A little bit normal

I have named the way I now speak as Aphasiaspeak, of course it has no real meaning but to me it is a name I gave it to differentiate it from my own voice.

I have found I feel a little bit more normal at the Stroke Association group I attend as there are several people just like me with Aphasiaspeak. When I mix with people outside I am aware they are not sure how to communicate with me and today we had a visitor and I asked that she looked at me when she spoke, 'oh OK,' she said. It sounded a little like she was surprised at the request but to be honest it is just what you would do to anyone really.

I had to go to hospital yesterday to see the stroke doctor. She didn't keep eye contact with me and sometimes it was a bit hard to catch what she said and she didn't really listen to me. I know some people look to my husband for translation at times but even he, on occasions, can't understand. It is so frustrating when I cannot get the words out or find the word I want, I know they are there and many times I feel I could say the words but they just won't come. I have a picture in my head of what I want to talk about all I need is someone with telepathy! 

Communication is more than words, facial expression, hand gestures, body movement and your eyes all mount up to communication. If words fail you then if you can try with a few words and gestures it is possible to convey some meaning. I have often been told in the past if you couldn't you your hands you wouldn't be able to speak! Thankfully I can use my hands and it has made it possible to communicate what I want or need. 

I have been interested in what an American Aphasic has said about working with the law enforcement in his area. Some Aphasics have had problems with police officers who have taken them for being drunk as they couldn't speak properly. In a situation where a person is being interviewed by police officers they can become stressed and get confused as they are asked questions. If you start from the position of being unable to communicate and the pressure becomes increased then words do literally fail you. Police who are not acquainted with Aphasia do not understand the problems it can have, mostly that it is not just a difficulty in speech; that is just the obvious part of the condition. Reading and writing are part of it too and an Aphasic would most likely not be able to read any document given to them or even write their name and address. One thing that police should also realise it that understanding is very much lacking with many Aphasics. They cannot understand even simple instructions or follow a train of thought. It can look very much as though they are being awkward or belligerent when it is the process that doesn't work. 

It pleases me that law enforcers are willing to learn about conditions such as Aphasia. It is a long time coming as it isn't as though it is a new condition it has been around as long as strokes have affected people. If they don't have anyone in their family or friend circle with the condition they believe that there is nothing wrong as Aphasics look like anyone else it is just their speech that is apparent when they talk. But the fact they are willing to learn is a step in the right direction.

Aphasics are not abnormal, subnormal they are normal in their own way. Because I cannot talk well doesn't mean that I don't understand, sometimes I am confused and misunderstand what is said but that doesn't mean I don't understand everything. Reading is hard and a work in progress, writing takes time and I have to spend time finding words and meanings so I find the right word. I can go a couple of days without writing my blog while I search for a word I want. 

Patience is the key for people communicating with Aphasics, patience to have eye contact, speak slowly, if a question is not understood find another way to word it or write it down, draw a picture if possible and not use long complicated sentences. For me keep it short. Don't try and hold long conversations, keep to about 15 minutes and take a break before resuming.  I do tend to run away when it all gets too much but if I try and stick it out then my speech will become more and more incomprehensible. 

As I tick off the list of the effect Aphasia has on people I can see I am a little bit normal. My speech is affected, as is my reading to a degree and my writing is not too bad but takes time/ I do understand, mostly, what is said although I can get confused and panic.

A little bit normal? Yes I can take that, but what I would like is more understanding of the debilitating condition Aphasia is and that can only come about through educating people and the police are a good place to start.

Effort, time, practice and training

After three months I had hoped to see significant improvement in my Aphasia, I have but not in quite the way I had hoped.

In hospital the surroundings and the daily living was different and I coped really with just speaking. I understood and heard all that was said, sometimes I needed to clarify certain things but really it was fine. Looking back I felt comfortable there as people understood the problems we faced on a stroke ward. They could understand how we felt and reacted as they had seen it before and took time to sit and talk to us, encourage us and let us cry if we wanted to. I often had the curtains round my bed closed as frustration took over!

Then I came home and my husband has been excellent at figuring out what I want and what I need. We get by and he regularly treats me to a surprise not huge but to cheer me up. He does sit and talk with me, he holds me and lets me get the frustration out. He has always said that he doesn't know how it feels but does see what it does to me. That is all I ask.

