About us

I’ve written this whole page using my Tobii Dynavox eye gaze device, selecting one letter at a time by gazing at that letter with both eyes. Painfully slow and even more annoying because my brain is still at 100% speed, so I have to change the way I think, write and tell stories. I wanted to start with that because I want you to know how important this is to me.

It’s very hard for me to write about ALS, but not for the obvious reasons. I am totally comfortable talking about my disease and the thought of death doesn’t bother or scare me. It was only hard because I want to give an accurate overview of this disease while also telling the story of my journey. It’s so hard to watch news stories or Hollywood depictions of this disease because they never capture the essence of the struggle nor do they focus on what a team effort it is. The Pride of the Yankees is the life story of Lou Gehrig, who this disease is named after and one of the best baseball players of all-time. Anyway, it does nothing to educate about ALS. The last 15 minutes have a couple scenes where he struggles, most memorable for me was when he falls over on his face in the locker room while attempting to tie his shoe, but they never explain anything. But it’s a movie about his life story and it was made in the 40’s when not much was known about the disease, so I understand. More recently, Eric Dane, McSteamy from Grey’s Anatomy, who had just gone public with his diagnosis of ALS, had a golden opportunity to educate the world about our disease when he guest starred on an episode of Brilliant Minds; but the writers totally blew it! Basically he is shown sitting on a recliner having nightmares, sitting in the doctors office trying to avoid talking about the disease, or at the firehouse sitting and talking. The end shows him starting to bank his voice and moving back in with his estranged family. I have ALS so I picked up on a couple things that were implied, but overall, the show did absolutely nothing to show the disease or educate the public about it at all. I was so disappointed. No one understands ALS largely because we die too quickly and have no happy endings to share. Think about it, you probably know a cancer survivor but no one knows an ALS survivor. Take Andrew McMahon for example. He survived cancer in his early 20’s and has spent the last 20 years raising awareness and fundraising for his Dear Jack program. They do amazing things! Check them out and get registered to become a bone marrow donor. Anyway, Eric Dane could have been a great ambassador for ALS education but he died less than a year after making his diagnosis public. I wish he would have been shown in a powered wheelchair, speaking through an eye gaze device while on some form of breathing support. He had the star power to make a difference but was gone less than three years after symptom onset due to respiratory failure. The ice bucket challenge was very popular, but did anyone learn about the disease and how it actually works? There is very little funding for research partially because of the lack of awareness. Trump has proposed devastating cuts to ALS for 2027 that would significantly reduce funding and end some promising research.

A couple quick notes:
Yes, I can feel everything. And hear everything. And my brain will always have 100% function.

What you need to know about ALS. I’m cold all the time because muscles keep you warm and mine are dying.

I have no way to release emotions. I can’t cheer for my team, sing along or applaud at a concert, say “ouch” if I get hurt, or any other vocal or physical reaction I used to take for granted.

With that, let’s get started on my ALS journey.

ALS overview. ALS basically breaks the motor neurons, so your brain can’t communicate properly to your muscles. This results in fasciculations (involuntary muscle movements) while preventing you from moving what you want. Eventually your muscles atrophy and become useless. This kills your diaphragm, and you die from not being able to breathe.

ALS is wild and impacts everyone differently. For example, my friend Thomas has had ALS the same amount of time as me, but he lost his ability to stand long ago but can still talk. He also can’t bend his fingers; they are frozen straight. I’m the exact opposite. My fingers curl up and need help to be put straight. I still stand once a day, but my voice is gone. No one knows how this disease works, what causes it, or how to treat it. A couple things may have influenced it though. On September 30, 2023. I was stopped in traffic on the expressway in my tiny convertible when I was rear-ended by a Chrysler 300 and sandwiched into a GMC Terrain. My life flashed before my eyes, but I was fine – or so I thought – except for whiplash. Later, my doctors would attribute the trauma from this accident to accelerating my ALS. I also had several concussions and a severe neck injury that could have influenced my ALS. They did a study of 86 ALS brains and 68 had a history of concussions. But millions of concussions happen each year and there are only 5,000 ALS cases per year, so who knows, but I’ll always wonder.

