I had my first physical therapy appointment yesterday. This was an area of the hospital I disliked when I worked as an RN. Don't get me wrong, I very much appreciated the hard work all of the staff and patients did there, but it was vague and messy. I had to slow down and think differently when I would go there to help.
I told my therapist this. It was a way to soften how terrified I appeared. I don't do well with anything that requires strangers in my personal space. I have to work at not being freaked out. I wear extra deodorant because I sweat a ridiculous amount.
Side note: One of the things I learned during my sweat test is that people have two kinds of sweat glands. One for everyday use, and the other to keep the monsters from being able to get a good grip.
He was kind and tried to warn me of everything in advance. At one point early on, he raised the table with the automatic foot pedal without warning me and I made an eep! noise and dashed over to the chair. He did not laugh or look at me funny. He just did the rest of the exam with me in the chair.
For those of you with dysautonomia or another neurological condition that might require PT, I thought I would share what I learned. Obviously, your experience will differ based on your symptoms and target area of need. I went for balance issues, but when my assessment was finished, we discovered that I am also having left-sided weakness. It isn't anything too significant, except hand grip, and he thinks I can do exercises to improve it. It was a shock, though, to see my leg not hold up its end of the bargain. I had been suspicious of the grip problem, and actually asked him to test this.
When I told Dan about the test, it sounded like this:
Me: So, the therapist brought out this thing for me to squeeze.
Him: *significant teasing look* Oh, really?
Me (giggling): No, seriously. This story is going to get very strange if you think like that!
Him: *raises eyebrows*
Me (trying to keep a straight face): So, he squeezed it first, and then gave it to me.
Me (barely able to talk from laughing): and then I squeezed it, and it was like squeezing a rock!
We are so immature!
The grip test has a little laminated chart to show percentiles, kind of like the ones we use to gauge our kid's height and weight. The difference is that you already know if your kid is short or scrawny. When you are squeezing the grip tester, you don't feel like it moves at all. I did three on each side, and we ball-parked the average and compared it to the chart. The dominant hand is the higher number on the chart, and it is broken down by age and gender. As a 42 yr old female, my right hand was in the 50-75% range somewhere. My left hand, though, was only in the 25-50% range. That is a significant difference.
It was a relief in a way. I had been noticing that my left hand shakes when I pick up a full glass, and I feel awkward and well, weak. When you are chronically ill with a disease that has so many different symptoms that can change from one hour to the next, you start to jump at shadows. You notice every twinge, every pain prickle, and every tremor. It was good to know that I wasn't a hypochondriac. I really do have a problem with that hand.
He tested the rest of my strength by having me resist force. He would position a body part, and then tell me to try and keep him from moving it with his strength. This was kind of fun, actually. I love a good challenge. I got a little sad and worried when he did my legs. I noticed that my right leg seemed much more able to resist. At first, I was hoping that maybe it was because it was my dominant leg. Nope. Again, not something I expected. We had asked Dr. Khurana in Maryland if my condition would get worse, and he told us no. That makes it a little harder to accept, but I haven't cried yet, so I must be getting better at dealing with things.
The third area of deficit took us both by surprise. He had me walk down the hall while he timed me. Of course, it is so hard to walk naturally when you know someone is watching you, but I tried. I pretended it was my hospital, and I was walking down a hall to do something important. I did it in like 4.2 seconds or something. It seemed a silly test to me. After all, I had already told him that hiking was one of the last things I could still do. It might take me two hours to get to the top, compared to the 15 minutes to descend, but it was worth it.
So, then he suggested that I do it again, but this time turn my head from slowly from side to side, as if I were just looking around at scenery. Easy, right? Ha. When I got to the end of the hall, I was sure I was going to pass out and puke at the same time. He came up quickly with a look of concern. I bent over and focused on breathing. It takes a LOT to make me throw up, and I have never passed out even with a blood pressure in the 70 range. I got myself to a point where I could stand upright and speak, and we headed back to the exam room. Most people decrease their walking time by 10% during that test. My decrease was 50%.
That test lit up my autonomic nervous system. I was pale, shaky, and exhausted from walking down a 20 foot hall. Insane! He explained that because my brain can't rely on sensory input from my feet any longer, it is overcompensating with my visual system. This also explains why I can't tolerate people moving their hands when they talk (he explained while sitting on his hands). It makes me sick to my stomach, as if I am on a boat.
He gave me exercises to do at home until I see him again next week. He expects it will take six weeks, but I only let the receptionist schedule me for four. I am to stand heel to toe and turn my head slowly from side to side. I was also given a very fancy strip of rubber that he tied in a knot to make a circle. I put it around my legs, above the knees, lie on my side and open my knees. It was super easy the first four times. It started to burn at six. He wants me to get it up to fifteen. The color of the strip is blue. The highest resistance is plum-colored, so I figure I must not be too weak, assuming it follows the order of the rainbow. I must have come to trust him by the end of the session, or maybe I was too tired to care, because he sat at my feet while I did those exercises so that he could evaluate my movement.