Tag Archives: Ophthalmology

Adaptations and Services I’ve Used to Overcome My Disabilities

Last year, I wrote a post describing my limitations in as much detail as I could then. I got the idea from a disability discussion E-mail list that I was a member of in like 2004. The next discussion topic on the list was to go into adaptations you’ve used to overcome your limitations. Today, I will share about these.

As a toddler, I seem to have gotten by mostly without adaptations. I did have low vision, motor ipairments and was socially a little immature, but nothing too dramatic. I did have many colds until my tonsils and adenoids were removed at age four. I also saw a lot of specialists. For example, when I was about four, I was seen by some kind of rehabilitation physician because I neeed a cast on my left foot. I got lots of physical therapy and other early intervention too. However, I attended a regular preschool and Kindergarten until I fell apart in the spring of my second year of Kindergarten. Kindergarten always takes two years here, but I didn’t finish my second year because of needing to go to a special school that didn’t have a Kindergarten. Instead, I started in first grade early.

At around this age, I mostly got adaptations for my fine and gross motor impairments. For example, I got adapted scissors to be able to cut shapes out without needing to exert too much strength. I also got a large tricycle funded through the local disability services when I was about eight. I’m confused as to where my parents got the necessary doctor’s signature to get this mobility equipment. I mean, I must’ve seen a rehabilitation physician to declare that I had a severe enough mobility impairment, but I wonder whether the ophthalmologist agreed I had enough vision to cycle safely.

Of course, I did have some adaptations for my vision at this point too. I started reading large print in first grade. In fact, I had taught myself to read at around age five with large rub-on letters my Mom would put into little books for me.

By the end of first grade, I had to learn Braille because my vision was deteriorating. I got long keys on my Braille typewriter so that again I didn’t need to exert as much strength. For reading, at first the teachers would provide my Brailled assignments with double line breaks, because I had a hard time with it otherwise. Eventually, I could read Braille just fine, but it didn’t become my preferred reading method until I got a computer.

I still did use the vision I still had. In fact, I stll do, even though I only have light perception and a little light projection left. At age ten or eleven, I got a handheld magnifier. I remember using it to see the large print atlas we had in fifth and sixth grade, even though I really couldn’t make out anything on it.

By the time we moved across the country when I was nine, my parents stopped taking me to medical specialists. There was nothing to be done about my eyesight getting worse and worse and I no longer needed specialist care for my other disabilities. That is, this is my parents’ version of the truth. I think they may be right but there are some things that just don’t add up. Like, from age twelve on, I was accused of deliberately having an odd posture. Guess what? At age fifteen, the school doctor discovoered I had scoliosis. I had to have physcal therapy again.

At age thirteen, I started regular secondary school. I was functionally blind by this time and did my schoolwork on a computer with Braille display. I also got tactile graphics for the STEM subjects and tactile maps for geography. I also got lots of other nifty math tools, most of which I could barely use. I couldn’t even use tactile graphics much at all.

Like I said, I was discharged from all medical specialists at around age nine. At nineteen, when I graduated secondary school, I went back into care at the rehabilitation center for the blind. Besides orientation and mobility, housekeeping and other blindness-related training, I had to get physical therapy again for my scoliosis.

In 2007, I was finally diagnosed with autism and landed in the psychiatric hospital (not at the same time, mind you). My current psychiatrist remarks that I got little in the way of treatment there and she’s right. At first, it was thought I just needed to be moved into a group home and all would be fine, then when I got my last psychologist, it was decided I just needed a good kick in the behind and to move into independent livng as soon as possible.

Now that I’m 31, I don’t really use many adaptive devices other than my Braille display and my white cane, the latter of which I use more for stability than for its intended purpose. My iPhone has a built-in screen reader and I guess it won’t be long until NVDA is almost as good as JAWS for a computer screen reader. NVDA is free and open source, whereas JAWS costs several hundreds of dollars (that thankfully currently health insurance pays for).

I said eye doctors goodbye for good (except when I need a note to say I’m blind) in 2013 when my last chance to get a little sight back failed. I still see a psychiatrist, though my medcation regimen hasn’t changed in years. I have a community psychiatric nurse, whom I see biweekly for dialectical behavior therapy. As for my mobility, I’m due to see my GP on Wednesday to ask about this and about any treatments or adaptations that could help me improve.

Naptime Natter

Futility, Quality of Life, and Medical Care: A Tale of Two Patients

Over at The Squeaky Wheelchair, I found a sad story (with a happy ending) about a child with a neurodevelopmental disability and a heart defect being denied a heart transplant based on lies and misconceptions about his perceived quality of life. I do not know anything about Maverick’s syndrome or the risks it causes in cases of heart transplantation, so there is still a chance thAT Maverick’s parents sought to minimize the risks of infection in order to make him a more hopeful candidate. Then again, the doctors were making up different stories about why Maverick would be denied a transplant, and his neurodevelopmental disability apparently did play a large part. This is sad, because, unless truly the risk of infection or tumors is increased with this syndrome, the improvement in quality of life for Maverick would be at least as much as that for a non-disabled chhild undergoing heart transplantation.

I feel compelled today to write about the opposite attitutde, one where improvement matters at least as much as perceived normalcy of outcome. My story did not have a happy ending, but that was not the doctors’ fault. The story involves my being approved for cataract surgery this year. This is not as complex a surgery as a heart transplant of course, but it does prove that some doctors are willing to take risks (again, not as big risks as with a heart transplant) for an outcome that may seem futile to non-disabled people. Those who have visited the various places on which I’ve blogged over the past half a year will know the facts of my story already.

