Life with Stiff Person Syndrome
- The SPSRF Staff
- 7 minutes ago
- 7 min read
We're honored to share this personal story from Julie S., a member of our SPS community. Julie’s journey—from fitness instructor to navigating life with Stiff Person Syndrome—captures both the devastating impact of this disease and the resilience it demands.
Her voice adds urgency to our mission: to raise awareness, fund critical research, and support those affected by SPS. We thank Julie for her courage, honesty, and for helping others feel seen in their own path to diagnosis and care.
Something is Very Wrong
It was 2015, and I felt I had a sinus infection, something I had many times before. I was having trouble with my vision, seeing double in my left eye, so I went to the doctor, who prescribed a course of Levaquin. It is a strong antibiotic, but I’ve taken it before. I had hives when I was young from regular penicillin, so this is what they prescribed me now, it’s a category known as fluoroquinolones, and later known to be very strong and only recommended as a last resort.
I went to a concert with my husband, and when we got up to leave, I couldn’t move. Of course, he didn’t understand right away. I stood up, and I was frozen in place and couldn’t move my left leg. Luckily, the people behind us saw I was struggling, or we would have been trampled.
I grabbed my husband’s arm and, with his help, I could get out and to the car. From then on, I needed to latch on to someone or something to get around. Something was very wrong.
I never had this trouble before, and in fact had been very active teaching fitness classes almost every day, going to classes in addition to mine, and working a full-time job with many extra hours. I was also very social, had a lot of friends, and was part of a large fitness community. We went out all the time to movies, dinner, walking, skiing…always busy. Spent lots of time at Lake George, I so enjoyed it. I participated in and led many fitness fundraisers for various causes – families, diseases, and other group fitness activities just for fun, like Zumba in da Club.
Initial Diagnosis
I went back to my doctor who referred me to a local neurologist who after many tests, thought I might have hereditary spastic parapalegia and prescribed me a muscle relaxer to help with the tightness in my legs which was starting to spread to my back and other areas. Still had double vision, so went to a neuro-ophthalmologist who prescribed glasses with prisms in them. This helped my vision a lot… for now… and I could at least see again, but the stiffness and rigidity, especially in my legs and back, were not improving.
What is hereditary spastic parapalegia (HSP)? It is an inherited neurologic disorder that shares the primary symptom of difficulty walking due to muscle weakness and muscle tightness (spasticity) in the legs. There are more than 80 different genetic types of HSP. I’m not a doctor, but I believe it can be from a gene from a relative who may not have displayed symptoms. There is no cure for this disease, but some people can become quite disabled while others don’t.
My life had changed forever. I had to give up all my teaching and going to fitness classes as I could barely walk. My friends had a big dinner for me, sort of an I’m sorry send off. Nice but depressing, I see memories of that dinner in social media memories, more depressing.
New Diagnosis
It was now around May 2016. Since I was not getting better, my wonderful neurologist referred me to a different neurologist for another consultation without even hesitating. This doctor saw all the same things but ran one additional test for GAD 65 antibodies. One useful blood test can detect the presence of antibodies to glutamic acid decarboxylase (GAD) found in some autoimmune disorders. The antibodies are abnormal while the GAD is a normal enzyme.
About 70 – 80% of people with Stiff Person Syndrome have antibodies against GAD. These antibodies can be detected by a blood test. My antibody results came back sky high. While I understand that high results are not an indicator of how sick you are or will become, they are indicators of what can be wrong.
Stiff Person Syndrome – What Does This Mean
I went back to my original neurologist, and with this new test result and further investigation, he determined my true diagnosis was Stiff Person Syndrome. This diagnosis is generally based on excluding other causes such as brain tumors, multiple sclerosis, Parkinson’s disease, etc.. While this is a horrible disease, I believe I was diagnosed more quickly than many others because of the GAD results. I’ve heard that, on average, from symptom onset to diagnosis is approximately seven (7) years.
Stiff person syndrome is a rare autoimmune neurological disorder that causes muscle stiffness and painful spasms. I have more symptoms on the left side of my body than my right, with rigidity and stiffness in my leg, vision issues with my left eye, curling toes, some pain in my back, and pain in my left ribcage. Due to the pain in my ribcage, they ruled out heart disease. I have balance issues, which can lead to falls, so I always have to be careful, and what they call a startle factor that causes issues with balance and pain based on cold, noises, or anyone catching me off guard. I do better when walking alone than when in a group. If people are looking at me, I tend to get tense and more unsteady.
Stiff person syndrome is known by the National Organization for Rare Diseases (NORD) as a rare disease. It is said to impact one in a million or, more likely, two in a million due to it often being misdiagnosed. There are treatments, but no cure, and the progression is uncertain.
My New Normal - Treatment
After my new diagnosis of Stiff Person Syndrome, my neurologist added a benzodiazepine to my medications. I immediately started to find some relief and could walk. Then he added periodic intravenous immunoglobulin (IVIG), a pooled antibody, and a biological agent used to manage various diseases. The ultimate goal of this therapy is to normalize a compromised immune system. After this, I began to feel more normal and had fewer symptoms. These are all treatments I’ll need for life, as there is no cure.
In summer 2017, I felt well enough to go back to teaching fitness classes. It was slow, one day a week, and shorter classes, but at least I was able to move. I was getting some of my life back. I also had many fitness friends who would come to class and teach with me or instead of me, so I could take some breaks, but still do what I loved. It was not the same, but it was something. I had trouble doing certain moves, backing up, and with anxiety, but I had some of my life back.
I researched online about this disease because it was so rare, and found a doctor at Johns Hopkins who began a Stiff Person Syndrome Center. I asked my local neurologist what he thought about me consulting with him, and he did not hesitate to get me referred right there and then, and he consulted with them. Johns Hopkins now follows me in addition to my local treatment, as they work on more and more treatments for this disease.
Covid Pandemic
In 2020, the COVID pandemic came. All gyms shut down, and I was working full-time from home. I started getting worse and had to go on short-term disability from my full-time job. When I was ready to go back to work, my job was eliminated, which, of course, did not help my stress level, which greatly impacts this disease. Luckily, my husband, who has been my rock, was able to quickly get me on his insurance.
I got the vaccines and the booster, as most did, and was very worried, but feel like my vision and walking got worse throughout this period. Eventually, I found a new job and began working again, and although I could not resume the activities I did before the pandemic started, I could get some of my life back.
Progression
In addition to my troubles with walking and vision, I feel I’m getting worse. I’ve lost my appetite, things don’t taste good, and I've lost a lot of weight. I was never very big to begin with. In addition, my balance and vision are getting worse, and I’m having more and more trouble with my memory, especially short-term. My doctor at Hopkins even noted that I was repeating things I told him earlier in our discussion. Luckily, my husband is here to help, but we are both getting older, and he has his own walking issues. We are getting through.
Hope
Not many people get this disease, but my husband, a few close friends, and family are very understanding and always here to help. For instance, they’ve learned not to reach out to me if I’m struggling, but to be close by and let me grab their arm. This is my new normal. I participate in an SPS conference annually when I’m able to and hope that research will continue to evolve. I’m especially thankful I’m in a study at Hopkins and for the research being done by the Stiff Person Research Foundation. (stiffperson.org).
Thank you.
We thank Julie for sharing her journey with Stiff Person Syndrome. Stories like hers bring visibility, connection, and hope to others navigating this difficult path.
If you’re living with SPS or caring for someone who is, we invite you to share your story with us. Your voice matters—and it could help someone feel less alone.
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