BLIND SCHOOL EXTENDS HOPE TO VISUALLY IMPAIRED
By John M. Egan // March 12, 2013
Volunteers Teach Independence, Self-Reliance
BREVARD COUNTY • SATELLITE BEACH, FLORIDA – Many do not know what to expect when visiting the Brevard Association for The Advancement of the Blind in Satellite Beach for the first time.
Meeting anyone –young or old — with diminished or total vision loss can be challenging because most of us take our eyesight for granted.
For those with vision impairment, simple tasks can become major chores and a bewildering maze of obstacles to overcome.
I always approach each story with as much objectivity as I can, however this assignment was somewhat difficult for me having had first-hand experience as my mother of 90 years gradually lost her vision.
Upon entering the association’s facility on South Patrick Drive, I was greeted by Marge Pailleron, volunteer director of the center’s program for independent living.
“I guess you expected doom and gloom,” said Pailleron.
I was floored, but very much relieved. It was obvious. Pailleron sensed my anxiety.
“We provide the students with a new form of the same living skills they have done before, but we teach them how to do it safely when they’re blind,” said Pailleron. “An example would be preparing their meals. The simple task of cutting meat or vegetables could result in an injury. We took away the paring knife and now we use a larger chef knife it is much safer.
“We have designed a program around the rooms of the home. What are their trials and tribulation around that room and how to we solve them? We give the students tips,” she said. “And how to use them and modify them for their specific needs. When they leave here, they have the capability if a problem develops to sit down and think how to solve it.”
Pailleron said some of the problems help those with diminished vision keep track of things at home.
“My standard comment is if it goes on you or in you it better be labeled,” she said. “You do not want to pick up a can of Raid when you wanted a can of hair spray or a tube of ointment when you wanted tooth paste. Everything must be labeled or identified by touch. We introduce them to the white cane and how to use it. We teach them sensory development.”
Pailleron said we all have five senses, but the blind are without one.
“Hearing can save your life when you’re crossing a road. Smell can detect an odor of gas or if the food is fresh and safe to eat,” she said. “Taste will tell if it safe or is it sugar, salt or detergent, and touch will let you know is this a latch on the door or is the surface hot? Is that an open drawer I may strike, or is this a comb or something that will harm them. These are just some of the tips, our students can use to stay safe and return to independent living.”
It was impressive to observe the bright and casual atmosphere and the high-spirited greetings of the students as they prepared their coffee and acquired a pastry or two from a large buffet while waiting for a class about low vision aides from Dr. Daniel T. Brown, a board certified optometrist from Florida Eye Associates in Melbourne.
Dr. Brown opened his class with a series of question to the more than 20 students in attendance. His questions were related to the specific cause for their diminishing or total vision loss.
The students were asked to respond by raising their hands if the specific cause of their vision loss pertained to them. Diabetes? A few hands go up. Glaucoma? Again a few hands. Retinitis Pigmentosa? A few more hands are raised.
Did they suffer a stroke or a brain injury? One hand is raised. Macular Degeneration? More than half in attendance responded to this.
“Macular degeneration is the leading cause of blindness in adults 65 and older,” said Dr. Brown. “The American Foundation for the Blind in 2010 estimated there were more than 14 million Americans who are visually impaired. What the foundation is predicting that within the next 10 to 15 years those numbers will double, because of the baby boomers. Those children of the post-WWII era are now becoming older.”
Macular degeneration is a deterioration of the macula, the central area of the retina. The retina is a paper-thin tissue at the back of the eye. It is here where its light-sensitive cells transmit visual signals to the brain. A sharp, clear, straight ahead vision is processed by the macula and damage to it results in blind spots, blurred and distorted vision.
Age is the number one risk factor for macular degeneration. One third of the adults over the age of 75 suffer from age-related macular degeneration.
Those affected by macular degeneration find daily activities such as reading a book, a newspaper, product labels while shopping, using a computer and writing checks challenging. But for many, driving becomes more of a challenge if not dangerous, and inevitably although reluctantly, many are compelled to relinquish their last bastion of independence, their driver’s license.
There are several risk factors associated with this macular degeneration. Age is the number one risk factor. One third of the adults over the age of 75 suffer from age-related macular degeneration.
Next is smoking. The retina has a high level of oxygen consumption. Therefore anything that decreases the rate of oxygen flow such as smoking will have a potential negative impact on vision.
Scientific evidence shows that genes may play a role in the development of nearly three out of four cases of this devastating eye disease.
A family history of the disease is a factor, as well as gender play a role, especially for females. Females are more likely to be affected by age-related macular degeneration.
One factor is longevity, females generally live longer than males and thus the disease has more time to develop
Caucasians are more likely to be affected by age-related macular degeneration than other races. This is because of differences in their genetic background or pigmentation.
Prolonged sun exposure to Ultra Violet light damages the retinal tissue directly and can also lead to the accumulation of products that are harmful to the retina.
