Growing out of Stres and Confusion - When?

Coral's husband here again introducing her latest article for the blog together with another poem. Coral is still having problems with spelling etc. but I trust you will be able to follow the article because I think leaving it unaltered will slowly help Coral with the written word.

It has woried me that things I thort would get betr have not done so.

After my stroke last August I found I would cry for no reeson. Sudenly I would just start to sob. I found that other peple did same so I not wory to much. Then I have stroke Janry and I still cry for no reeson. Sometimes I think it cause I tired but I found I do when I confused or stresed.

I like go shoping and help decide what eat. But that not easy. I find hard chose. I want bread, beans, tea, cheese etc but so much choise ! I want bread and there thick, medium, thin, wholemeel, flavors, small loaf, big loaf etc. But I want just a loaf bread. Beans have so many brands and cheese – it remind me De Gaulle who say 'How can anyone govern a nation that has two hundred and forty-six different kinds of cheese ?' Exactly ! To much choise. Making choise for me is very stresful, I not able to do it and need lot help and pacience. My husbnd will try help, he explane what there and the diference. When I decided I reck ! I cry cause the stres make me cry. 

I been quit lucky at shops peple help but had some peple serve not so nice. They not lissen me proply and when I got chose they sigh and tut. I have husbnd there lot time but always try have someone. I ware bracelet say 'Awareness of Aphasia' I show them and say I problem talk. Sometimes these peple look at husbnd to decide but he no it me must chose.

When need buy food I need find things I able eat. Since 4^th stroke nerely 10 yeers go I had swalow problms. It got worse last August and more in Janry. I not good with letuce, dry rice, noodles, runer beans, celery, aple peel, potato skin, big tomatos not good but OK chery tomatos. I need lot sauce on food, it need be soft and cut small. Breads with 'bits on' no good but rost veggies are excellent. We use slow cooker lot that help and corse we can make meal and let cook long it need. I lern hard way from choking so we changed what eat and how cook. When take tablets I take with yogurt, porrige, custard as it easier swalow that way. I do have before meal tablets that must take no food so make sure mouth not dry and swalow with lot water.

I cry when not understnd things. It hard if peple try explane things complicated way. I need someone tell what say. Yes, I can understnd but why some peple make big thing out something small ? I mean they turn it to a drama. I ask pleese rite down what you say so I reed latr and try understnd, my husbnd listen to and he tell me what say, tho at times he say 'they go on a bit !'

I try plan what I were and if I no I go somewhere latr and want cetane clothes were I get washed early. I hate look in cubord and get stresed what to were. I not lots clothes but some things I like more othrs. If I thort before I betr and carmer.

To cope betr I like plan food, clothes, what I do day to day, enouf medcines, flat cleen. If these not done I stres and get confused. To some peple that sily but I find that what brain injry do you.

Losing words stres and confuse too. For me losing word frustrates me as I no I no it and it like it teese me just out reech. I lost names of famly and frends, I no who they are but not names. The name iches at me and I no it there, sometimes I think name come in hed, I so hapy but it go qwik. It like things in flat I can't get they just things (we have lots things!) it wich thing I meen husbnd must gess !

He make me book with picures of famly and frends and put names them. I can look at picure and reed name. He make book with picures of things in diferent rooms, diferent foods, times yeer, clothes, it all help. I wood like spel good gain but that take long time. I rite, sometimes good sometimes not. I reed lite story as understnd betr. I need betr consentrate but that short time and I stop when feel stresed.

Things not helped by medcine which make tired. I have Morphine and Codeine and some othrs that make tired. I not able do much when tired, get stresed, confused, angry I just need sleep. I thort I be OK by now but peple say they stil need nap time lot yeers aftr stroke. It anoy me that you not told things like this, but when say to doctor bout it they say oh yes that normal ! Why not say you and not let you be stresed ?

There lot things lern by self and from others had stroke. It good help othrs, but we remembr that stroke afect peple difrent ways. It never easy but if you got good doctor, good therapists, good carer, good famly, good frends you cope betr. I got lot peple who help me but husbnd is carer. He lern that it betr to not joke bout when cry, not joke when I stresed or frustrated, he not joke when confused cause that make it worse. I not cope with joke then. He lern he must bos me bout and say what I can/cannot do, when I must rest, when I done nough. I not like it but he tell me if not behave I not do what I want ! Of course he rite, I find need rest but I not give in ! He rite that when I tired, stresed, frustrated talk get worse, I get confused and get worse and cry and then I not able do anything. He use that horid word, PACING, that I hate. I betr than was but not as good as shuld be.

