Botwood man hopes to form research institute, support group
Dealing with any medical illness can be challenging, and most times, life changing.
Botwood’s John Woodrow has been learning to cope with blindness since 2006. Now he hopes to help others by setting up a research institute and support group. — Photo by Krysta Carroll/The Advertiser
Botwood’s John J. Woodrow knows this first hand, and is hoping to be of assistance to others going through a similar situation.
Woodrow began to experience blurred and cloudy vision just before Christmas in 2006.
What he learned later was these are usually the first symptoms of Leber’s hereditary optic neuropathy (LHON) disorder.
“It was basically a stroke in the optic nerves which damaged the blood vessels and the nerves themselves,” Woodrow explained.
“At first, my vision loss occurred in the right eye, and the left eye was affected within a period of two weeks,” Woodrow told The Advertiser.
After visiting many doctors and specialists — within and outside the province — many tests and his own research, Woodrow learned LHON is an uncommon inherited form of vision loss that leads to blindness and, for reasons unknown, affects males more often than females.
What he hasn’t been able to find out is what caused this unusual condition. There’s not a lot of background material on that, he said.
It is a condition that usually begins in a person’s teens or 20s, Woodrow explained.
“However, rare cases may appear in early childhood or later in adulthood,” he said. He was affected at 60.
“Usually people have macular degeneration or cataracts, and mine is of an unknown origin,” he said. “What caused it, we don’t know. Over time, vision in both eyes worsened with a severe loss of sharpness (visual acuity) and colour vision.”
This condition mainly affected his central vision, which is needed for detailed tasks such as reading, driving and recognizing faces.
His vision loss, he explained, results from the death of cells in the optic nerve, which relays visual information from the eyes to the brain.
“Although central vision gradually improves in a small percentage of cases, in my circumstance, the vision loss was profound and permanent,” he said. “You can’t repair the veins, and you can’t repair the blood vessels.
“I am diagnosed as legally and medically blind.”
His vision fluctuates, depending on the day, he said, and he is light sensitive.
“So what I see in the daytime is like fog,” Woodrow said. “I can look at you and I can see parts of you, but it’s just sort of like a shadow in a fog.”
Sometimes, if he is looking at something, his sight only focuses in on a certain area.
In addition to vision loss, Woodrow experienced issues including movement disorders, tremors, and abnormalities of the electrical signals that control the heartbeat — cardiac conduction defects.
“Additionally … I began to develop a chronic disorder that affects the brain, resulting in short-term memory loss, referred to as dementia or the first stages of Alzheimer’s disease,” Woodrow said.
This all happened at a stage in his life, which required him to make some big adjustments, he said.
He was very involved in business, teaching and sports, and he used to fly his own plane.
Loss of vision meant he had to adapt his lifestyle, replacing the things he loved to do with other pursuits he was able to do with vision loss.
“If not you’ll go crazy,” Woodrow said.
Having been diagnosed with visual impairment and short-term memory loss, it was necessary to develop strategies to cope, he said, adding blindness affects personal life in many ways.
There are certain emotions that you tend to come up with consistently and they tend to be very similar, Woodrow said.
“The most common ones you hear when people are talking about vision loss are fear, shock, denial, anger and depression,” he said. “Fear because vision is our most dominate sense, in addition to equating a loss of vision with a loss of independence, a loss of self-worth and self-esteem.”
A sighted person will also go through a stage of shock, he said, when the brain seems to just stop gathering information and get stuck in time.
After shock, there’s the denial stage. This is actually referred to as a coping mechanism that the body physiologically has created to help adjust through stressful times, he said.
Depression is something that also follows anger,” Woodrow said. “Again this is a normal reaction to vision loss … especially when you’re no longer able to do little things for yourself. That can take away a lot, especially for people who were very independent.
“Anger begins when you are no longer able to do things like writing cheques, cleaning, cooking, driving and especially when someone has to do everything for you.”
Woodrow said there are a number of daily disadvantages of being blind, such as difficulty with moving around, especially in a new environment.
“Many things that sighted people take for granted are more difficult for the blind, such as socializing,” Woodrow said.
“Blind people are often restricted in their ability to interact socially. There can be an apprehension or awkwardness on the part of sighted people when dealing with the blind, which can lead to difficulty for the blind in developing relationships. As a result, they are often relegated to specific roles in society and are usually held to lower standards and expectations.”
Furthermore, blind people can have difficulty interacting with their environment, Woodrow said.
“Much of how people communicate is through the use of visual symbols. We depend on what we see to warn us of danger, to provide direction and to interact with people,” he said. “The blind person is often placed in a situation of being excluded from these symbols, which … cuts them off from a portion of the world.”
“With vision loss, life brings many changes, some welcome, others more difficult to accept,” Woodrow said.
By preparing for these changes people can overcome them, he said.
“I try to use whatever remaining vision I have to live an active, healthy, fulfilling life,” Woodrow said. “Living independently at home is high on my list.”
He also saids it’s important to develop useful techniques and use special equipment to accomplish many everyday household needs including personal needs, getting around safely indoors and out, reading and writing, home and kitchen safety, eating and so on.
“If you are willing to make adjustments, there is no reason you cannot continue to enjoy your favourite hobbies and activities, participate in family activities, do volunteer work, or travel,” Woodrow said. “Indeed the challenges of vision loss are consistently overcome each day by individuals who have chosen to participate fully in society.”
Sensory exercises help him increase his overall sensitivity and ability to function in an unfamiliar environment, he said.
For example, he can create a mental picture of every room in his home as well as individual items. By doing this he can recall the location of the items used in everyday living.
With vision loss, the senses of hearing, touch and smell, are more keen, increasing the person’s awareness of their surroundings, he said.
“I’ve adjusted to it because what else can you do?”
Woodrow said he has home-care workers who visit his home daily, helping with meals, cleaning and the like.
This is important support, he said, but added it is also important to have emotional support.
Having a support group is perhaps one of the most important things you can do, he said. This gives you the opportunity to talk to others who are affected by vision loss. Within this group you can share your concerns, your frustrations, and find solutions to your vision-related difficulties.
“I am fortunate to have the support of my religious community, the CNIB, the Department of Health and Community Services in Botwood who provide continuous support and recourses, my home-care workers, family and friends who provide me with the support that enhances my quality of living a fulfilling life,” Woodrow said. “I am grateful for their support and indeed blessed to have such friends.”
After coping for a number of years, Woodrow is hoping to play a key role in helping others gain support as well.
After speaking with doctors in Alberta who are researching the disease that robbed him of his sight, Woodrow decided he might try to start a research foundation and a support group.
“So that people with this kind of disease at least would have some kind of support or group, or try to do more testing to find exactly what can happen, because in today’s world, the technology is so great that it’s just a matter of if you can find the right thing,” Woodrow said.
“There are so many people out there and they don’t know where to go. They don’t know what to do. They don’t have support groups.”
For additional information respecting the development of a Leber’s Optic Research Institute Inc., John Woodrow can be reached at firstname.lastname@example.org.