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Worsening vision and depth perception (adult CP)

liayn85liayn85 Posts: 31Member Connected
edited November 2016 in Cerebral Palsy
Sorry that this is long, but I needed to explain in detail. Basically I am looking for anyone who can relate and/or has a neuromuscular disorder and has reversed vision problems. 

I have hemiplegia on the entire right side of my body also affecting my left eye. Original diagnosis was severe but I live a relatively mildly impaired life. I am 31, so I am experiencing the premature aging as well as a greater impact of stressors. 

I have exotropia affecting my left eye, causing a misalignment due to a weakened muscle which means I don't have binocular vision. This causes a loss of depth perception, impaired ability to fully take in 3D objects, and fuse a single "picture" of an object. My brain is essentially sent two different pictures, one deviating outward, and it scrambles to impossibly adjust and focus. 

Recent stress of of the past few years have lead to the possibility, which was overcome for now with exercise of the weak eye, that sometime down the road my brain may "shut down" the left eye and I would only be able to see out of the unaffected right eye. 

I am currently not driving because I have moved, and when I do drive (which I have permission to do from my eye doctor) I am super careful. I am just extremely worried as sometimes scary and sometimes ridiculous things happen to me. Tonight I had to explain to a friend, all the while extremely embarrassed (I am even slightly embarrassed to confess it here) why I confused a moving white plastic bag with a white cat that was coming after me. To make it worse, because I was startled, I got a painful cramp in my arm.  

I have probably had this all my life, but I have been living with this post-diagnosis for nearly 25 years. I definitely know it is worsening, but I do not remember it affecting me this much as a child, and although I know it can be made better, it feels irreversible and makes me feel overwhelmingly awkward and scared of a mishap, more so than my other CP traits like the limp or hand weakness. There is a risk of depression (up to 30%) associated with this condition. 

I am wearing a patch when I can, and I am doing exercises and training myself to use my left eye, which I have done since diagnosis. I normally wear contacts but I have prisms in my glasses which force left eye use. My prescription has NOT worsened over the past few years though the prism the dr put in has been strengthened to keep the eye in check more. I have had tests done as well as a sort of X-ray for the eye following stress and weakness-related eye migraines. I am doing as my doctor says. 

I have been able to smooth out any serious stressors, but naturally things come up and this is stressful enough in itself. It used to only be a serious problem when I was tired, but now it is actively ever present. I feel like my family does not understand, my mom has described it as something quirky that makes me me, and I am awkwardly explaining away to friends something ridiculously complex, unusual, and goofy. It makes my disequilibrium and limp worse. 

Once again, if anyone with CP can relate or has improved any worsened vision problems, please let me know. I feel like things are worsened when I wear my glasses, but the glasses are needed as a break from the contacts, and my eye doctor, who has experience working with neuromuscular problems, has insisted on the stronger prism. Surgery can not improve this and I would want to do things the natural way. Thanks. 

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