I think I shuld be betr at some things I not but when say therapist she say it take long time and sometimes you never betr. I see peple my age or older and they do things I want do. But as I told they not got what rong you and not been thru what you been thru. I supose that is the all I can acept from how things are.

I got think not expect too much, slow down, breeth, acept help, keep carm, prepare, not expect too much.

Can't you hury up deer

Can't you hury up deer, I haven't got all day

Can't you hury up deer, I want to get away.

I got things to do deer, they realy cannot wate

I got things to do deer, I don't want to be late.

Can't he chose it for you, he seems a decent chap

Can't you let him help you, stop geting in a flap.

If you cannot chose deer, let him tell which one

Would suit you best deerie, and let us all be done.

Can't you speek more cleerly, I can't make out what you say

There's lot of pointing and arm waves, a strange way to behave.

Are you deff then deerie, or mentaly deranged

It must be hard for you deer with her so badly damaged.

No, I never herd of that, a new fangeled disease

It seems they are always finding a new name for lunacy.

Well, it isn't normal to act the way she does

Grunting, crying, stuttering, and many a cuss.

Sorry I'm sure deerie, if I've got you upset

But I can't understnd you, and I've tried my best.

Think how my other customers feel to here your muddled speech

If fair gives them the shivers to here you call that cardigan a peech !

I think it best my deeries she stays at home now on

We wouldn't want to distress the others in the town

They want to live quite peceful like with nothing to distress

And seeing you in this state would surely not impress.

I need to get educated, is that what you are saying ?

I need to understnd your problms, and how you are coping ?

I need to lern how to comunicate with others like you ?

You meen there are more out there, what am I to do ?

So, you are inteligent, just language has gone astray

You understnd what I mean and heer all I say.

Tis a funy busness this thing you have aquired

What's that is called ? A funy word that APHASIA .

From the small voice of Aphasia to the roar of confidence

Since my last stroke in August I have learnt a lot about myself.

I started thinking 'WHY'. Why should it happen and mostly, why should it happen to me?

Well, one look around the ward at other people, some worse some better than me, I thought , 'WHY NOT ME'. Why should I be exceptional? I'm no different to others. Some were critically ill, some couldn't speak at all, some were confused, some seemed fine in many ways, but we had all become Stroke Survivors.

I had problems that irritated me, my right side was most uncooperative, my speech was annoyingly basic at most but I was able to read (not able to remember what I read but read!) I could write basic things, numbers are still a sore point but compared to others I was doing good.

I decided then, with the help of my speech therapist to start writing again. I have written for years, articles, stories, poems, blogs and I enjoy it. In writing I could use a part of my brain that held artistic memories so hopefully it would work so I gave it a shot.

My blog began. I felt that my stroke was meant to be a way I could make a contribution in helping other people and the way I could do that was by writing down my experiences with Aphasia. Then I started writing poetry again and that seemed a way to express my feelings, experiences and the attitudes I find toward it.

Aphasia is a hidden condition, hardly anyone has heard of it let alone understand what it is. Add to that the fact they believe if you have no language you are lacking in intellect Aphasia becomes isolating. Here frustration, anger and depression come into the mix. Aphasia is something Aphasics say they hate and it is easy to see why.

I have tried to see it from another angle. I don't HATE Aphasia, I am saddened by it. I am saddened that so many people are isolated due to Global Aphasia, they have no speech, no reading ability, no writing ability or no understanding of spoken or written language. I feel very lucky that I have my written and reading abilities even if they are affected slightly. I feel saddened that people don't understand why people are affected in such a way, why people are rude, abusive and intolerant of people with speech problems; remembering that non of this is any fault of those affected.

If I didn't have Aphasia I couldn't begin to write about it, begin to educate people, begin to help people come out of isolation and find a place in society. Since joining the Stroke Association Aphasia Group I have met some wonderful people who, like me, have communication problems. There no one is abusive, rude, intolerant. They have patience, they have understanding, they help and support. Because, they KNOW what it is like to have exactly the same condition, we can truly say 'I KNOW how you feel.'

I really feel that my stroke and Aphasia has been a call for me to make people aware of the challenges faced daily by Aphasics. I can tell non Aphasics:

1. Make sure you have the Aphasic's attention before starting to communicate. 
2. During the conversation, minimise or eliminate background noise (such as television, radio, other people) as much as possible.
3. Keep communication simple but adult. Simplify your own sentences and slow your speech. You don't need to speak louder than normal but emphasise key words. Don't talk down to the person with Aphasia.
4. Encourage and use other modes of communication (writing, drawing, yes/no responses, choices, gestures, eye contact, facial expressions) in addition to speech.
5. Give them time to talk and let them have a reasonable amount of time to respond. Avoid speaking for the person with Aphasia except when necessary and ask permission before doing so.
6. Praise all attempts to speak; make speaking a pleasant experience and provide stimulating conversation. Downplay errors and avoid frequent criticisms/corrections. Avoid insisting that each word be produced perfectly.
7. Involved Aphasics in decision making and value their input.
8. Encourage them to be as independent as possible. Avoid being overprotective.
9. Whenever possible continue normal activities (such as dinner with family, company, going out). Do not shield people with Aphasia from family or friends or ignore them in a group conversation.  

