If I said every day was great and sunny in my life, I’d be lying. The simple fact is that some days are cloudy. It doesn’t matter if it’s sunny, raining, hot or cold; if you are having trouble your day will be cloudy and that’s alright. What you do during that time is what matters the most. Last month my friend Mike and I were brainstorming ideas for the blog as we often do when he visits. Ironically, another friend posted the below shortly after. I thought it fit perfectly with a topic Mike and I had discussed, and I connected with it as soon as I read it. “A lake or a puddle? It's actually ..read more

The first time I went a circus I was 12, and I will never forget it. Ringling Brothers and Barnum & Baileys Three Ring Circus with all the animals, acrobatic acts, and clowns. I would have to say, that like most kids going to a circus, that was the day I wanted to join the circus myself. Fast forward to high school where I was crushing my GPA of 1. something, I started looking into my options. My future was bright with offers from several Ivy League schools, Military Academies, and a little know college in Florida the Ringling Bros. and Barnum & Bailey Clown College. Hahaha Yeah Right ..read more

Over the last two years writing my blog I have met wonderful people who have all helped me in many ways. This post I want to highlight a few PALS who also use social media to tell their ALS stories. While there are organizations who have blogs showcasing other PALS. They are like eating a plain hamburger it’s good, but personal blogs add that spicy special sauce making you want more. Steve Witt Steve was diagnosed with ALS in May 2022.  Steve writes a monthly blog “No leg to stand on“. His blog brings humor and the special sauce needed in our fight against ALS. I am sure if you ask he ..read more

“The Bush of Life” Chapter 75 When I was six years old, my mother left my dad and five kids ranging from 6-18 for another man. We didn’t have a lot of money then since dad was the sole financial supporter of the family. Back in the 1970’s, men went to work and the wives were still taking care of the kids. So when it was just dad and my brothers, there were many times when I only had one meal during the day. Many times I would have to fend for myself anyway I could. One day, while walking to school by myself (which was normal for me because dad was at work and my brothers were doing their own ..read more

“Please cover my arms I am cold,” Darius said in his digital voice coming out of the Tobi Dynavox. Darius is the voice I chose to use out of 10 or so options available when using the Tobi, my eye gaze system. Since losing my own voice, my BFF Darius has been helping me out. If I were to imagine what he looks like, I would say he’s a 6 foot, well built, black man from NY. He hardly ever shows any personality, and is very monotone when he speaks. You know the type, the teacher who puts you to sleep within 5 minutes. I have been working on his dad jokes, but his timing sucks. Nevertheless, I neve ..read more

What have you done for yourself lately? It’s important to allow yourself time/things too. It is very easy to get caught up in our lives and to forget prioritizing yourself. This is especially true for caregivers and single parents. A friend of mine sent me a flyer from ALS.org (shout out) with a variety of classes, and I signed up for two writing classes as a little gift for myself. I NEVER particularly liked writing or did well in English classes. In high school I took English 8 times just to graduate. I failed English class in 9th grade and then had to take it again at the same time as also ..read more

Have you ever prayed to God and wondered if he hears you? Has he ever answered your prayers? Has he ever not answered your prayers? When you pray and He answers your prayers, I’m sure you are grateful, but do you get mad at God when your prayers are not answered? Or maybe you don’t believe there’s a God in the first place. Looking around, you see death, hate, crime, disease, etc and wonder how could there be? I get it, and you may have a point. For me, though, God has been answering my prayers all my life... I just didn’t always see it. As I wrote in chapter 21, my relationship with God hasn’t ..read more

Do you appreciate the little things? Or do you focus on the trophies on the wall? Beginning a little over a month ago, a bird started visit us every night around dusk, and he sleeps in our window box feeder. Every morning at dawn she leaves for the day. I looked up native birds and believe it is a female Carolina Wren. We named her Steiny - short for Einstein -because she is so smart to find a safe place to sleep every night. She falls asleep and we don’t even bother her while watching tv and moving around. Steiny got me thinking about how special it is to have a little visitor every day, and ..read more

I love that I'm still able to still help others. Just because I am living with ALS and can’t wipe my own ass doesn’t mean I am not capable of still helping. “Ask me anything" is one way I can. Your questions allow me to have open conversations, even from afar, hopefully making you more comfortable with ALS. For this week, I am answering questions I received over the last couple of weeks. The answers detail my peraonal journey. Yours might be different, nevertheless, I hope my honesty helps. How do you want people to treat you and what should they say or not say? Recently I have had multiple f ..read more

Have you ever had a dream within a dream within a dream? I have been having a lot of dreams lately where I see myself moving my arms and legs. I can almost feel my hands moving, and then I wake up and see my body still in its place. Recently one dream went a step further to the third level - next level dreams. I dreamed that Laura and I were sleeping in our room when our friend Denise walked in, surprising us with a visit. Laura jumped out of bed and gave her a big hug as they jumped around like little girls screaming with excitement. I was laying in my bed thinking, "where is my hug and why ..read more