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Macular Degeneration – the Cinderella of eye disease

I assume you are reading this because you either have macular degeneration or a family member has.  This will have been traumatic, I am sorry and you have my sympathy, visual loss is a frightening event in anybody’s life.

You need support and help coming to terms with this frightening new world around you.

I will explain who I am and why I wrote my book Macular Degeneration – A Guide to Help Someone you Love. My name is Paul Wallis and I am an optometrist specialising in working with blind and partially sighted people.

Paul Wallis author picture

Paul Wallis

In 1977, I was working at Moorfields Eye Hospital in London.  One afternoon, a lady came to see me on her 90th birthday. She was confident the LVA (low visual aid) clinic where I worked was going to restore her vision so that she would be able to resume life as it used to be.

If you were selecting a grandmother by mail order, she is who you would pick. Friendly, grey haired, intelligent, with a sense of humour. She wanted to be able to read letters from her family, keep her independence by shopping, and do her own cooking.

I picked up her hospital notes; the case seemed straightforward. Setting to work, I did what I had been taught; I got the information I needed, made an assessment and worked out how to help her.  But I discovered her condition was just a bit too advanced and my efforts were in vain. She wouldn’t be going home able to read her correspondence or do her shopping with ease.

We both realised I couldn’t help her

There was one of those embarrassing moments where we both fell silent.  We both realised I couldn’t help her.  She stood to go and thanked me graciously. There was a sadness beneath the surface that neither of us could bear to acknowledge. I might have been the expert but I felt incompetent I hadn’t helped her. Her birthday was not a success. My faith in my job and abilities were dented by this incident.

My confidence was further eroded over time. I saw people and supplied them with magnifiers. I would be politely thanked and they went home.  But a few weeks later I would notice that the magnifying glasses were quietly returned as they were of no use and they ‘might be helpful to someone else’. I wasn’t addressing their problems. The standard formula I was taught, didn’t seem to work for a significant number of the people I saw.

I left London and went into independent practice in rural Dorset. I continued to see people on a scheme set up by the local NHS for the blind or partially sighted. There were few practitioners who had experience of this type of work in the area.

It was different in the country. In London hospitals you rarely saw the same patient twice let alone more often. There was little follow up on an individual’s progress, they just disappeared. In the country you built up a better picture of them.

Not just a pair of eyes

I began to see the long view: I often knew patients before they had visual problems.  Seeing then through crises and then after they had weathered them, I gained a perspective of them as a human being and how they coped with the changes in their life. They weren’t just a pair of eyes.skin 3358873 640

Some didn’t respond particularly well and some were challenging to deal with. The majority of people I saw for low vision work had Macular Degeneration. They were not part of the workload, they were the workload.

I almost gave up working with the blind and partially sighted, disillusioned with the help I was giving. However, I came under moral pressure from the local hospital due to spending cuts, and I grudgingly began to see more cases.

As my workload increased, I changed my approach. I had the benefit of more experience, and nobody breathing down my neck. More relaxed,  I began to listen and watch people more closely.

I was helping a bit, but there was more I could do. It has taken me thirty years to really work out what happens when you have sight loss.

This book is my atonement for failing that lady on her 90th birthday.  I didn’t understand what was going on. What I failed to do was give her hope for the future. I now know how to give real hope and that is what this book is about.

Most people expect eye care professionals to provide the advice needed to cope with visual loss.

In an eye clinic you will get important information about Macular degeneration. As would a search on google. But, it will be facts about the disease. It is more difficult to learn how to live with the consequences of visual loss.

Julie’s story

Julie came to see me with her mother for a consultation. Her mother was 77 and had been diagnosed with macular degeneration about six months before. She had been registered partially sighted and was living alone in a warden assisted retirement flat. Julie lived about eighty miles away and had a couple of teenagers about to leave for college. She was worried about her mother who was only just coping on her own having been widowed a few years ago.

They were having a fractious mother-daughter relationship. Julie would end up shouting at her mother as she wouldn’t do what she was told. The mother was retreating into herself and getting very depressed, feeling cut off. Julie would come down once a month to take her mother to the hospital to get injections in her eye and then rush off to do a month’s shopping. Neither of them was enjoying themselves. 

The elephant in the room

They were both ignoring the elephant in the room. Julie’s mum was going blind and neither of them knew what to do to cope with it. Both were trying to carry on as if nothing had changed. They were frightened of the future and didn’t know how to deal with the ‘now’. Neither would admit their fear to the other and lots of problems were being repressed but were popping out at odd moments causing the rows.

I couldn’t solve all their problems but with a discussion and explanation they realised why they had been rubbing each other up the wrong way and how they could make life easier for each other rather than more difficult. Some huge weights were lifted from their shoulders as they began to realise vision loss had a return ticket and wasn’t just a one way journey.

A book about you

This book is therefore not directly about macular degeneration. The disease will be explained where necessary and with as little jargon as possible. Screen Shot 2018 09 24 at 10.41.48

The book is more important than that, it is about you, and how you are changed by visual loss. It should fill in the answers to your questions of how to cope with vision loss. If you don’t understand something, it’s difficult to know what to do.

Your onset of macular disease may have been sudden and traumatic, or it may have tiptoed in slowly. Your friends and family won’t understand what is happening.  You may have played it down as ‘nothing important’ or it may have become a major issue, either way it will have caused you fear for the future.

If you have hit a crisis point, you will no longer be able to do everyday tasks. This book is for that crisis point when your life seems to be collapsing; you are no longer able to drive a car, can’t read a book, a newspaper, or the gas bill. You can’t recognise a member of the family from a complete stranger walking down the street.

Blindness is multi-faceted there are many different ways that you can lose vision. Macula Degeneration being just one way. Glaucoma, retinitis pigmentosa and corneal diseases all cause different forms of sight loss. This book is dedicated to macula degeneration which has very specific characteristics.

Macular Degeneration is the leading cause of blindness

Macular Degeneration has been the leading cause of blindness in this country for the last hundred years. It was the unknown disease for most of the twentieth century. People just accepted vision faded away as you got older; they didn’t know why or the name for it. Macular degeneration might be briefly mentioned in a hospital but it was rarely explained.

Until the late 1990’s, one visit to a hospital clinic was all that was necessary. It confirmed the patient had macula degeneration and they were left to cope as best they could, often with no further help. There was no treatment of any kind available.

It wasn’t sexy

Macular Degeneration was not a sexy disease to the eye care community. There are fashions in diseases and macular degeneration was not high fashion. That has begun to change over the last fifteen years and it is now getting attention, for the first time really.

It’s been the Cinderella of the eye disease world, which is tragic, considering it is the largest cause of blindness in the UK.

My aim is that you will be able to short circuit what took me thirty years to understand.

You should get a wider appreciation of what happens when you lose sight. Too often the individual thinks their life is over and they give up.  I truly believe this is not the case, you just need some help to get back on your feet again.

With information about how macular disease impinges on you, you will be able to make life easier.

Key Points 

  • There is hope after macular disease – you can become independent again.
  • Macular disease is not the end of your life.

I can’t wave a magic wand and solve all your problems, but I can give you practical advice and tips on dealing with the common complaints.  Unfortunately, you are not the first person to have trod this path and you won’t be the last. Learn from those who have been before you. You don’t need to re-invent the wheel.

The final point is that you are a VIP, a very important person, who also happens to be a visual impaired person hence the term VIP. Make the most of your new VIP status.

Find Paul Wallis’ book Macular Degeneration. A Guide to Help Someone You Love on Amazon 

Download an audio version of this chapter

You may also want to see our page about macular degeneration and failing eyesight

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