There are many adjustments to make in your every day living with macular degeneration. Some are easy and simple, some are more difficult and other adjustments involve relationships and how we communicate with others.
Contrast is King
As your macular degeneration progresses it becomes more difficult to see or notice objects when there isn't as much contrast - such as a black pen on a black granite counter top, but ...put that black pen on a white counter top it can be seen quite easily.
Provide contrast to all areas of your home such as:
√ Use white plates on a dark tablecloth
√ Use dark colored face plates on your electrical switches and outlets if your have light colored walls
√ Put dark colored decals on your sliding glass doors
√ Use white on black stickers to label your computer keys
√ Paint the edges of your outdoor steps in white
√ Use bright and varied colored measuring cups and spoons
√ Select kitchen canisters that contrast with the color of your countertop
√ Use bathroom towels and washcloths that are a solid color and contrast with your bathtub, sink and counter.
√ Use potholders that are bright, solid colored and contrast with your counters
√ Drink coffee from a white mug and milk from a dark glass
√ Use a dark colored cutting board when preparing cauliflower, potatoes, onions or mushrooms
√ Use a white cutting board when preparing dark leafy greens, green peppers, or zucchini
Reduce Glare
Glare can interfere with your vision and it can come from a bright room filled with sunshine to just trying to see a shiny deck of cards.
There are ways to adapt to glare. You can:
√ Choose incandescent lights over fluorescent lights
√ Change your position in relationship to your light source
√ Use venetian blinds or sheer curtains to allow as much sunlight in and yet can
accommodate the glare
√ Put down rugs (secure them) to reduce glare from polished hardwood floors
√ Wear light yellow NOIR sunglasses to cut glare indoors and outdoors
√ Choose furniture with a flat or matt finish
√ Develop your pictures with a matt finish rather than a glossy finish
Lighting
Living with macular degeneration will involve more lights and brighter lights as your macular degeneration progresses.
Macular Degeneration Magnifier
Living with macular degeneration can be very frustrating when you can't see a picture, read the newspaper, or continue with your favorite hobby. One of the simplest tips is to use magnifiers. You will need different magnifiers for different tasks. Many of them are very inexpensive.
Wednesday, February 25, 2009
Tuesday, February 17, 2009
Independent Living: People with vision disabilities have support groups available
theithacajournal.com
February 14, 2009
By Sherry Thurston
Guest Columnist
Did you know that 20.5 million Americans 40 and older have a cataract in at least one eye and another 6 million have had cataract surgery?
Just in the United States alone, it is believed that there are approximately 120,000 patients who are believed to be legally blind from glaucoma. Glaucoma can cause blindness if it is left untreated. And unfortunately about 10 percent of people with glaucoma who receive proper treatment still experience loss of vision.
Macular degeneration is a major cause of visual impairment in the United States. Approximately 1.8 million Americans age 40 and older have advanced macular degeneration, and another 7.3 million people with intermediate macular degeneration are at substantial risk of vision loss. The government estimates that by 2020 there will be 2.9 million people with advanced macular degeneration.
These numbers are unbelievable. I have glaucoma and have been treating my glaucoma for about 15 years. Before the glaucoma I had two cataract surgeries and have been classified legally blind since the age of 2. While growing up in the 1960s and 1970s there were no support groups to help me understand my vision loss or for me to socialize with others who had a visual disability. With support from my family, I coped with the situation and graduated from school. As I got older and learned more about the services in the community, I became a peer counselor. I realized how important it is to have a peer-run support group for people with visual disabilities.
The support group not only offers a support network for people with visual disabilities but it offers resources and support for family members and interested community members. Not everyone needs a support group, and that is OK. Those who do come, come for socialization because they feel isolated in their homes, not being able to get out because of their vision loss. Some people come for the information that is being shared by a guest speaker or by the agency facilitating the support group. Then you get others who like to share their experiences living with a vision loss, and that is the whole idea of the support group: sharing of experiences and ideas with difficult areas in our lives. If we share our experiences, someone else will learn from our experiences and that experience will make their life not so difficult. One other thing about support groups is that they do not have to be a negative thing. I like to think that the Visual Support Group at Finger Lakes Independence Center is a positive influence on those who attend.
Do you have a visual disability and have wanted to attend a support group but have not because you have thought it would be depressing? Why don't you make a New Year's resolution and give me a call and attend the Visual Support Group. Call FLIC at 272-2433.
February 14, 2009
By Sherry Thurston
Guest Columnist
Did you know that 20.5 million Americans 40 and older have a cataract in at least one eye and another 6 million have had cataract surgery?