•  I would also say to Aphasics, accept help. Don't be stubborn or try and be too independent, swallow your pride and you will find that help makes things easier and more fun!

 My husband cuts up my food for me even when in a restaurant, other people don't care and neither do we. It makes it easier for me to eat and I can relax and enjoy the meal and company. I even take my own cutlery, plate guard and a tabbard to wear to keep my clothes clean! Why make life more difficult, when just accepting that little bit of help makes it easier?  
 

 Pride don’t take a fall

Why make life so difficult

When it could be such fun ?

Why try to do the hardest things

When solutions are at hand ?

Why try to be independent

When help is all around ?

Why climb the steep slope of hardship

When the lift will get there there quicker ?

We all like to be in charge

To be the one who does it all

Times come when life goes wrong

Then is the time to accept some help

Don't be proud just ask around

Many will come to your call

Why struggle and fret when there is no need

When another will help to ease the stress

Pride will come before a fall

A saying well versed

But proven to be true

Don't take that fall

Just because

Your pride

Is too strong to lose.

Now I am not so worried about speaking perfectly just as long as I can communicate. I use words, gestures, facial and body expressions and they seem to get me through; along with the support and love of family and friends. Aphasia has taught me so much. I was impatient, I wanted perfection, I wanted to be independent; you notice I want all the way through?

Now I accept patience (nearly always!), I accept imperfection (doing the best I can), I accept I cannot be independent; you notice I accept? 

 

From the small voice of Aphasia to the roar of confidence

I want independence

I want perfection

I want acceptance

I cannot wait

How often I have said these words

I had my own agenda then

I wanted to be like everyone else

I wanted to be first in everything

I was full of my own self importance

I wasn't caring of my fellow man

Life changed

Abilities stolen

Isolation reigned

Future doubtful

Stroke takes no prisoners it strikes unbidden

It takes away that independence and ability

Pushed into isolation for fear of ridicule

What can be left for me now in this world ?

Life changes but still there is ability

Independence is achievable if help is accepted

Ignorance and intolerance are bigger disabilities

Once the door of isolation is opened, explore the world

The first step is small but leads to great leaps

The hand of friendship is forever open

The small voice of Aphasia turns into a roar of confidence

The hearts of survivors are full of love and tolerance

Life changes, but take that small step and make it a giant leap!

Volunteers make life good and worthwhile

I was very fortunate that I was referred to the Stroke Association Group in Petersfield, Hampshire by my Stroke Association representative Carly.

She had actually started the group just over two years ago and her mother, Jan, is a member. Not only did Carly understand about Aphasia from her work but also on a more personal level which gave me great confidence to attend.

From the moment I arrived I felt at home. I felt and still feel included in what happens. The volunteers do fantastic work in making the group a success. The activities make sure that everyone is included on their own level so no one is left on the sidelines. The volunteers are people with Aphasia themselves or they are carers of Aphasia or stroke survivors. This makes communication much easier as people talk to ME and they have the time and patience to allow me to respond. Other members who are Aphasics also include me in conversations and they will make ME answer them not my husband as it is so easy for me to pass things over to him for a response.

The volunteers work tirelessly to make each meeting a success for everyone and they will do their utmost to get people involved in some way or another. Whether it be word searches, dominoes, chair exercises or gardening everyone has a role they can play in the group. Even tea or coffee and biscuits is seen as an important part of the sessions. Actually doing things is good to work hands, feet, brains and bodies but the time to relax and interact with others is also seen as important. This is true, getting parts of the body, including the brain, moving and working is very important as therapy but the time taken to get to know others is just as vital. We learn such a lot from each other in how we perceive things, how we tackle them or deal with them. Just the task of speaking is extremely important as Aphasics need to practice sounds, words and phrases in order to reclaim their speech.

Our group are not all Aphasic but the majority are and that, for me, is the reason I go. We are all at different levels and stages and it is wonderful to see people who have progressed from where I am to where they are and I can know that there is the possibility of progress for me. One or two have very little speech and it has been that way for a long while but I have met people who are doing so well and they are proud of themselves and rightly so.

