Journal entry by Heidi Kim —
Over the last few months, we've learned a lot about Alex's new vision. Alex has Homonymous hemianopia with macular sparing. This is a very textbook example of occipital lobe damage. Google can provide many examples. Alex sees approximately 5 degrees on the right. Because this is brain damage, not eye damage-- this is in both eyes. This results in a significant loss of peripheral vision.
Still, there are plenty of positives. Because of those 5 or so degrees, he is able to read, write, and not run into things in normal situations. This does, however, present a challenge for some very classic daily living things...driving and crowds. In older people, sometimes, this causes anxiety or fear in groups of people. Luckily, Alex doesn't have any ill mental effects from the loss of vision.
So first driving-- The state of Maryland has a special Low Vision driving program which will allow Alex to submit an extensive packet to the state medical board, have 20+ hours with a driving trainer, and ultimately receive a license. This license will have a few restrictions -- such as daytime only. With a year free of accidents or tickets, he can petition to have the daytime only restriction removed. Alex is just starting on this all.
The second piece is daily living. Alex is in the process of getting fitted with Peli- lenses http://chadwickoptical.com/peli-lens-2/ . These glasses are normal glasses (in his case 20/20), with two special prisms. These don't fix his vision, but it creates a strip above and below his midline on one side where he can see an extra 25-35*. He has only tried temporary prisms so far. The reception of the temporary prisms was lukewarm. However, the real ones, are clearer, don't fall off, and you can see farther with. They work very well if someone/something is relatively large (people, cars). They don't work for things he would otherwise notice by looking at, things behind him, things too small to show up in the prism because they aren't tall enough to extend into the prism, or things right in the midline. **The picture is his chosen glasses before prisms have been added**
Alex is also in a clinical trial thru Scheie Eye Institute at UPenn in Philadelphia. We are excited about the possibilities of this, but understand it is no guarantee. https://clinicaltrials.gov/ct2/show/NCT03350919?recrs=a&cond=Hemianopsia&cntry=US&rank=1
Still, there are plenty of positives. Because of those 5 or so degrees, he is able to read, write, and not run into things in normal situations. This does, however, present a challenge for some very classic daily living things...driving and crowds. In older people, sometimes, this causes anxiety or fear in groups of people. Luckily, Alex doesn't have any ill mental effects from the loss of vision.
So first driving-- The state of Maryland has a special Low Vision driving program which will allow Alex to submit an extensive packet to the state medical board, have 20+ hours with a driving trainer, and ultimately receive a license. This license will have a few restrictions -- such as daytime only. With a year free of accidents or tickets, he can petition to have the daytime only restriction removed. Alex is just starting on this all.
The second piece is daily living. Alex is in the process of getting fitted with Peli- lenses http://chadwickoptical.com/peli-lens-2/ . These glasses are normal glasses (in his case 20/20), with two special prisms. These don't fix his vision, but it creates a strip above and below his midline on one side where he can see an extra 25-35*. He has only tried temporary prisms so far. The reception of the temporary prisms was lukewarm. However, the real ones, are clearer, don't fall off, and you can see farther with. They work very well if someone/something is relatively large (people, cars). They don't work for things he would otherwise notice by looking at, things behind him, things too small to show up in the prism because they aren't tall enough to extend into the prism, or things right in the midline. **The picture is his chosen glasses before prisms have been added**
Alex is also in a clinical trial thru Scheie Eye Institute at UPenn in Philadelphia. We are excited about the possibilities of this, but understand it is no guarantee. https://clinicaltrials.gov/ct2/show/NCT03350919?recrs=a&cond=Hemianopsia&cntry=US&rank=1
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