the human body provides. Once they are gone, they are gone! I didn’t understand that. Maybe I would have appreciated them more when I had the chance. Maybe I should have smelled the coffee a little more (even though I don’t like coffee)!

#maketodayyourbestday #EndALS #FaithoverFear