Gaming: How I play video games.

Hi everyone,

In this post I am going to talk about my favorite hobby, video games. I'll discuss how I play and the various hardware and software I use to make it all possible. Hopefully I can help some disabled gamers who have lost their ability to play.

Hardware and Software

- Tobii Eye Tracker

The Tobii Eye Tracker is what I use to move the cursor around. It's a sensor you attach to the computer monitor and connect to a USB port. The sensor reads your eye movements and translates it to move the cursor. You need to go through your occupational therapist or speech pathologist to get one of these. There are Eye-trackers on Amazon specifically for gaming which you can get but they don't come with the accessibility software.

- Sip-Puff switch

The Sip-Puff switch is used for mouse clicks. Basically you have a straw you put in your mouth and you sip on it to initiate a Left-mouse click and you puff your lips to initiate a Right-click. The Sip-Puff is a lot better than clicking with your thumb. This is another thing you need to go through your occupational therapist or speech pathologist to get. Unfortunately its not something you can get from Amazon.

- ComfortKeys Pro Onscreen Keyboard

This is a program that gives you a fully customizable keyboard on your Windows desktop. You can add or remove buttons to your preferences. I use it to navigate the game menus.

 

Link to the program.

https://www.comfortsoftware.com/on-screen-keyboard/

 

- AltController

This is probably the most important piece of software without this the other equipment is useless. Alt Controller is free Open Source software to help make computer games more accessible. It allows you to map computer inputs like mouse pointer movements to actions like key presses in order to create alternative controls. The program was created by Tim Brogdan. I used to use it only for racing games but in the years since I discovered this program, I've started using it for other kinds of games and have gotten pretty adept at creating profiles. How it works -

The different colored rectangles are the regions that are overlaid on the game/emulator screen. They don't show on the game screen unless you want them there. They don't have to look like this either the regions are fully remappable and you can customize them how ever see fit. How it works is if you move the cursor into the "Walk Forward" box your game character moves forward. If you move it into the "Walk Backward" box they move backward and so on and so fourth. Forward and Back can also be substituted as Accelerate and Brake for driving gamess. You also don't have to just dwell in the region either you can set it up so you have to hold down a switch or mouse button to activate the region. The mouse/switch buttons can also be assigned to different keyboard key presses. You can also create a custom window which acts as a tool/action bar that can be moved anywhere on your desktop and you can assign as many buttons as you want and like the regions the windowis fully customizable. Here's one of mine -

 

 

 

 

If you want to learn more about it please click the link below. You can also email the creator of the program, Tim Brogdan. The email is on the site. 

 

Link to the program.

https://altcontroller.net/

- Emulators

Last but not least, Console Emulators. Even with the AltController software, some PC games aren't going to work especially first-person shooters. I found a way around that by using Emulators, Currently there are working Emulators for every game system up to 7th generation consoles(PS3). Except for Xbox 360 which does work for some games but not as well as the Playstation 3.

  

My many surgeries and minor procedures.

Hi everyone,

 

Here's a list of medical procedures I had throughout my life.

Muscle Biopsy - 1983

I don't remember this one much because I was 2 years old. They did this to try and figure out what type of Muscular Dystrophy I possibly had. I just remember as a kid I had a scar on my shoulder. In the 80s, they didn't just take your blood to figure it out it was a little more complicated. The human genome hadn't been fully mapped out yet.

Muscle and Tendon release - 1988 

This is another one I only vaguely remember. I was 7 years old at the time and in first grade. I could still walk. With Duchenne Muscular Dystrophy your muscles deteriorate and your tendons atrophy(tighten up). They wanted to keep me walking as long as possible so they wanted to correct the atrophy before it got worse. I don't remember any pain after the operation so that was good but I was in full leg casts for a few weeks and immobilized the whole time.

Muscle Biopsy #2 - 1991

 

When I was 9, they wanted to do another Biopsy on me for reasons unknown. I guess they just wanted to be absolutely sure I had Duchenne MD. This one I remember like it was yesterday. They tried to give me an anesthetic to put me under to perform the procedure. It was taking too long for the doctor apparently. At one point it partially took affect where I was drowsy but could feel everything. My grandmother had to hold down a screaming, struggling, and terrified 7 year old while they cut into my leg and pulled out a piece of muscle. Eventually I lost consciousness due to pain. My grandmother was absolutely bullshit that they didn't make sure I was out before traumatizing me. If she knew she would have told them forget it and took me home.

Hamstring release surgery - 1995

 

When I was 13, the orthopedic doctor noticed my feet were starting to point downward and getting stuck in that position. He recommended operating on my feet and ankles to reset the tendons. The surgery was performed on April 15, 1995 in Boston. While I was in the OR, Timothy McVeigh parked a Ryder truck full of ammonium nitrate and diesel fuel in front of a federal building in Oklahoma City. He lit a fuse and walked away. The truck exploded with the force of 5,000 lbs of TNT killing 168 people and injuring hundreds more. I remember waking up and the hospital was running drills because of that. I also remember being in more pain than I have ever experienced in my life. Feet are extremely sensitive parts of your body so when they get cut open you definitely feel it. Despite how much pain it caused me the surgery was worth it because I can still wear shoes. I would do it again if I had to go back. There were a couple side effects that I could have done without though. First, it damaged some nerves in my feet which made them really sensitive and I'd jump out of my skin and it also numbed the sensation in the soles of my feet for years until my friend and I did that fun sensory activity. Second, and this a little embarrassing, before the surgery I never had smelly feet. They were usually pretty clean. After the surgery though, for years my feet were so fucking gross🤢. Thankfully I no longer have that problem. My feet are usually really clean... otherwise I never would have taken my shoes off to do my challenge with my friend. Anyway let's get off that subject.

