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What I learned from Dr. Christine Roman- Lantzy

In my last post I wrote about attending a two-day workshop by Dr. Christine Roman- Lantzy, the author of Cortical Visual Impairment: An Approach to Assessment and Intervention, and her latest book, Cortical Visual Impairment: Advanced Principles.

During the workshop, Dr. Roman–Lantzy talked about diagnosing and measuring a child’s level of Cortical Visual Impairment (CVI), and said that although CVI is a form of vision loss, it can’t be properly measured using the same tests optometrists and ophthalmologists use to diagnose ocular conditions. She told the workshop participants a child can have an acuity of 20/20 and still have CVI. It got my attention when she told us that because when I met her on the first break on day one of the workshop, I told her I was 20/200, which is what my ophthalmologist had been telling me for the past few years. While speaking with Dr. Roman- Lantzy during a break, I told her I found that point really interesting because the traditional ways were the only methods ever used to test me. No one has ever done a CVI assessment with me. She said that’s because it’s only done on children. Hearing that, but not feeling deterred by it, I went to find one of my teammates at CNIB who works with young children and is very well versed in doing CVI assessments. She knows I have CVI, and I told her I am eager to know how I would score on a CVI assessment. She said she’s a bit curious too, so we’ll make that happen someday soon.

Another reason I want to know where I am on the CVI Range stems from one of my first conversations with Dr. Roman-Lantzy when I told her I felt as though I’ve been able to move right to phase three on Some of the characteristics because of my visual memory, but after listening to her speak on the first day, I wasn’t so sure any more. I now believe that for some of the ten characteristics of CVI, particularly complexity, both of array and of faces, I might still be in phase two, meaning my score on the range might be lower than I first thought.

Latency and distance viewing are two more of the ten characteristics which I never thought I was affected by at all, but as I thought more about it, I came to the conclusion that I think I do experience latency in some areas of my life, and distance viewing also affects me more than I first thought. When I’m riding in a vehicle, I can see a lot of what is around me, but I can be slow to react to things that happen in my peripheral vision, which I believe is latency. Distance viewing is also a problem because the further something is from me, the more it blends into the background, which then brings complexity into play, and that’s a characteristic I know for sure I struggle with.

One of the last things I learned from the two-day workshop was that, according to Dr. Roman- Lantzy’s findings, people with strabismus also have a harder time overcoming the effects of CVI. Strabismus, which in my case means my left eye is off centre, is something I’ve had for as long as I can remember, but it didn’t seem to have that big of an affect on my life, or so I thought. In 2006, I had an ophthalmologist offer to correct my left eye, but that was just a few months after losing my sight, and I wasn’t prepared to do any more procedures that might harm my vision further. I have a prism in my glasses to redirect light to the centre of my vision, so I don’t feel the need to do anything more invasive. If my eye was better aligned would it help me overcome even more of my CVI challenges? Who knows? I’ve come this far with my eye being off centre, so I don’t feel the need to change it.

Learning about CVI and trying to figure out where I fit in the range has been a very interesting experience, and I feel like there is much more learning yet to be done.

Learning from the Expert

Two weeks ago, I had the pleasure of attending a two-day workshop on Cortical Visual Impairment (CVI) given by the woman who has literally written the book on the subject – three books in fact, Dr. Christine Roman- Lantzy.

When I learned that Dr. Roman-Lantzy would be coming to speak not just in my home city, but in the multi-purpose room of my workplace, I knew I had to be there, so I signed up right away – even before I’d asked my boss if it was okay for me to attend. I had read Dr. Roman- Lantzy’s book last year, partly for professional reasons I could use in my job, but also for personal reasons, because I have CVI myself. After reading her book, and doing online searches for more information on CVI, I discovered that all of the literature I could find on CVI pertained to children. I was not able to find any information on CVI in adults. Going into the two-day workshop, the main question I hoped I would be able to ask Dr. Roman- Lantzy was whether or not sight loss due to a brain injury like mine is considered CVI the same way it is in children.

