Sometimes Ron or one of my daughters' will ask why or how something affects me. I always feel like having those I live with understand my situation better is a good thing, so I try to explain. There are some times in public situations when I don't bother. Thinking about raising awareness about vestibular disorders, which millions of people suffer from, I feel like some understanding beyond my family would be a good thing as well. Besides briefly mentioning a couple things I don't do, I'm going to talk about how some things affect me, and what helps me. There are many activities that are affected by my conditions, but I'm only going to cover a few right now. I should also say that this is my experience. Like many chronic conditions, vestibular disorders are very individual, so these are only my experiences.
First, some background. I don't completely understand the vestibular system, and to be honest, I think a lot of doctors don't either. I don't mean that doctors are incompetent regarding vestibular stuff. But in my experience most doctors only understand part of the system. Even though Chicago is a huge metropolitan area, there's only one clinic, run by two neurologists who specialize in balance issues. The vestibular system involves the eyes, ears and brain, but also really your whole sensory system. Which means that touch, and how you process info also matters. I think this is a big reason why many medical professionals don't get the full picture - there's so many potential pieces involved. I say potential because there's a number of different disorders - Migraine Associated Vertigo (MAV), Menieres and Benign Paroxysmal Positional Vertigo (BPPV) are three more common ones that a lot of people have heard of - but there are others as well. And a lot of these disorders come in funky combinations. So it gets pretty complicated. Anytime I hear about research, and efforts to educate medical professionals and speed up diagnosis, I'm happy.
So back to me. I have MAV, but I also have a vision disorder called Binocular Convergence Insufficiency (BCI). This disorder is pretty common, and actually fairly easily treated with little kids. It means that your eyes aren't working together to send info in a coordinated way to your brain. This causes problems. Vision therapy fixes it for kids. I'm pretty sure I had this problem when I was a child, but it was never diagnosed, and when I got vertigo, possibly because I already had the undiagnosed problem, my BCI was affected in a major way. Dealing with BCI as an adult with a compromised vestibular system is a lot more complicated. I also have other vision issues as well, which all relate to the vestibular system.
Driving is something that most adults do without too much thought after a while, but there are so many pieces to this activity. Manipulating the car, looking at the dashboard, looking at whatever is going on around you. So this is something I just don't do. I also don't go to movie theatres. The idea of looking at a huge screen, with surround sound in a dark theatre is definitely more than I can handle right now.
I am able to take walks now, including walking our dog with Ron or Cara or Leena. I like to do it with one of them so that if Cosmo gets too energetic I can hand over the leash. Also, whoever I'm walking with stays on the sidewalk and is more predictable in their behavior than Cosmo. I can write now, though I don't do a great deal of it, and writing on a plain piece of unlined paper is easier than managing to follow lines on, for example, a check.
Using a computer is a bit complicated. I use the translation feature of Google to listen to documents, like listening to this to make sure it makes sense! I have a software program call Dragon Naturally Speaking installed on my computer. This allows me to use voice recognition if I want to compose something and I don't want to deal with keyboarding. It's a wonderful tool but has its' limitations, so I much prefer being able to keyboard which I can now do. I always, however use it to scroll to the end of a document. Watching stuff scroll by is very difficult. Watching certain kinds of movement - especially if it's unpredictable or unexpected - makes me dizzy. When I'm on Facebook, I can do a certain amount since I am controlling the speed of the mouse, but I still have to take breaks. Basically, if a person isn't moving and sees something moving, the vestibular system has a lot more to process, and sometimes this processing gets confused. At least that's the extent of my understanding, and I think is the easiest way to explain it.
Reading is also a work in progress. If I'm on the computer, I use Google Translate frequently, and it's wonderful. I also sometimes zoom the screen to enlarge the font size. The down side to this is that a sentence takes up more room on the screen, which means I have to look from side to side - tracking - more. So I'm trying more and more to use my glasses. Even though glasses are incredibly common, having something on my face that changes how the light enters my eyes, and focuses images differently is both a help and also a challenge for me. I now read the comics, which is something I really missed for quite a while. I sometimes will read a little bit in a newspaper or magazine. A computer screen is obviously well lit, but also has glare, so I need to take breaks. This might mean turning away from the screen, or it might mean getting up and moving around. It might also mean doing something completely different for a while.
