Living with Aphasia

Read how aphasia has affected the lives of two people - the first a person living with aphasia and the second her husband and carer.

A person living with Aphasia

I had a hearing problem and an acoustic neuroma was diagnosed. The tumour was very small but after a few years it began to grow and the consultant decided that an operation was needed. In 2001 the operation was successful, but two days after the operation I had a stroke. In the early hours of the morning, I found myself being on a trolley, to where I was going no one knows. After that I went back to sleep. At breakfast time, I was a little confused, not being able to say porridge I had cornflakes instead!! After that my daughter came early before her work and she found a mother who couldn't speak properly. She drew some cartoon pictures to work out my early morning 'adventure' and at that time the consultant came and said “You have had a stroke” and I thought to myself 'Oh yes, that’s what it was all about'. It was lovely to see my family in the afternoon/early evening but I was too tired to 'talk' or understand people.

At that moment my life changed. I had retired that year and I had plans, and Bob retired the month after the operation and we had plans together.

I did know that some people had difficulties with speech after a stroke, but I didn't understand how my grammar, speech and written words, would go. Talking like a six old was hard, but one day I had to write a letter to a friend. I sat before the computer and opened it and though I could work the computer I was very upset to learn that the words stayed in my brain not on the computer screen.

I could read books in the hospital and I would remember the plots but not the details of the books. In the hospital, the consultant was surprised to see me reading and encouraged me to try magazines so Bob brought some magazines but I went to the books. Before the stroke, I had joined a library readers group, after 6 months I re-joined the group and the members were very good and one member made sure that I had time to join in with the discussion. I read well but I cannot read for a long time.

Music (classical) was a big part of our leisure time and we had joined a Recorded Gramophone Society. Hearing music was bizarre because everything seemed the same, but my enjoyment of music recovered although I cannot remember some of the composers of the music that I am listening to. The group welcomed me back to the Society and that helped me.

Another surprising is that I am singing in a proper choir - the wonderful Magenta Singers – and I feel this a very stimulating and enjoyable activity.

I guess that in the early days the most very important person (after Bob and my family) was the Speech Therapist who gave me hope and who also knew everything about all the things that we needed to know. It was the Speech Therapist who explained about aphasia. She referred me to the Aphasia Clinic (as it was called in those days) where I met people who had the same problems as myself. There we used games which helped to uncover facts buried in my brain, and also the students there gave speech therapy. At that time people asked about what we could do next and that is how NETA began.

Then, the Speech Therapists ran a similar course and there the students worked with my speech and with my written problems. After that the Speech Therapists worked with my grammatical writing and I joined a Skills for Life class run by Newcastle Council and re-learned the basics of grammar. At that time I was studying Local History and I asked the tutor if there were any Higher Ed. Classes and because I had a degree (before the stroke) he said that I could try an M.A. So I did try!! I loved the course (Local History) but in the end it was too hard. I was too slow in reading and the writing - and grammar!!

Literacy is very tiring and discouraging because I have all these words rolling round in my brain, which I could use but they don't want to get out!! But I try, try and try and in the end I win.

Photography was a very important of my life and the first course I took after the stroke was digital course and that was good and the members of the course (all men) were very helpful. After that I went to college and took a few more courses with a HCN course at the end. Now I run a few photography/digital courses for people with aphasia.

My involvement with NETA is the most challenging and the most inspiring of all the activities that I took up after the stroke. I was able to use some of my experiences with former paid and charity work and have used elements of my degree. I have been to places and met people that I would not have encountered before and I have come across people from the wider disabled community. All the people from NETA are very brave, funny, wise, supporting and companionable and I am lucky to know them.

Everyone who has had a stroke/aphasia faces difficult times ahead of them, but don't lose heart. Join a few stroke/aphasia groups for support and new friends. Try a new activity. If you don't like it walk away from it but try another one. Join a non-stroke group and you’ll find most people are helpful. Some councils have classes for people with disabilities and some have a doctor's referral system where people can use the gym free. For people with aphasia, use the Speech Therapists they have a fund of knowledge.

Good luck.

