Mouth Painter - Alex Biagi

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I’m a disabled mouth painter from Colorado. I’ve only been painting this way  since 2015. I have a rare autoimmune neuromuscular disease called CIDP. The odds of getting CIDP is one in 100,000. I've had this disease for 15 years (since 2004) It started when I was 24 and it happened out of the blue. Before this disease I was very active. I played basketball, soccer and other sports. I also played the piano every day from age 6 to 24, I taught myself the guitar and I drew every day as well. I went to college for 3D animation but came up two classes short before the disease started. 

CIDP is an autoimmune neuromuscular disease that affects the peripheral nerves in your body. There is a protective barrier around your nerves called the myelin sheath. Your immune system gets confused and thinks the myelin sheath is a foreign substance  so your immune system attacks the myelin sheath stripping away the protective barrier around your nerves.  That leads to muscle wasting, lack of motor function and sensation. You can also experience burning, numbness and tingling. I had all of these throughout my body. Sometimes in rare cases like mine it also leads to paralysis. My left hand is completely paralyzed and I have a little movement in my right hand. I have enough strength to use a computer mouse so in addition to mouth painting I also work on digital music and  graphic design. It can also causes foot drop which I have on both feet so I use  braces to walk. It can also affect your breathing and respiratory system In severe/rare cases like mine. I've had pneumonia four times and respiratory failures twice. Nearly dying on all accounts.

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 In 2016 I did a HSCT (Hematopoietic stem cell transplantation). I'm the first to do it in Colorado for my disease. The procedure wasn’t easy. I almost died because I had a rare reaction to a rabbit anti-body introduced during the process, (most people won't have this kind of reaction) I was code blue. I was rushed to the ICU and intubated for five days and in the ICU for 20. I pulled through and was in the hospital for 43 days during the process.  

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During this process they destroy your entire immune system as well as your bone marrow with heavy chemotherapy. You also have to stay in a clean room during this time. It was worth almost dying and suffering for because now almost 3 years later (2019) I'm out of my power chair and walking almost 2 miles without stopping with braces on both legs, because I have foot drop on both feet. I also have little nerve pain, although I do get flareups from time to time but it's nothing like it was before the transplant.

In the last couple of months since (March 2019) I've almost regained full motion of my right arm and my left arm is making big improvements as well. Unfortunately I haven't seen any improvements yet in my left hand which is still completely paralyzed. I'm seeing a little improvement in my right hand. I'm able to bend my middle finger a little bit more than I was able to before. Thankfully I have enough strength in my right hand to use a computer mouse. I'm able to bend my right pointer finger to click the mouse so in addition to mouth meaning I'm able to work on multimedia, graphic design and music production. Which is huge, because before I became sick I was a musician as well as an artist I played the piano almost every day from age 6 until 24. So now I'm able to music electronically. 

Throughout my life as of 2025  I've had 29 surgeries, 10 from CIDP and the rest were from playing four sports and other injuries but I keep pushing through and find ways to adapt so I can continue to do the things I love. 

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The Long Version
 

Stupid Body by Alex Biagi

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I’ve always been athletic for as long as I can remember, just like any other kid growing up. I played multiple sports, including soccer (9 years), basketball (6 years), martial arts (2 years), and water sports (10 years). I played soccer from ages 6–15, basketball from 12–24, and martial arts from 12–14.

I had to stop martial arts after I split my patella playing basketball. After my knee healed, I decided to focus solely on basketball. I was entering my freshman year of high school in 1997 and wanted to try out for the JV team. I spent every minute I could practicing, especially working on my legs to increase my vertical and get into the best shape possible. I was determined to dunk—and after a lot of work, I finally could.

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Spinal Stenosis

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One day in late winter, I was playing basketball during lunch when a friend accidentally elbowed me in the back as I went up for a dunk. It hurt, but I didn’t think it was serious. I finished the game and the school day, then ran a mile and a half to my parents’ restaurant after school. At the time, everything seemed fine.

That night, my back felt sore, but later while sitting on the couch, I suddenly experienced severe leg cramps and intense electrical shock-like pain shooting down my left leg from my tailbone. The pain was so intense I screamed. My parents came running, and I was also having severe back spasms.

They helped me up, but walking was extremely difficult. The next morning, my mom took me to the doctor. I was still having spasms and tremors, and the doctor was baffled. As a precaution, I was sent by ambulance to Children’s Hospital in Denver. After a neurological evaluation, they found nothing abnormal and said it was likely growing pains. I had grown eight inches that summer to 6'1", so it seemed plausible.

For a few weeks, things were stable—until it happened again, much worse. We rushed to the ER, but again, no answers. A young neurologist even suggested the pain might be psychological. I continued going to school, but by the time I got home each day, I could barely move. My legs felt exhausted, my spine was in constant spasm, and I became dependent on painkillers just to function.

Things worsened. I began losing mobility and was becoming partially paralyzed from the waist down.

After another severe episode, I returned to the ER unable to move my legs. This time, they performed a spinal tap, which came back normal. Frustrated, my dad pushed for an MRI. My doctor finally agreed.