On the first day of the conference, I walked in to a room full of tables with six chairs at each. I joined a group of my co-workers who had gathered at a table near the front, but off to the right of the main speaking area.

After being introduced, Dr. Roman- Lantzy told a short opening story about her adventure of getting across the border to come and speak to everyone assembled in the room. She then did a quick poll to see who was in the room. There was a wide range of professionals including Orientation & Mobility Specialists, Teachers of the Visually Impaired, Occupational and Physiotherapists, and many more, plus me, who didn’t fit any of those categories. I raised my hand and asked my question. If a person loses their sight as a result of a stroke that injures the occipital lobe of the brain, is it still considered to be a Cortical Visual Impairment? She confirmed it is. I went on to tell her a quick version of my story, saying that I had a stroke when I was 34 years old, and have been living with CVI for nearly 14 years. She said she’d like to know more about that, and said we’d talk, then went on with her presentation.

At various points during the first day of the workshop, she would motion toward me and ask if my experience was the same as whatever point she was making at that moment. For instance, one of the ten characteristics of CVI, as identified by Dr. Roman- Lantzy through her research, is a child’s preference for a particular colour, or one that the child seems to see better than others. She asked me if colour was important to me, and I confirmed it was, especially the primary colours of red, blue, and yellow.

On one of the breaks, I told her that based on what I read in her book, and up to that point in the workshop, the one advantage I feel I have over children born with CVI, is the benefit of visual memory. I remember what the world looked like before the stroke, and therefore, I told her, I felt I was able to jump right to phase three on many of the characteristics of the CVI Range. She agreed with that thought.

The CVI Range is a tool used to assess and monitor the progress of a child with CVI. The range is divided into three phases, where phase three is the stage that the child is least affected by the ten characteristics, including colour, movement, latency, light gazing, complexity, and more.

By the end of the first day of the workshop, I was so excited about what I had learned, and what she wanted to learn from me, that I could not wait to go back for day two.

Day two was filled with more great information and discussion about identifying the characteristics of CVI in children, and strategies to help the child overcome the effects of CVI. It was such a great experience to learn directly from Dr. Roman- Lantzy herself, to meet her, and to be able to share my own experience of living with the condition. Continuous learning is a great thing, and it’s even more fun when you can learn directly from the experts.

Taking My Own Advice

I’m a big proponent of people with vision loss using a white cane. It’s useful for their own safety, helping to detect objects that are in their path, and letting others around them know they might need assistance.

When I do presentations in the community, I sometimes get push-back from people are just starting to lose their sight. Often the biggest concern they raise is that they don’t want others to know they’re losing their sight.

I understand. I’ve been there.

I was provided with my first white cane in late 2005, and I used it all the time, because I knew I needed it. Back then my vision was poorer than it is now, so the cane was very important for me. As time went on and I regained some of my sight, I stopped using the cane because I felt I didn’t really need it all the time. I was still legally blind, still had challenges reading street signs and signage on businesses, and recognizing faces was still well out of my reach, but I made do. I did pretty well for the most part, and revealed my sight loss only when I felt I needed to tell someone, and the rest of the time I kept it to myself. I liked telling people it was, “ my little secret on the world.”

A few years ago, I had a job where I worked the evening shift and really didn’t want to be standing on the LRT platform at 12:30 a.m. holding a white cane because I felt it would bring me unwanted attention and possibly make me a target for someone who was looking to cause trouble.

I left that job in late 2016 and joined CNIB, the Canadian National Institute for the Blind. Despite being in a place that encouraged its clients to use the cane if they needed it, I kept my cane in my bag. I had gotten so used to not using it, I just didn’t feel I needed it.

Fast forward to November of last year. In the span of about two weeks, I had a few incidents where using the cane would’ve helped me, including tripping up some stairs that didn’t have good contrast, and stepping in wet cement.

