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Ask Don’t Grab

I had a disturbing encounter today. My caregiver dropped me at the hospital curb for Physical therapy and as I was walking through an automatic door I’ve walked through a million times, I felt someone gently grabbing my arms from behind at the same time I heard a male voice saying “you’re okay….just go a little to the left”. It really startled me and I tried to see where the voice was coming from, but the man was totally out of my field of vision. I guess to him, it looked like I was going to walk into the wall, but I wasn’t. I was mostly just trying to get through the large automated sliding door without hitting anyone with my cane. The man continued to hold onto my arms and “helped” me until I got to the elevator. It was very odd as I know he meant well, but grabbing me from slightly behind me scared the beggeezes out of me as it made me realize how vulnerable I am. It also strikes me how little people understand about the degrees of visual impairment and how much work we must do in order to educate the general public on how to interact with people with visual impairments. But how do we communicate this?

I’m probably over analyzing the incident, but it got me thinking about what I would do if his intentions were not good. I’m pretty small and although I’ve gotten much stronger through PT, the fact is that I have had 4 spinal fusions and 3 shoulder replacements leaving me pretty weak compared to most people. Add that to the diminished eyesight and I’m trying not to be scared to walk in public places by myself. I am left now with trying to figure out what I will say to the next well-meaning stranger to let them know I am okay without being rude. I posed this question in a RP group I participate in and I am anxious to see what advice others in my position have.

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UCLA Jules Stein: ERG Testing Day One

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I Woke up with Lupus and Went To Bed Visually Impaired

I awoke today with Lupus. By the time I went to bed, I had been diagnosed with a very rare form of Sever Eroding Osteoarthritis (incorrectly diagnosed as Lupus in 1989). Oh, and for extra fun, I am also going blind, but the docs don’t know the cause yet. (Yey me!?/*&$%@^)

Follow My Finger

Our next appointment was with the neurologist that I was referred to by the orthopedic surgeon, Dr. H. The neurologist Dr. M. said it would only be a half hour appointment since he squeezed me in. He is testing me for Myasthenia Gravis but is 95% sure I don’t have it. He also ordered a cervical spine CT to see if my issues are caused by compressed spine. The really scary part is that I  failed the part of the neuro exam that looks at visual field. He had me cover my left eye and my right side was unable to see anything beyond a tunnel. It’s like looking at the world through a tunnel (hence why they call it tunnel vision). It explains the car accidents, the falling and bumping into people and things.

I was sent immediately for an ophthalmology exam. Ophthalmology is at another campus so we had to get a cab to get there. I saw a Fellow; Dr. A. and she said my intraocular pressure was good; indicating I don’t have glaucoma. That’s the good news; the bad news is, she has no idea what it is. She scheduled me for a visual field test tomorrow and to consult with her attending, Dr. S.

Today was emotional to say the least; my epiphany in the neuro exam was more like an emotional breakdown. All I keep thinking is “I’m screwed”. My mom keeps telling me not to worry until I have to but I can’t help how I feel. I’m petrified.