After two weeks of respite care I came home again to start living and that is when I really noticed the problems mount. I had found the background noise a big problem in respite care, the dining room and television rooms the worst. At home the noise from the road is terrible and shops are so bad I have to wear ear plugs there as well.

Now things are adding up, I cannot watch the television or listen to the radio if there is a lot of talking on the programme. I love detective programmes but it gets to me after a while and I have to switch off. I listen to a classical music station which plays music with very little talking. I love to read but that is becoming more and more difficult. Partly the Aphasia I think there but also I have Sjogren's Syndrome and have very dry eyes. I find myself doing nothing a lot of the time and have taken to resting or playing games to get my brain working.

Maybe it is because I don't talk as much as I used to but my voice gets crackly after a while, I noticed this twice this week. Monday I went to the Trefoil Guild and enjoyed the evening of a talk by a young lady from Canine Partners who brought her lovely dog Whiskey along. I spoke to people and we discussed guild matters after the people from Canine Partners left but I had a very sore throat next day.

Wednesday I went to a club run by the Stroke Association which was set up for Stroke survivors to meet up but mainly the people there are Aphasic. I met people with different types of Aphasia and this made me feel much more at home and normal. I was told I am normal but up till then I was feeling isolated. One man cannot talk at all, one says very short sentences. I was happy that I can communicate as much as I can but for me it is when I try and explain things talking gets harder and harder. The thoughts are so fast the words are so hard to grip. Sadly some people don't understand this when I explain and say well slow down then. If only I could. I am thinking so quick I am not fast enough to catch each word and the words go along so fast I lose more and more of them. My speech gets worse and worse too and that is when people want me to slow down. A yes or no question is OK or a choice like tea or coffee, I manage that no problem but when I need to explain something then everything falls apart.

Something else happened today that I cannot explain. I said something to my husband and in my head it sounded 'normal' and I was excited. I said something else and it was back to Aphasicspeak as I call it. I asked my husband about it and he hadn't noticed any difference in my speech at all, so it looks like wishful thinking on my part.

I invested in some new earplugs and a pair of ear muffs yesterday when we went shopping. I like the new ear plugs better and with the ear muffs over I am a separate entity from the world. My husband has to tap me to get my attention when I am in them as I am on planet me.!

The noise in the shops was manic and if I hadn't been desperate to get some Christmas shopping in then I wouldn't have bothered.

So, you are wondering, if reading and talking is so hard how am I writing this?

I make things up in my head over a period of time and write bits down. I go away and come back to do more. I can spend ages looking for one word that I want to use and being a perfectionist I will search and search until I am happy and I will admit I am not always happy because sometimes I can't find a word I want. Effort and time are the answers to how I do it. I look on my writing as a form of sport where people practice and train until they put in their performance and hope the time spent in preparation has been worthwhile.

Is that the answer to my speaking problem? Not enough practice? Not enough training? Not enough effort? Not giving it enough time?  I still talk but need my husband to talk for me more which, he says, is a  novelty!

What happens then if things that I enjoy are being taken from me? I adore reading, I devour books. films, plays and television programmes. I dread to think I won't have anything left that I can lose myself in.

Aphasia is very isolating in many ways and it does cause so much distress. I feel that each thing I cannot do is a loss to me. I mourn for me before this and I am mourning with each loss of enjoyment. If people think that Aphasia isn't life changing then they have never had to give up anything that means a lot to them.

The three Rs

You will possibly only understand Aphasia if you either have it, know someone with it or are a speech and language therapist. Even then, as I have found, having it doesn't mean I can understand exactly what others are struggling with or they me.

I have mentioned before I love to read. I have a Kindle full of books that I haven't yet read and sadly will not for some time.I also have shelves of books that I read over and over again but they are ignored for the time being. I have had to change my reading matter for things that are 'light and fluffy' as I call it. That is family sagas that are fun and easy to read. Well not really easy as I have mentioned I tend to find each page is like a new book and I cannot remember what has happened previously in the story. I spoke to the speech therapist about it and she has suggested that I read a page or two and then write down a little about the story so I can refer back to it. As time progresses I might be able to read more pages until I get to a whole chapter before writing anything down. But not to get too ahead of myself I am on the one or two pages at present.