I use an identification cane, which is a short, thin white cane that doesn’t tap the ground all the time, but I can use to check surfaces if I’m not sure of what’s in front of me. It would have been great the day I tripped up the stairs because I could’ve tapped to see exactly where the stairs were, and how high to step, but instead of being in my hand, the cane was in my bag.

It’s like going out fishing and not wearing a life jacket. Having the life jacket in the boat doesn’t help if the boat capsizes.

A week later I stepped into some wet cement while out for a walk, and that was the tipping point for me. Because I don’t tap the ground with my cane all the time, it would not have helped me feel the cement, but it might have caught the attention of the construction workers standing near by, and they could have stopped me from stepping into the cement.

Later that afternoon, as I sat cleaning the cement residue off of my shoes, it dawned on me that if any of our clients had told me stories about the things that had happened to me, my first question would have been, “Why weren’t you using your cane?”

That was my wake up call.

Since that day, I have been using my white cane any time I am out walking on my own. When I’m doing presentations in the community, I share the story of the cement incident as a way of demonstrating that the cane is not just for me, it’s for those around me so they can help me stay safe and hopefully keep my shoes clean.

Gaining a Level of Understanding

Knowing how much I can see, or what I see, is one of the hardest things for me to describe to someone. Whenever I’m asked if I can see a particular object or person, I’m happy to answer that question, but it would get very boring for them and for me, if somebody tried to ask me about everything I can see.  It’s hard for people to understand because they can’t see through my eyes. I’m not aware of any technology that will really let someone see the world through my eyes. You could put a camera on my head and it would show you where I’m looking and what I’m trying to see, but it still wouldn’t show you how well I see what’s in front of me.

Earlier this year I came across a fantastic app for my iPhone called the AIRA Vision Simulator. Which uses the camera on my phone to simulate a variety of different eye conditions. The app simulates about a dozen different conditions, some of which I hear about often from clients at work, like glaucoma, macular degeneration, and retinitis pigmentosa. The app also has a bunch of conditions I’ve never heard about. I’ve used this app in many of my presentations to show people what certain conditions look like, and I’ve suggested it to staff members in seniors’ residences to gain a better understanding of what some of their clients are dealing with.

I wish it had cortical visual impairment (CVI) in the app because then I could show it to friends and family to help them understand my condition better, but sadly, it’s not included in the app. Not long after I had downloaded the app my wife went through it and chose a condition that she thought might be close, based on how I’ve described my sight to her. The condition she chose in the app was a decent starting point, but there’s still no substitute for the real thing.

Recently, a friend told me one of the things she appreciated after reading my book was that it gave her a better understanding of what I can see or not. She told me that before reading it she didn’t always understand why I was struggling to do certain tasks, or why I seemed to take longer to do things.

She’s not alone. I was at the ophthalmologist’s office recently and it always makes me chuckle when I’m doing the visual field test and the technician checks in to see if I’m okay because I’m not pressing the button when I see the sparks on the screen. I always have to tell them, “I’m fine, I’m just waiting for the sparks to show up in areas where I’ll see them.” I can’t fault the technicians for this. I’m sure they don’t have access to my chart to know about my condition before testing me. I just find it funny because it happens on nearly every visit to the doctor’s office. Perhaps I should have them read my book.

I’m glad technology like the AIRA simulator app exists, and I’m delighted that at least one person in my life understands my world a little better after reading the book.

When in doubt though, it’s good to ask. During my presentations, especially to health care professionals and people who work with vision impaired clients, I always encourage them to ask questions and observe. In my experience, most people with vision loss, myself included, are okay with being asked if we’re able to see something you want to show us, or perhaps ask us how well we see an object you’re holding, and we’ll tell you. We don’t want to play 20 questions any more than you do, but asking us these questions when you’re trying to help us with something is very appreciated.

 

 

 

 

Happy Anniversary? It Depends on Your Perspective

Today, October 21, 2018, marks the 13th anniversary of the discovery of my sight loss. As I sat writing this post, it occurred to me that while the anniversary itself isn’t a happy one, great things can be found in what came out of it.

