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Learning to live with the effects of a stroke

Mrs. Hilary Soares. The atmosphere was calm, the people attentive.What message, they wondered, would this courageous and compassionate woman bring them? All too soon, they got their answer.

Mrs. Hilary Soares. The atmosphere was calm, the people attentive.

What message, they wondered, would this courageous and compassionate woman bring them? All too soon, they got their answer.

Just six minutes into her address, Mrs. Soares felt as if she had been struck a mighty blow to the back of her head with a wooden plank.

"How very rude,'' she thought to herself. "Why would they invite me here and then hit me on the head?'' Turning around to face her "attacker'' she saw no one. Simultaneously, she was inflicted with the most excruciating headache she had ever known.

Unable to go on, she apologised to her audience, promised to return when her headache eased, and beat a hasty retreat home.

Over the next three days, she experienced two more attacks. The hospital advised her to go home to bed.

On the third night, the pain in her head was so unbearable that the oncology nurse knew she was in serious trouble.

"I told my husband: `Call the family doctor and have him meet me at his office in the morning. Tell him to see nobody else but me, otherwise I am going to die','' she related.

Filled with an overwhelming sense of doom, Mrs. Soares even said goodbye to her children.

At the doctor's office, she literally collapsed in his arms, and for the next ten days of her life knew nothing more.

It was March, 1987 and she was just 46 years old.

Thus began the on-going battle against the effects of a stroke, which she meets with characteristic determination.

"When I suddenly came to and knew what had happened to me, I said, `I am going to be 100 percent well, no matter what','' she remembered. "I wasn't depressed, and my recovery started from that point.'' Seven years her junior, Mr. Mark Selley awoke one morning in November, 1991 with pins and needles in his left arm and leg. Once out of bed, he was so weak that he fell off the toilet seat, cutting his head on the bathtub.

With his weakened left side, he struggled for 15 minutes to get up off the floor. Eventually the numbness waned enough for him to get dressed. He had twin sons to collect from their mother and take to nursery school and he knew he mustn't be late.

Whatever it was that affected him seemed to have passed as Mr. Selley climbed into his truck and made the journey to his sons' home. On arrival, the mother of his children, a nurse, was so concerned at his grey appearance that she urged him to see a doctor immediately.

On completing the school run, however, Mr. Selley returned home. "I felt perfectly normal but absolutely exhausted. All I wanted to do was lie down,'' he remembered.

Meanwhile, the twins' mother discussed Mr. Selley's condition with her colleagues at work. Alarmed at their diagnosis, she called his home, and ultimately went 'round with an ambulance, where the medical team wasted no time in rushing the -- by that time -- very ill young man to hospital.

He had had a stroke and the left side of his body was now in paralysis.

It was Day One of a long, hard and continuing fight against his disabilities, which would include three-and-a-half months of extremely intense therapy in a Boston hospital.

Today, although the effects of Mrs. Soares' stroke are far more subtle than Mr. Selley's, both have two things in common: motivation and determination.

"In this particular disease, it is motivation, initiative and total commitment that get you well. Nobody else can make you well,'' Mrs. Soares said.

Countless hours of sheer hard work and raw physical courage have brought the two of them to a point where they are now back at work, able to function independently, and also spur on other stroke victims through the Bermuda Stroke and Family Support Association, which they co-founded in July last year.

"While I was in Boston, both the acute care and rehabilitation hospitals had stroke support groups in place which met twice a week with family, care-givers and patients,'' Mr. Selley said.

Mrs. Soares, too, had been thinking about a support group "because I needed help and everybody else did too''.

When the two finally met up, they agreed to start a local support group together.

"The Association, which is a registered charity, is dedicated to patient care and family support, and would like to help in any way it can at a crucial and critical time in the lives of those affected,'' Mr. Selley explained. "The patient's recovery is important to us.

"We try to tell the patient and/or the family care-giver(s) that there is life after a stroke. It is fallacy, and has been for too long, that when you have had a stroke you go into retirement. That's the worst thing you can do,'' Mr. Selley said.

While every stroke ultimately leaves the patient with "deficits'' -- in Mrs.

Soares' case, it is mainly memory recall and a partial vision loss, and in Mr.

Selley's, partial paralysis of the left side -- both are proof positive that life can go on.

Key ingredients to recovery, Mrs. Soares said, were: a will to survive, a positive outlook, a desire to do things as well as one possibly could, and a need to become self-reliant again, if possible.

To that end, the Association was working closely with Job Opportunity Bermuda (JOB) to help stroke patients regain at least some of their former independence.

"JOB is an agency specialising in putting the physically challenged back into the workplace. Through their computer they match up applicants with appropriate tasks,'' Mr. Selley explained.

"We want to put people back into some mode of accountability and responsibility in the community. They may get paid for their work, or it may be voluntary, but at least they will have some structure put back into their lives, instead of sitting around doing nothing.'' It was also a matter of self-esteem, the co-founder added.

Among the difficulties stroke patients faced, particularly from employers, was the perception that they were left mentally impaired.

"People should know that, after a stroke, there is still a perfectly sound mind that operates, and for the most part feelings are still intact,'' Mr.

Selley asserted.

"The Association has a number of members who have been tossed out of their jobs,'' Mrs. Soares added. "Employers don't even try to give the employee any kind of work. Even if the employer gave them a couple of hours' work answering the telephone or something it would help greatly in their rehabilitation.

Getting the individual back into life again is important.'' The Bermuda Stroke & Family Support Association meets on the third Wednesday of each month at 7 p.m. in the first floor conference room of the King Edward Hospital.

Guest speakers are invited to address a variety of relevant topics, and support is given through sharing a common experience.

Millions of people have suffered strokes of one sort or another. Most are left with some degree of permanent disability, while others die. In some countries it is among the leading causes of death, yet public ignorance on the cause and effects of strokes is widespread. The National Stroke Association of America sheds some light on the subject: Definition of a stroke: A sudden, often severe impairment of the body brought on by a disruption of blood flow to the brain, which brings about a lack of oxygen to the cut off areas, and a resulting death of brain cells and nearby tissue.

Interruption of blood flow can be caused by blockage or constriction of a brain or neck artery, or by bursting of a section of an artery wall with subsequent bleeding into the brain.

Stroke Types: There are three main types of stroke: Thrombotic: When blood flow in an artery to the brain is blocked due to a clot in the artery.

Atherosclerosis: A build-up of fatty deposits in the artery walls causes them to narrow. Blood flowing through narrow vessels tends to form clots. This accounts for 60 percent of all strokes.

Embolic: A clot originates somewhere other than the brain. A piece breaks loose and is carried by the bloodstream to the brain, where arteries branch off into smaller vessels. When the clot reaches a point where it can go no further, it plugs the vessel, cutting off blood supply. Known as an embolism, it accounts for 20 percent of strokes.

Haemorrhagic: A blood vessel in or near the brain ruptures, spilling blood into the brain or surrounding area.

Clinical signs and symptoms vary for different kinds of strokes. Warning Signs of Impending Stroke: Sudden blurred or decreased vision in one or both eyes; Numbness, weakness, or paralysis of the face, or in either an upper or lower limb, occurring on one or both sides of the body; Difficulty speaking or understanding; Dizziness, loss of balance, or an unexplained fall; Difficulty swallowing; Headache (usually severe and of abrupt onset), or unexplained change in the pattern of headaches.

HAPPINESS IS . . . regaining one's life and independence after a stroke. As co-founders of the support group, the Bermuda Stroke and Family Support Association, Mr. Mark Selley and Mrs. Hilary Soares are living proof that a positive outlook and determination can work wonders.