Spinal fusion - 1997

 

I used to suffer from scoliosis which is a curvature of the spine and if it becomes too curved, it can cause issues with breathing. So when I was 15, I had an operation to correct the curvature which involves inserting a titanium rod into my back to pull the spine straighter. I still have the rod in me to this day. There was no pain or discomfort from the procedure surprisingly. I was out of school for 7 weeks to recover though which sucked. But again, it was worth it. I'm glad I had it done.

Spontaneous Lung Collapse - 2013

 

In 2013, I was 31 years old. Out of the blue on day, my right lung somehow became punctured and collapsed. We didn't know until the next day that something was wrong when I couldn't eat or drink anything and I was having a hard time breathing. I went to the hospital in Hyannis where they diagnosed the problem as a spontaneous Pneumothorax or a collapsed lung. This was a very simple procedure and I was awake for it. They had to insert a tube through my ribs to drain the fluid that builds up in the chest cavity when your lung collapses.  If they don't then the lung won't inflate. They numbed the area, cut a tiny incision, and slide the tube in between the ribs. I was in the hospital for 4 days and recovered 100% from it. 

Gastrointestinal tube insertion - 2014

 

I went over this in another blog post but I'll explain briefly. In 2014, when I was 32, I had problems getting nutrition due to the DMD. I was sick for a couple months and ended up in a Boston ICU. I was told that the only way I was going to survive was to get a G-tube to help give me the nutrition I needed. After a little convincing I decided to have the procedure. It took about 45 minutes to put it in. The use an endoscope which they put down your throat with the G-tube tied to it. Then they push it through the stomach wall. Simple! It's another one worth getting and I'm glad I did it.

Tracheostomy - 2018

 

This is another I already discussed but will briefly explain it. When I turned 37, I had a respiratory failure that nearly killed me the night of my birthday. When I woke up I was given a decision to either let nature take its course or get a Tracheostomy. I chose to live and got the Trach! It was life changing for sure but I am so glad I made the decision. 

IVC Filter implantation - 2021

 

In 2021 when I was 39, I awoke to blood coming out of my trachea and my nose. We had to call 911 and rush me to the ER in Hyannis. Thankfully the bleeding stopped before the ambulance arrived but we had to make sure there wasn't a problem. I was airlifted to Boston and had all kinds of tests done as well as CT scans. They couldn't figure out what caused it for sure but they figured it was likely a blood clot. I had an IVC filter placed in one of my main arteries which is designed to catch clots before they get to your heart. It was a 15 minute procedure which I was under anesthesia for. The good thing about the filter is I no longer have to be using blood thinners like Eliquis. I don't have to worry about clots anymore either.

Finally, Gallbladder removal - 2021

 

Two weeks after the IVC placement, I was back in Boston. I started having stomach pains and feeling like shit. I thought it was gas however it was intensifying every hour. I went to Cape Cod Hospital in Hyannis and was diagnosed with a Gallbladder attack. They admitted me 17 hours later... They wanted to do a procedure with the endoscope to try and remove the gall stones but they couldn't get the scope down my throat. Eventually they sent me up to Boston yet again. After a couple days I was given the option to go home without doing anything but I probably would be back in a couple months. Or I could have the Gallbladder taken out. I wasn't coming back lol. I decided to remove the Gallbladder and again I'm happy I did. I'm doing just fine without it!

So those are all the operations I've had so far. Thank you for reading!

My fourth and final life threatening experience so far: Respiratory failure and Tracheostomy.

Hi everyone, 

 

This is the fourth life-threatening experience I survived. This one I actually died for a couple minutes.

In September 2018, I got admitted to the hospital for pneumonia. I was in there for about a week and a half. After being discharged, I went home to recover. I had some X-rays done in the weeks after which showed my lungs were clear and I was pretty much over the pneumonia. Yay! But I didn’t see what was coming about a week later.

On October 30, 2018, it was my 37th birthday. I started my day like any other. Everything was pretty routine. My aide Kathy came in the morning, I got into my wheelchair and had my tea like I do every day and I got on my computer. That night we planned on meeting up with my friends at Olivers, which is a local restaurant down the street from my house. My nurse, Sharon, was supposed to have the night off to prepare for Halloween the next day, but she came to work anyway and accompanied to dinner. Which turned out to be a good thing.