Obviously, if I chose to look at it with the view of what was lost, then yes, I suppose I could feel sad about it. I had to change careers, moving out of the operations side of the television business because I wasn’t able to see screens with the amount of detail needed to do the job well. I haven’t been behind the wheel of a car since 2005, and yes, I miss taking a long, leisurely, highway drive – that is, if you call cruising down the highway at 100 km/h leisurely. Plus, I have trouble seeing the faces of friends, family members, and anyone else I’ve met since October 21, 2005. If I want to look at my life from that perspective, then yes, I would be very sad.

But as those who knew me before that fateful day, and likely those who’ve met me since then will tell you, that’s not the way I look at the world. Over the past few months I’ve been looking back at all that has happened since the fall of 2005, and I really like my life.

I was in a Chapters store in Calgary yesterday, talking to customers about my book, and I said to more than one of them, “nearly everything I’ve done, and almost everyone I’ve met, including you, (the person in the book store) would not have happened if I hadn’t lost my sight. The fact that I was in the bookstore at all yesterday — was because of my sight loss.

Something else that changed about me all those years ago was my desire to read. For the first 30-plus years of my life, I was not a fan of reading, I found it boring. After losing my sight, I started listening to audio books and eventually gravitated toward e-books. At book signings, I like telling customers that one of the things I find ironic is that I can’t actually read my own book in print, but as an e-book, I’ve read it and many others because my phone reads the book to me. For yesterday’s book signing at Chapters, a friend who stopped by pointed out that the book shelf behind my table contained many of the books I’ve read by authors like Carol Dweck, Stephen Covey, and more. I felt like I was in great company.

Whether it’s at the book stores, through work, or wherever, I meet a lot of people in my day-to-day activities, and yet, I can’t recognize any of them. I can probably give you a general description of their height, general body shape, and possibly their hair colour, but that’s about it. But honestly, seeing their faces isn’t nearly as important to me as hearing their voices. Many of the people in my life are happy, caring people I enjoy spending time with, and that means more to me than knowing what they look like.

It was a few months after we discovered my sight loss that I realized I wouldn’t be able to stay in the job I had been doing in television operations, and maybe I didn’t have to change completely. Perhaps I could have worked in an administrative role in television, but I decided to go a different direction, and looking back on it, I’m glad I did. It wasn’t an easy switch. I had a lot to learn, and some roles I tried didn’t work out so well, but along the way, I met many more people, made some amazing new friends, and eventually my meandering path led me to a dream role doing community education for CNIB.

Unlike many people, I enjoy public speaking, and whether I’m talking about the great work we do at CNIB or giving talks about my book, I find being in front of people energizing. Do I get nervous? A little bit, sure. I learned years ago that if I’m not at least a little nervous before speaking in front of a group, somebody had better check my pulse because I might be dead.

So yea, I could be sad if I wanted to, but I’d rather not. To me, that would be a boring waste of a life. If you’ve been reading other posts on this blog, have read the book, or have seen me in my favourite blue t-shirt, you already know that I am on this planet for fun. The past 13 years have been a roller coaster of highs and lows, and one heck of an adventure. I have no idea what the next 13 years and more have in store for me, but if there’s fun to be had, I’ll find it.

 

Still Searching for Answers

Last month I posted about feeling a renewed sense of determination to see if I could do more to improve my eyesight.

Since then, I have written to experts who study CVI (Cortical Visual Impairment) in children to ask if they know anything about the condition in adults. I also did some searching of my own, and I’ve been to my family doctor’s office twice asking her to refer me to specialists in Calgary who I think might know something about my condition and ways to improve it.

The results that have come back from those inquiries have been less than satisfying so far. The experts I wrote to have yet to respond, but I’m still hopeful they will eventually reply to my emails.