Just in the United States alone, it is believed that there are approximately 120,000 patients who are believed to be legally blind from glaucoma. Glaucoma can cause blindness if it is left untreated. And unfortunately about 10 percent of people with glaucoma who receive proper treatment still experience loss of vision.
Macular degeneration is a major cause of visual impairment in the United States. Approximately 1.8 million Americans age 40 and older have advanced macular degeneration, and another 7.3 million people with intermediate macular degeneration are at substantial risk of vision loss. The government estimates that by 2020 there will be 2.9 million people with advanced macular degeneration.
These numbers are unbelievable. I have glaucoma and have been treating my glaucoma for about 15 years. Before the glaucoma I had two cataract surgeries and have been classified legally blind since the age of 2. While growing up in the 1960s and 1970s there were no support groups to help me understand my vision loss or for me to socialize with others who had a visual disability. With support from my family, I coped with the situation and graduated from school. As I got older and learned more about the services in the community, I became a peer counselor. I realized how important it is to have a peer-run support group for people with visual disabilities.
The support group not only offers a support network for people with visual disabilities but it offers resources and support for family members and interested community members. Not everyone needs a support group, and that is OK. Those who do come, come for socialization because they feel isolated in their homes, not being able to get out because of their vision loss. Some people come for the information that is being shared by a guest speaker or by the agency facilitating the support group. Then you get others who like to share their experiences living with a vision loss, and that is the whole idea of the support group: sharing of experiences and ideas with difficult areas in our lives. If we share our experiences, someone else will learn from our experiences and that experience will make their life not so difficult. One other thing about support groups is that they do not have to be a negative thing. I like to think that the Visual Support Group at Finger Lakes Independence Center is a positive influence on those who attend.
Do you have a visual disability and have wanted to attend a support group but have not because you have thought it would be depressing? Why don't you make a New Year's resolution and give me a call and attend the Visual Support Group. Call FLIC at 272-2433.
Thursday, February 12, 2009
New Clinic For Veterans
A new clinic is offering special services for veterans that have vision loss or macular degeneration.
The Sioux Falls VA Medical Center has a new clinic offering low vision evaluations, activities of daily living assessment, and supply and education of low vision devices such as magnifiers, special lighting, and closed circuit televisions.
For more information or to schedule an appointment contact 1-800-316-8387, ext. 5924.
The Sioux Falls VA Medical Center has a new clinic offering low vision evaluations, activities of daily living assessment, and supply and education of low vision devices such as magnifiers, special lighting, and closed circuit televisions.
For more information or to schedule an appointment contact 1-800-316-8387, ext. 5924.
Thursday, February 5, 2009
Schepens Eye Research Institute plans symposium
Wednesday, February 04, 2009
The Schepens Eye Research Institute's local 2009 Eye & Vision Research Symposium is slated to be held Wednesday, Feb. 11, at the Kravis Center in West Palm Beach.
The event will provide information on living with macular degeneration, stem-cell advancements and new clinical treatments.
The events are free and open to the public.
Registration, a coffee and a display of low-vision aids will begin at 9 a.m., followed by the program from 10 a.m. to noon. A question-and-answer session will conclude the event. Speakers will include Dr. David A. Snyder of Delray Eye Associates; Dr. Michael Gilmore, senior scientist at the Schepens; Dr. Michael Young, associate scientist at Schepens; and Richard A. Godfrey, the institute's patient liaison.
Registration is requested: Call (866) 258-8505 or visit www.schepens.harvard.edu/symposia_2009.php.
The Schepens Eye Research Institute's local 2009 Eye & Vision Research Symposium is slated to be held Wednesday, Feb. 11, at the Kravis Center in West Palm Beach.
The event will provide information on living with macular degeneration, stem-cell advancements and new clinical treatments.
The events are free and open to the public.
Registration, a coffee and a display of low-vision aids will begin at 9 a.m., followed by the program from 10 a.m. to noon. A question-and-answer session will conclude the event. Speakers will include Dr. David A. Snyder of Delray Eye Associates; Dr. Michael Gilmore, senior scientist at the Schepens; Dr. Michael Young, associate scientist at Schepens; and Richard A. Godfrey, the institute's patient liaison.
Registration is requested: Call (866) 258-8505 or visit www.schepens.harvard.edu/symposia_2009.php.
Degenerative eye disease may claim woman's sight, but won't take her positive attitude
By Richard J. Alley, Memphis Commercial Appeal
Lynette Herman stares into the middle distance while listening to a conversation, occasionally offering up information, correcting her husband's memory or erupting with a sharp burst of laughter.
