Low Vision: Let's share about coping day to day

Posted by Don Higgins @dsh33782, Mar 5, 2019

Hello, I just joined. I have low vision due to glaucoma for over 25 years. I no longer drive, need extra light to read anything, and have a lot of trouble with glare. At age 38 in 1983 I was diagnosed with nuclear cataracts at Bascom Palmer and had natural lenses removed without implants due to young age. In 1988 and 1989 I had detachments in both eyes with buckle surgery. Then came the glaucoma. I’m now on 4 different drops – dorzolimide, combigan, lumigan, and rhopressa to keep pressure at 13-14. When the drops quit working, it will be time for more surgery to put in drains. At last visit to Bascom Palmer, they through GATT surgery would probably work. I have lost all central vision in left eye, and have just lower half of field left in right eye but still 20-40 with perfect lighting. I wonder if I can get an IOC thrown in to improve vision for my remaining 15 years or so?

Are there other members of this group interested in discussing “Low Vision” and what it means in terms of coping with day to day challenges as well and the underlying medical causes such as macular degeneration or long term glaucoma as in my case. Today I came across this interesting annoucement about an aware for research in the field of low vision: (Since I can’t post link here is the full title of article you can find via Google: ARVO Announces Oberdorfer Award for Low Vision Research Winner
Distinguished award presented to exceptional low-vision researcher “

I would be very interested. I have just beginning macular degeneration, but I have a macular pucker from a vitriol detachment when rear ended in a MVA. The macular pucker gives me double vision in my right eye. Can you post the title or authors of the research study? Thank you very much.

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@treyaj

I would be very interested. I have just beginning macular degeneration, but I have a macular pucker from a vitriol detachment when rear ended in a MVA. The macular pucker gives me double vision in my right eye. Can you post the title or authors of the research study? Thank you very much.

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Hi Treyaj. I have had glaucoma for over 25 years now following nuclear cataracts at 37 and then 2 detachments with buckles. I have lost central vision in left eye and have about half the field in right and have lots of trouble with glare due to apakac glasses. The recipient is Pearse Keane, PhD

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@dsh33782, do you plan to go ahead with the gonioscopy-assisted transluminal trabeculotomy (GATT)? What is IOC?

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Colleen I am still holding pressure at 13-14 with the 4 different drops. As soon as that quits working I expect I will want to go ahead with GATT first in my bad eye as trial and then in the better eye if all goes well. IOC was supposed to be IOL for inner ocular lense. Thanks for catching my error.

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@dsh33782. I noticed that you tried to include a link in your message. You will be able to add URLs in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post was not spam. Please allow me to post it for you.
– ARVO Announces Recipient of Ludwig von Sallmann Clinician-Scientist Award https://www.arvo.org/About/press-room/ludwig-von-sallmann-clinician-scientist-award/

I'm grateful that you got this discussion started on Connect about living with low vision. I'd also like to bring in other members, like @pedie @bonitav @peach414144, who might be interested in sharing about day to day challenges and adaptations they've made.

Don, what has it been like for you to give up driving? That must've been a big adjustment.

@treyaj, do you have constant double vision in your right eye or does it change throughout the day?

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@colleenyoung

@dsh33782. I noticed that you tried to include a link in your message. You will be able to add URLs in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post was not spam. Please allow me to post it for you.
– ARVO Announces Recipient of Ludwig von Sallmann Clinician-Scientist Award https://www.arvo.org/About/press-room/ludwig-von-sallmann-clinician-scientist-award/

I'm grateful that you got this discussion started on Connect about living with low vision. I'd also like to bring in other members, like @pedie @bonitav @peach414144, who might be interested in sharing about day to day challenges and adaptations they've made.

Don, what has it been like for you to give up driving? That must've been a big adjustment.

@treyaj, do you have constant double vision in your right eye or does it change throughout the day?

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Constant. Drs. Have told me it is from my brain concussion/brainstem concussion and vitriol detachment, that caused a macular pucker. I still have zigzag flashes of light in this eye. Last week about 4 times. Also last week this eye had eyelid twitching, spasms. for two days. I just tolerate it all. No other answers.