Fast forward to around 7pm. We were all having dinner and it must have laid something inside throat, some sort embryo.... wait no that’s a quote from the movie Aliens. So anyway, jokes aside, my friends and I were having dinner and everything seemed to be fine. I had French Onion soup, and it was great, Olivers makes great French Onion. After about two hours, we said our goodbyes and Sharon, my mom, and I headed back home. I got on my computer and thanked everyone for the birthday wishes on Facebook, then played a driving game called Forza Horizon 4 until around 11:30pm when I decided it was time for bed. In 2018, I was still using a mask over my nose with my vent. I used two, one during the day and one at night. I usually had my mom switch them because I never felt comfortable with anyone else doing it. So I shut down my computer and sat back in my chair to get ready. My mom switches the mask to the night one, but it doesn’t go on the right way the first time, so we take it off and do it again and it goes on right. And that’s the last thing I remember before waking up in the ICU with a tube down my throat. I was like “what the fuck?!”.

Rewind to what happened after the mask went on. My mom went and sat down and Sharon came over and said, “okay are you ready?” No Answer. Sharon came around and saw I was just staring straight ahead with nothing in my eyes and I wasn’t responding to anything. Sharon checks my pulse and I don’t have one and I’m not breathing. She goes to get the oxygen tank and, of course, the valve is broken and it doesn’t work. She comes out of my room and tells my mom, who’s on the phone with 911, they need to get me on the floor to administer CPR. So they do that and my mom continues explaining the situation to the dispatcher while Sharon tries to keep me alive. It takes the EMTs 3 minutes to arrive along with Police and Fire Rescue. They get me on a stretcher and take over for Sharon in the ambulance. The EMTs didn’t leave right away. They sat in the driveway for about 20 minutes to stabilize me. They lost me three times in the driveway and gave me three shots of epinephrine. My EKG would start and then flatline each time. Finally, they began the drive to Cape Cod Hospital in Hyannis, Massachusetts. Along the way, they used an automatic compression machine to continue CPR. They lost me another three times and gave me three more epinephrine shots. They get me to the ER and a doctor comes in and takes over resuscitation attempts for another 15 minutes. By that time, my heart had been on and off for 45 minutes. The doctor gave me one more epinephrine shot and then told my mom there was nothing else he could do. My mom decided I had been through enough and gave him permission to discontinue resuscitation. He pronounced me and left the room for a minute. My life ended on the early morning hours of October 31, 2018. 

My mom called my brother James at UMass Amherst to give him the news. Right after hanging up, something totally unexpected happened. The doctor comes out, and he’s pale. He says “I don’t know how to tell you this but he’s back” My mom is very surprised, relieved, and likely confused at this then realized “oh shit! I have to call James back” lol. She calls him immediately and tells him I’m back. My mom, Sharon, and my aunt Tricia could come see me in the ER room. My mom tells me my blue eyes were glowing like she’s never seen before. They asked me to look at certain people in the room and I could identify each person. The doctor still didn’t think I was going to pull through because of the time my heart was stopped. I had to have brain damage. The nurses were telling him I seemed to be totally alert, and I was following every command they gave me. They eventually admitted me to the ICU, but they induced a short coma just so my brain and heart could recover from the trauma. It was thought that I had a sudden respiratory failure, but they don’t know exactly what triggered it. They also couldn’t explain why I came back because I was physically dead. I experienced something they call “Lazarus syndrome,” which is named after a man in biblical times who also came back from the dead. It’s a rare phenomenon that has only occurred a few dozen times in medical history, as far as what has been recorded. It’s something that can’t be explained.

Back to waking up in the ICU. Because of the drugs they gave me to put me into the coma, I remembered nothing about waking up in the ER or what I could have seen on the other side. Which is a bummer I’m curious about lol. I actually woke up on a Sunday and the event happened on Tuesday. Pretty much every family member of mine was there, as well as some of my nurse friends. Mary Kate, the case manager at Aveanna nursing and a good friend, was sitting next to my bed with tears in her eyes. I never saw her cry before... so I figured something terrible happened. She was happy that I was still here, but she was sad because she and my mom had a question to ask me about my future and they knew I might decide to let myself go. First, they told me I could not go back to wearing the mask with the BiPap because this could happen again and I might not survive it again. They said the doctor suggested I have a Trach put in if I wanted to live. The question they had was, do you want the Trach? I’m a strong-willed person and after going through that traumatic event, I would not let it be for nothing. I pretty much immediately agreed. Let’s do it! I choose life.

They did the surgery on November 6th. It was a pretty quick operation. They just cut an opening in my throat and through the front of the trachea and inserted the plastic or silicone tub in, then stitched up the incision on either side of the tube. When I woke up the next day, I didn’t think it happened lol. I felt little of anything in my neck, but they gave me a shot of Fentanyl so I wasn’t feeling much of anything anywhere. When it wore off, I felt as if I could breathe well enough even though I was. I wondered if I made a mistake. After a couple of days, they discharged me and then I went to rehab in New Bedford at Vibra Hospital. I ended up spending two weeks in Vibra and it wasn’t fun. Most of the nurses were very sweet and patient, especially Francesca (Frankie), who was pretty cool and great at her job. I’ve since reached out to her on Instagram, but I don’t think she’s supposed to be friends with patients due to Hippa. So Frankie, where ever you are, I hope you are having a great life and are still a health care worker. Patients deserve to be treated like a person and you do that. But there was a nurse, probably in her 60s, who took advantage of the fact I couldn’t speak yet, and neglected me and leave me in human waste for 6 hours. I can’t remember that one’s name, of course, but if I did, I wouldn’t keep it to myself. But that’s a story for another blog post...