Here are a few examples to help you understand ALS:
Muscles. It’s a very delicate balance. If I do nothing, my muscles will atrophy and die. But worse, if I work them too hard, they will be gone even faster. So every day is a balancing act trying to do enough to maintain my muscles for as long as possible, without ever overdoing it.

Itchy. I’m not able to move my limbs or fingers at all. So if I have an itch, I have to ask for help using my eye gaze device since my voice is gone. I am always itchy and only ask for help 30% of the time.

Fingers and feet. They bother me every second of every day. I haven’t been comfortable in two years. I am constantly asking Stephy to adjust my fingers and feet. I have to sleep with special boots and gloves to get some comfort and avoid pressure sores.

Sleep. Speaking of sleep, it’s nearly impossible. I never nap but still have issues sleeping at night. If I get upset after 8pm, I will sleep an hour or two at best. And that is with 30mg of Temazepam, 20mg of THC, and 20mg of CBD. Most nights, Stephy Poo and Mama keep me very calm, and I can sleep for six or seven hours. But on the nights I don’t sleep, it’s weird because I don’t feel tired and am not tired the next day.

Early on, I decided to keep my diagnosis a secret. Two main reasons: First, our GM contact was up for review, and I couldn’t risk my illness causing my team to lose the business. Amanda, Allison, and I worked way too hard to let anything happen. Second, I wanted my mind completely focused on fighting, preparing, and understanding my rate of progression, all of which took time. For months, only my parents, the Holloway family, and Sydney knew. I even told my parents not to tell close family members. I hope all of you understand this decision. While it was hard on all of us, I have zero regrets and would make the same exact decision again. I waited until December 8, 2024 to make a public announcement. By that time, I knew what my progression timeline was, and I had done all I could to be ready for this fight.

My symptoms started in the fall of ’23. I first noticed that I would occasionally stub my toe when walking the dogs. Eventually I would stumble a bit, then fall once in a while, and I started to notice balance issues similar to being drunk. One weird incident occurred on December 16, when Char Stopka came to town to celebrate her 18th birthday. We decided to take her and her girlfriend Sierra roller skating. Now, I hadn’t roller skated in years, but I had played high level roller hockey, so it shouldn’t have been an issue. But it was. I fell down as soon as I stood up on my skates. I had balance issues all night, and I remember telling Sydney something was wrong, and I was scared. We brushed it off to me being clumsy and tried to make it the best birthday we could for Char. Then, on Saturday, January 13, 2024, while playing volleyball in Novi, I bent down to tie my shoe. And I fell on my face. And in that moment, I knew something was seriously wrong. I immediately went to my primary care doctor, who brushed it off saying it was probably an old hockey injury and to check back with him in six months. After a few weeks, I had a noticeable foot drag and was falling more frequently, so I scheduled a follow-up. This time he recommended that I see a physical therapist for a neck massage. It took a few weeks to get all this done, so we’re in late March now. I went in for my evaluation and could tell right away they thought it was serious. At the end of my visit, they recommend that I see a neurologist ASAP, which I did. He couldn’t find anything wrong and said to come back in six months. I was now using a cane and seeing PT weekly to track my progress. As symptoms got worse, I demanded another neurologist exam with Ken Botessi. He diagnosed me with cervical spondylosis and said to check back in six months, but Sydney demanded he do something, so he said to go to a spinal surgeon he knew. On Friday, May 24, 2024, I met with the surgeon, and within five minutes, he said I most likely had Motor Neuron Disease. I had no idea what that was, but it sounded bad. I called mom from my car crying hysterically and tried to tell her what was wrong, but I was crying too hard. I ended up driving straight to the parents’ house and telling them the news. I vividly remember saying “it was supposed to be my neck” and them both comforting me, though we still didn’t understand the severity of the situation. I had no time to dwell or research though, as I needed to pack up and head to Aaron’s cottage where I’d spend the long Memorial Day weekend.