But today I had a slight breakthrough! I was reading a page and something seemed to niggle at me. I am sure I have read about this character or situation before in another book of the sagas. I have tried to find it but cannot be sure where it was so I have this niggle going on. Hopefully I will be able to match it up but I am sure I am not imagining it.

I also like doing crosswords but they are much too hard at the moment. I am not referring to the Times crossword just one in my womens' magazine. I just can't think of words that will fit and I do them to keep my brain active! I shouldn't get upset but I do. Sometimes I just cannot understand the question even let alone the answer. So I have stopped doing them it is much too upsetting and I will try again in a few months.

I also find that numbers are so difficult at the moment. I recognise numbers on their own but as a sum I can't do it, even if it is easy sums. The same goes for money. I look at the coins and I look at the numbers on them but adding them together is panic stations. I have had to trust people to take the correct money or give the correct change and I hope they are honest. I know that paper money is more than coins so at least I have that advantage but it isn't any help when I don't know what change they will give.

I feel I should be starting school with the nursery class to learn to read, write and add up. That sounds silly but I do feel like a small child again starting out. I have good friends who will help me as well as family but whilst everyone is doing things almost automatically I am struggling on the edge.

When I think of the double As I got in English and the B in French after my second stroke I cannot believe I did it but then I didn't have Aphasia. I would love to study again but how can I? I love English literature and history. Now I have the time to study I haven't the ability. I do take photographs and intended to do a photography course but the communication would be difficult as it is in a group where everyone is talking. I can't cope in those situations. An online course would suit me from that point of view but then there is the reading and writing to be done. I just seem to go round in circles.

Some information on Aphasia I was given talks of the problems people have in returning to work or getting a job if they have Aphasia. I wouldn't know how to start looking for a job if I was of working age. I was in a job where I was communicating by telephone, face to face and in writing. I did a lot of number work, adding pages of figures together; a job I wouldn't be able to do now.

One thing that Aphasia does is make you isolated and I feel that very much. I can't use the telephone unless my husband is here to answer and put it on speaker so I can hear. I can't even buy on line as he has to be here to do the money side. I want to go out but I am scared, of what people will say, how they will react and how they will treat me.

I can't stay home for ever I know that and I must take that first small step to mixing in public.

I use a wheelchair so already people know I have mobility problems but when I open my mouth to speak my Aphasia will stand out. I have been saying to myself I have a problem but if people want to be rude and ignore me then they have a bigger problem than me.

I told the staff in hospital I want to get a T-shirt made that says. I take medication for my conditions but there is nothing you can take for ignorance!

I will continue to read, continue to write and continue to get to grips with numbers. All will take time and it will take as longs as it does to get even a little way. Tips from the professionals help and eventually we find a way of coping ourselves. Sharing with others helps too.

Today I hoped I had made a little breakthrough, perhaps I did perhaps I didn't but something seemed to strike a chord with me. Little breakthroughs lead to bigger ones, I will keep looking and hoping.

Aphasia and me

I wonder how many people know what Aphasia is. Before it happened to me I hadn't heard of the word but I can assure you when it happens it has a devastating affect on your life.

Essentially it affects language. The understanding, the speaking, the reading and the writing. It can also affect the use of numbers. Whilst not understood by many it affects around 250,000 people in the UK.

Not every aspect of language affects every sufferer nor in the same degree but it isn't easy to live with or accept.One of the causes of Aphasia is a stroke but it can also be caused by brain injury, infections and inflammation and brain tumors. However it is caused and the degree and aspect of it are all dealt with by a speech and language specialist. The ways they help are varied but it is invaluable to understand what has happened and how you can live with and manage the condition.

I have had two experiences of Aphasia, essentially the same, the way they were dealt with differed greatly. The first time was following two mini strokes close together a year ago and I received no help at the time. My husband helped me by making me repeat words over and over again. He started by bringing me a meal and saying 'meat, vegetables, potatoes', and when I could say that (albeit not clearly!) he started to say the type of meat or fish, the type of vegetables, the type of potatoes (mash, boiled, roast, chips etc). Then we went onto other things like fruit, clothes, flowers and much more. It was a long, tedious journey and although not conventional we had no other idea in how to do it. Not being speech and language therapists we did our best and by this summer I had almost regain normal speech. Then out of the blue I had another stroke, almost a year to the day of the first one last year.