There is levity in those steel grey eyes, and something else: a malfunction that reaches to the cells lining the back inside wall of the eyes. The mutation of a gene reaching back to at least the turn of the last century.
She suffers from retinitis pigmentosa, a disease causing the degeneration of the retina and eventual blindness in some 100,000 Americans. Suffering, though, is not the way Lynette, or her husband, Dr. Martin Herman, would characterize it.
While RP robs its carriers of eyesight gradually, usually taking until the age of 40 or so before rendering them legally blind, Lynette is anything but a victim, refusing to lose her positive attitude along with her vision.
One can't help but notice the beautiful pool table just beyond the living room at the Herman house. Martin says Lynette never played. She, however, insists she did. "I just found out blind people can play golf, too," she says.
"We're going to give it a shot," said her husband.
RP is hereditary and can be traced back in her family, originally from Tupelo, Miss., to her great-grandmother, passed to her grandmother and then four of her grandmother's children, including Lynette's father. Her sister, three aunts and uncles and five cousins also have RP.
Family reunions are full of people who know to touch when they approach to talk, never to move a chair and to not put a glass of Coke on a dark tablecloth. "I've known about it my whole life and wasn't just hit over the head with it," she said.
Diagnosed with the autosomal dominant variation of RP, she was born with a 50/50 chance of having the mutated gene. Lynette, 56, first noticed her fading eyesight as a child with trouble seeing at night, a typical first symptom, eventually needing a pronounced contrast
to distinguish objects in her environment as an adult. Her frontal vision is almost totally gone and she can see people and shapes better through her peripheral vision.
She continued with life as normal until she had to stop driving in her 40s, which, she admits, was probably pushing it. "But," she said, "it didn't affect my life until then. I've had a full life."
Lynette has been married to Martin, a pediatrics emergency specialist with Le Bonheur Children's Medical Center, for 25 years. The two have one daughter who, at 24, shows no sign of RP.
The husband and wife banter, joke and pick at each other's stories. He's helpful, but is in no way a crutch. She doesn't need one, nor would she accept one if offered. Though they walk the neighborhood together; a walking stick is never used, as she is wary of drawing attention to herself.
Martin walks ahead with their dog and calls out only if there is a break in the path or some other obstruction, such as the new street signs the city of Memphis placed in the middle of the sidewalks.
Eating out, Martin says, is the most difficult activity, especially any place with mood lighting. "I load up two plates at a buffet. I hope people are understanding."
The Hermans and Lynette's sister are all on the board of the Mid-South Chapter of Foundation Fighting Blindness (blindness.org), an organization that, according to their mission statement, "drives the research that will provide prevention, treatments and cures for people affected by retinitis pigmentosa, macular degeneration, Usher Syndrome, and the entire spectrum of retinal degenerative diseases."
Dr. Stephen Rose, a molecular biologist and the foundation's chief research officer, is excited by the prospects of gene therapy and the possibilities of "turning off the bad copy of the gene and getting rid of the toxic product being made." He sees progress at institutions around the country, specifically at the Children's Hospital of Philadelphia. There three subjects in their late teens and early 20s received gene therapy for Leber congenital amaurosis, an inherited disease causing blindness at birth. Afterward, they were able to read three lines on an eye chart and navigate an obstacle course.
The Hermans, naturally, are hopeful for a cure, or even a halt to the progression into blindness. But the issue isn't dwelt upon. Lynette fills her days with trading stocks online with the help of a Microsoft feature that switches an Internet browser's page to a high contrast, white characters on a black screen. She could read print up until last year and now downloads books into a digital recorder through a free program with the Library of Congress. She goes through two or three of these per week.
She watches DVDs with a special feature that describes a scene aloud as a narrator in a novel might. "I like watching those movies myself," Martin chimes in. She does miss going to the movies, however.
She cooks, she gardens and she researches products that might make her life easier, such as the Cobolt Speechmaster, a device which, when held against fabric such as a shirt or jacket, speaks the color of that item out loud. There are companies, too, working on cell phones with a bar code scanner that will tell the blind all of the information recorded in that code.
But as helpful as these items are and will be, a cure and good care are the true passions of the Hermans. "Anyone who has eyesight problems should be getting creditable, reliable help," Martin says. "We don't want anyone to have false hopes through unsanctioned, unsafe practices."
Until a cure comes along, she relies on her knowledge and familiarity with her condition, as well as her sense of humor and her husband, who attributes their long marriage to her blindness: "In her mind I'm still 35, with a head full of hair and no gray."
Lynette Herman stares into the middle distance while listening to a conversation, occasionally offering up information, correcting her husband's memory or erupting with a sharp burst of laughter.
