Never in a million years did I imagine that my love of fitness and weight training for most of my life would lead me to a journey like this.
It’s crazy how quickly my body has changed over the past few months. I went from strength training regularly to now only being able to stretch in the gym, on a good day, that is.
In July last year, I dismissed a weird feeling in my right hand. It was hard for me to grip anything, and I initially thought perhaps it was a gym injury or carpal tunnel syndrome.
The next month, summer break had finished and I returned to my job as an eighth-grade English teacher, which is when I noticed that gripping a pen was difficult for me.
...
The weakness was getting worse in my right hand and moved up through my forearm. Also, my left hand was starting to get weak. I noticed muscle atrophy throughout my right hand and arm and started having some trouble with fine motor skills and finger dexterity.
Things like pressing to close a Ziploc bag, opening jars, and buttoning my clothing were getting more difficult, and I started dropping things more frequently.
At the gym, I noticed my grip seemed to be getting weaker. I also started noticing muscle twitches in my arms.
In October, I went to my primary care doctor as it was getting worse, and I was also suffering from shortness of breath.
I did a treadmill test. My heart was fine, and I went to a physical medicine specialist for my hands, who performed a regular EMG test on my right hand up to my elbow to rule out nerve damage or carpal tunnel.
I was sent for an MRI on my neck, which found compression with a bulging disc and muscle atrophy.
My hand was bony and losing muscle. It was thin, and I noticed my forearm was getting like that too. They said spine compression can cause severe weakness. I wasn’t experiencing any pain.
I went to a new chiropractor and told him my symptoms and asked for decompression, as I thought it might be a pinched nerve.
...
He said, “Don’t rule out Amyotrophic Lateral Sclerosis (ALS)," so I went home and watched the Eric Dane documentary; ALS crossed my mind, but I never imagined I’d have it.
In April 2026, I had neck surgery called Anterior Cervical Discectomy and Fusion (ACDF), which is performed through the front of the throat to remove a damaged or herniated disc and relieve pressure on the spinal cord or nerve roots.
I hoped things would go back to normal, but the weakness and atrophy in both my hands and arms, as well as muscle twitching, continued to get worse.
Over the summer, I went to occupational therapy weekly, and my therapist noticed I was continuing to decline in grip strength, hand dexterity, and muscle mass.
I also developed an issue where every time I was eating solid food, I would choke. It felt like the food was getting stuck in my windpipe.
I followed up with my neurosurgeon at the end of June. The X-ray of my neck showed normal healing, and a MRI showed the compression in my neck was relieved. She said that it had to be another issue, so she referred me to a neurologist.
I saw a neuromuscular physician too and they both ran tons of tests (needle EMG, neurofilament chain test, labs galore, more MRIs) to rule out any other possibilities.
In August, I was given the worst news and given a definitive ALS diagnosis.
I was numb at first, then shocked and devastated.
This is the most unimaginable experience because I know what the end result is.
Essentially, I am going to be trapped in my body, but my mind will be fully aware of everything.
It has been a hard time for me. I am trying to turn it into something positive to raise awareness and hopefully make a difference, like I did as a teacher, which I can’t do anymore.
I had to quit my career in August because I get out of breath easily and by the end of the first period, I was totally wiped out.
I am doing everything I can to try and stay active. I’ve always loved the gym. Now, when I go, I have to stick to stretching and very light movement to keep my body going. My physical therapist said the more active I am, the more I can preserve muscles that aren’t affected yet. I am trying everything I can to spend time with friends and family.
I am also trying to be a voice to help raise awareness. It is an underfunded disease, and there is not a lot of research.
I’ve asked doctors, "how did this happen?" and they said nobody knows. People always have different backgrounds. Some have no family history, some do. It’s all over the place. As far as I’ve gathered, they don’t know. It is a mystery. They used to say it happened to older people, but now you are seeing people in their 20s and 30s with it.
I am 53. I have lived a wonderful life. I have a beautiful son, great friends, and I can be at peace knowing that I have done a lot. But for younger people, it is even more devastating.
My family and friends have been incredibly strong and supportive, emotionally and physically.
...
My 22-year-old son has been incredible. He is a wonderful young man who is training to be a nurse. They all get me out of the house, especially on days, where I struggle.
It can be very dark. It is exhausting knowing what lies ahead, but I can’t waste my good days worrying.
I pull myself into the present, go for a walk, and have a conversation with friends.
Everything feels slow and heavy at the minute. I know I am declining.
I’m not a doctor, but I do advise people who have profound weakness or muscles twitching like crazy to go see a neurologist and not just endure it.
I wish I hadn’t shaken off my hand weakness. I blew it off for a few months, but I wish I had gone sooner.
Sandra Rankin, 53, is a mom-of-one from California, who shares her story on TikTok to raise awareness of ALS.