Anyway, I was discharged on November 24 right after Thanksgiving and taken home in an ambulance. Sharon, Mary Kate, my mom, and a new nurse named Christine were waiting for me. They had to work on a care plan for this recent life change. It was then that I was told that mom called James the night of the event to tell him I was gone. I lost control of my emotions and broke down into sobs. Sharon and my mom said it was OK to cry. Over the next couple of weeks, I still felt as if I wasn’t breathing enough. The respiratory team from Boston Children’s Hospital came down to check on everything and I told them I felt like shit. They did some adjustments on my vent and almost immediately I felt better. They also tried to take down the cuff inside the trach so I could speak. With some trachs, they have a water-filled balloon to prevent leaks when sleeping. But when they remove the water, it opens up the airway around the vocal chords to allow you to speak. Well, I wasn’t ready for that yet lol. I started doing it during the day for short amounts of time to get used to having it down. On Christmas day, I gave my family a present by letting everyone hear my voice again for a couple of hours. In January, I met a new aide named Kayla, who changed our lives. I didn’t know at the time would become my best friend and then sister. I will do a quick blog about her sometime, maybe... Only if she’s okay with it and gives me permission. The day after, I took down the cuff and left it down all day and continued all week. My nurse Christine was so happy because now I could actually talk to her lol. A few months after that, they gave me the OK to drink and eat by mouth again, which was a relief. I was actually told I could’ve started earlier, but whatever lol. The doctors and respiratory team said they never saw a person recover from the trach surgery as fast as I did. The last few years since I don’t even know it’s there. It’s basically second nature to me. I can still travel and go wherever I want despite the trach even though we have a couple more things we have to bring with us. But we do it! I never thought I’d ever say this before, but I am so glad I chose life and had this done. I’ve met a lot of amazing people since, including my #1 bestie/sister Kayla. Thank you for reading!

My third life threatening experience: Malnutrition and Pneumonia again.

Hi everyone,

 

This is my third life threatening experience I survived.

This all started at the end of August in 2013. I had a severe cold in May of that year that stayed with me the entire month and into June. It almost made us cancel our trip to Washington, DC, with my cousin Molly, but I started feeling better several days before and was recovered. So I went on the trip and it was totally gone when we got to the hotel in DC. It turned out to be a pretty awesome trip.

However, the cold may have been what eventually triggered the health issues I suffered from between August and January. So in August of that year, I began falling asleep a lot more than usual during the day. I started dozing off randomly and sometimes when I was eating, which was dangerous. It went from occasionally to every day and concerned my health care workers. It got to where I was asleep most of the day and barely went on my computer. I was even going to the movies and falling asleep there. My mom and I were in constant contact with my doctors in Boston, who were monitoring the situation. They weren’t too concerned about it and didn’t think they needed to see me right away but said if it worsens to bring me up to the hospital. Towards the end of January 2014, it got to be a major issue. One day I was so sick, and we went to the local ER. They didn’t do shit for me because they figured I was going to die. I was dehydrated and there was an IV bag of fluids right next to me, but after trying a few times and failing to get an IV into me, they just didn’t bother. They couldn’t get any blood out of me either, but they also didn’t try very hard. They took my temperature twice with two different thermometers and it was 92 degrees each time (which was way too low), but again, being the incompetent morons on duty that night, they claimed both thermometers were broken. I’m glad I went to the professionals, huh?!. The doctor, who was just as stupid, said I’d probably be fine and prescribed something that definitely wouldn’t have done shit for me and basically sent me home to die.

The next day my health was clearly in deterioration. I was falling asleep all day, and I was having problems swallowing anything. Which had actually been going on since November. I tried drinking tea, and it all ended up on my lap instead of down my esophagus. Definitely, something was wrong. In the afternoon, we contacted my pulmonary doctor in Boston and he said to get me up there as soon as possible. We packed up all my equipment in the van and raced up to Boston to the ER at Boston Children’s Hospital. I figured I probably wasn’t coming home that night. As soon as I arrived, they began running tests and doing EKGs and X-rays. They discovered I had a touch of pneumonia and I was suffering from malnutrition because of the Muscular Dystrophy and my inability to get enough nutrients. They admitted me to the ICU to be treated. I got to the room, and I had an IV put in and several vials of blood taken. It showed the how much better the care at the Boston hospitals is compared to Cape Cod Hospital. I finally got to sleep around 2 am. When I woke up, I was intubated...

In the morning, the doctor didn’t like how I looked and didn’t think I was getting enough oxygen, so he put me under anesthesia to be intubated. I apparently was fully conscious when I discussed it with him, but I have no memory of it because of the drugs they gave me. It took several people to do the intubation because I had an airway that was kinda tough to get the tube in. So when I woke up several hours later, I was a little surprised to see the tube and was like what the hell happened. I had the tube in for about 4 days and on the Thursday after everything happened they removed it. The pneumonia was gone, but I wasn’t out of the woods yet. The pneumonia, as well as all the other symptoms, was a sign that because of the malnutrition, my body was shutting down. If I went home, then it would happen again and again until I passed. I weighed around 78 lbs and I was still losing it. So I had a decision to make if I was going to save my life. 