Josette and I arrived and had a great afternoon eating pigs in a blanket, drinking my favorite drink, and enjoying time with our second family. It was a packed house, and we were all in the living room laughing and having the best time! And then I received an email from the doctor with my visit follow-up notes. I opened it and Googled the words… and in that moment realized I had ALS and probably had less than three years to live. I looked at Josette, wondering who would take care of her and my parents when I was gone, and I completely broke down, right there in front of everyone. Aaron, Lindy and I went in the back room where I explained what was happening. They were perfect in listening and comforting me. They truly are the best friends I could ask for and am so lucky to have had them in my life. We had been friends for nearly twenty years and shared so many great memories together. Since my divorce in 2019, Josette and I spent nearly every weekend with them and loved every second. Aaron and I would work on DIY house projects during the day and play video games with his son at night, Lindy would make us delicious treats, and then Lindy and I would wake up early Sunday morning and make everyone crepes, a skill I learned after my trip to France. Anyway, it was a tough weekend, but something good did come out of it; Aaron and I created a game called Country Music Bingo! Basically you get a bingo card filled with country music video clichés (think double denim, casual camo, porch crooning, etc) and then put on the country video channel and just watch until someone gets bingo. The irony here is that neither of us like country music, we had just put it on to get a laugh during a difficult time. We went on to play that game often.

Anyway, back to my journey. In June, I finally went to the ALS clinic at Henry Ford where I met Dr. Arcilia-Londono, the head of Neurology and the ALS clinic. I bought a walker for that appointment, knowing it would be a long walk (Aaron named it Walker, Texas Ranger), and it could even be converted to a wheelchair mode if I got tired. That day, she verbally diagnosed me with ALS, pending follow-up tests in July. I already knew in my heart it was ALS, so it wasn’t too upsetting. Actually, it was a relief just to finally have an answer and know exactly what was wrong. That first week of June, I had given myself a couple days to cry my eyes out and grieve, but after that, I just wanted to get to work preparing for what was coming. I had already researched and knew everything that was coming. I had a moment of clarity where all my project manager instincts kicked in, and I had never been so motivated in my life. We’ll get back to that, but while meeting with the doctor I asked for recommendations on support groups and contractors. She deferred to the ALS Association for both, but Donna, the ALS Association rep, said she couldn’t share either with me until I was officially diagnosed. So I would lose a full month due to bullshit red tape. Let me tell you a few stories about timing frustrations with ALS.

Back in April, my PT recommended an AFO device for my right foot to help correct my stride. We met with a rep right away that put an order in with Wright & Phillipis. I received the device in July, by which point I was having significant issues with walking and was reliant on my walker. Also, I was starting to lose fine motor skills in my hands, so getting the device on my foot was a real challenge. Had I received it in May, it might have extended my ability to walk, but by the time I received the device, it wasn’t much help.

On average, life expectancy with ALS is three years from diagnosis, so three months seems like a lifetime. But waiting three months would become a trend, unfortunately. I was losing my ability to use my hands, and therefore my phone and computer. In the spring of 2025, I worked with my speech therapist at Recovery Project on getting a device that would allow me to use my eyes to navigate a Tobii Dynavox, the very device I am using to write this book for you. But first, I had to do a three month trial with a demo device, meaning I would lose three months of programming my permanent device and be delayed in uploading my personal voice. You see, back in July of 2024, I was told to bank my voice immediately using a program called Acapela. I sat and recorded 250 phrases like “how’s she goin eh?,” “fuck that,” and “love you mama!” I then had to read hundreds of prepared sentences which they used to create a digital voice for me. It sounds a bit robotic but does the job, and those phrases I recorded are actual recordings and sound perfect.

As I mentioned above, my instincts kicked in, and I prepared everything for what was coming. I hired a contractor in August to put in automatic, Alexa voice operated 36″ doors, a fully handicap bathroom with a roll-in shower, automatic lifts that work like an elevator, and the same doors and lifts at the parents’ house. I also installed Alexa light bulbs and a smart thermostat so I could control everything with my voice. All projects were completed in the last week of October, which was good because that is the week I lost my ability to walk. Good thing I didn’t listen to anyone who was telling me not to stress myself out and take my time with these projects. With ALS, you need to be months in advance with everything, or you won’t have the help you need when you need it.

