Part 4

Fate

The next day, following the neurologist’s appointment, I spoke to Alli about my disappointment in not being able to find any information about stroke and stroke support from the neurologist and his rooms at the hospital. Her suggestion to look on the internet, was brilliant. Why had we not thought of it before? I joined her at the computer and she asked me for some key words. I remembered my father had been asked to participate in a follow-up program, and the name of the group was Nemesis, a research program for stroke survivors. I knew of Nemesis, the Goddess of divine retribution or punishment. My book of mythology described her as an avenging goddess, representing the righteous anger of the gods, particularly towards the proud and the insolent. She is not one of the Furies, but was closely related. It certainly seemed an appropriate word, however black the humour was, to refer to a post stroke group by this name.

Alli tried Nemesis as the key word, but out there on the World Wide Web, there was no response.

‘Think of another word,’ she suggested. ‘How about ‘stroke’?’

It certainly did not have the same ring of mystery or intrigue about it that my word had. It was short and to the point. However, we gave it a go.

Eureka! We did indeed find in the National Stroke Foundation’s web site pages a reference to Nemesis. Not the Greek goddess of mythology, but an acronym for the North East Melbourne Stroke Incidence Study, a research group for investigation into stroke. No wonder we could not find a listing in the White Pages! There on the very last page on the web site were telephone numbers to ring for information on stroke. I copied one number down noting that it was a number in the central business district of Melbourne.

Nine o’clock on Monday morning and I could not wait to make contact with this unknown group. A pleasant voice, on an answering machine, responded to my inquiry, and asked me to speak slowly, leave my name and phone number and she would return my call. Later that afternoon, the telephone rang and the same delightful voice introduced itself. Gillian Simons, President of the Stroke Association of Victoria, was speaking and what could she do to help me?

She offered to visit me the next day, bringing with her all the pamphlets and booklets I might need. She spent time explaining that she was also a stroke survivor and could understand what I was going through.

I was so pleased to have found someone with whom I could identify and could show me the path to recovery. I suggested that I could visit her as I was now mobile and we arranged to meet the next day.

Gillian is the most enthusiastic and energetic person that I know. She explained that when she had her stroke twelve years earlier, she had felt as lost as I had. There was no information and no support group to turn to. As soon as she was well enough, she decided to set up a support group in her own area and became involved in the work of the Stroke Association so that others, like me, could benefit from her experience.

She handed over a wide selection of brochures covering all aspects of post stroke recovery and information on where to find help. If there had been a drought before on the information front, now there was a deluge. I was flooded with

information on every aspect of stroke, its effects and reactions. All the questions that had been running around in my head could now be answered. I knew I would be occupied for some time in gleaning all the information and processing it as I at last had the opportunity to understand stroke and its ramifications on my life and the others around me.

Inform

Amongst the documents I selected from Gillian’s extensive collection was one about community support, and what services were available to a stroke survivor. It described in detail the many disabilities a stroke might initiate, and various problems a survivor could face. Problems arising from a lack of communication, following speech loss, were covered in another pamphlet. Other issues included a recognition of the emotional dysfunctions that were likely to occur in relationships, because of the change in the family dynamics and circumstances as a result of a stroke.

Depression in stroke survivors had its own separate pamphlet. I learned that from one third to one half of stroke survivors experience clinical depression as they endeavour to come to terms with their changed selves and their lifestyles. Therefore it is very important to have this diagnosed quickly and the appropriate treatment given. I could certainly understand how easy it is to become depressed when one is suffering from the grief of losing your known self and half your body.

I noticed that many of the brochures that Gillian had for me had been developed and printed by the Brain Foundation of Victoria. This is a charitable organization which provides support services and educational programs for people who are brain damaged and their carers. It also raises funds for research into the prevention of stroke and other neurological disorders. To my surprise and delight, there was even a small booklet entitled Stroke Recovery Highway, complete with a map and signposts to show how to negotiate oneself through this new territory of information.