On Friday morning, my pulmonary doctor, Dr. Graham, came to see me. He told me he recommended I get a Gastrointestinal tube and a Tracheostomy. Now I had been putting these two things off for over a decade because I wanted nothing invasive in my body. So my answer at first was I’d think about it. My mom was unhappy with me because I was still not wanting it, even though I desperately needed it. I asked the doctor what the G-Tube surgery entailed because I was terrified. Dr. Graham assured me it was a pretty simple 45 minutes surgery and I wouldn’t have to be cut open. So I said okay I’ll do the G-Tube but I don’t want the Trach right now. He was relieved I agreed to do that at least and scheduled the surgery for Monday. The surgery ended up being postponed until Thursday. I had the surgery around 2:30pm and everything went great. It ended up taking an hour and a half though because of issues with intubating me again. I woke up later that day and was alert, but I didn’t remember any of that because of the anesthesia. The first thing I remember after the surgery was it being Saturday. I was like, “how did the surgery go?” And my mom and aunt were like “you asked us twice already!” They were a little concerned, but were told by the doctor that it was normal. On Monday, they discharged me from Boston Children’s and we headed back home to the Cape. 

The first few days were a little rough because I was getting hit by waves of nausea. My stomach wasn’t used to that much going into it so fast. But eventually it subsided, and I was becoming comfortable with it. I was having a hard time sleeping at night though, and that sucked. We also discovered I had some skin breakdown on my tail bone two weeks after we got released. The visiting nurse suggested I stay off it by lying on my side in bed for a couple of days. I tried the pullout bed on the couch, but I probably would have been more comfortable on a slab of granite. So we moved my bed into the living room so I could at least watch TV. It took two weeks to fully heal, but I was getting up in the afternoon to use my computer. After that, I seemed to fall asleep and drool out my tea again. So we headed to my primary care doctor on Cape to figure out why that was happening again. While we were there, my Respiratory Therapist, Lauren, in Boston called and thought it had something to do with the Vent settings. Turns out she was absolutely right. We changed the settings slightly right there in the Dr’s. Office and I started feeling better immediately. I also started using a chin strap in bed to keep my mouth closed while I slept because it had a tendency to fall open and it was increasing my C02 again. So we fixed it. A few months later, my weight had increased to 125 lbs, and I felt so much healthier. I wish I did it years before. That Summer I started my Muscular Dystrophy shaving cream challenge and I’ve been doing it ever since. If I didn’t get the G-Tube, I wouldn’t have been here to start that. So I’m glad I chose life. 

My second life threatening experience: Hypercapnia and Respiratory Acidosis.

Hi everyone, 

 

This is about my second life-threatening health emergency I survived.

In May 2000, I was 18 and had my high school Senior Senior Prom. They held it at the Hyannis Sheraton hotel in Hyannis, Massachusetts (now known as The Resort and Conference Center in Hyannis). I went by myself because I wasn’t sure anyone would want to go with me. There was someone I should have asked. Jenny Gervelis I should have asked you. You were always an absolute sweetheart to me and a good friend. Anyway, at the Prom, my friends, their dates (now wives), and I all sat at the same table where we had dinner. Afterwards the dance floor was open to people to.. well dance lol. About an hour into it, I noticed it was getting really hot in there. I swear it had to be around 85 degrees in the function hall and there didn’t appear to be a way to open the windows. We were all in an oven. 

Around 11:30 PM, the Prom came to a close. Everyone went either to a hotel room, home, or to the after-prom party. I planned on going to the after party, but I went home first to change into regular clothes. I noticed as I was crossing the parking lot I felt a little fatigued, a lot more than usual. But I thought nothing of it and continued to go home and then to the Dennis-Yarmouth Regional High School where the party was being held. It was a pretty great party! In the gym, they had a bouncy house and a slide into a ball pit. In the corridor, they had several arcade games. They had food in the cafeteria (not sure where else it would be lol), and movies in the Auditorium. My aide Greg took one for the team and went along with me the whole night (it ended at 6:30 AM). We got something to eat and then watched the movies in the Auditorium. It was Austin Powers... yuck! and the Sixth Sense, which I already saw, and that’s a movie you can only see once. I had the greatest action/sci-fi/horror film in existence, Aliens, in my backpack. I should have asked the media production guy to let us watch that instead of Austin fucking Powers. The entire night I was downing Coca-Cola and caffeinated black tea. Probably the worst thing to drink. Anyway, the morning came, and the party ended and everyone went home. My mom picked me up in our shitty Plymouth Grand Voyager handicapped van and we went straight home. I felt accomplished because I was born with a terminal illness and I made it to senior year and prom. I got home and tried to get some sleep.

