Savor the Bittersweet: Our Bittersweet Journey: Proprioception

People have asked, so I will try to explain.

The brain tumor damaged my right parietal lobe in an area affecting what is called proprioception and kinesthesia. This causes sensory feedback disruption from the left side skin, muscles, and joints. These sensory perceptions tell my brain my body’s position, balance, and movement, something I took for granted as a healthy person.

Being "off the matrix", and therefore, neglected by my brain, my entire left side wanders and gets lost in space. I don't have any idea where my left side is or what position it’s in. If I close my eyes and you move my left arm, I will lose track of where it is. My left side feels heavy, like wood, like it’s not mine, but somehow it always comes along with the rest of me.

As a result, my left shoulder crashes into doorways and corners, my left foot trips, my left hand drops things, and I’ve spilled my water because my brain forgot the position of my left wrist and arm. Of course, Ken, the grandchildren, and the cats graciously forgive me for a few unintentional bumps, and a few accidental punches to the face.

While sitting in a chair, I was unaware my left foot was cocked back under the chair and my heel behind a crossbar. I tried to stand but could not because my left foot was stuck. I knew something was keeping me from moving forward so I could stand, but could not feel it was my left foot wedged under the chair. I told Ken I was stuck. He had to tell me to look at my left foot to see it was stuck under the chair.

Situations like this occur regularly in a variety of ways. For example, getting out of bed can be very difficult because I can’t feel (sensory) or see (visually) that my left leg is tangled in the sheets and blankets. Often, my brain tells me my left foot feels alone, hard, and cold, but then I reach down and touch it and find it’s the same temperature as my right foot.

Every week I go to physical therapy (PT), occupational therapy (OT), and speech therapy. I’ve been making steady progress relearning how to do normal things, everyday things, and it has been challenging. When I first began, the therapist told me to walk across the room, turn around, and walk back. This sounds simple, but when I got to the end of the room, I couldn’t figure out how to turn. I leaned my head and shoulders to the left, but my feet did not turn. I hadn’t done this task since surgery, and now my brain-to-feet wires are somehow disconnected. This retraining should help reconnect them.

To compensate, my brain needs to use visual and right-side sensory feedback to locate my left side. Tasks have to be broken down into their basic steps, and speaking aloud to myself, or hearing others’ verbal cues help tremendously. I focus on doing one thing at a time, and after a few repetitions, somehow it is re-framed in my brain. The next time I do the task, I have the new framework and don't have to think about it much.

Something as simple as the pressure of a rubber band around my palm has helped my brain identify my left hand and it’s location. Using this same strategy, small weights for my left wrist and ankle should intensify sensory signals in the muscles and joints so I might know where they are in space.

Also affected is my left side visual perception. We haven’t been able to define or label this yet, but it is easily observed by how many times I leave the left side door of the fridge open, or a left side cabinet door open. This deficit is still a bit of a mystery undefined by the doctors and therapists, so I don’t have strategies to overcome these limitations yet. Reading is exhausting. My brain can't process all the input. I often close my eyes.

Seeing my frustration with typing an email, my son Tim suggested I try using an online program to learn how to type again. It is helping me relearn where the left hand keys are, but my hand wanders and I can't keep my fingers on the ASDF keys. Most tasks have returned quickly, but I am still having difficulty with typing. Maybe I have to break this into smaller pieces too.