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

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 "

Interested in more discussions like this? Go to the Eye Conditions Support Group.

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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nla4625. all

Perhpas my most used tool is pen type flashlight I keep in my pocket to shine on things I need to read. Next is audiobooks from audible.com I can listen to instead of having to try and read. Next is gooseneck lamp my be computer that I can position to shine bright light on documents. Next is changing computer to high contrast with while letters on black background (Note sometimes I have to switch back because not all websites honor disability screen settings). Next are clocks in bedroom and kitchen with 2 inch digital time display so I don't have to find light to see watch or zoom in on small digits.

Don Higgins

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Hi Don -- These are wonderful suggestions that I would never have thought of. Thanks very much! I'll pass them on knowing they are tried and true and will help him. He likes true crime programs, so I found some true crime podcasts he could listen to. He's nearing retirement age from a successful law career, but Covid and the two strokes have really derailed his plans. Not being able to drive is a really hard adjustment, and he relied heavily on Uber until Covid shut things down. He is an avid crossword puzzle fan, so I was going to see if I can find some large print crosswords. Thanks for these good ideas! I'll start doing some internet searches for sources of information for people with low vision and post them as I find them. Best wishes, Nancy

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Anyone with macular degeneration should check this article at (Mayo Clinic Center for Regenerative Medicine (Delivering innovative stem cell therapy to slow vision loss)). This is the most promising, exciting, and maybe the only treatment I have seen so far for AMD. This is encouraging since they plan to start clinical trials in 18-24 months.

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Wow! This is exciting. I had 2 cataracts removed this year and was told I'm in the early stage of macular degeneration. Here is a link to the article. https://regenerativemedicineblog.mayoclinic.org/2020/10/08/delivering-innovative-stem-cell-therapy-to-slow-vision-loss/ Thanks for letting us know about it! Nancy

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This is an amazing source of various technologies that can help low vision people. I'm technologically challenged but am learning the importance of finding out about all of these new-to-me things. https://www.afb.org/blindness-and-low-vision/using-technology

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This seems to be another good source for information about living with low vision. https://www.aao.org/eye-health/diseases/low-vision-resources. All for now and a while...we need some sun in western PA. Nancy

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@mazeppabob

Anyone with macular degeneration should check this article at (Mayo Clinic Center for Regenerative Medicine (Delivering innovative stem cell therapy to slow vision loss)). This is the most promising, exciting, and maybe the only treatment I have seen so far for AMD. This is encouraging since they plan to start clinical trials in 18-24 months.

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@mazeppabob. Is there a specific discussion thread for macular degeneration? It would help me prepare for what is likely coming if there were. I was wondering if anyone has experience with FSM (Frequency Specific Microcurrent) for macular degeneration and anything else. This link explains what it is and has a tab to locate practitioners who use it. https://frequencyspecific.com/about/ From checking the locator tab I read that Cleveland Clinic (relatively near where I now live) has around 30 medical professionals trained and using FSM for a variety of things, including macular degeneration. I couldn't tell from the doctors listed which one were eye specialists. The first time I read about FSM, I was pretty dubious; but I I don't the Cleveland Clinic would be embracing it if it were quackery. My trusted integrative health doctor in Winona, MN has an article about it on her web site, which is how I first heard about it. Happy New Year! Nancy

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@nla4625

@mazeppabob. Is there a specific discussion thread for macular degeneration? It would help me prepare for what is likely coming if there were. I was wondering if anyone has experience with FSM (Frequency Specific Microcurrent) for macular degeneration and anything else. This link explains what it is and has a tab to locate practitioners who use it. https://frequencyspecific.com/about/ From checking the locator tab I read that Cleveland Clinic (relatively near where I now live) has around 30 medical professionals trained and using FSM for a variety of things, including macular degeneration. I couldn't tell from the doctors listed which one were eye specialists. The first time I read about FSM, I was pretty dubious; but I I don't the Cleveland Clinic would be embracing it if it were quackery. My trusted integrative health doctor in Winona, MN has an article about it on her web site, which is how I first heard about it. Happy New Year! Nancy

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Hi @nla4625, here are a few discussion related to macular degeneration
- Is there an eye drop for macular degeneration? https://connect.mayoclinic.org/discussion/e-degeneration/
- Wet Macular Degeneration https://connect.mayoclinic.org/discussion/wet-macular-degeneration-1/
- Macular Degeneration and Osteoporsis Medication: possible link? https://connect.mayoclinic.org/discussion/macular-degeneration-and-osteoporis-medication-possible-link-in-studie/

And a discussion about FSM (Frequency Specific Microcurrent) in the Neuropathy group:
- Anyone Tried Frequency Specific Microcurrent Therapy? https://connect.mayoclinic.org/discussion/anyone-tried-frequency-specific-microcurrent-therapy/

I have seen a few articles calling FSM quackery however. For example https://sciencebasedmedicine.org/frequency-specific-microcurrent/ And then this clinical study citing potential promise https://pubmed.ncbi.nlm.nih.gov/26719667/. I would investigate closely and ask many questions.

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