I woke up about two hours later, and I couldn’t sleep. So I got up and hung out with my aunt Tricia and my 2yr old brother James. I was so tired yet couldn’t sleep. That night I slept really well. The next day we had to go up to Middleton, MA, for my cousin Molly’s kindergarten recital at Middleton Elementary School. The ride up my breathing seemed way off and at the school, the AC wasn’t working and it was hot as hell inside. I had to go outside because I felt like I was being asphyxiated. On the way home we stopped at Best Buy because I was a big gamer back then too and they released the game Resident Evil Code Veronica that day and I was picking up a pre-ordered copy. Again, that night I slept very well. The next day, I have school early in the morning. Now I had a bad habit of falling asleep in my first class which was English and the teacher, Miss Smith, usually had to wake me up lol. Well, on this day, Smith was in an incredibly shitty mood. I was also having trouble that day staying awake for anything. She was yelling at the class about something and I nodded off. She turned her attention to me and yelled at me to wake up, which almost gave me a fucking heart attack. At the end of class she stops me from leaving the room and says something like “I don’t appreciate you sleeping in my class” I say “I’m sorry I can’t help it I don’t know what’s going on” and in a tone that I took as sarcasm she says “then what are you doing here?”. I was like a real bitch? Like I have a choice.... My mom was a newly single mother raising a disabled teenager and an ornery 2-year-old. She had to work and if I’m at home, how the fuck was she supposed to do that? I didn’t say any of that, by the way lol. If I did, her insensitive response would be it’s not her problem. Clearly, I wasn’t doing good. Instead of being a miserable bitch, how about you send me to the nurse? I wasn’t a normal student. I had severe underlying health issues, which she knew. Anyway, I left the room without telling her to go straight to hell, back to her own kind. So, the next day I started bringing caffeinated tea to school in a big insulated cup so I could keep myself awake. I feared that if she started on me again, I probably would have been suspended by calling her a bitch. It was helping a little, but I felt like shit. The following day was a Wednesday and my aide Beth was here at home after school. She noticed I was breathing rapidly and my heart was racing. I had recently been put on a blood pressure medication and I thought I had to take one of the pills because maybe it would slow down the heartbeat. She wasn’t really supposed to give me those and I wasn’t going to make her do something she was uncomfortable with. Eventually that night it subsided and, like with the pneumonia, I felt good in the morning. Even still my mom contacted my Pediatrician in Hyannis and made an appointment for Friday at noon. I told Miss Smith that I was leaving early and she was like “Oh you’re leaving during my class?” I was like Fuck You lady(in my head). Mom came and picked me up and we drove to Hyannis. They began doing some tests and administered a nebulizer in case I had Pneumonia again. They couldn’t find anything wrong with me but they could clearly see something was off. They decided to be cautious and told us to go to Boston Childrens Hospital. It was a good thing they did.

Mom and I get to Boston and leave the shitbox to the valet... poor guy having to drive that... Anyway, they sent us to Cardiology to do EKGs, Ultrasounds, blood tests, and I think they did several X-rays. Still, they couldn’t pinpoint whatever the hell was wrong with me. Finally, they were like we can’t find anything, so I guess we’ll send you home. As we were waiting for the elevator, the doctor came over to us and said while they couldn’t find anything; he was very uncomfortable about it. So he sends us down to the Emergency Department to see one more person who was basically a respiratory genius. He looks at my blood test results and was like it’s really good you came up here when you did. He admitted us and immediately started me on a BiPap machine. Unfortunately, there were no rooms at Childrens at the time they were all occupied. They sent me to the ICU at Boston Medical Center and they got me in a room there. I had to use the BiPap that night, which I didn’t like because it was a strange sensation and I felt like it was sucking the air out of me. So, about halfway through the night, they took it off. It was probably not a good idea. I wake up the next morning feeling like shit. I got up in my chair and I was becoming irritable and disoriented. At one point, my mom goes to grab a smoke. The nurse comes in and says something to me and I reply with “fuck you bitch”,, which isn’t me, and then started saying “shit” repeatedly. Now I don’t remember any of this. But I guess the nurse was understandably angry and upset at my outburst. She asks my mom if I normally speak to people like that and my mom says she’s never heard me say anything like that to anyone. Mom comes in and I remember her asking why I was upset. I didn’t know what the hell happened and said I wasn’t upset. Then I asked to get back into bed. I don’t remember the next four hours. According to my mom, aunt, and several nurses who witnessed it. As soon as I lay down, my body seized up and my eyes rolled back into my head. The heart monitor registered a heart rate of 250 bpm. Normally it’s between 60 and 100 bpm, so my heart was on the verge of exploding. After a few minutes, my heart rate dropped to normal, but I was out cold. 

When someone has DMD, like myself, the muscle responsible for respiration called the Diaphragm gets weaker. So we have trouble removing excess Carbon Dioxide from our lungs. This is known as hypercapnia and can lead to Respiratory Acidosis. Respiratory Acidosis is when the buildup of C02 in the blood causes the blood and other bodily fluids to become acidic. Symptoms of RA are confusion, fatigue, lethargy, shortness of breath, and sleepiness. If untreated, it can be fatal. I had been suffering from all those symptoms all week and I became disoriented right before the seizure, which is why I told the nurse off and didn’t remember.

Four hours later, I woke up surrounded by family and EMTs. The EMTs were there to move me back to the Children’s Hospital ICU, where a room had become available. I was intubated so I couldn’t speak. The DMD wasn’t as advanced as it is now and I still had the use of my hands. I asked for a pen or pencil and a notepad and wrote, “What happened and where am I?”. My mom explained I had a seizure from C02 build up and was probably going to be in the hospital for a couple weeks. I was concerned because HS graduation was a month away and I didn’t want to miss it. The only good thing about it was I had a paper due for the English teacher the Monday coming up and I hadn’t even written a goddamn word of it. So I was off the hook! 

