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-   -   Macular information (https://www.talkofthevillages.com/forums/medical-health-discussion-94/macular-information-312492/)

Madelaine Amee 10-27-2020 08:19 AM

Macular information
 
I am interested in talking to anyone who is dealing with Macular Degeneration. Especially need information on what magnification items they are using.

I have contacted the Low Vision Club and could not get the information I need for my relative.

I would welcome PMs. Thanks.

stan the man 10-27-2020 08:42 AM

may not boost your post count but "GOOGLE IT":)

Boomer 10-27-2020 09:02 AM

I can’t answer your exact question but I just wanted to make sure you already know about the shots that can work for wet macular degeneration.

The drug started out as a chemo drug and is now used, in a tiny fraction, injected into the white of the eye with a quick shot from a very small needle.

It is also used for something known as myopic degeneration which can happen to highly nearsighted people. In those cases, the injections often do not have to be taken for an extended period of time. I think with wet macular degeneration, the shots are given regularly, if they are working.

I think the treatment has been around for at least ten years, maybe more, so it has a definite success record.

Madelaine Amee 10-27-2020 10:46 AM

Quote:

Originally Posted by stan the man (Post 1852979)
may not boost your post count but "GOOGLE IT":)

Been there, done that. Every case of Macular seems to be totally different. She has a Retina specialist and nothing they suggest has helped her with reading and computer use. Wanted to get different people's opinions on their needs.

Madelaine Amee 10-27-2020 10:47 AM

Quote:

Originally Posted by Boomer (Post 1852991)
I can’t answer your exact question but I just wanted to make sure you already know about the shots that can work for wet macular degeneration.

The drug started out as a chemo drug and is now used, in a tiny fraction, injected into the white of the eye with a quick shot from a very small needle.

It is also used for something known as myopic degeneration which can happen to highly nearsighted people. In those cases, the injections often do not have to be taken for an extended period of time. I think with wet macular degeneration, the shots are given regularly, if they are working.

I think the treatment has been around for at least ten years, maybe more, so it has a definite success record.

Yes, Boomer, she has and is doing the shots. Unfortunately she is now losing cells making the situation very difficult. Viscous condition.

Boomer 10-27-2020 09:21 PM

Bascom Palmer is the #1 eye hospital in the country. I just looked at their website and saw that they are doing virtual visits. Maybe that could be arranged for her to have a consultation.

I know they are located in Naples but I think they have other locations in Florida.

Maybe their website can help with some direction.

Boomer 10-27-2020 09:53 PM

Hello again, Madelaine Amee,

Just a few minutes ago, I posted about Bascom Palmer as a possible source of the information you need and suggested looking through their website.

After I logged out from TOTV, I started looking through their website myself. There I found out that they publish a magazine called Images. I started scrolling through the list of those and soon found an issue, published in 2018, that covers macular degeneration. The article is an overall coverage of macular with information on their research. There is also a section warning about quackery with an example of a situation that happened in Florida with dangerous, unapproved, stem cell treatment. I realize the article probably does not cover the specifics you are looking for, but maybe it can help in some way. (It has a lot of information on the shot we posted about earlier.)

I am linking that magazine here for you:

https://umiamihealth.org/-/media/bas...5C1DDC03A00F03

Madelaine Amee 10-28-2020 04:44 AM

Quote:

Originally Posted by Boomer (Post 1853237)
Hello again, Madelaine Amee,

Just a few minutes ago, I posted about Bascom Palmer as a possible source of the information you need and suggested looking through their website.

After I logged out from TOTV, I started looking through their website myself. There I found out that they publish a magazine called Images. I started scrolling through the list of those and soon found an issue, published in 2018, that covers macular degeneration. The article is an overall coverage of macular with information on their research. There is also a section warning about quackery with an example of a situation that happened in Florida with dangerous, unapproved, stem cell treatment. I realize the article probably does not cover the specifics you are looking for, but maybe it can help in some way. (It has a lot of information on the shot we posted about earlier.)

I am linking that magazine here for you:

https://umiamihealth.org/-/media/bas...5C1DDC03A00F03

Boomer, thank you for taking so much time to get me this information. Will PM you.

Ruggiero56 10-28-2020 05:49 AM

Quote:

Originally Posted by Madelaine Amee (Post 1852961)
I am interested in talking to anyone who is dealing with Macular Degeneration. Especially need information on what magnification items they are using.