My family doctor and one of her colleagues have been great. They both humoured me and have sent the referrals I requested, which I really appreciate. Unfortunately, one of those referrals, to a group that helps people recover lost function after a stroke, was rejected. The response back was that their office doesn’t deal with lost eyesight as a result of a stroke. It was suggested I should see an ophthalmologist instead. The other referral hasn’t come back yet, so I’m still hopeful on that one.

During one of the visits to the doctor’s office, her colleague tried to help with a bit of searching herself. She found a local clinic that specializes in vision therapy and gave me the contact info. I wrote to the clinic and told them a bit of my story, but unfortunately, my condition is out of the scope of what they treat.

In the past few weeks, as I’ve been searching for more answers, and possibly some help in the way of exercises I can do to stimulate the affected part of my brain, I’ve been surprised at how little attention seems to be paid to people who lose their eyesight as a result of a stroke. I know I’m not the only person who has lost his sight from a stroke, so I find it odd there isn’t more being done, whether it’s research or actual treatments.

A few weeks ago I watched a feature story on the news about one of the Humbolt Broncos hockey players as they followed his recovery. In the feature, it showed all the various rehabilitation being done to help him recover movement in the lower half of his body. As I watched that story, and saw all the different methods being used in his rehabilitation, the thought that came to my mind was, “why doesn’t that level of rehabilitation exist for brain injuries?”

While I wait to hear back on my other referral request, and possible responses to my emails, I’m going back to methods that I am fairly certain helped me in the past. I’ve reduced the level of magnification on my Zoom Text software from 4x to 3.5x. I found a website where I can play Tetris for free, which I do at least once a day, and I’ve also reduced the level of magnification on my CCTV for reading books.

In about four weeks I’ll be visiting the ophthalmologist, an appointment that was already scheduled, and as recommended, I’ll ask him more about my condition and see if he has any ideas.

One of my colleagues at work, who seems to be just as interested in this as I am, (although, certainly not for the same reasons) has mused that perhaps we’ll have to find a way to study this ourselves. I’m not sure how far we’d get on our own, but I’m hoping I might encounter a student who needs a study project and perhaps we can all work together on finding some answers.

There’s an old adage that says, “if you want a job done right, do it yourself,” and maybe that’s what I have to do – although if I meet a scientist or doctor who wants to help, I won’t say no.

Inspired to Try Again

Over the August long weekend I started reading a book called, The Brain That Changes Itself, because a friend said she thought I would find it interesting. She was correct in her thinking, and after reading only the first two chapters, I was not only hooked on the book itself, I started feeling energized by what I was reading.

The Brain That Changes Itself, written by Dr. Norman Doidge, and published in 2007, shares stories of people with a variety of brain afflictions and how, through the wonders of neuroplasticity, scientists were able to figure out the causes of the conditions, and in some cases cure them altogether.

As I read chapter five on my way to work a few days ago, I could feel some very strong emotions welling up inside of me. I finished the chapter just before reaching my stop and I could feel my emotions just below the surface. I walked into my workplace, down the hall to my office, closed the door behind me, sat in a chair with my back to the window, and cried.

The chapter I had just read focused mainly on people who had suffered strokes affecting various parts of their bodies, or in some cases, an entire side of the patient’s body, and the specialized treatment they received that had helped them regain some, or all of the function they had lost to the stroke. As I read those pages, my mind drifted back to my own stroke in 2005.

If there were treatments or exercises that could have been employed to help me regain some of my sight, why hadn’t the doctors or therapists said anything or tried something? That thought kept running through my head after reading the book that morning, and I was feeling a mix of sadness and anger.

I sat in my office chair and let the tears flow for a few minutes, and then I started to change gears. The book suggested that stroke patients older than me had achieved some level of success with their recovery, so I thought, “Why couldn’t I?” I dried my eyes and felt a renewed sense of optimism and determination to try and regain more of my sight.