It is also important to realise that others have similar problems as I do. I find I cry for no reason at all really and one or two others say that they are like that too. I know I have changed in personality and character some others have gone through changes as well. We can share little tips on things, things we would never have come up with ourselves and you think, wow that is brilliant! I have road tested a pen that the chairperson brought in. It works wonderfully for me and it could work for others too. She didn't know where to get them as someone had given it to her, so I Googled it and found some on Amazon. I gave her the details so if someone else is interested we know where to get them.

Not only are we a group of people who have Stroke in common but work as a team. For me that means we do things to help each other. The carers have a monthly meeting too where they go off separately and discuss any issues they may have. I have no illusions that the carers are not affected by the Stroke as much as the survivor because they are. I rely on my husband a lot and other carers are in the same position. Some of the survivors need a great deal of care and help which is hard on carers. These meetings are held with the Stroke Association representative in that area Mandy and she has been very helpful to me as well.

It is true that the majority of Strokes are incurred by older people whereby the carer is usually of a similar age but that is not always the case. Younger people, from babies in the womb, children, adolescents and upward are not immune as Stroke is prejudiced it will strike anyone at any time. I know, I was in my 30s when I had my first Stroke.

What we feel is that education is the key in the understanding of Stroke and of Aphasia in particular. People know of Stroke usually because a family member has had one. But Aphasia is different, people just don't know what it is or how to handle the situation in meeting someone with it.

Outside of the group I am still nervous of meeting people and having even a short conversation with them but in the group it is so relaxed, easygoing and natural. At the group I feel normal, one of the gang as my husband puts it and it is important to be one of the group and not sit on the outside looking in.

I have such a lot to thank the volunteers for they are brilliant and have made such a difference to me. I can go along and be ME! Volunteers are sometimes treated with disdain which is most unfair. Without the hard work and great deal of time given up by them people in the group's situation would lose out and become very isolated as I did before joining them. They make life good and worthwhile once again.

Inspiration from special people

If you were to ask me what I get out of going to the Aphasia group I would tell you, inspiration.

All the people there are amazing. The stroke survivors, who have been through so much and continue to work at improving albeit a struggle. The carers who walk each step with the survivors, help them, teach them, laugh and cry with them. The volunteers, some of whom have Aphasia themselves, tirelessly work to make each session a joy, interesting, manageable. They are all wonderful and they make my afternoon as just being with them I feel the inspiration flood into me and encourage me to strive to improve. The lady from the Stroke Association who comes along and has words of encouragement for each and everyone is prepared to listen and advise. My own Stroke Association lady, I live in a different area from the one where the group is held, told me it was great there when she recommended it! She was right.

I take away the inspiration, encouragement, joy and companionship to use in my poems. Essentially they are about me and how I am coping with the stroke and its aftermath. Just as this blog does but in the poems I express myself differently and more deeply.

I enjoy writing and always have and it is a medium that I can use to express my emotions much more easily than in speech. They start with an idea and then they grow, they are like a picture with words and sometimes I wonder if only I can see that picture because they are so much a part of me.

I wanted to express my feelings about how I felt before, during and after the stroke and my vision of a future. So I wrote the first one, somewhat complicated words, but I felt very complex at the time. The others also come from deep within me but hopefully not as complex!

After the storm clouds

Afternoon sun disappears behind the gathering clouds

White, scattered turn a silver grey

Gradually attaining a charcoal hue

Before cultivating a deepening brume

Obliterating the golden orb

Shielding it from human eye

Rain nebula gather to douse the earth

Rain falls pattering softly

Increasing in density

Beating a tattoo on solid ground

Drenching, impregnating, saturating, submerging

Until, exhausted, the torrent abates

The golden orb peeks through the depleted clouds

Luminous streaks radiate the sky

Glimmering on the waterlogged terrain

Conduits glisten as luminosity shimmers in sparkling dartles

The storm clouds dissipate

Opening to the brilliant arc emblazoning the skies

Red, orange, yellow, green, blue, indigo, violet

In scintillating perceptibility

Virtually tangible in proximity

The curlicue is a covenant of ameliorated future.

Would I change who I am ?

One day I asked myself, 'Would I change how I am ? '

Would I have a perfect life, riches and fame, glory and decorations ?

No ! I accept my life,as it is, imperfect, unrestrained, problematic.

I see others with perfect lives, unhappy, unfulfilled, unloved.

Their lives bear no comparison to mine

I see love in my husband's eyes as he holds me

I see joy on the faces of my grandchildren as they see me

Caring in my children as they help me

I don't need wealth of money, I have wealth of love

I don't need fame, I am known by those who count me among them

I don't need glory, I have tasted glory in achievements

I don't need decorations, I have been decorated with being called -

Mother, grandmother, wife, daughter, sister, friend.