Janet Speight

The husband and carer of a person with Aphasia

The year was 2001, Janet, my better half, had been having problems with an acoustic neuroma, a benign tumour on the acoustic nerve, which caused her deafness in one ear. Although non life threatening, indications were that it had grown slightly. Long term, it could grow and cause problems with the facial nerves, vision, balance, dizziness and possible poor limb co-ordination. The problem, because of the length of the operation (about 4 hours at that time) was the question of whether to leave it until she was older, with greater risk of more irreversible damage and increasing risk of a long or longer operation. She decided to go ahead with it on the basis that the younger she was, the more likely the successful outcome. My own situation was at the beginning of 2001, that with joint agreement. I would take early retirement later that year. As luck (?) happened, this turned out to be one of the best decisions I had made. The operation was carried out in September 2001 and was relatively successful. However, after some 48 hours (it was a Friday dinner time ) I received a phone call from our daughter to the effect that Janet had suddenly taken a turn for the worse.

Dropping everything, I set off to the hospital. Janet looked disorientated and confused. She did not seem to recognise us or what we said. More disturbing, when she tried to talk, what came out can only be described as gobbledegook. It took some time for us to be told that she had had a stroke. For us, not knowing anything about strokes, my imagination saw the worst, not helped by the statement that not much could be done to improve Janet’s lot. For a brief period of time, in Janet we did not know what we had ( This sounds shocking, but I do not know any other way of putting this. I am sure many families go through this same feeling in similar circumstances). Little did we know how much our retirement plans were to be affected. Life was livened up when a week after returning home, Janet took another turn and a soaring temperature which necessitated a blue light and siren trip back to the General Hospital followed by another three weeks in hospital. Fortunately (?) this was non stroke related and afterwards things settled down to some sort of normality, with some hard choices to be made.

Prior to her stroke, Janet and myself had a healthy outdoor life style. We both liked walking. We both cycled, particularly biking on the rough forestry reserve tracks in Northumberland. We had a yacht on the Forth of Firth and had hoped to use it to venture further afield. The down side was that this all changed. In addition we liked reading and classical music. Janet was a member of a reading group. We were both members of a classical music group. Janet’s stroke initially had devastating effects on her ability to read and she could not remember any classical music, although she knew what sort of music she liked. The stroke necessitated her absence from both of these groups for about 6 months. Prior to her operation, I had agreed to take her place in the reading group on a temporary basis. Both of us were keen photographers and both used computers extensively.

With regular, but rationed, Speech and Language therapy her speech began to return. Speech and Language therapy, although good, was rationed by time (there were not enough NHS Speech & Language Therapists to go around). A 12 week course at Newcastle University’s Aphasia Clinic set her on track to talk with a reasonable degree of fluency.

Janet came back into the reading group gradually, just listening to what people had to say about the books they had read. Slowly she started reading a little at a time and after many months could eventually read a complete book. Listening to music was slightly different, not knowing the composers she liked and to begin with had to content herself with listening to the choices of others. Over a period of time her memories of the music she liked began to return. A common denominator in both of theses groups was the support she got from the members. These two hobbies helped us enormously. Photography was one hobby which was not significantly affected by Janet’s stroke. Although the stroke cramped the places we could visit and photograph, it opened up different subjects and perspectives closer to home. Different attachments for her computer enabled her to continue using it and the internet offered her an easier way to access information.

With time, Janet re-acquired most of her mobility and we can now take walks in relatively easy country side. However, cycling was out of the question. We travel abroad, mainly by train and ferry with easier time schedules, to avoid the hustle and bustle of airports. We tend to pick hotels which are near the ferry or train terminals to reduce the carrying of luggage. Janet became one of the founding members of the North East Trust for Aphasia and continues to spend a lot of her time working for that organisation.

A stroke will change family life, but with different approaches there are ways around the problems. At first sight a stroke may look catastrophic and the days immediately afterwards are probably the darkest for everyone in the family. But you are not alone. There are numerous groups out there who can help and the internet is a great source of information. However, with time things can improve, but this can vary from person to person. For the person who has had a stroke on the left side of their brain, communication is everything and it is essential to get them back into society. It is important to try anything and everything to get them back into their hobbies, particularly if they are group hobbies. Other group members are often supportive and help bring the patient back into the community. Alternatively, try to get them interested in a new group hobby which is not affected by their disabilities. Music is a great tool to restore memories and can make new friendships. With physical hobbies such as walking or cycling, you may have to set your sights somewhat lower but in the long run will be good therapy. Do not be afraid of trying something different (painting, drawing, photography, singing, discussion groups, even wood turning and driving a car !. The range of opportunities is increasing. Remember, nothing ventured, nothing gained.

R.Speight

If you live in the North East why not contact NETA about attending our Support Centre, which provides ongoing support and well being. More information can be found by clicking here.

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