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Mentor

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

Posted by Don Higgins, Volunteer Mentor @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 "

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

Mentor
Don Higgins, Volunteer Mentor | @dsh33782 | Jan 6 6:54am
In reply to @cindibarre "I'm interested in joining the group. My mother had dry macular degeneration and eventually lost most..." + (show)
@cindibarre

I'm interested in joining the group. My mother had dry macular degeneration and eventually lost most vision in her late 80's. I have been diagnosed with dry macular as well. I have no symptoms but like to stay current on the issue so I can try to be prepared for what is to come. My mother's senior facility had a low vision group which she participated in and I did a lot of little things around her house to help her adjust to the failing vision. It wasn't until my mother developed vascular dementia that many of her fellow residents became aware of how much of her vision was gone.

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Cindi
Welcome to the low vision group within mayo-connect.
We are growing as we and our families get older and find more vision problems due to macular degeneration, severe glaucoma, and other eye ailments. It is true that most people don't recognize others with low vision unless they are using a white cane. I'd rather hold my wife Charlotte's hand whenever we are walking to keep me from tripping on steps I don't see etc.
Don

REPLY
1 reply
prayingtolucy | @prayingtolucy | Jan 7 11:58am
In reply to @treyaj "I would be very interested. I have just beginning macular degeneration, but I have a macular..." + (show)
@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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Hello, I would love to discuss Macular Degeneration with you. I have intermediate and was diagnosed at age 54. I'm not sure when I had the beginning stages since I saw an opthalmologist annually until COVID then it was hard to get an appointment for like two years. It could have only started and progressed within those 1-2 years unless my doctors didn't bother to share. All of my research says 1-2 years early to intermediate is almost unheard of. I'm very worried for my future even tho my retina specialist seems to think it will take decades to affect me. I am taking every precaution I can to make sure that comes true. I sure hope to hear back from you here or via a private message. Thank you & God Bless.

REPLY
prayingtolucy | @prayingtolucy | Jan 7 2:28pm
In reply to @dsh33782 "Cindi Welcome to the low vision group within mayo-connect. We are growing as we and our..." + (show)
@dsh33782

Cindi
Welcome to the low vision group within mayo-connect.
We are growing as we and our families get older and find more vision problems due to macular degeneration, severe glaucoma, and other eye ailments. It is true that most people don't recognize others with low vision unless they are using a white cane. I'd rather hold my wife Charlotte's hand whenever we are walking to keep me from tripping on steps I don't see etc.
Don

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@cindibarre
I would love to hear from you regarding Macular Degeneration. I have so many questions and concerns. I would love to hear your story and suggestions etc. I feel like I receive very little responses to my posts, questions, concerns, ideas that I write on here. I hope I hear from you. You can send a private message as well if you'd like.

REPLY
3 replies
cindibarre | @cindibarre | Jan 7 3:07pm
In reply to @prayingtolucy "@cindibarre I would love to hear from you regarding Macular Degeneration. I have so many questions..." + (show)
@prayingtolucy

@cindibarre
I would love to hear from you regarding Macular Degeneration. I have so many questions and concerns. I would love to hear your story and suggestions etc. I feel like I receive very little responses to my posts, questions, concerns, ideas that I write on here. I hope I hear from you. You can send a private message as well if you'd like.

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I'm happy to share what we did to help my Mom.

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Mentor
Don Higgins, Volunteer Mentor | @dsh33782 | Jan 7 5:12pm
In reply to @prayingtolucy "@cindibarre I would love to hear from you regarding Macular Degeneration. I have so many questions..." + (show)
@prayingtolucy

@cindibarre
I would love to hear from you regarding Macular Degeneration. I have so many questions and concerns. I would love to hear your story and suggestions etc. I feel like I receive very little responses to my posts, questions, concerns, ideas that I write on here. I hope I hear from you. You can send a private message as well if you'd like.

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Hi Cindi
I'm afraid I can't help much with macular degeneration questions as I have only been fighting glaucoma for over 30 years. I'm now 79 but it all started with nuclear cataracts at age 38 and they did not put in innerocular lenses back then so I have lived with thick glasses. Later I had detached retinas in both eyes and then the glaucoma started. I'm currently on 3 eye drops: pilocarpine, dorzolimide, and rocklatan. But over time I have lost central vision in my left eye and about 40% of field in the right eye.
Don

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Moderator
Colleen Young, Connect Director | @colleenyoung | 20 hours ago
In reply to @prayingtolucy "@cindibarre I would love to hear from you regarding Macular Degeneration. I have so many questions..." + (show)
@prayingtolucy

@cindibarre
I would love to hear from you regarding Macular Degeneration. I have so many questions and concerns. I would love to hear your story and suggestions etc. I feel like I receive very little responses to my posts, questions, concerns, ideas that I write on here. I hope I hear from you. You can send a private message as well if you'd like.

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@prayingtolucy and @cindibarre, you can find discussions about macular degeneration using the group search:
https://connect.mayoclinic.org/group/eye-conditions/?search=macular%20degeneration&index=discussions

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