If, as the book suggests, there is no age limit to a person’s ability to recover, then I’m going to try it. And I don’t plan to try it alone. Cindy is fully supportive of the idea, and I’ve started reaching out to people in the scientific community, as well as individuals or groups who know about cortical visual impairment (CVI) to find out if there are exercises or tasks I can do that might help me.

I have to admit, for the past ten years or so I hadn’t really been trying to regain my sight. After the doctors told me they thought I was done recovering, and once I reached a point where I didn’t feel I was improving, I settled for what I had, and that’s basically where I’ve been for the past decade. But now, like a cold case that gets reopened when new evidence comes to light, I’m back on the case. I don’t know if I can regain more of my vision or not, but it’s worth a shot. If it turns out that this is as good as it gets, so be it, at least I will know I tried.

So, thank you to my friend Tracy for recommending the book, and thank you to Dr. Doidge for writing it. I’ve got my “Just watch me” attitude on, and I’m ready to go!

Checking an Item Off the To-do List

Popularized by the movie of the same name, a bucket list is something many people seem to have, although for most people, it’s not a written list, but rather a mental series of items they would put on a list if they were to actually sit and write it out.

But what exactly is a bucket list?

A bucket list is a collection of things a person wants to do before he or she dies, or ‘kicks the bucket’, as the saying goes. I have a list too, but I prefer to call it a to-do list because I don’t see myself dying anytime soon.

So, what goes on a to-do list? Everyone’s list is different, but mine consists of things I want to see and experience, as well as places I want to visit in my lifetime.

Last week, I had the opportunity to put a check in the done column for an item that had been on my to-do list for many years. I wanted to visit the White Otter Castle in northwestern Ontario.

Last year, one of my cousins put out the word she wanted to host a family reunion in our hometown. While planning the trip, I decided it was also a great opportunity to try and visit the castle, since I’d be in that part of the country anyway.

The big question was how to get there? The castle is in a remote part of Ontario, so if I was going to get there, it would take some planning. I made a few inquiries and it was suggested I call Brown’s Clearwater West Lodge, a popular camping and fishing destination in the region.

I called and reached Carol, one of the owners, and told her what I had in mind. She said they could definitely help me achieve my goal.

After spending a few days with my cousins in Atikokan, Ontario, Laura, a staff member at Brown’s picked me up in town and drove me to the camp.

Before I arrived, Carol had told me someone from the camp would take me to see the castle, rain or shine. On the day of the trip, it looked like we’d see more rain than shine, so we decided to go an hour sooner than originally planned to try and beat some ominous looking storm clouds.

Mike, a long-time member of the Brown’s staff, was my guide for the trip. He and I set out for the hour-long boat ride to the castle. The water was a little choppy, which made me somewhat nervous, but Mike assured me we’d be fine. To be honest, I think he drove a little more slowly than normal to keep this city kid calm!

On the other side of Clearwater lake, Mike loaded the boat onto a waiting truck and trailer for the portage to White Otter lake. That was much different than the portages I did on canoe trips when I was younger. Back then, we had to carry the canoe on our shoulders over land to get to the next lake. On this day though, having a truck and trailer available made the over-land part of the journey much easier. Mike backed the trailer into the water and soon we were crossing the much calmer waters of White Otter lake.

It didn’t take long before the red roof of the castle came into view, and my anticipation only grew as we got closer to the shore.

A short time later, I was finally able to set foot inside the awe-inspiring structure that has been sitting on the shore of White Otter lake for more than 100 years. It was a childhood dream come true. I walked through every room, on all three floors, and climbed the steep, narrow stairs to the fourth level at the top of the tower.

About 30 minutes later, having seen every level and taken dozens of pictures, it was time to begin the boat ride back to camp. The threatening weather never did materialize, which made the day even better.

Seeing White Otter Castle now has a check mark beside it on my to-do list. I want to thank Carol, Barry, Mike, and Laura, from Brown’s Clearwater West Lodge for making this dream happen.

Time to review the list and see what I want to accomplish next.