First, some background. I don't completely understand the vestibular system, and to be honest, I think a lot of doctors don't either. I don't mean that doctors are incompetent regarding vestibular stuff. But in my experience most doctors only understand part of the system. Even though Chicago is a huge metropolitan area, there's only one clinic, run by two neurologists who specialize in balance issues. The vestibular system involves the eyes, ears and brain, but also really your whole sensory system. Which means that touch, and how you process info also matters. I think this is a big reason why many medical professionals don't get the full picture - there's so many potential pieces involved. I say potential because there's a number of different disorders - Migraine Associated Vertigo (MAV), Menieres and Benign Paroxysmal Positional Vertigo (BPPV) are three more common ones that a lot of people have heard of - but there are others as well. And a lot of these disorders come in funky combinations. So it gets pretty complicated. Anytime I hear about research, and efforts to educate medical professionals and speed up diagnosis, I'm happy.
So back to me. I have MAV, but I also have a vision disorder called Binocular Convergence Insufficiency (BCI). This disorder is pretty common, and actually fairly easily treated with little kids. It means that your eyes aren't working together to send info in a coordinated way to your brain. This causes problems. Vision therapy fixes it for kids. I'm pretty sure I had this problem when I was a child, but it was never diagnosed, and when I got vertigo, possibly because I already had the undiagnosed problem, my BCI was affected in a major way. Dealing with BCI as an adult with a compromised vestibular system is a lot more complicated. I also have other vision issues as well, which all relate to the vestibular system.
Driving is something that most adults do without too much thought after a while, but there are so many pieces to this activity. Manipulating the car, looking at the dashboard, looking at whatever is going on around you. So this is something I just don't do. I also don't go to movie theatres. The idea of looking at a huge screen, with surround sound in a dark theatre is definitely more than I can handle right now.
I am able to take walks now, including walking our dog with Ron or Cara or Leena. I like to do it with one of them so that if Cosmo gets too energetic I can hand over the leash. Also, whoever I'm walking with stays on the sidewalk and is more predictable in their behavior than Cosmo. I can write now, though I don't do a great deal of it, and writing on a plain piece of unlined paper is easier than managing to follow lines on, for example, a check.
Using a computer is a bit complicated. I use the translation feature of Google to listen to documents, like listening to this to make sure it makes sense! I have a software program call Dragon Naturally Speaking installed on my computer. This allows me to use voice recognition if I want to compose something and I don't want to deal with keyboarding. It's a wonderful tool but has its' limitations, so I much prefer being able to keyboard which I can now do. I always, however use it to scroll to the end of a document. Watching stuff scroll by is very difficult. Watching certain kinds of movement - especially if it's unpredictable or unexpected - makes me dizzy. When I'm on Facebook, I can do a certain amount since I am controlling the speed of the mouse, but I still have to take breaks. Basically, if a person isn't moving and sees something moving, the vestibular system has a lot more to process, and sometimes this processing gets confused. At least that's the extent of my understanding, and I think is the easiest way to explain it.
Reading is also a work in progress. If I'm on the computer, I use Google Translate frequently, and it's wonderful. I also sometimes zoom the screen to enlarge the font size. The down side to this is that a sentence takes up more room on the screen, which means I have to look from side to side - tracking - more. So I'm trying more and more to use my glasses. Even though glasses are incredibly common, having something on my face that changes how the light enters my eyes, and focuses images differently is both a help and also a challenge for me. I now read the comics, which is something I really missed for quite a while. I sometimes will read a little bit in a newspaper or magazine. A computer screen is obviously well lit, but also has glare, so I need to take breaks. This might mean turning away from the screen, or it might mean getting up and moving around. It might also mean doing something completely different for a while.
As I said in the beginning, Vestibular Disorders are experienced by a great many people. Whenever I share my experiences, though I'm reasonably sure others have similar experiences, I am only relating my own hoping to shed a bit of light for a little bit more understanding. And I'm very grateful that the Vestibular Disorders Association (VEDA) exists because people like me with these disorders need an organization working on our behalf. We need a public voice to push for awareness, and research so that diagnosis becomes a reality, preferably not after months or even years of waiting and suffering.