My imperfect life is full of medical imperfections

I am unrestrained by my conditions as I strive to live each day

It is problematic, as I turn a problem into a positive.

They are not happy as I am happy to be who I am

They are not fulfilled as I am fulfilled
 What my conditions have taught me

I am loved, by those whom I love.

Turn a negative into a positive

Turn a low into a high

Turn sadness to joy

Turn hate to love

Turn cries to laughter
Turn discord into peace 
Turn bitterness into pleasure

Turn misfortune into a blessing

Make your medical problems work FOR you not against

Turn them into advantages not disadvantages

If you saw other disabilities as well as your own

You would surely chose the devil you know.

Life behind the veil

I seem to live behind a veil, seeing but not seeing the world outside

It is close, if only I could reach out I could touch it

I shout out the words, but no one hears my impassioned plea

I shout a wordless cry of help, falling soundless on deafened ears

I see them moving, talking, laughing as though nothing else matters in the world

I cannot join their revalries, I am shut out from the crowd

I hear them and reply to them but yet await for them to know me

I am shut, trapped, resigned to live in a shadow

Neither here alone or with them outside

I have nothing for them, no voice, no thoughts

If they would only notice this veil and pull it away

If they would come and save me from this isolation

I could be somebody, prove my worth, see the world and laugh and talk once again

One roll of the dice

Life is a lottery you buy your ticket and see what comes up.

Some win a jackpot and squander the lot

Others bank it for a rainy day

Others receive a minor win

Yet most win the booby prize.

You make what you will of your lucky dip

Squandering a fortune sends them crashing down

Banking it does no good for anyone

A minor win can accumulate riches if put to good use

A booby prize can be turn into a pot of gold, by using it well.

Your life is in your hands

Use it well or you lose the prize.

One roll of the dice equals one chance to get it right.

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.

The architect, the builder and the saboteur

I try very  hard to explain to people how Aphasia affects me. They think it is just a speech impediment I have or they have met me before and say, 'what's happened to your speech? Why are you talking like that?' It is if I am putting on a silly voice.

I wish it hadn't happened but what has happened could have been so much worse, so I am grateful that a silly voice is all I have to show for my stroke. Well not all. My never ending struggle with background noise doesn't improve and I wear ear plugs now to try and block it out. I can't wear them all the time so something else has to be found but for the moment I am managing, just.

In trying to help myself come to terms with all this, and to support others like me, I started this blog. But out there are people who don't know what Aphasia is, or what it does to people and most of all the affect it has on them.

These are people who probably know someone with Aphasia or even care for someone with it, but the actual problems faced by an Aphasic is lost on them.

I have written this next bit to try and explain what background noise is like to me. I can't say it has the same affect on everyone with the problem as we are all different but I know how I feel and this is how I see it.

All communication comes from ideas gleaned from what goes on around us. We glean these from what we see, what we hear, what we feel and what we taste. The ideas are taken by our architect in the brain who draws up the plan for the builder to assemble into the different modes of communication; words, facial expression, gestures and sign language.


Think then what happens if a saboteur in the form of excessive back ground noise disrupts the work of the architect. As he draws up his plans he is bombarded with overwhelming noise that interrupts the other information that he needs to draw up the plans, so these plans become increasingly flawed.


As the saboteur keeps up his work the builder receives more and more defective plans to work with and increasingly the work starts to fall apart. The architect downs tools and refuses to work under the stressful conditions leaving the builder nothing to work with so, he too, goes on strike.

Only the saboteur is the winner in the power struggle.

 

Please insert she for he as appropriate!

Now if you think I have gone mad, I am sorry but essentially this is what is happening. We learn from a young age that what we see, what we hear, what we touch and what we taste will be the information that we work from and with for ever. We learn that sugar is sweet, so every time we see or taste sugar we know it is sugar. The taste is familiar and the look is familiar so it must be - sugar. Lemons are bitter, they are yellow and they look like a small  rugby ball. So when we taste or see one we know that it is a lemon.

Words are like that. We see them written down, hear them spoken, taste them as we pronounce them and feel them as we visualise them. If I close my eyes and hear the word rain to me it get a picture of wetness on my face and the smells of hot pavements and wet grass. 

If there is a lot of background noise I can't hear the word and I have nothing to imagine. So my architect is slaving away in very unsatisfactory conditions against the saboteur and sending defective words down to the builder who cannot make anything fit together. When the architect goes on strike the poor builder has less and less to construct with until, he too, can go no further and stops. 

That is when I can't talk any more because I have no words to say as they have been sabotaged and as I say I am very fluent in gibberish!

