“I’m Allie Schmidt, and I’m a mom living with a rare motor neuron disease. The most infamous (and most frequently diagnosed) motor neuron disease is Amyotrophic Lateral Sclerosis, otherwise known as ALS or Lou Gehrig’s Disease. It’s arguably one of the most tragic diseases one can be diagnosed with, and I’ve had to live the past 5 years of my life knowing I will likely end up on a feeding tube. And I’m one of the lucky ones. Since I was 25 years old, my arms have become slowly paralyzed. Whether this disease will take over my whole body remains unknown.
The first sign something was wrong was when my right pinky finger began extending far away from the rest of my hand. It also became harder to type at work. I was 24 at the time and working a marketing job during the day and bartending until 4 a.m. I drank 5-Hour-Energies to get by and in between the random hours I wasn’t working (or even sometimes when I was working), I was partying. I loved traveling and took a 2-week backpacking trip through India. When I came back, I was offered a job working in corporate marketing. This was easily the most stressful and challenging job I’ve ever had. I had a 120-mile commute to work each day, and there was no such thing as a flexible schedule or work from home.
6 months into this job is when I noticed it was getting harder to type. I thought I just had carpal tunnel, so I asked the office manager for an ergonomic mouse and keyboard. Obviously, this didn’t help. There were other changes happening at the same time, but I didn’t think anything of them. For instance, there were a few times when I was working out in group classes at the YMCA and the instructors joked about me not being able to lift very much weight.
I finally decided it was time to see a doctor one night when I was washing my hair. I squeezed some shampoo into my hand, but I couldn’t hold on to the shampoo long enough to get it up to my hair. This is when it started actually affecting my daily care activities, so I scheduled an appointment with a general practitioner the next day. After I scheduled an appointment with a GP, she referred me to an orthopedic surgeon. He diagnosed me with Carpal Tunnel Syndrome and Ulnar Nerve Entrapment. He said I had severe atrophy in my right hand and I needed to have surgery immediately. Before this, I wasn’t familiar with the healthcare system and had no idea you should always ask questions before agreeing to a doctor’s suggestion. One of the most important lessons I’ve learned is you have to be your own advocate. Even though I told him I thought the same symptoms may be happening in my left hand, he failed to check and we went forward with the surgery anyway.
Things got really bad after this. The surgery only irritated my nerves and made my symptoms worse. My hands would constantly spasm when I tried to hold a fork or open my car door. At this point, I still didn’t notice the weakness; I just knew I was losing control of my motor skills. A few months later, I went back to the orthopedic surgeon. He told me I needed to see a neurologist. Shortly after I was referred to the neurologist, I Googled ‘losing motor skills.’ That’s when I put two-and-two together and realized I had been losing muscle for the past year and a half and ALS was a possibility.
During my first appointment with the neurologist, he told me I was too young to have ALS. I did a series of physical tests, which included seeing how high I could raise my arm and if I could do a squat. He ordered an MRI, blood test, and EMG. My only symptoms were muscle twitching, weakness, and atrophy and there was no pain. All of the MRIs and blood tests came back negative. However, the EMG was abnormal in both arms. My legs, back, and cheek were tested and were normal. I was given the differential diagnoses of benign focal amyotrophy, progressive muscular atrophy, and a few other things.
The day of the EMG was June 26, 2017. I had scheduled a photoshoot after the appointment, so I decided not to look at the prognoses until later. When I finally got home and read about motor neuron disease. I was in shock by what I found. I accidentally threw my phone across the room when I saw the prognosis. I sat in my dad’s arms and cried for the rest of the night. I went back to the neurologist 6 months later and was still told I had benign focal amyotrophy (even though no EMG was given). I asked my doctor if muscle twitching was a sign of BFA. He seemed concerned I had muscle twitching and asked for me to show him. Right then, a nerve jumped out of my arm. At that point, he said he wanted to see me in another 6 months for another EMG. This was October 2017 and around 6 months had passed since initially finding out I had something serious.
One of the first things I did after finding out I may have a terminal illness was book a solo trip to Arizona. I had to go to Las Vegas for a business trip, so I added on an extra few days to go to the Grand Canyon. I spent four days in a car by myself savoring every last moment. I stayed in random motels, hiked 11 miles up-and-down the canyon, and stopped for Mexican food any chance I got. I didn’t have any cell service, so I was completely alone with my thoughts for a large portion of the time. I knew I probably didn’t have that much longer of doing whatever I wanted on my terms. I think I’ll always look back on this trip as being a monumental shift in my life as far as personal awakenings go.
It took about a year between finding out I might have ALS and gaining enough emotional strength to seek a second opinion, but I decided to book an appointment at the Mayo Clinic in Rochester, Minnesota. When I first saw the doctor, he said I had probable ALS. From there, I had pulmonary exams, blood tests, physical therapy, and, of course, another EMG. I was very lucky my EMG still only showed deterioration in my arms, therefore ALS couldn’t be diagnosed.
Because it had now been about 3 years since the onset of symptoms, the doctors wanted to look into other possibilities. That’s when I was given the differential diagnosis of Brachial Amyotrophic Diplegia or Multi-Motor Neuropathy (MMN). I went back to Vanderbilt and received treatment for MMN. However, this didn’t improve my symptoms and I was struck with a surprise $12,000 medical bill in the midst of everything else that was going on.
It’s now been 5 years since the onset of my symptoms, and I haven’t received any further treatment or tests since the Mayo Clinic. It’s incredibly discouraging going to doctors and hearing there’s nothing they can do for you. I can no longer drive and my daily care activities are severely affected by my disability. My arms are nearly completely paralyzed. However, I’m the happiest I’ve ever been. My husband and I eloped to Italy, and I had my son, Asher, in December 2019. I’ve dedicated myself to ALS advocacy and created Disability Dame, a blog for moms with chronic illness and disability.
While having a motor neuron disease obviously has its ups and downs, overall, I have a beautiful life I’m extremely grateful for. My husband and I still travel frequently, my baby boy is happy and healthy, and I get to spend my time helping others. The biggest lesson I’ve learned is everyone will experience tragedy. Once you learn this is life’s natural trajectory, you release yourself from clinging on to what was or what could have been. Everything in life is constantly changing, so just learn to ride the wave, baby!”
This story was submitted to Love What Matters by Allie Schmidt of Nashville, TN. You can follow their journey on Instagram and their blog. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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