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@colleenyoung

@dsh33782. I noticed that you tried to include a link in your message. You will be able to add URLs in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post was not spam. Please allow me to post it for you.
– ARVO Announces Recipient of Ludwig von Sallmann Clinician-Scientist Award https://www.arvo.org/About/press-room/ludwig-von-sallmann-clinician-scientist-award/

I'm grateful that you got this discussion started on Connect about living with low vision. I'd also like to bring in other members, like @pedie @bonitav @peach414144, who might be interested in sharing about day to day challenges and adaptations they've made.

Don, what has it been like for you to give up driving? That must've been a big adjustment.

@treyaj, do you have constant double vision in your right eye or does it change throughout the day?

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Colleen, giving up driving was challenging at first as I felt closed in and more dependant on others to get anywhere. Once I signed up with Uber and tried it a few times, that made me much more comfortable as I can go anywhere and get picked up anywhere quickly. Perhaps the more challenging part of low vision for me is the problem of not being able to recognize people or their facial expressions each across the table unless the lighting is just right. Glare is a constant problem and I always carry a pen flashlight all the time now in order to read anything as it requires a lot of direct light plus contrast. I find that I am not as interactive as I used to be since I can't be sure who people are or what they are doing unless I'm face to face.

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@colleenyoung hi Colleen, thanks for the advice to join this group. I am new to this group but have been participating with other groups on this site. I have corneal dystrophy, both Fuchs which appears to be in long term remission and anterior basement membrane corneal dystrophy/map dot fingerprint, which is most definitely not in remission. I have multiple medical problems which are life threatening and greatly impact the quality of my life. The dystrophy had been under reasonable control until recently, and as is typical of this type, destabilized rapidly. With all the other medical problems, I feel tired, discouraged and frustrated. I have excellent medical treatment and am fortunate in that aspect. But my home is beginning to feel like an extension of a hospital with all the equipment and prescriptions. Both eyes are currently being treated with various drops and ointments as well as bandage lenses. I am also quite astigmatic, near sighted and I have strabismus. My vision varies, sometimes blurry, light sensitive some double vision, etc. I have to be careful not to hurt myself due to low vision. I don’t tell people about my eye problems because I have a number of other medical problems which are more obvious and I don’t want my life to revolve around all these medical issues. When the dystrophy flared up a few days ago, I feel like I’m revisiting frustration and a feeling of being overwhelmed. I would so like my life not to revolve around medical issues! Any feedback or sharing of experiences would be great. I thank all of you in advance for reading my story and any responses. Rhoda.

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You have been through so much. My R retina detached in 1984 and was repaired using a scleral buckle. But scar tissue had formed through the macula. So my ‘corrected’ vision is 20/400. My left retina detached in 2014. It was lasered and my corrected vision is 20/50. But over the last 6 months, I’m having white clouds which come over vision, especially when I’m reading or looking down. I did some research about N.A.I.O.N. high I cannot recall well enough to write down what the acronym is. I have 2 of the ‘risk factors’ : high cholesterol and obstructive sleep apnea. I have an appointment in 2 wks with a neuro-ophthalmologist. I definitely have trouble with low vision. I’m investing in a lighted magnifying glass. I lose items that are dark in color, especially black or brown. @dsh33782 do you have strategies for low vision? I am new here @katekelly42

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I just started following this group. I have had dry MD in both eyes for years. My right eye just turned to wet and I had the first injection a month ago. I get the second this week. So far the injection has not improved anything. I fear getting wet in both eyes and not being able to read or putz with stuff. So far with one half ways decent eye I can still see the computer screen and expand stuff. I sit 8 feet away from a 55 inch TV. I have already given up driving.
I have looked on-line for devices to help with reading and doing everyday tasks. Anything electronic seems extremely expensive. Stronger reading glasses help some but you have to have your face a few inches away and still use a magnifying glass. I have a magnifier app on the phone and tablet which help some. I would really like to know what others do to cope?

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Would members of this group please suggest good sites, resources, catalogs, and items that make life easier for people with low vision. My brother has had two strokes and is struggling with reading and seeing clearly. I will scroll through these posts to try to understand another problem he is facing, ie vertigo and dizziness. His doctor said it was due to the medications he's taking and there was nothing he could do about it. I think I would change doctors if one told me that; but I hope some of you might share your knowledge and experience with that issue. The collective wisdom of people on Mayo Connect is staggering. Thanks! Nancy

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