Within a week, I was referred to a neuromuscular specialist, Dr. Ringel, at University Hospital. He ordered an MRI—still a big deal in 1997. The result: spinal stenosis.

Spinal stenosis is a narrowing of the spinal canal, usually seen in people over 50. My spinal canal was too narrow, and vertebrae in my lower back were compressing my sciatic nerve.

I underwent a four-level decompressive laminectomy. In simple terms, they removed parts of the vertebrae to relieve pressure—like taking a bite out of a donut. Because I was young, they also used muscle grafting to maintain flexibility.

I was in the hospital for a week and had to relearn how to walk. It was incredibly difficult, but I got through it and finished the school year through homeschooling.

Knee Surgeries

That summer, I focused on physical therapy and rebuilding strength. Eventually, I was able to work and even return to basketball. But my playing style led to new issues—my kneecaps began dislocating.

An orthopedic doctor recommended surgery on both knees. My kneecaps would shift out of place, causing intense pain. During my junior year, I had surgery on my left knee, then later on my right. Screws were inserted to stabilize each kneecap and later removed.

In total, I had four knee surgeries. Recovery was tough, especially with my back issues, but I pushed through. Still, I decided to step away from competitive sports and only played casually with friends.

Around this time, I began focusing more on art and music. I had been playing piano since age six and drawing for as long as I could remember. Creativity became my new direction.

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College and New Direction

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After graduating high school in 2000, I went to college for 3D animation, multimedia production, and design. I also took music production courses and ended up double majoring.

I started producing electronic music and investing in equipment—a piano, a computer, and software. For the first time in a while, things were going really well.

During my freshman year, I worked three part-time jobs, and my body finally felt stable. After one semester, I left those jobs and got a full-time position at Costco. It paid well, and I started planning to move out.

The job was physically demanding—pushing carts without mechanical assistance—but I enjoyed it. Eventually, I moved out with friends.

One night, while pulling too many carts, I dislocated my left shoulder. It never fully recovered.

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Spinal Fusion

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Not long after, I experienced one of the worst back spasms of my life at work. I collapsed, screaming in pain, and was taken to the ER. An MRI showed that the discs in my lower back were deteriorating due to my earlier surgery.

I needed spinal fusion surgery.

Before the procedure, I wore a rigid brace from waist to neck for three months. In June 2001, I underwent fusion at L2–L4, with a titanium cage, screws, and rods installed.

The surgery went well—but recovery did not. I developed severe pneumonia and was hospitalized again, with only 5% lung capacity unaffected. It was life-threatening, but I recovered.

Over the next few years, I stabilized somewhat. I still had spasms but managed to work, live independently, and even play basketball again.

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Carpal Tunnel Misdiagnosis

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In 2004, I began experiencing weakness and numbness in my hands. At first, I thought it was overuse from music and computer work. But it progressed quickly.

A neurosurgeon diagnosed me with carpal tunnel syndrome and performed surgeries on both arms. Unfortunately, the diagnosis was wrong. My condition worsened.

By 2005, I could no longer work or live independently. I moved back home. My hands deteriorated further, and soon my legs began weakening. I developed foot drop and had trouble walking.

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CIDP Diagnosis

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In 2006, after extensive testing, I was referred back to a neuromuscular specialist. For two years, my condition worsened with no clear diagnosis.

In 2008, I went to the Mayo Clinic in Arizona. After thorough testing, I was diagnosed with CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), a rare autoimmune disease.

I underwent months of IVIG and high-dose prednisone treatments. The side effects were intense, and there was no improvement. My hands became nearly unusable.

Despite this, I adapted. I continued making music using a piano roll in software, even though I could no longer physically play.

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Collapse and ICU

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In 2010, after stopping treatment, I suffered a catastrophic relapse while at the Mayo Clinic in Minnesota. I experienced respiratory failure and was placed on a ventilator in the ICU for a week.

I spent two weeks in the hospital over Christmas, relearning how to eat, breathe, and walk. It was one of the hardest experiences of my life.

Afterward, I resumed aggressive treatment, including plasma exchange and immunosuppressants.

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Stem Cell Transplant

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In 2016, I was accepted into a stem cell (HSCT) trial in Denver. The procedure involved intense chemotherapy and a bone marrow transplant.

I nearly died during treatment due to a severe reaction and spent 42 days in the hospital, including time in the ICU.

But it worked.

By 2019, I was walking up to two miles with braces, had regained significant arm function, and had almost no pain. My hands remain limited, but overall, the improvement has been life-changing.

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Life Today

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Today, I continue to create. I paint using my mouth and have gained recognition through platforms like Reddit and YouTube. I also work in digital art and music using adaptive tools.

Technology has made a huge difference—I use voice-to-text and a mouse to stay creative and productive.

I’m still a huge sports fan. I’ve been a diehard Denver Nuggets fan since 1992 and a Broncos fan since 1986. I rarely miss a game.

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Perspective

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If there’s one thing I’ve learned, it’s that staying positive matters—but so does taking action. You have to adapt, push forward, and find new paths.

Life may not go the way you planned, but that doesn’t mean you stop living it.