I have contacted the Low Vision Club and could not get the information I need for my relative.

I would welcome PMs. Thanks.

Just a quick question - are you a veteran? This may make a difference.

msilagy 10-28-2020 07:28 AM

Go on FB and join "Our Macular Degeneration Journey" Linda who is the moderator has so much info regarding this question. You can post and ask others also. I joined a month ago as I have dry and it's the best thing I have done. Wonderful supportive group and a wealth of resources!!!

kendi 10-28-2020 08:42 AM

Quote:

Originally Posted by Madelaine Amee (Post 1852961)
I am interested in talking to anyone who is dealing with Macular Degeneration. Especially need information on what magnification items they are using.

I have contacted the Low Vision Club and could not get the information I need for my relative.

I would welcome PMs. Thanks.

My mother uses a floor lamp with a magnifier. She uses her ipad to read using a large font and gets most of her books from the library. The ipad also has a magnifier on it. We put plastic raised dots on her microwave so she can feel the buttons. Changed light bulbs to bright white. A sharp contrast between colors is important. For example, a white plate with dark food. Or marking items in freezer with large dark letters on white tape. Contrast is also important for her see where she is walking. In our hometown the Association for the blind will come to the home, assess needs and either provide free items and/or make recommendations. But she refuses these services I think because she is afraid they will recommend we take her out of the home which I don't think they will do. Their goal is to keep the person in the home. I saw that Florida has a Division of Blind service. Maybe check that out to see what they offer if anything. Florida Division of Blind Services If the person's in Florida of course.

kendi 10-28-2020 08:57 AM

Quote:

Originally Posted by kendi (Post 1853387)
My mother uses a floor lamp with a magnifier. She uses her ipad to read using a large font and gets most of her books from the library. The ipad also has a magnifier on it. We put plastic raised dots on her microwave so she can feel the buttons. Changed light bulbs to bright white. A sharp contrast between colors is important. For example, a white plate with dark food. Or marking items in freezer with large dark letters on white tape. Contrast is also important for her see where she is walking. In our hometown the Association for the blind will come to the home, assess needs and either provide free items and/or make recommendations. But she refuses these services I think because she is afraid they will recommend we take her out of the home which I don't think they will do. Their goal is to keep the person in the home. I saw that Florida has a Division of Blind service. Maybe check that out to see what they offer if anything. Florida Division of Blind Services If the person's in Florida of course.

I should add that she has the "wet" type of MD and used to get the shots. One eye is beyond help at this point and has no or very little vision left. The other has low vision but has been stable for a few years so she is currently not getting the shots.

Madelaine Amee 10-28-2020 09:59 AM

Quote:

Originally Posted by msilagy (Post 1853339)
Go on FB and join "Our Macular Degeneration Journey" Linda who is the moderator has so much info regarding this question. You can post and ask others also. I joined a month ago as I have dry and it's the best thing I have done. Wonderful supportive group and a wealth of resources!!!

Thank you to both you and Kendy for the excellent help. This is what I am looking for. She needs magnification and it is almost impossible to find the correct magnification for her because her eyes are not stable and jump, sometimes missing complete lines of type. This is a very difficult problem, but I will look into FB and follow your avice to Kendy. Thanks.

DaleDivine 10-28-2020 10:24 AM

Macular degeneration
 
There is a place in Ocala called Patriot Vision Industries. They have Virtual reality glasses for people with Macular Degeneration. I talked to a guy who has a pair and he is legally blind and with the glasses on he can see a baseball in the air at a game.
They cost around $3000.00 may be worth it for you to check it out.
Dale D.

Madelaine Amee 10-28-2020 11:58 AM

Quote:

Originally Posted by DaleDivine (Post 1853463)
There is a place in Ocala called Patriot Vision Industries. They have Virtual reality glasses for people with Macular Degeneration. I talked to a guy who has a pair and he is legally blind and with the glasses on he can see a baseball in the air at a game.
They cost around $3000.00 may be worth it for you to check it out.
Dale D.

Thank you for this information. It maybe of great help to someone needing that service, thankfully my relative is not at that point yet. We are just trying to work out the correct magnification which is very difficult because most of the items are online and not in a store front where you can try them.


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