Individuals with light-colored eyes are more likely to be affected by dry age related macular degeneration. Light-pigmented eyes offer less protection from damaging UV light.
Another factor is diet. A high fat diet or one low in nutrients and antioxidants are more likely affected. Obesity is another risk factor. An individual whose body mass index (a measure of fat) is greater than 30 is at a high risk. Also at risk are those with high blood pressure. Like smoking, it leads to constriction of the oxygenated blood vessels that nourish the retina.
Dr. Brown continues his inquires about the student’s experiences in the past with their eye specialists and if they were told by them that there was nothing more that could be done for their low vision. All responded in the affirmative.
“Many years ago I may have told my patients that as well, but I always knew there would be low-vision care I could provide for them and something could be done,” said Dr. Brown. “About 10 years ago, Dr. William Brossard, a senior member of our practice asked me if I would be interested in establishing a low-vision clinic. I gladly said yes.”
After more than two years of combined comprehensive training with Eschenbach Optix in Florida and The Lighthouse for the Blind in Manhattan, Dr. Brown is an associates’ specialist in the field of low-vision care at Florida Eye Associates clinic in Melbourne.
He prepares a display before the class of the many low-vision aids available. The display consists of hand-held magnifiers that one moves across a page of a book or newspaper or pendant magnifiers, which are secured by a lanyard around the neck and are readily available to simply pick up to read print from items while shopping.
There are stand magnifiers, desk-top video magnifiers, CCTV magnifiers where a page of a newspaper or book is projected onto a closed circuit screen. Other vision aides such as Task Lights, which illuminate the reading area, and contrast sheets which are placed over the reading material help increase contrast and enhance the print.
“These and many more aides are available for the low-vision patient,” said Dr. Brown. “There also is computer software that will magnify the print on web pages and e-mails.”
During the opening of his class Dr. Brown asked the students if a certain disease was the cause of vision loss.
Peripheral Vision Loss
When he mentioned Retinitis Pigmentosa, Tom Ward of Indialantic, 72, raised his hand.
Retinitis Pigmentosa is a group of inherited disorders characterized by progressive peripheral vision loss and night vision loss which can lead to central vision loss. The main risk factor is a family history. It is an uncommon condition affecting one out of 4,000 people in the United States.
“Retinitis Pigmentosa is a defect in five different genes,” said Ward. “It is progressive and it is not treatable. You can slow it down with the intake of vitamin A, but normally you will lose 1 percent of your peripheral (side vision) vision each year until you go completely blind. It renders you with a severe case of tunnel vision, you have no night vision and your depth perception is compromised.”
Ward said the onset of his disease started in the mid-1980’s.
“I have been dealing with this for more than 30 years,” said Ward. “I am down to the point now that I have seven degrees of peripheral vision in one eye and eight degrees in the other.”
He said Dr. Brown’s mention of patients no longer driving struck a nerve.
“In my case I was so overjoyed. I was so petrified to drive. Because of the lack of my depth perception and my peripheral vision was compromised, I was petrified I would hit something I did not see.” Tom Ward of Indialantic
“In my case I was so overjoyed. I was so petrified to drive,” Ward said. “Because of the lack of my depth perception and my peripheral vision was compromised, I was petrified I would hit something I did not see.”
He said that in the 1990’s he had a very serious accident.
“When my doctor told me I could no longer drive, it was like a weight was taken off of my shoulders,” Ward said. “This was a wakeup call for me. I tossed my car keys aside and that was it. My advice is for those who continue to drive is that they have to come to the realization that you’re not the only one in danger, so are the other drivers. When they accept this, they will turn in their driver’s license.”
Ward said when his disease developed and he became aware of its prognosis, he went through a range of emotions like everyone else.
“I went through bouts of depression, denial, isolation, anger and feeling sorry for myself. I could no longer continue to sit on the edge of my bed and cry,” he said. “I said I am going to get out and live a life. A good friend of mine directed me to this center and it has turned my life around. It got me out of the house, I am now more independent, I am meeting people, interacting with them and learning how to be me again.”
One of the students is Jennifer Landmesser of Palm Bay, 39. Prior to her vision loss, she was an emergency room paramedic nurse at Holmes Regional Medical Center in Melbourne.
Nearsighted as a child, Landmesser sought out correcting it more than 20 years ago through a procedure called Radial Keratotomy. In 2000, she noticed her daily contact lenses were not providing her with the vision she had hoped for. After seeing an eye specialist it was determined to be her cornea.
After several attempts with various power contact lenses, her vision continued to deteriorate. Doctors performed surgery to remove scar tissue from the cornea and discovered damage to her retinas.
“Even with various medications and injections, my retinas continued to deteriorate,” said Landmesser. “It wasn’t until two years ago that a specialist had me tested for the possibility of Celiac Disease. The test was positive.