I went to the Trefoil Guild meeting this evening and met some wonderful ladies. They were wonderful in accepting me and helping me. Once only did I get upset because I couldn't make myself understood, but we got there in the end.

Tonight we had a speaker from the charity Canine Partners. These are assistance dogs for the disabled. We met a gorgeous black labrador called Whiskey who helps his owner Karenza at home.

She too uses an  electric wheelchair and has encountered people who do the 'does she take sugar" syndrome. I agreed with her as sometimes I feel I get the virtual pat on the head of there there. Her talk was interesting and an eye opener for us in the amount of time it takes to train the puppies and the length of time a disabled person has to wait for one. The guild are planning a visit to the training centre at Midhurst in Sussex and there is, she says, no opportunity to sneak a puppy home! Damn!

Karenza's situation is different to mine as my Aphasia is different from other Aphasics. But deep down we are basically the same. We all struggle daily, we all have highs and lows, we all want to be accepted in society. She said she has days when very tired that her speech is not as good as other days. My starts from a different starting point and goes down. But we both have architects and builders who are sabotaged by the saboteur. And when we are at our lowest, there is only one winner - the saboteur. 

Accepting help, it isn't giving in

I have always been independent and to be in control. I have found it hard asking for help but I know I have to and it isn't easy.

Since my stroke I have had to accept I have need of special aids, so when the occupational therapist suggested things like a profile bed which,with the use of an electric controller, helps me sit up, lie down etc I agreed. I have a raised seat on the toilet, a bath board to help me get into the bath to use it as a shower and a perching stool in the kitchen so I can help prepare meals.

These are practical aids but due to the Aphasia I also need emotional aid. I for that I had to turn to the internet.

I found a group on Facebook call Aphasia Recovery Connection. They are based in America and the people on there, not all American, are amazing. They have been such a help to me, befriending me, giving advice, making me feel better when I am low and laughing with me when I am happy. Friends, one and all. It is a relief to know there are other people like you out there as Aphasia is very isolating.

Every now and again a question is put up and the members of the group say what they feel. I wrote about how people should treat Aphasics. I said: Talk to ME I hear, understand and can talk if you give me TIME. Don't tell me what I mean, don't finish my sentences, have patience. If you hurry me, harass me, get impatient with me I panic, get frustrated and then cannot say anything.

People agreed we need others to treat us just as everyone else. Yes we might take a little longer to answer but it won't help if other people try to rush us, harass us, try and second guess us or finish our sentences for us. For me that means I go into panic mode, get frustrated then I cannot say a word. As I said the other day I am fluent in gibberish, but nothing else!

They also have a games forum where fairly simple questions can be answered generally to do with the small words people 'lose' when trying to talk. The, and, on, in, under etc. I am so happy to have found the group and have become friends with some of them already.

I know my concentration is bad so I do games on Facebook, not many but ones that mean I have to match cards, put three of the same thing in a row, fairly simple you might think but when you forget something as soon as you take your eyes off of it well then you have to work harder! Some games I cannot get into even though people invite me to play, but if I am going to panic when I can't cope with it what is the point. It is a thank you but no thank you scenario.

I had a visit from a lady representing the Stroke Association last week. She was very helpful and when I explained I have this connection with people on the Internet she was pleased I was getting involved. I told her I also go to Church and church meetings and except for the services the meetings are small groups. I am going back to Trefoil Guild; the older ladies of the Guiding Association, and I have told them about Aphasia already. But what I don't have is access to people with my problem. So she told me about an Aphasia group her mother belongs to. It isn't too far away and it is run by the Stroke Association but for Aphasics. There is a Stroke club near us but it isn't specifically for Aphasia. Meeting others with a speech problem will help the feeling of isolation.

I will admit that most people I have encountered out and about have been brilliant they accept that I need time and are willing to help me however they can. I relax better in that sort of environment but will admit that even my husband doesn't always understand me!

With all this help available I hoped that there would be something for the background noise problem I have. But no, there is nothing. All the Speech Therapist could say was try and block it out: but I can't. I mean, I wouldn't be bothered by it if I could would I? Even sitting talking to her the noise from outside made hearing her and understanding very difficult. She says I use a lot of facial and hand gestures which is good communication, which I am happy about. I have flashcards too for when I have a very bad day. 

So the speech therapist thinks I have a problem with heightened sense of hearing. This isn't good news as the sound of talking, traffic, cutlery, crockery and music is much more heightened to me than others. My husband and other people say they can block it out unless it is very noisy, what is ordinary to them is extremely loud to me. I have searched the Internet for articles about the problem but apart from a passing reference, there is nothing. My neuro-physiotherapist was going to talk to the stroke consultant to find out if I can be referred to an audiologist and see if they can help.