There is levity in those steel grey eyes, and something else: a malfunction that reaches to the cells lining the back inside wall of the eyes. The mutation of a gene reaching back to at least the turn of the last century.
She suffers from retinitis pigmentosa, a disease causing the degeneration of the retina and eventual blindness in some 100,000 Americans. Suffering, though, is not the way Lynette, or her husband, Dr. Martin Herman, would characterize it.
While RP robs its carriers of eyesight gradually, usually taking until the age of 40 or so before rendering them legally blind, Lynette is anything but a victim, refusing to lose her positive attitude along with her vision.
One can't help but notice the beautiful pool table just beyond the living room at the Herman house. Martin says Lynette never played. She, however, insists she did. "I just found out blind people can play golf, too," she says.
"We're going to give it a shot," said her husband.
RP is hereditary and can be traced back in her family, originally from Tupelo, Miss., to her great-grandmother, passed to her grandmother and then four of her grandmother's children, including Lynette's father. Her sister, three aunts and uncles and five cousins also have RP.
Family reunions are full of people who know to touch when they approach to talk, never to move a chair and to not put a glass of Coke on a dark tablecloth. "I've known about it my whole life and wasn't just hit over the head with it," she said.
Diagnosed with the autosomal dominant variation of RP, she was born with a 50/50 chance of having the mutated gene. Lynette, 56, first noticed her fading eyesight as a child with trouble seeing at night, a typical first symptom, eventually needing a pronounced contrast
to distinguish objects in her environment as an adult. Her frontal vision is almost totally gone and she can see people and shapes better through her peripheral vision.
She continued with life as normal until she had to stop driving in her 40s, which, she admits, was probably pushing it. "But," she said, "it didn't affect my life until then. I've had a full life."
Lynette has been married to Martin, a pediatrics emergency specialist with Le Bonheur Children's Medical Center, for 25 years. The two have one daughter who, at 24, shows no sign of RP.
The husband and wife banter, joke and pick at each other's stories. He's helpful, but is in no way a crutch. She doesn't need one, nor would she accept one if offered. Though they walk the neighborhood together; a walking stick is never used, as she is wary of drawing attention to herself.
Martin walks ahead with their dog and calls out only if there is a break in the path or some other obstruction, such as the new street signs the city of Memphis placed in the middle of the sidewalks.
Eating out, Martin says, is the most difficult activity, especially any place with mood lighting. "I load up two plates at a buffet. I hope people are understanding."
The Hermans and Lynette's sister are all on the board of the Mid-South Chapter of Foundation Fighting Blindness (blindness.org), an organization that, according to their mission statement, "drives the research that will provide prevention, treatments and cures for people affected by retinitis pigmentosa, macular degeneration, Usher Syndrome, and the entire spectrum of retinal degenerative diseases."
Dr. Stephen Rose, a molecular biologist and the foundation's chief research officer, is excited by the prospects of gene therapy and the possibilities of "turning off the bad copy of the gene and getting rid of the toxic product being made." He sees progress at institutions around the country, specifically at the Children's Hospital of Philadelphia. There three subjects in their late teens and early 20s received gene therapy for Leber congenital amaurosis, an inherited disease causing blindness at birth. Afterward, they were able to read three lines on an eye chart and navigate an obstacle course.
The Hermans, naturally, are hopeful for a cure, or even a halt to the progression into blindness. But the issue isn't dwelt upon. Lynette fills her days with trading stocks online with the help of a Microsoft feature that switches an Internet browser's page to a high contrast, white characters on a black screen. She could read print up until last year and now downloads books into a digital recorder through a free program with the Library of Congress. She goes through two or three of these per week.
She watches DVDs with a special feature that describes a scene aloud as a narrator in a novel might. "I like watching those movies myself," Martin chimes in. She does miss going to the movies, however.
She cooks, she gardens and she researches products that might make her life easier, such as the Cobolt Speechmaster, a device which, when held against fabric such as a shirt or jacket, speaks the color of that item out loud. There are companies, too, working on cell phones with a bar code scanner that will tell the blind all of the information recorded in that code.
But as helpful as these items are and will be, a cure and good care are the true passions of the Hermans. "Anyone who has eyesight problems should be getting creditable, reliable help," Martin says. "We don't want anyone to have false hopes through unsanctioned, unsafe practices."
Until a cure comes along, she relies on her knowledge and familiarity with her condition, as well as her sense of humor and her husband, who attributes their long marriage to her blindness: "In her mind I'm still 35, with a head full of hair and no gray."
Subscribe to:
Posts (Atom)