There was a brochure dedicated solely to rehabilitation. As I read through this one, I realized that rehab. is not just for an hour a day, or a few weeks, but for the rest one’s life. It described rehabilitation as the process of active change. A person who has impaired function resulting from a stroke has to learn to adapt to his or her new situation. They also have to acquire the new skills needed to attain their optimal physical, psychological and social potential. Every chore we do, every exercise we practice, is helping us to reach our greatest goal; our best selves.

I can see that even writing this essay is another aspect of rehab. By recording where I began, and the stages through which I have passed, I acknowledge how far I have come as well as recognizing how far I would still like to travel to reach the ideal me. As I write these words I see that I need to continue to be flexible in my thinking and continually readjust this image. The resultant me is the sum of all that has come before. Whether it was a good or bad experience, it has coloured my life and shaped my personality.

Define

The final document was titled What is a Stroke? and was written by Professor Geoffrey A. Donnan from the Austin Repatriation Hospital. He explains in great detail, but in layman’s terms, the processes of stroke, how it happens, how it is investigated and so diagnosed. He explains that no two strokes are identical and what eventuates will depend on how much permanent damage has been done and where the damage has occurred in the brain and its functions.

Donnan describes in detail the different types of stroke, from a clot or embolus in the blood vessels to an aneurysm – a weakness in the wall of an artery that can burst or a haemorrhagic stroke caused by a small bleed from a vein or artery in the brain.

A stroke affecting the left side of the brain shows up as deficits on the right side of the body and vice versa. The left side brain usually controls speech and some people may lose some or all of their ability to understand words and there can be strange changes in vision, touch, judgement and thought processes. The most common effect is called hemiplegia – half paralysis – and the muscles on the affected side can become weak and floppy or alternatively cramped and inflexible.

The statistics on stroke were staggering. I had no idea that this condition was so widespread and covered such a range of ages. It is the greatest cause of disability in Australia. Forget about it happening only to the elderly, here were the figures to show that children as young as one or two years old could have strokes. Stroke does not discriminate. In fact the figures from the National Stroke Foundation show that last year 500 children in Australia had suffered from a stroke.

Over 60,000 Australians have a stroke each year, of which 20,000 die within the first three weeks. There are at least 400,000 stroke survivors out in the community, with various degrees of disability and deficits. If we consider each stroke survivor has a minimum of three close family members or friends, a staggering figure of 1.6 million Australians are affected by stroke and this is only considering the survivors. Twenty thousand families each year have suffered the loss of a loved one.

Some of the following statistics sound overwhelming but these effects are often transitory, not permanent. Stroke survivors do often recover some abilities.

Eighty percent of stroke survivors have hemiplegia. Fifty percent of stroke survivors have slurred speech and weak and flaccid facial or body muscles.

Thirty percent lose the ability to understand words or have difficulty in swallowing.

Fifty percent have disturbances to their sense of touch. They can experience blunted senses, clumsy movements or the inability to know where a limb is without looking at it.

Seven percent have disturbances to their vision, such as partial or complete loss of sight in one eye, or half of their field of vision.

Others may experience loss of awareness of everything on that side, including their own body. This is called neglect.

Two percent suffer a very unpleasant or throbbing pain called central nerve pain or thalamic pain syndrome.

Deliver

I asked Gillian for some extra brochures describing the work of the Stroke Association of Victoria. The Association is a network of people whose lives have been changed by a stroke and now volunteer their time to visiting, counselling and listening to new stroke survivors. The Association also assists in the establishment of stroke support groups. Gillian handed over a large bundle of these brochures.

Within the next few days I returned to the stroke ward at the hospital, and also to the rehab centre, and handed over the brochures to the staff. I did not want anyone else to experience the isolation I had felt. I believed it would benefit both the stroke survivor and their family to know that an association of supportive care was available to them; and to be given this information immediately on their discharge from the acute hospital. I distributed the remaining brochures to my neurologist, for his waiting room and to my local doctor, so that the professionals as well as the survivors of stroke would be appropriately informed.