I was sitting using my Kindle when my right hand wouldn't move. My husband happened to come into the room and I couldn't talk to him. He called an ambulance and I was taken to hospital where I was Thrombolysed. This is a clot busting drug treatment given within four and a half hours of a stroke.

I wasn't able to use my right side and as I am very right handed learning to do anything with my left hand was very difficult. I had physiotherapy and occupational therapy plus the speech therapy, quite grueling but effective.

Physiotherapy wasn't as effective as the rest as I have used a wheelchair for about 12 years and hadn't walked far for a long while which was difficult to explain to the physios under the circumstances. However, the occupational therapists were more accommodating.

I regained the strength in my right side slowly and each little improvement was an excuse to celebrate! My speech became a little better but I still found it difficult to find words and when I got frustrated I would find my speech back to square one.

The Aphasia had affected my speech and to some extent my reading. I love to read and to write so losing even some of that was a blow. I found every page was like a new book as I couldn't remember what had happened before. Sadly I knew something had gone before but had no idea what it was. When I wrote I searched for a long time for certain words. My brain was going so fast it was like trying to snatch at clouds, not able to grasp them. In my head was everything I wanted by across the middle of my face was a barrier that opened slightly then crashed shut. It is still there but opening a little more each day. When I am tired or frustrated it slams shut again and I am rather despondent. Whilst some words are elusive others are quite easy to find and those are ones that I feel wouldn't come to mind in a million years! My speech therapist said this is because I read and write a lot so my brain works in a way that finds these words. Strangely in speaking little joining words such as and, the etc won't come out all the time. I stutter over words that are similar and have to try and slow down my brain which goes at such a rate I am exhausted.

Speech Aphasia has several degrees and mine is not too bad. Some people I met in hospital have little or no speech at all. Others can't read or write, whilst some have no understanding of what people are saying to them. At first I understood at a basic level but it improved, for others, sadly, this won't happen. One lady could say only yes and no, but when the speech therapist encouraged her to sing she could make many sounds and she became brighter and happier. I can understand but have difficulty when in a noisy environment or in a group. On a one to one basis I manage quite well but if I get two people talking to me at the same time I just cannot cope. I need people to talk slowly and not use long or complicated words and I am better when not tired or anxious.

My speech therapist made me a card which pointed out I have had a stroke and have Aphasia then lists what people should do to help me communicate with them.
Talk to me, I can understand you
Don't talk to me like a child
Give me time to respond to you. I need a few seconds to gather my thoughts.
Don't interrupt me or finish my sentences.

Another thing I have found is that my emotions are very much on the surface and at times I am irrational. I don't know why but it is upsetting for me as well as another person.

Aphasia causes many feelings. Isolation, frustration, anxiety, anger, lack of confidence, depression, uncertainty, embarrassment, a different way of life and guilt. It can also mean relationship issues, unemployment and boredom. To live with Aphasia means a whole new way of life as communication is very much the basis of life. Work, leisure, relationships all rely on communication and it means learning to live again in a different way. Getting the right sort of help will make this easier but it will take time. I am not a very patient person which isn't helpful! My husband says pacing isn't in my vocabulary, which I agree with. But this needs my patience and so I will have to give in and be good.

I will admit I find this scary. I have had 12 years to get used to being out and about in a wheelchair and have endured the 'does she take sugar' episodes. Now I have a wheelchair and Aphasia and how will people treat me then? I can't lock myself away so I shall have to face it, and I know my husband will help. I want to get back to my leisure activities and meet people who I know. Those people I am sure will not treat me any differently than before but it is meeting people for the first time that scares me.

I am at home and I WILL get better. Not everyone recovers at the same rate and some will never recover completely. I may not be able to communicate in the same way ever again but I have to accept Aphasia is there and find a way of coping and living with it. Some days I can talk, not clearly but talk, other days nothing happens so I will have to take each day as it comes.

I read that getting better means different things to different people.
Feeling more relaxed and calm (not so angry)
Doing more and finding a purpose
Learning to talk and/or read better
Getting involved in something you enjoy
Looking forward to family events
Helping others
Meet new friends
Try new things
Laughing more
Making plans

It also says DON'T compare yourself to others as everyone is different and it won't help. Also sometimes talking doesn't change much but life still gets much better. What more could I ask but a better life, different but better.