08/13/2025
Stiff Person Sydrome is no joke and my family and I know my days are getting harder. Possibly limited so i will make everyday count.
However, I'm rising above my grueling 3-day hospital stay, focusing on my unwavering resilience. Just minutes from intubation, I'm miraculously still standing. After enduring hours on a bipap and numerous shots of backophen and diazepam, I'm pushing forward. I suspect a hairline fracture in my foot from the spasms, I still remain unbroken. My sister, a hospital staff member, was told by the nurses and doctors, I might not survive the night, but I proved them wrong. Upon returning home, I persevered and attended Nationals, which at some point while i was there I contracted Flu A. The worst one you could get. My energy may still be depleted, but I'm tackling each day with determination. I may face constant pain, spasms, and a diminished appetite, but my spirit remains unshaken. Speaking from a place of exhaustion and resolve, I've been fighting this currenfight since May m, fueled by faith and perseverance. Though weary, I'm shouldering this burden with courage. If you're a believer, please offer a prayer on my behalf.
🦓STIFF PERSON SYNDROME🦓
I am 1 in a million!
Stiff person syndrome (SPS) is a rare neurological disorder that is characterized by stiffness and muscle spasms in the trunk and limbs. These symptoms can vary in severity and may be accompanied by other neurological features, such as difficulty speaking, difficulty swallowing, and loss of balance. The stiffness and spasms are often triggered by external stimuli, such as loud noises or sudden movements, and can be very painful and distressing for the person with SPS.
The exact cause of stiff person syndrome (SPS) is not well understood. It is thought to be caused by an autoimmune response, in which the body's immune system mistakenly attacks the nervous system. This results in the destruction of a specific type of nerve cell called gamma-aminobutyric acid (GABA)ergic neurons, which are responsible for transmitting inhibitory signals in the nervous system. As a result of this destruction, the nervous system becomes hyperactive and susceptible to muscle spasms and stiffness.
The symptoms of stiff person syndrome vary in severity and may affect different people in different ways. In general, the symptoms of SPS are characterized by stiffness and muscle spasms in the trunk and limbs. These symptoms may be accompanied by other neurological features, such as difficulty speaking, difficulty swallowing, and loss of balance.
The stiffness and spasms associated with SPS may be triggered by external stimuli, such as loud noises or sudden movements. They can be very painful and distressing for the person with SPS, and may interfere with their ability to move and perform daily activities.
In addition to stiffness and spasms, people with SPS may experience other symptoms, such as fatigue, anxiety, and depression. They may also have difficulty sleeping, due to the discomfort and pain caused by the stiffness and spasms.
The symptoms of SPS may come and go, with periods of relative stability followed by sudden exacerbations of the symptoms. In some cases, the symptoms may gradually worsen over time, leading to increasing disability and difficulty performing daily activities.
The treatment of stiff person syndrome (SPS) is often complex and may involve a combination of medications, physical therapy, and other supportive measures. The specific treatment plan will depend on the person's symptoms and needs, and may be adjusted over time as the person's condition changes.
Medications are often an important part of the treatment of SPS. The goal of medication therapy is to reduce muscle stiffness and spasms, as well as to suppress the autoimmune response that is thought to be responsible for the symptoms of SPS.
The most commonly used medications for SPS are GABAergic drugs, such as diazepam and baclofen, which help to reduce muscle spasms and stiffness. Other medications, such as immunosuppressants and intravenous immunoglobulin (IVIg). I can’t no longer do IVIG because I was on it for 8 years and now my body rejects it.
SPS is a complex and often debilitating disorder. It is important for people with SPS to work closely with their healthcare provider. There isn’t any physicians in this area, Vanderbilt, Knoxville or Chattanooga that know how to treat me. I do know I am progressing in my illness but that doesn’t mean I will just give up. Even though some days I want too. I have an appointment at Duke in November and I’m giving it All to God because He’s the only reason I’ve survived 3 near death experiences.
I’m a zebra 🦓 and I’ll wear my stripes with courage and confidence. I will wear them for His glory.
