Stiff Person Syndrome is believed to be predominantly an immune system disorder. The body creates an antibody that attacks a brain chemical that is part of the transmission of signals in the brain. When the chemical is lacking, strange things happen. Either contradictory but coordinated signals come at the same time spontaneously. When this happens, the body twists into ugly and uncomfortable positions. With SPS, this will often result in what some patients have described as "a lawn ornament." The patient may get stuck in this position for a few moments. In other cases, contradictory signals fire off so that opposing muscles try to contract at the same time. For example, the muscles that allow you to bring your arm in and push your arm out are both firing at the same time. When this happens the arm just shakes and quivers. In yet other cases, certain motions become very difficult to control altogether. In my case, I have a hard time figuring out how to move my legs. I just can't figure out how to make certain muscles move.
As an immune disorder, there are some attempts to treat SPS with immune suppressants. So far, the results at even treating the disease are mixed at best. While medical science continues to use studies to look for results, there is no cure for SPS. Like other neurological conditions, the two keys for most doctors are to look at the duration of life and improve the quality of life. Since the disease can not be reliably treated the only hope is to fight off secondary problems that will bring death, like pneumonia. Then, they talk about improving the quality of life.
What does that mean exactly? How do you define quality of life?
In the case of medications, my biggest single concern is being able to stay clear headed. Then I worry about being able to be awake. I have no interest in sleeping 20 hours a day. So there is an awareness of a trade off, symptom relief for side effect. I'm willing to accept advice from the doctors on quality of life as long as it doesn't conflict in those areas.
The other thing the doctors want to try is physical therapy. Now we have another question. What's the motivation? In the past physical therapy meant recovering from an injury or repair faster and better which meant getting back to work and eliminating pain. Of course it made sense to work hard. Of course it made sense to be driven.
But now, physical therapy is all about improving quality of life. First you need a consensus or at least a definition of what that means. So far, there seems to be a disconnect between the doctor, the two different therapists, and myself as to a definition. Trust is important here. I trust the doctor and we talk. One therapist I trust implicitly. The other one I guess I trust. She didn't let me drown in the pool! But, I'm not sensing a real direction from her or getting a clear set of goals. They keep asking me what I want to achieve and admittedly, I'm not sure I know. It's hard to know what to do when you don't know what's possible.
Beyond all that is the "Why". I have a degenerative condition that has required some mental and spiritual gymnastics to begin to cope with. One lesson the Bible teaches is being content despite the current circumstances. So, I've gotten my head and my heart squared away with the concept of living with this disorder. Now I have people telling me to work to improve my quality of life. "But, I'm OK with the quality of my life. Oh, and what do you mean anyway?"
Fortunately, I can give 100% to what the therapists ask of me without being discontented. Now I can just avoid drowning in the pool or breaking anybody we'll be great.