Ron Demers remembers the anxiety attack he suffered after a long-term genetic disorder robbed him of much of his sight.

“It got to me,” he said. “…I just felt the whole world close in on me and I felt all alone all of the sudden.”

Demers, 63, of Rockport was first diagnosed with Usher’s Retinitis Pigmentosa when he was 22 years old. It is a slowly progressing genetic disorder that first causes night blindness and then tunnel vision.

His sight in his youth allowed him to live a completely normal life, but over the course of decades he watched his field of vision dwindle down to a smaller and smaller light at the end of the tunnel.

During the day, he said he can see shapes, but not make out detail. His particular condition also causes hearing loss over time.

Since that anxiety attack that sent him to the hospital, Demers said he has gone through the stages of grief and come to the point of acceptance. He is now putting his energy into doing something to help not only himself but others.

He has organized a VisionWalk to be held June 26 from 1 to 3 p.m. at Merryspring in Camden. The walk will raise money and awareness for The Foundation Fighting Blindness, supporting cutting-edge research to find the preventions, treatments and cures for retinal degenerative diseases. VisionWalks, held in 46 cities across the nation, have raised more than $15 million for sight-saving research since 2006.

Demers will walk with a group of people from his neighborhood as part of a team called the Clam Cove Clodhoppers. He said he invites anyone who wants to come and join in or make a contribution.

Demers said that even when he was young, he noticed he would bump into things and bang his feet, even though he thought his vision was normal.

When he was first diagnosed in his 20s, he said he thought of his blindness as being in the distant future. He said he decided back then to do as much as he could in life to be as successful as possible and prepare for the future. He said he wanted a nest egg to rely on.

He had a long career as a manager of engineering, first for Rubbermaid and later for American Tack & Hardware. He is originally from New Hampshire and spent 25 years in New York state.

In his 40s, his night vision became a problem for him, conflicting with his job, which required him to entertain customers in the evenings. He said he would spill glasses of drinks on the table during such meetings.

He also had incidents on the factory floor where he would trip over a pallet. Demers said some of the other managers in the business would laugh about it.

“I always joked about it, kept it lighthearted,” he said.

However, he said he didn’t discuss the situation often with other employees.

The condition caused him to miss quite a bit of work when he developed a macular hole in his right eye and needed surgery. For weeks after the procedure, he had to keep his head down at all times to keep the gas that was inserted in his eye from changing position. He had to sleep on his stomach and look at his feet whenever he was walking around.

All of his struggles with his vision were taking place against the backdrop of a changing economy. When the company he was working for decided to move its operation overseas to China around 2002, he decided to retire. He and his wife, Louise, moved to the Midcoast.

Demers said it was after he stopped working that the anxiety set in.

He explained that as an engineer he was always very methodical. He was used to planning every move out to the “umpteenth degree.”

“And now, you’re in a situation where you were helpless,” he said. “You’re not in control anymore.”

He said he felt depressed and was literally shaking at times.

His advice to others going through the same thing is, “Talk to people. Find people you can talk to and express your feelings. Don’t hold it in. Prepare yourself for the future.”

Blindness can be very isolating. He said people sometimes don’t know how to deal with you if you’re blind. He said that when he is walking down the street with his wife, people will talk to her instead of him.

“It doesn’t feel very good,” he said.

He noted that his wife of 42 years, Louise, has to do a great deal for him. Since he can’t drive, she has to take him places that are out of walking distance. She buys all of the groceries and does many of the other chores.

“She is my rock,” he said. “She does it all. It’s very tough for her.”

He said he was grateful for the help of the Division for the Blind & Visually Impaired in the Rockland CareerCenter at the Breakwater Marketplace on Camden Street (1-800-432-1680 or 596-2600).

The organization provides help in training people how to safely navigate the streets with the use of a cane. They can also help in matching a person with the right guide dog.

Demers has been living and working with his dog, Axel, for two years. He said there are a lot of misconceptions about guide dogs and a lot of thought and time goes into matching a dog with a person. Dogs are selected not only for their abilities, but to match the personality of their owners.

The dogs are not only highly trained, but specifically bred to have certain qualities and be free of certain undesirable characteristics.

Axel, a Golden Retriever, seldom barks and understands about 30 words including “left,” “right,” “forward,” and “back.” However, communication is still limited. Demers cannot explain to the dog what the plan for his day is in advance.

“He’s the pilot,” Demers said. “I’m the navigator.”

Demers explains, however, that Axel is not a pet. He’s a working dog and his training requires maintenance.

He said people should never approach a working guide dog or try to pet it. He said people should leave the dog alone and let it do its work.

“I depend on him completely,” he said. “He’ll keep me from getting hurt.”

Before he could have a guide dog, Demers received training with his cane. He said he was driven to a street and blindfolded so that he could not even use what little vision he has. He had to learn how to walk a distance, cross streets and then find the car again using absolutely no sight.

He said he uses a number of other senses that most people never think about. He can feel which side of his face the sun is on and which way the wind is blowing to maintain his sense of direction. He listens for the sound of traffic and even figures out where he is based on smell. For example, he said that going past a bakery, he can note the smell of bread and get his bearings.

Despite all of his struggles, Demers said he has come through it.

“I try to maintain a positive outlook on life,” he said. “I look forward to every day.”

To learn more about the VisionWalk and how to help, call Demers at 594-5458.

A similar VisionWalk is being held in Portland June 18 at Payson Park beginning at 9 a.m.

Visit for more information.