WHAT I'VE LEARNED ABOUT MACULAR DEGENERATION IN 18 MONTHS
by Roy
(Bloomington, MN)
My macular degeneration turned from dry to wet AMD in May, 2010. Since that time, my vision has gotten steadily worse. Now at 20/400 and I am classed as legally blind.
What I have learned in the past 18 moths includes these things:
1. Avastin shots did not work for me in slowing loss of vision.
2. Avastin is the same drug as Lucentis--but much less expensive.
3. There are a number of local resource groups that can help with solutions to daily problems--like operating the microwave, stove and washer/dryer with low vision. A simple solution such as using little plastic bumps on appliances settings is a great help.
4. Carrying a lighted hand held magnifier in your pocket at all times is a great idea.
5. Zoom Text graphics software is a God send for those wanting to use a computer.
6. A closed circuit TV is the single best aid to assist those with macular degeneration.
7. The Veterans Administration may be able to assist vets with low vision problems.
8. Special aids--like large number phone and large button TV remote--make life easier.
Hope some of these thoughts my be helpful to you/your readers.
Best regards,
Roy
REPLY
Thank-you Roy for sharing some great tips. Just to help clarify Avastin and Lucentis are both anti-VEGF drugs meaning that they both work by blocking the VEGF. VEGF stands for vascular endothelial growth factor (VEGF). It is secreted by cells that are oxygen deprived and causes the stimulation of the growth of abnormal blood vessels.
Healthy adults secrete very low levels of VEGF, while those who have health conditions such as cancer or age related macular degeneration secrete high levels of this protein.
The clinical trial comparing the two drugs is still in process, but preliminary results are showing little difference in their effectiveness in treating wet macular degeneration.
Leslie Degner, RN, BSN
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Use Contrast to Help you See Better - Like Your Coffee
by Donna
(San Diego, CA)
Using a white cup for my black coffee makes it easier to see when pouring my coffee to know when the cup is full.
Likewise I have a black cup that I use for my white milk. The contrast makes it much easier to see then when I use a black cup for my black coffee.
Never use clear colored drinking glasses - they are impossible to see.
I like to use dark colored place mats on the kitchen table and use plain white plates. It is easier to set the table and to clear it. Using a plain white plate instead of a plate with lots of pattern, makes it easier to see the food too.
I only buy dark colored - navy blue or dark green - kitchen dishcloths, pot holders, kitchen towels. I can find the navy blue kitchen dish cloth in the white sink or the navy blue potholder sitting on the light colored counter top.
In my bathroom, the counter top is white, so I put down a dark blue hand towel. On the hand towel, I can easily see my white toothbrush, comb, toothpaste, etc.
This tip alone - by contrasting dark things on light surfaces or using light colored things on dark surfaces - has really helped me to "see" and "find" things so much easier and has reduced some of the frustration I experience in my daily tasks.
REPLY
Thanks for sharing Donna. Peggy, the author of Macular Disease: Practical Strategies for Living with Vision Loss provides the suggestion of using a hanger with the white paper still on it to separate her clothes. Use the white hanger as a divider to separate the blue clothes from the black clothes from the brown clothes, etc.
Leslie Degner, RN, BSN
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Kitchen Tips
by Katherine
(Tampa, FL)
I store my dry goods - like flour, sugar, and oatmeal in different color and different sized containers. They are labeled with large, bold print.
For measuring I use measuring cups and spoons that have large and contrasting numbers. It takes me a little longer to cook, but I still enjoy it. Another cooking aid that I use frequently is a large number timer.
I am constantly finding ways to adapt and adjust.
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Tips for Living with Macular Degeneration
by John
(United States)
1. Record Rather Than Write
Writing and then reading what I've written has become too frustrating for me, so I now use a small handheld recorder to record things.
I use it to remind me of appointments or birthdays. If I need to pick up something at the store, I record what food items I am out of.
2. Seasoning My Food
I prinkle seasonings, like salt and pepper, into my hand and then onto my food.
3. Toothpaste
Squeeze the toothpaste onto my finger rather than the toothbrush.
4. Taking a Bath
I like taking baths, so I keep a large dark blue ball in my white tub. Now I can tell how much water is in the tub and turn it off before it fills over. I also use a dark blue towel and wash cloth - easy to see and to find on the white tub.
Hope these tips are helpful to someone else!
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Tips for Living with Macular Degeneration - Toothpaste on the Toothbrush
by Susan
(Royal Oak, Mi)
My mother has Dry AMD and is having a hard time getting toothpaste on her toothbrush because she can't see either the paste or the toothbrush. Any ideas?
Thanks so much!
REPLY
Hi Susan,
 
Indeed I do. Peggy Wolfe has macular degeneration and gives these tips from her book, Macular Disease: Practical Strategies for Living with Vision Loss:
1. Use an electric toothbrush that is kept upright in a stand on your bathroom counter. You will be able to find it easier.
2. Use toothpaste in a pump dispenser that also stands upright on the bathroom counter. Easier to see and find than one that sits in a drawer.
3. Squirt the toothpaste onto your finger and then transfer the toothpaste to - or even easier put the toothpaste onto your finger and transfer it directly to your mouth.
Peggy did an e-interview for us on other tips for living with macular degeneration. You can read it here:
Tips for Living with Macular Degeneration by Peggy Wolfe.
Kind Regards,
Leslie Degner, RN, BSN
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File Folder Colors for Organizing Papers
by Fern
(United States)
I am a Professional Organizer who will be working with a client that has macular degeneration.
What is the best file folder to use when setting up her file system? Standard manilla or a color?
I will be using a labeler - black letters on white type &using a large font.
REPLY
Hi Fern,
You are doing a good job of finding and adapting ways to help with organizing for your client with AMD.
Contrast is very important - hence the dark black on white for your labels will be good.
Depending on how you are setting up the files, if there will be several file folders for one category - i.e. bills - one folder for electric bills, one for phone bills, etc - have the files in that category one color - let's say solid blue, the color for the next category would be be a lighter color - let's say yellow.
The client could quickly tell that blue is for bills, yellow is for health records, etc. Don't put another dark color, like purple next to the blue file folders, because it would be hard for the client to distinguish between the dark blue and the dark purple.
Hope this helps. If anyone with AMD has any other suggestions please post here.
Kind Regards,
Leslie Degner, RN, BSN
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