Gaming

Day 61:  I have broken the habit of turning off lights whenever I leave the room. Maybe it’s more of a compulsion ..I don’t know. I’m not being wasteful ..I just don’t want to end up in a dark place. My head doesn’t handle it well and usually drops the rest of me on the floor. Without visual it doesn’t know my position in space and it’s like ..everyone for themselves. Anyway, I credit computer games with helping me break this habit. They’ve help me think strategically and move forward carefully .. knowing I can’t move backward in time.

The ride

Day 60:  I finish my physical therapy and walk over to the high school football stadium. It feels like I’m detached from my body and viewing it through the narrow lens of a camcorder. What’s in front of me is in focus while the periphery fades away. I’m hoping my peripheral vision will pick up anything there that requires attention. I walk around the track that I used to run. I use the rails to stretch my piriformis muscle, which loosens my pelvis and gives me a smoother ride. I sit on the steps and watch a soccer game that’s already in progress. Feels comforting. Like I’m in the hands of some benevolent neighborhood spirit or something.

New balance

Day 59: My vestibular system is shot [ link ]. Since it’s a major component of balance I’ve come to rely on vision and proprioception to know my position in space, which is what enables me to walk upright like a human being. However, I don’t receive the best signals from my legs and feet, which are a big part of proprioception. So that leaves vision. I’ve come to rely on my eyes. But my eyes come back to haunt me. So I’m learning that the best way to navigate mother earth is by keeping my eyes directed forward and not shifting them from side to side. I need to trust peripheral vision for that. It actually does a better job. Focused attention augments visual features. Too much attention to what’s on the periphery lowers the threshold for warning signals. For instance, bright shiny objects, like passing cars, signal motion ..but not necessarily the motion of the cars. It can trick me into thinking that I’m the one in motion and I’m moving in the wrong direction. It can also trigger alarm as though they’re coming at me. Best left to peripheral vision to correctly screen for these things ..keeping my eyes focused on what’s in front of me.

Rehab

Physical therapy - Jill:  I need to score ‘22’ points on a scale of 1 – 30 in order to be  officially ‘discharged’ from the walker. That means I have to be able to walk a straight line while maneuvering around obstacles, changing my pace ..then do it again backwards. Today I scored ‘13’. For me this would be a killer even under the best conditions

 

My physical therapist, Jill, holds a doctorate degree specializing in the neuro-vestibular system. This means she deals with the part of the brain that gives me a sense of my orientation in space. It’s one of three components of balance. She informs me my vestibular system is shot

 

I remember a female instructor at Santa Cruz who wore a camcorder on her head while walking around school one day. Afterward, she showed us the film. It looked nothing like what we ordinarily see. It was a bumpy and jarring ride. 

 

“That’s because we have a vestibular-ocular reflex (VOR) that keeps our eyes steady while our head bounces around. ” Jill explains “..without it, the world looks like it did on the film ..it’s called ‘osillopic’ or bouncy vision.” I’d say that pretty much captures the essence of my walking expeditions.

Day ten

Wednesday August 15 ~ Speech Therapy:  My speech therapist has got me playing games-for-the-brain on the computer. ..detecting birds that momentarily appear in the forest while keeping my eyes on the trail. Learning to use my peripheral vision while staying focused on what’s ahead. Although this may not seem like it involves verbal skills ..Holly is dealing with my attention and tracking abilities, which are involved with conversation. These exercises also contribute to my physical therapy. Noah (PT) encourages me to trust my peripheral vision more. He prescribes ‘smooth pursuit’ exercises and recommends I avoid making ‘fast tracking’ movements that diminish my eyesight and throw me off-balance.

Day three

Thursday August 2, 2012  Seems I have 20/20 vision at rest. A little less when slowly tracking prey (smooth pursuit) ..and a whole lot less when rapidly tracking prey (fast tracking). So much for my career as big game hunter. Fast tracking makes my eyes rattle around their sockets like marbles in a fishbowl. The eye chart blurs along with the rest of the room and I get motion sickness. Jill, the Vestibular Expert, looks at the saccadic movement of my eyeballs. She sees them ‘flutter’ then overshoot their mark at the periphery. “You have pronounced vestibular impairment on both sides and virtually no vestibular-ocular reflex. Means your vision will blur when your head bounces or turns.” She explains the three components of balance 

1. Vestibular (the carpenters level inside my head providing equilibrium or sense of orientation in space) 
2. Peripheral sensors in my joints (providing proprioception) 
3. Ocular (visual confirmation of my location in space)

“We can help you put some vestibular function under conscious control and give you a better feel for the ground (proprioception) ..just try and keep your eyes open and don’t make any sudden movements with your head ..start trusting your peripheral vision more.” OK ..so my balance is challenged and disappears when you turn off the lights. You might say I've been grounded.

Day two

Wednesday  August 1, 2012 On a midday walk through the halls ..while Noah times my stride ..I experience a familiar sensation .. vertigo. What were crisp walls, artwork and sun-filled courtyards ..become a blur. The room is spinning and I feel nauseous. I tell Noah I need to sit and cut it short. I explain what’s happening and suddenly nurses are taking my blood pressure, EKG and EEG. My blood pressure is elevated (200 / 92) but nothing explains the vertigo. “Oh yeah” I tell Noah “I also have a vestibular impairment.” I see a light go on and my therapy is swiftly changed to include my vestibular system.

 

In the meantime I’m given blood pressure medication and asked if I want to take anything else for it. Ativan, Zofran ..? I decline saying I just want to sit and experience this like I never did before. At home, I would find tasks to distract me. Writing, Photoshop or a book and bed rest. It had to be engaging but easy. As a result, I now have three blogs and an online art gallery. Eventually the vertigo and nausea would lift but I never knew what brought it on or how long it lasted. Noah suspects it may be due to a ‘vestibular challenge’. Dr Ross says watching a train, traffic or just tracking fast moving (shiny) objects could also bring it on. It’s why most people who have it avoid direct sunlight. Whatever the cause, while sitting in rehab ..I discover it runs it’s course in about 4 hours no matter what I do (I’m usually too engaged to notice). It’s been the biggest obstacle in my life since the BMT ..and the reason I take ativan most evenings. 

 

 Dr. Julia Bryson is by far the youngest, prettiest and most intelligent doctor I’ve ever met.  She accepts my condition as a challenge. I give my consent to be the subject of a case study, meaning my treatment and outcome will be published in a medical journal. I’m scheduled to see a vestibular expert as an outpatient ..presumably to collect follow-up data. I’m like “Wow” I’ve finally found a doctor who is willing to take an active interest in my situation and not just write it off as something I have to live with.