I spent a week in the Pulmonary ICU at Childrens. The episode happened on a Saturday and by Tuesday I was extubated (tube pulled out of my trachea). It was the most boring experience in the hospital. Every day, I watched the clock tick by. On Friday, they moved me down to a normal room on one of the patient floors. I spent another week in there and had some family and friends and even some of my teachers came to visit. They also gave me access to an actual TV with cable, so I wasn’t just watching the clock. By that Friday, they discharged me from the hospital. They gave me a pulse oximeter, an oxygen concentrator, and my own BiPap machine, which I started using at night when I got home. 

Two weeks later, I went back for the last three days of school and I received my yearbook, which I had Jenny G. sign because she was a good friend. The following day was June 10, 2000, and I rolled up on the stage and got my diploma from our principal, Mr. Jenks (✝️👆❤️). I received a standing ovation from my classmates and friends, which brought a tear to my eyes. I was so happy I could attend my graduation. 

My first life threatening experience: Double Pneumonia.

Hi everyone, 

This is the first of four life-threatening health emergencies I survived. 

Back in November 1996, my 9th grade biology class went on a field trip to a nearby beach in Yarmouth port, MA, known as Gray’s beach or Bass Hole. Gray’s beach is not so much of a beach as it is an Estuary of Bass River. You can swim there in one spot because there’s beach sand. Otherwise, it was ankle deep, nasty slimy mud you had to trudge through to get to the water. Gray’s beach also has an 800ft long boardwalk out over the marshland and it’s something definitely worth seeing. 

So anyway, it was bitterly cold that day. The temperature was around 40 degrees in town, but when you’re near the coast, it felt more like 25 degrees. I remember I was wearing a thin Adidas windbreaker because I was a dumbass teenager. My aide Greg was like “Are you cold?” And I say “no the cold doesn’t bother me!”. Bullshit, I was freezing my ass off and was miserable. We were there for about 3 hours. I don’t know how none of us suffered hypothermia. A few days later, I had a sore, raw throat. It turned into what I thought was just a cold, which I had so many of before with no problems. For about two weeks, I could not shake this thing. I had a doctor’s appointment in Boston one day and I felt like absolute shit that entire day.. I remember going to Burger King on the way home and I got a cheeseburger which was so hard to eat because I felt so gross. We go home and I go to bed that night. 

In the morning I wake up and I feel like I’m 100% again. I’m thinking it’s finally beginning to pass, so I head off to school. About 3/4 of the way through my Bio class, I coughed something up and it stayed in my trachea. No matter what I did, it wouldn’t go anywhere. Either back into my lungs or out of my mouth (gross, I know!). I could breathe just fine, but it was a very annoying sensation. I went to see the school nurse. I thought if I vomited I could clear my trachea (don’t look at me like that.... I didn’t have human anatomy yet, so I didn’t know the esophagus and trachea were two different things). The nurse was like; I am not sticking my finger down your throat. She was concerned and sent me home. My mom came and picked me up in our shitty 92 Plymouth Grand Voyager. We stopped at McDonald’s drive-thru and I remember getting an 8pc chicken nugget with sweet and sour sauce and a coke. I got home, and I ate the whole thing without issue. We had an appointment with my pediatrician at around 3pm. So I figured I’d take a nap since it was 12pm. It was a big mistake. 

 

 I wake up and I’m totally wiped and feeling shittier than ever. My mom gets me back in the chair and we head to the Pediatrician earlier than the appointment because something was clearly wrong with me. When we get there, we’re in the waiting room for about 45 minutes and my health is rapidly deteriorating in the meantime. Finally, we see the doctor and he took one look at me and turned pale. He used a stethoscope to listen to my chest and had the “holy shit” look on his face. He says this is pneumonia and Mike needs to be admitted yesterday. Pneumonia is one of the major killers for those of us with Duchenne Muscular Dystrophy. Our diaphragm, which is the muscle responsible for breathing, begins weakening at a certain age and we lose our ability to clear our lungs. So the doctor wanted to get me into the ER to get it under control before I succumbed to it. The doctor figured it was too late, though, and I was probably going to die. We drove to Cape Cod Hospital in Hyannis and went to the ER. The first thing done in the ER was a chest x-ray to see the extent of the infection. When a chest x-ray is done, the chest cavity is supposed to appear black because that means it’s hollow and full of air. But the color white anywhere in the lungs usually means there’s fluid inside. The results of the x-ray weren’t too bad. The chest cavity was mostly black, with a couple of spots of white at the bottom of the right lung. So I was like okay great maybe I’m going to be okay. They admitted me into the hospital and brought me to a room. I got into the bed which I probably shouldn’t have done. Fast forward two hours and I feel even more disgusting than I did at home which I didn’t think was possible. Another x-ray of my chest was ordered and they rolled in a portable x-ray machine. The results this time were something the respiratory therapist, who was experienced, had never seen before in a person who was still alive. The x-rays showed both my lungs were totally white with a tiny spot of black near the top of my left lung. That tiny spot was the only area processing oxygen. My O2 levels dropped to 91... which is bad!. They changed the diagnosis from Pneumonia in one lung to Double Pneumonia in both. I was going to die. The doctors at Cape Cod Hospital decided they couldn’t help me there and prepared to send me to Boston Childrens Hospital. The first thing they did was try to get blood out of me which is like finding a needle in a haystack. They tried both arms and nothing. Then they wanted to try my feet which I was horrified of. I had feet surgery a year before and I suffered nerve damage so my feet were incredibly sensitive. I would jump out of my skin if you so much as touched them so I could imagine what sticking a butterfly needle into my foot would feel like. Off topic real quick. I fixed the issue with my feet with help from my best friend and sister(now). We used to do a fun activity where we’d put our feet into different things. She’d do it too because she thought it was fun. I’ll do a blog about that another time. Anyway let’s get back to the story. The looked at my feet to find a vein and they couldn’t find anything in either one. So then they were like how about his groin?... Well I definitely forgot I was sick for a second when I heard that. I was like you want to stick that big ass needle into my groin right next to my... um.... well my junk... I was like you better numb that place! Spoiler: They fucking did NOT and I felt every second of that needle in my downstairs... I’m having flashbacks about it now....Soooo anyway, where was I? Oh yes so they stabbed me in the crotch and then they gave me anesthesia(they couldn’t do that first?!) so I could be intubated and connected to a ventilator for the ambulance ride. The Ambulance left before my mom and arrived before her... wait no that’s what you think would happen. But since this is me, I ended up in an Ambulance that had drivers apparently new to New England. So you would think getting to Boston is pretty straightforward from the Cape, right? Nope! These guys started heading to Rhode Island and got as far as Westport on the Massachusetts border before they realized they were going the wrong way. Thankfully I was unconscious during the ride. 