I was born three months premature and developed an eye condition that’s relatively common in premature babies. From this condition, I have been legally blind, with as best a visual acuity of about 20/400 to 20/800 with a restricted field of vision, all my life. When I last went for a regular eye exam at age nine, my visual acuity had dropped to the ability to see someone’s hand move at measuring distance. I was considered functionally blind.

I developed a cataract in my only eye which had useable vision at aroung age fifteen. By age seventeen, it had grown so much that I’d lost all but light perception. I never sought treatmetn, assuming that no doctor would be willing to remove the cataract given the perceived outcome. Until 2013 that is. I decided I wanted to know for sure, and if the doctors at Radboud University Medical Center would decide against surgery, that’d be fine with me. (Of course, the decision was a joint one ultimately, but as Maverick’s case shows, sometimes doctors deny care based on perceived futility, and they have a legal right to.) I went through eye exams and my old records were read. Then the doctor gave me the facts – the best outcome would be hand motion vision but there was no way of knowing whether I’d get any improvement until after surgery and there was a risk that I’d lose my remaining light perception. He gave me the choice and I went for surgery. Unfrotunately, it did not result in any improvement. Now please realize that hand motion vision, as I said, is considered useless by most. This is understandable, but from a disabled perspective, and the doctor was the first to actually say so, it is a significant improvement from no sight at all. The outcome may objectively have been futile, but subjectively, it could’ve been significant.

Now let’s go back to Maverick’s story. I am not one to say that any life is better than death, but this is not up to a doctor to decide. Only the patient (and I’m still unsure about the parents in cases of children) can know whether life is valuable to them. Doctors can advise on possible risks and outcomes, and sometimes the risks of the treatment failing outweigh the benefits (as may’ve been the case had Maverick’s condition in fact led to more infections or tumors). As I said, doctors have a right to decide treatment is futile. I could’ve understood this in my own case, and as I said if Maverick truly ran an increased risk of complications. This is quite different from considering a life not valuable because it is lived with disabiities that are irrelevant to the conditin being treated.

Eye Surgery Was Yesterday

Yesterdy was my eye surgery. I got onto the unit half an hour early and was admitted over an hour late because the person before me required complex care. I would’ve been operated on at 10:00 AM but wasn’t until around noon. Technically, the operation was somewhat of a success and somewhat of a failure. The ophthalologist was able to remove the lens, but not implant an artificial lens. She told my husband that for color vision, which I was mostly hoping for, this would not make a difference.

Functionally, well, what can I say? I went to get checked up today and was able to see the flashlight on the first try and also see the blue light used for checking eye pressure. Prior to surgery, the optometrist had had to move the light closer two times before I could see it and I didn’t see the blue light. To be honest, I knew the blue light was blue; I could not actually see that this time either. The doctor checked whether I could see what direction the light came from (light projection) or whether I could see her hand move right in front of my eyes, but I could see neither. I had swelling on my cornea, so it could be once this clears up I will get some further improvement in vision. Overall though, I feel that functionally surgery mostly failed, and I reckon the cataract specialist would never have put me on the list had he known this tiny improvement would be all I got. I do hope once I’m all recovered, I can close this chapter and finally accept the fact that I will always be completely functionally blind.

Eye Surgery

I’ve been legally blind all my life from a condition called retinopathy of prematurity. This condition is i itself not degenerative, but it often leads to retinal detachment due to scar tissue pulling on the retina. In addition, cataracts and glaucoma may develop. In 1993, I developed a cataract on my right (worse) eye. The cataract specialist felt it would be useless to operate on, so my own retina specialist removed the lens, but didn’t implant an artifical lens because I was either too young or she didn’t have the ability to perform this procedure. In around 1998, I lost what little vsion I had retained in that eye due to a retinal detachment.

In 2003 or 2004, I developed a cataract on my left eye. I went to an eye doctor for somethigng different (suspected glaucoma, which was then ruled out) in March of 2004. While we were there anway, my father asked the doctor whether cataract surgery would make any sense. The doctor was vague, saying if I thought I would regain some sight he might be willing to put me on the list, but he wouldn’t recommend it really. I was raised with the idea that I had to accept blindness and, from my last surgery in 1994 on, my parents treated me like I had no useable vision, so I decided I shouldn’t pursue surgery.

But the thought ate at me: what if surgery could restore some of my sight? In 2011 or 2012, I started discussing this with the nurses at my former institution, and they advised me to seek out a medical opinion. Earlier this year, I took up the courage and asked my GP to refer me to an eye doctor at the city’s university medical center. When there, the doctor proposed an ultrasound to look at the condition of my retina and optic nerve. He also requested my records from the hospital I’d been going to in the 1990s. Then he sent me on to the cataract specialist.

The cataract specialist said there was really no way of knowing what the actual functional outcome would be. Like, I had no retinal detachment on my left eye and my optic nerve was fine, but that didn’t mean I’d actually gain any sight back per se. I read up on some research and found that structural condition of the retina really does not say everything about visual function. The cataract specialist was willing to put me on the list for surgery, and I came in hoping to get surgery, so I consented to this. There is some risk that I’ll get bleeding or a retinal detachment due to surgery, but given that I only have a minimal bit of light perception now (being able to discern daylight from night time but not much else), I’m willing to risk this.

Surgery is next Monday. I’m kind of nervous. I guess I’d feel guilty if there were no improvement. Then again, I’d at least know that this was the last thing I could do for my sight then. I feel if there’s going to be no improement and I remain totally blind, I will be able to close this chapter sort of. The doctor had some hope that I would regain hand motion vision, which I had in the 1990s, but I am more pessimistic. If I will be able to see colors and very large objects, that would be absolutely great.