In the meantime I invested in some foam ear plugs. They were useless, they don't block the noise and they just come out even if it does say on the packet they are for travelling, snoring and sleeping. So today my husband went out and came back with some silicone ear plugs. I put those in and they work. He does insist of speaking to me although I say I can't hear him! Only problem is I don't think I can wear them all the time as there is no way for air circulation. I have seen some on Amazon I think I will invest in, they look a bit like mushrooms and have space to have air get around. I will see, it depends on the use these will get. It does mean people will have to look AT me to speak to me and not mumble. It will be interesting going to the Aphasia club to see if there are any others with this problem and find out their way of dealing with it.

Apart from the Stroke Association UK Connect - The Communication Disability Netword and Speakability also give help to people with Aphasia in the UK. 

Once I accepted I needed help, not with everyday processes of getting up, washing, dressing, but with speech and hearing I found so much out there for me and so many people willing to give time and effort in befriending me and sharing experiences. 

Coming home from hospital isn't the end of the journey it is the start. Being in touch with other people who have the same problems and concerns isn't immersing yourself in despair it is sharing the good and the bad with those who really understand. That is so much better than sitting at home isolated and miserable.




 

Speaking in tongues

I have been AWOL for a few weeks due to circumstances beyond my control. Namely that my husband had to go into hospital for an operation and I had to go into respite care. Now my husband is home and he collected me, so we are starting another page and hope we can settle down properly in our new home.

Unfortunately the place I went to doesn't have WiFi, free or otherwise, for 'clients'. So I had to make do with books, magazines and using my iphone which is rather expensive. But I am back and can catch up with my blogging and the news which I have missed out on.

The care home was OK and I did have a single room thankfully. I could shut myself away and read to my heart's content. That suits me fine even if I have to read the books a few times so as I can remember what they were about! The problem I had there was NOISE.

I have mentioned before that my Aphasia causes me to be troubled but background noise. In the care home I made my way to the dining room three times a day and unfortunately I had to leave at the earliest possible moment. I felt I was running away and being rude to people.

The talking all around me, the clatter of crockery and cutlery and sometimes there was music playing too I would be in tears. I told the staff and they were very kind but of course could do nothing about it. I did eat in my room a few times but because I wasn't mixing with people I isolated myself. I couldn't go to any of the television lounges because of the noise as people were talking while others tried to watch the television. I preferred to have my radio on and listen to classical music; much more soothing.

I took myself to the local church on a Sunday morning and the actual service was fine. Afterwards they were serving tea or coffee so I went through to have a drink. At first all was well but then people started to come in and the talking got louder and louder. Added to that the clinking of cups and saucers, I drank my coffee and said I had to get back for lunch, which was true.

I am hoping I will manage this Sunday as our church is holding it's Harvest Festival lunch. We have decided to go and I am wanting to see people and mix with them. I hope I can cope for an hour or two, if not I will have to miss out and so will my husband who will have to take me home.

I have explained to people the problem and hope upon hope that they will follow the guidelines in communicating with me. All you can do is tell people and ask them to follow the advice but you cannot force them. Although I know my husband will remind them if need be.

The worst experiences I have had with noise has been at the hospital. I had a little problem with my eye and had to go to an out of hours eye clinic. It was quite quiet when we arrived and then people started to arrive. A lady went into the doctor's room with her son and daughter (they were all adults and not young). When they came out they saw some people they knew and chose to stand directly behind my wheelchair. They talked over each other getting louder and louder until I was in tears. My husband stood with his hands over my ears and a nurse was in the waiting room so she came over to see if I was alright. My husband explained the problem and she took my letter and got me in to see the doctor immediately. The doctor was very helpful and spoke to me giving me time to answer. The only thing he checked was that I could understand what he said. I had another bout of what I term 'noise panic' in the cardiology waiting room but it wasn't as bad as the eye clinic.

I have tried to find a solution to the problem and had some advice. Certain headphones have a switch that will cut out background noise but I am not sure how they would work with me trying to listen to someone having a conversation with me. I have also seen directional microphones that fit onto eye glasses, they have a earpiece at the back of the glasses' arm that goes into the ear. Again  I am not sure how efficient they would be. I would be willing to try them but first want to know more but they is little on the Internet about either the headphones or the glasses. I want to ask my speech therapist but she is away for a couple of weeks and there is no one else to ask. Aphasia groups and websites don't have anything on this problem yet it isn't rare.

