How it is to live with PLPS
PLPS is short for Pseudosomatic Limb Paralyzation Syndrome - which isn’t exactly widely known. As far as doctors know, the Syndrome is a similar disorder as a Tinnitus; there’s no way of telling what causes it so far, so the common idea is that it is, in fact, pseudosomatic (not actually happening to you, your mind creates it). Hence the first P in PLPS.
Basically, at any random moment, the Syndrome can cause you to loose feeling in one or several limbs. For me, it’s usually my left leg or arm, which is very fortunate since right is my dominant side. People with PLPS have different triggers, for example sudden scares or surprises, loud noises or things like that. For me, personally, it usually happens after I have stressed a lot, say, after finishing an exam paper or having written my final. I figure it’s my way of shutting down after a stress period, my body’s way of coping.
Let me explain how it feels. It can happen two ways - slowly or all at once. The latter is when someone scares or surprises me, which luckily doesn’t happen much for me. In this case, it’s like from one second to the other, my leg or arm will just go numb, like it’s just gone. It’s a bit like when you fall asleep on your arm and then cut off the circulation, leaving it oddly numb. When I get scared, the paralyzation period is usually shorter, 15 to 20 minutes being standard. When it happens more slowly and gradually, the period can go up to six hours (that’s my longest recorded time whilst awake at least). Instead of going numb in next to no time, it starts with a weird tickling sensation at the edges - either the sole of my foot or the tips of my fingers and the limb slowly grows number in the matter of a few minutes. Those happen to me far more often, but not all the time either; they happen about three to five times a week.
How do I manage? Well, you get used to it quite fast. I first developed the syndrome around age thirteen, fourteen, so by now, I know the signs and am used to it. I don’t have the luxury of a 100% disabled-accessible living space - I live alone in a flat on the second floor in a building with no elevator - and I don’t own a wheelchair. I do own crutches (the kind that goes to the ellbow and has handles, not the kind that goes up under the armpits) for when I go somewhere for a long time period and don’t know whether or not there’ll be seats available. I also can get up the stairs if my leg goes numb. I do this by pulling my numb leg (the left, usually, as mentionned) into my lab into what is essentially 50% of a lotus seat. Once my leg is secure enough not to slip, I butt-scoot up the stairs. I use my right arm to hold onto the handrail and to pull myself up. It sounds like a huuuuge struggle but by now I am pretty fast at doing that. Butt-scooting is also how I get around in my flat sometimes, especially if my arm and leg go numb at the same time. That’s rare though, so for me it’s usually just the leg that numbs. When I have both arms free, I pull myself forward on the arms on the ground or use the crutches, whatever is more convenient. I also have no doors inside my apartement, so I have been known to just sit in my wheely chair and roll around sometimes. If I want to go out but my leg goes numb, I sometimes put on a rollerskate on the numb leg and a platform boot of the same height on the other foot, and then I can drag my leg along as I walk. It looks odd but it works.
How do your friends, collegues etc. react? Basically anyone I am close to know about my PLPS. Teachers, classmates etc. in school, the kids I teach, my dancing collegues and obviously my friends and family. It’s not really something I try to hide. They all know the signs of a slowly approaching paralyzation and can give me support should I not have my crutches on me. They’re very sweet about it though, especially the kids I teach.
How can you be a dancer with limbs that go numb at random times? Does it even pays the bills? Well, I started dancing at age 8, so I’ve had time to create a specific technique that works for me. Usually dancing relaxes me so it is very rare that a paralyzation period kicks in when I train or perform. I do extensive amounts of muscle and flexibility training as a dancer, which actually helps me in my every day life since muscle strength is something I depend on. I dance solo, duo and small groups, with people who know how to catch me and make it look good should a fit of paralyzation set in whilst we dance. Sadly, me having PLPS prevents me from being a full-time professional dancer since theatres don’t usually hire people who are disabled like that. Luckily, the school I dance and perform with offered me a teaching position when I turned 20, which allows me to get in the money I cannot make from dance performances (for safety and insurance reasons I am not allowed to do as many performances as regular dancers at my school). I also get payments from insurance because I am officially disabled, which isn’t a lot but it does provide some help. So yeah, I am okay, I get by well as a dancer. I don’t live in luxury but I can live comfortably still.
Is there a cure or treatment? Not to current medical knowledge. I used to get physical therapy when I first was diagnosed to learn how to move with a numbed leg or arm, and I also take homeopathic globuli. I know, it’s mostly just placebo effect and not of any medical relevance but there’s a reason it is called a Pseudosomatic Syndrome. It’s my head telling my limbs to go limp. We don’t know why or how but I figured that, if it’s mostly my head and is therefor psychological, then I can use something that only works on a psychological level. Obviously there are no globuli against paralyzation, so I take ones that are meant for muscle aches, nervousness and stress. They do help keep it at bay, though I guess that’s only true because I want them to help. I don’t care much though as long as they do work.