“Celiac Disease is the bodies’ auto immune system reaction to gluten. Once I went off gluten the degeneration in my retinas stopped,” she said. “Although my vision will not improve, hopefully it will no longer deteriorate. Now I have to be aware of foods which contain gluten.”
Gluten is found in bakery items such as breads, rolls that contain wheat, barley and rye, and other products, including soups condiments and many more.
“It was especially hard for me to resign my position as a paramedic in the emergency room. That was very difficult,” said Landmesser. “I went through a year of profound depression. No one knew what I was going through. There was no other vision-impaired person I could talk to, or anyone who would understand.”
She said a friend of hers talked to Pailleron and told her what she was going through.
“Marge called and invited me out for a class and that changed everything. There are people just like me,” Landmesser said. “The same things that happen to them happened to me. There is camaraderie with each of us helping each other. I am very grateful to all the volunteers who teach me and who continue to lift my spirits.”
In March of 2012, Landmesser, was accepted by Pilot Light, a training center for service dogs in Columbus, Ohio. Pilot Light trains the students and service dogs and monitors their comparability for a perfect match of a service dog with a vision-impaired student.
“I was concerned about my training with a dog because of my allergies,” said Landmesser. “I am allergic to dogs, but they found a perfect match for me in a 2-year-old standard poodle named Frank. Poodles are one of the breeds who are hypo-allergenic. It was a perfect match and we are inseparable.”
Andrew Miles of Melbourne, 30, suffered a catastrophic and life altering injury as the result of a confrontation in October 2005. During the fight, he was struck on the back of the head with a baseball bat and sustained a traumatic brain injury.
After spending several months in the hospital and many more in therapy, learning how to walk and speak again, he found the injury left him with cortical blindness.
That is described as loss of vision in normal-appearing eyes. This is caused by damage to the brain’s occipital cortex. The eyes appear normal and will dilate and constrict to changes in light because the reaction is a reflex and does not rely on the brain.
“My eyes are fine, but the nerves in the back of my brain in the occipital lobe are damaged,” said Miles. “I have no central vision. If I would place my hand in front of my face, I could only make out the side of my hand. And my peripheral vision is scrambled. Since the injury I have regained some sight, but the doctors seem to feel my vision recovery has plateaued.”
Miles said he is grateful for help he has received at the center.
“I love being here. They have helped me so much. The best part about this center is not only do you receive information that will help you, but the volunteers are a support group, they are people with the same problems,” he said. “I don’t find myself becoming depressed by my situation. I am with people who are in the same boat.”
When Miles was brought into the emergency room at Holmes more than seven years ago, little did he know his path would cross someone’s who was instrumental in saving his own life.
“While I was in a class, we welcomed a new student named Jennifer.” Miles said. “We talked about ourselves and our experiences and the new student said ‘I know you.’ I was totally taken aback, it was Jennifer Landmesser, who was the emergency room paramedic. She helped me then and I am now helping her.”
In search of hope
Harriett Pierce of Melbourne, 89, was diagnosed with macular degeneration more than six years ago. As a former social worker, Pierce was always there when someone was in need.
“With my job, I had many people with my problem and we would find places to help them,” said Pierce. “I always maintained a list of telephone numbers of various agencies they could call. Over the years after my retirement, those numbers changed or no longer were in service. Now I was looking for a place where I could get help.”
She said one afternoon while I she was out in the yard, a neighbor came by and asked how she was doing.
“She was aware of my vision problem and I said I was trying to locate a blind association that could help me. She said ‘I have just the place for you’ and gave me their number. I called and was told about the school and their program for independent living and that they also provide transportation,” Pierce said. “I said that’s great, because I can longer drive my car.”
Pierce said the school has given her a lot of hope.
“Knowing that I was with somebody who was just like me that has given me hope. I was very depressed, but the school and their volunteer teachers, who also have degrees of vision impairment, have raised my spirits and that has helped me tremendously.” Harriett Pierce
“When I thought there was nothing out there to help me, I discovered through the doctor who specializes in low vision and various speakers from different agencies for the blind that there is,” she said. “Knowing that I was with somebody who was just like me that has given me hope. I was very depressed, but the school and their volunteer teachers, who also have degrees of vision impairment, have raised my spirits and that has helped me tremendously. What we learn in class, we take home and in order to continue your progress, you must do your homework.”’
Carol Glisson of Satellite Beach related a story about a neighbor of hers who is a student at the Brevard Association for the Advancement of the Blind.’
“Two years ago while I was preparing for my wedding, the best man’s mother, Gerry Wilson, asked me if she could help out in some way,” said Glisson. “Initially I was thankful and surprised, wondering what she could do because of her blindness. What Gerry did was make the most beautiful floral centerpieces that would amaze even a professional florist. Her blindness has not clouded her creativity. Her hands are the eyes of her heart.”
The Brevard Association for the Advancement for the Blind is at 674 South Patrick Drive in Satellite Beach. For more information, call 321-773-7222 or send an e-mail to firstname.lastname@example.org.