Stiff person syndrome is a neurological disease that only affects one in a million people. I am one of them. Even rarer, after nearly dying from my illness, I’m someone whose SPS is in remission, thanks to my doctors at Rush.
Stiff person syndrome gets its name from its chief symptoms, which are rigidity and/or spasticity of the skeletal muscles. The spasms result in unrelenting pain and typically disability. They even can cause broken bones.
The disease also can cause tremors, anxiety and a hyperexcitability of the muscles, known as the startle reflex. Emotional stress, a sudden, unexpected noise, or even a gentle touch may cause prolonged, often severe spasms or rigidity.
I began experiencing these symptoms in my early 30s. Because SPS is so rare, I suffered from the spasms and pain for five years without my illness being diagnosed.
On Mother’s Day of 2012, I woke up with severe, uncontrollable spasms, and my 18-year old son called an ambulance. My community hospital didn’t know what to do and was ready to send me to hospice when a friend of mine intervened and arranged for my transfer to Rush University Medical Center.
To ease my pain and spasms, my care team initially decided to put me in a medically induced coma. They had to get consent from my son to do it, because I was in too much pain from my illness and not coherent enough due to my medications to make the decision myself.
It was only while I was in my coma that the Rush team diagnosed my illness. They performed extensive blood tests that eventually detected the antibody indicating stiff person syndrome.
I remained in a coma for four weeks, eventually emerging as the doctors tapered down the medication that kept me sedated. To treat the SPS, my doctors put me on a high-dose cocktail of medications, which I continued after I was discharged from Rush. I received physical and occupational therapy at Rush once I was brought out of the coma, as well as speech therapy and cognitive function exercises.
While there is no defined cure for SPS, my doctors believe that I now am in a medicine-induced remission. They have started to lower the dosages of my medicines while monitoring how I do with less of it.
Return to ‘semi-normal life’
Before my diagnosis I was in constant pain, had painful body spasms, walked bent over and spent most of my time sitting down. After being diagnosed and treated, I walk fine with the help of a mobility aid. I can exercise, and I practice yoga or Pilates whenever I want. Best of all, it has been almost three years since my last spasm.
Because of the medications and treatment I’ve received, and continue to receive, I’m now back to a semi-normal life. For me, a semi-normal life means being able being an active parent to my son and daughter, cooking, reading, crafting and writing. It also means having a social life and being able to move around without fear of falling, being in pain or worrying about taking enough medication to prevent a spasm.
In addition, it means working to raise awareness of stiff person syndrome disease and support for people with SPS both within the medical community and the general public. I founded the not-for-profit organization Stiff Person Syndrome Action Network, Inc. to pursue this goal.
On March 15, the network celebrated the first International Stiff Person Syndrome Awareness Day. While having SPS isn’t something to be glad about, my doctors and nurses and Rush have given me a reason to celebrate.
Sindanny’s care team was led by Cynthia Comella, MD; along with Gian Pal, MD, MS; Christopher Goetz, MD; and Houman Homayoun, MD in the Rush Parkinson’s Disease and Movement Disorders Program.The team also included James Young, MD, medical director of the Rush Department of Physical Medicine and Rehabilitation; internist Kelly Stein, MD and Jocelyn Jones, RNP, in the Division of Endocrinology and Metabolism.