Even now, as I am writing, I have been waiting over three months for new armrests that will support my hands, a new cushion to relieve pressure on my tailbone, a new headrest to prevent my head from falling off the sides, and caregiver controls so Stephy can drive my wheelchair from behind. I critically needed those things when I ordered them, and we are having major issues because of the delay.

I also need to move every part of my body every two hours to avoid pressure sores. I now have an app allowing me to adjust my leg rest, chair tilt, and backrest on my own. But Stephy still has to adjust my feet and arms often as gravity does its thing every time I adjust. I’m constantly paranoid about pressure wounds and often have to wake her up at night to move something to relieve pressure.

The hospital bed. For six excruciating months, I was in pure misery in this bed. I needed help to get in and was then trapped in there for ten hours until my caregivers arrived in the morning. I was never comfortable and often only slept for four hours. I couldn’t adjust my shirt, the sheet under me, nor could I have a sheet on me. After a few late night scares, Stephy moved in so she would be close in case of an emergency. Then, in March, thanks to my Aunt Jan, Jessi, and Thomas Brittingham, I was able to get a Freedom Bed! This bed absolutely changed my life. It is super comfortable and turns me every hour. Immediately, I started sleeping through the night and felt so much better. That also meant that I wouldn’t require a caregiver to turn me every two hours, which would have been miserable for all involved. If you know anyone with mobility issues, I highly recommend.

The CEO of ePrize, Josh Linkner, was a phenomenal motivational speaker. He once told a story about the power of belief. Let’s have Google retell: For decades, experts deemed running a mile in under 4 minutes physically impossible, believing it would cause the human body to collapse. In 1954, Roger Bannister shattered this mental and physical barrier, running 3: 59.4, proving it was possible, which led to many others breaking the record soon after. Proving the power of belief. But sitting on your ass, full of belief doesn’t get you a four minute mile. No, you need to have incredible work ethic as well, and lucky for me, my dad was the hardest working man I ever met, and he instilled his work ethic in me. For most of my life I got through challenges with hard work. I was willing to make any sacrifice to achieve my goal. No amount of work was too much. Until now. The worst thing about this disease is that it is like quicksand in that the harder you work/fight, the quicker it takes you. It’s very frustrating. So I’m left with belief. But blind belief can be dangerous too as it can become delusion. I always equate it to the lottery, an example my dad always shared with me. Buying a lotto ticket once in a while is fun, but buying one every week isn’t ideal. You would be better off investing that money. And my extreme example is someone quitting their job because they truly believe they will win the lottery. So I choose to do everything I can, every day, to give me the best chance, but I understand the odds I’m up against. Just like the lottery, I am hoping for the best, but I stay rooted in reality.

I think my brain is in full protect mode, because I don’t miss anything I have lost. For example, I haven’t eaten or drank anything by mouth since September 29, 2025, and I don’t miss eating or drinking at all. Which is odd to me because I fucking loved food! Same goes with walking, running, sports, etc. I cherish the memories but don’t miss any of it. People can eat or drink anything in front of me, and it doesn’t bother me at all. And I know I am one infection away from probable death, but I’m not scared or depressed. I currently spend 14 hours a day hooked up to a ventilator, and I know that will only increase until I am completely dependent on it to breathe, but that doesn’t bother me. The other day the doctors said I have months to live, and my only thought was how many trips can I fit in before I’m gone. But the doctors say that, as my condition worsens, it will become extremely painful to breathe; I will require morphine all day to make it bearable, so I know the clock is ticking on my ability to write and spend meaningful time with those I love. In good news, I will likely die in my sleep one night, with Stephy and mom beside me. But it will, I assume, make falling asleep a bit scary towards the end. And the worst part of it all is that I will probably die in mom’s house, where my dad passed away a few months ago. She shouldn’t have to go through that, but so it goes. I spend every available second with mom and Stephy, making sure we have as many smiles as we can while I’m still here.