 

I woke up in the Pulmonary ICU at Boston Childrens Hospital with a tube down my trachea. It took about 3 days before the tube was removed and I was breathing on my own. I was still disoriented because Pneumonia does that to you. At one point I forgot I was handicapped and couldn’t figure out why I couldn’t get out of bed so I cried. Eventually the disorientation subsided and I just wanted out of the hospital. I spent 3 more days in the hospital and after a clear x-ray I was deemed healthy enough to go home and I was discharged. I was prescribed a C-Pap machine to use for another week to normalize my breathing. After I was back 100% I had lost nearly 30 pounds and was having a difficult time eating. Pneumonia takes away your appetite for a few months. I was able to return to school a week after I got home. After this experience I had to avoid getting colds because they would hit me like a truck so I had to be careful. I had Pneumonia several times in the 25 years since but none were as severe and I survived every time. I’m a very strong willed person and I continue to fight.

Why my challenge is feet in shaving cream

Explaining why the challenge is what it is.

Hi everyone, I imagine some of you probably wonder why my Muscular Dystrophy challenge is feet in shaving cream and what exactly it has to do with Muscular Dystrophy. I know many people misunderstand the challenge and when they see feet are involved, they automatically assume that it’s some kind of fetish thing under the guise of raising awareness. I can tell everyone right now that it’s definitely NOT! I actually discussed this in one of my other blogs but I would just like to explain the whole thing in its own blog post. 

Why is your challenge putting your feet in shaving cream?

Well, this is a good question and one that people should ask me first and allow me to explain before assuming that the challenge is for fetish purposes. So I chose putting feet into shaving cream because it’s something easy to do for everyone, including the disabled. When the Ice Bucket challenge came out, no one like me could do it. A. We have life support and mobility equipment that will be damaged if it gets wet. B. Some of us, including myself, are sensitive to cold temperatures and can get sick if we get drenched in ice water. So I wanted something that wouldn’t be anywhere near our faces or too close to our machines. Putting our feet into something was the best option. It’s not much of a challenge, I know. If anything, it’s something fun yet simple to raise awareness that is inclusive. But I want everyone to do it this way. I don’t want anyone to put their own spin on things or putting shaving cream in faces. Because that’s been done to death and I also have an irrational fear of things on faces. Keep it simple and just put your feet in! It’s a lot easier to clean.

What does the challenge have to do with Muscular Dystrophy?

It really has nothing to do with Muscular Dystrophy. Like I said in the last question, I just created it as a fun, simple, and unique way to raise awareness that everyone, including people who are physically disabled, can take part in. I guess you could say that the slipperiness of the shaving cream kinda simulates how unstable you feel trying to stand up in the early stages of Duchenne Muscular Dystrophy when we began losing our ability to walk. But I rarely mention that part for the sole reason (no pun intended) that I don’t want anyone to stand up and then fall and get injured. So if you do the challenge, sit! I have to say it’s a pretty satisfying experience!

Why does it look like only girls are doing it?

It looks like it, doesn’t it? Fact is women are much more likely to do it than men. I ask everyone to do it. Men, Women, and kids. I don’t just ask women. Guys are usually like “my girlfriend/wife/etc, will do it". But they themselves usually chicken out. But again, the challenge is open to everyone of every age. Kids have so much fun with it, but adults enjoy it too. 

In Conclusion.

Don’t assume something and judge another person because you don’t understand something. It’s harmless fun, and it makes someone who doesn’t have much they can physically do happy. This challenge is really important to me and I want more people to take part in it, so it goes viral.