I have tried to explain what it is like having the background noise problem. People don't always talk quietly even if there are just two people having a conversation. In a waiting room or café there may be 20 or so couples, all talking and trying to hear over the other people. The hubbub gets louder and louder. This is how it is for me but someone like my husband says the noise isn't very loud it is bearable but to me it is like being at a cup final match every day with people making a huge noise. I am told to block it out but that is the problem I can't.

The stress and strain of the background noise is everywhere in shops, the post office, in the street everywhere I go. Of course it takes it's toll and my speech suffers as I get tired and frustrated. Aphasia can and does vary from day to day. I, like others with Aphasia, have good days and bad days. In a book I was given on Aphasia there is a drawing a man is saying, 'some days I can talk the hind leg off a donkey. Some days I can't talk at all.' Things can make it worse, as I have found, tiredness, being frightened, being anxious and being upset.

It says that if you know what causes these fluctuations avoid the things that make talking more difficult for you. Moving away from noisy situations or asking for the noise to be cut down. I understand that but how can you tell a waiting room of people or a shop full of people to stop talking?

I felt I had achieved a lot today as I went shopping with my husband. I did have to leave him to pay and wait outside the shops on occasions but how could you tell a mother whose child is in total meltdown to keep it quiet? All I could do was leave the shop. Some advice is not always helpful or sensible we have to manage the best way we can, we know what would help and make it totally bearable but we have to live in the real world and the real world has to work for everyone without exceptions.

Include, don't exclude.

I spoke about the visit I had from the Neurological physiotherapist who sided with my husband to use the dreaded PACE word.

Well since Thursday which was a bit busy, to say the least, I have rested and been very good. I have only been to the bathroom and back otherwise I have lazed about like lady muck!!!

It isn't all down to the stroke though as I woke the other night in pain and found the herniated disc in my upper back was hurting and the pain had travelled down my left arm to my hand.

This is not good news for two reasons. I is extremely uncomfortable and painful to move and as I cannot lie down in the proper position to wear my CPAP mask I cannot use the CPAP machine at night. The machine is what keeps me breathing so this is very scary.

I hardly get any sleep so I doze on and off all day. I take strong painkillers to try and hit the pain but they make me dozy and then as they wear off the pain comes back and wakes me up. A truly vicious circle.

Still I am able to get some things done whilst waiting for painkillers to kick in. I decide on meals and tell my husband what I want doing for food and he is great at cooking so he follows my instructions with no problem. I didn't sleep at all well last night and grabbed a few hours here and there only to wake up at 11am! Luckily I had told him that I wanted a roast chicken dinner so he had all the ingredients. He did it in the slow cooker and after browning the chicken and potatoes in the oven it was delicious. Although I am not actually cooking I am still able to have input into what we eat.

I am reading too as I am finding using the computer painful so only do so for short periods of time. Books are heavy to hold so I am using my Kindle a lot. I am not sure if I am making progress on the reading side. I was finding that every page was like a new book and I couldn't remember what had occurred before in a book. Once or twice I have had a tug at a memory but it flits away very quickly.

I haven't been back to church yet although our Minister visited me in hospital and told me to PACE myself, I believe everyone is in on this act! Today a church member came to visit me at home and she used that P word as well! Really. She brought us up to date with church news and gossip. There are some things I am so looking forward to being involved with but I can only do them if I behave! Well I have been good and I realise it is for my own good. As I can't do much else at the moment I don't have any choice but still I can see the sense in it.

My one big worry was that be good and PACING meant I would have no involvement in running our home. But that isn't true I am involved because my husband wants me to be. I still have decisions to make and I tell him how I want things done. We have been a team and that is still how things are. I am not feeling resentful as he listens to me and discusses what we do.

When you have Aphasia there is the problem that you could get left out. I am very fortunate that my husband makes sure I am NOT left out he ensures I am included. I understand what he says and I know what I want it is just difficult to get that across at times.

I truly feel I am treated like anyone else and that is all anyone wants. Our Minister talks to me like anyone else and so did our visitor today. She saw the book I have about Aphasia and said the Minister had said to the congregation that this is what I have but like some others she didn't know what it is. I showed her the page that explains it and she was interested and asked about the therapy that will help me. That is the sort of people I want and need around me.

She also prayed with us which was lovely as I am missing the visits from the hospital chaplains who came often to chat and twice a week to give communion.

What a difference it makes to your faith in others when you are treated as anyone else, a normal individual who can think and make decisions. I have three things I am wanting to do now and I have contacted people to make them aware of the situation and told them I want to be included and treated as everyone else. They have ensured me they will and I trust them to do so.

Include don't exclude a motto that we should use for anyone and everyone. They may be a little different but they are all people with feelings a lot to offer.