My saliva is now the only thing I swallow, and every time I swallow, I am paranoid. I focus on doing it correctly because I don’t want it going down the wrong pipe, which could lead to a life-threatening case of pneumonia. When a healthy person swallows down the wrong pipe, they simply cough a little and are all good. I, however, can’t cough and use a machine twice a day to assist me in coughing secretions out of my lungs. I got pneumonia twice in the summer of ’25 from swallowing food or drink incorrectly, and the doctors warned me that one more case of pneumonia, and I would need to have an emergency tracheostomy. And that I could die. When you swallow, there aren’t two pipes; it’s a single pipe with a flap that opens and closes when you swallow. Because ALS impacts all muscles, my flap misfires more than usual. So yeah, every time I swallow, I’m paranoid. And right now I am lucky to still be able to swallow. Those muscles will die eventually, and I will need to be suctioned whenever saliva builds up. Scary stuff.

I’m still me, but man, ALS tries to steal everything from you. I wrote my Australia Shutterfly book last month, using my eyes only, and it reminded me how much I loved food, walking, hiking, SCUBA diving, driving, meeting new people, and having random solo adventures. ALS has stolen my ability to do all those things, and so much more. But with each thing that I lose I don’t get depressed, I just appreciate what I still can do so much more. The hardest part for me has been losing my ability to talk and even write. You all know I talked too much and loved to tell detailed stories. So often I want to say something, but every word is a struggle, and no one understands my voice anyway. And typing letter by letter with your eyes takes way too long to have any meaningful conversation. I was almost able to get a NeuroLink brain chip that would have allowed me to communicate using my thoughts, but my breathing wasn’t strong enough to handle the surgery. It would have allowed me to play trivia and participate in normal conversations, which would have been life-changing.

No one can do this journey alone. I have the best supporting team ever! I love them all so much! And my career forced me to be a proactive rock star. Even with all that, every day is a challenge.

But the biggest thanks goes to the four people seen above. We’ll start with my best friends for twenty years now, Aaron and Lindy Holloway, for everything they do for me. They are also managing my estate, so if you have questions about me, reach out to them. And Patty Kinney who comes over twice a week to give me my B12 shots and often brought home-cooked meals with her when I could still eat.

But Stephy Poo, as I call her, is the main reason I make it through each day, and I love her deeply. I only feel safe and comfortable when she is by my side. Lucky for me, she has put her life on hold to spend every minute with me. I cannot overstate how wonderful she is. She brings so much joy and laughter each day. She has shown me unconditional love at a level I never thought possible. If I am one of the lucky few to experience a reversal of symptoms, which less than 70 people have in history, I plan to marry this girl and spend the rest of my life showing her the world and reminding her every day how special she is and how much she impacted my life for the better in my darkest hour. She is a neverending source of positive energy, like Rose in the Golden Girls. And yes, I owe her a million back scratches! Haha.

Side note, Stephy has overcome so much to become the strong, independent woman you see today. Despite an oppressive upbringing, she remains pure, kind, and optimistic. She is truly amazing!

Stephy Poo, you are my Rose and truly are, like our favorite Sammy Kershaw song, the Love of my Life!

I am now fully on long-term disability (LTD) and social security disability. But I was heartbroken to discover that I only get $300 a month from LTD. I was counting on some percentage of my salary AND social security. That wouldn’t be enough to cover my expenses, but close enough that I wouldn’t struggle too hard. But apparently the social security counts towards what my employer covers for LTD, so I am left with very little of my previous income to live on each month. That doesn’t even cover one caregiver, not to mention all the other expenses associated with this disease.

Thanks so much for reading this far. I hope you have a better understanding of ALS, me, my journey, and why I am asking for money. If you decide to donate, I very much appreciate it. And if you don’t, that is cool too. Either way, please spread the word about ALS. That is the most important thing.