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 .

Digging deep

This is Coral's husband writing this introductory paragraph to a new entry to the blog. Coral had another stroke in January that worsened her Aphasia leaving her with great difficulty with memory of names and being able to spell. She still has lots of ideas, so I thought she should continue with her blog. Therefore, below is her latest entry unaltered by me. I am sure you will be able to understand what she has written and it gives a great insight into the problems she is having with her spelling.

I not writen since my stroke in Janry. Now I want to start again, with help.

I found I can't see words in my hed so not no how to spel, I could here them so I spelt like I here, feneticaly.

I was embaresed to write and would avoid writing anything. I get more confident now and it easier to rite but stil problm with speling. I reed though and hope I lern spel from reding.

A more upseting thing is remembring names, I not know the names of husbnd, daughters, grandchildren, frends. It make me cry to try remembr, it like a fog in brane and I try hard to think. My husbnd made books for me with picures of famly an frends and he put names on picures so I can find who want and see name.

My granddaughter likes nanny Coucou's specle book ! I have one with things from house in it. I can find the thing and point if I want. It make it easy for husbnd to work out and not have to gess !

When I have name person or thing then I try say name. That not easy. I try lots say over, over gain. In famly we have peple with names sound like. That confuse me. Some sounds not easy say and not come out rite.

Some days betr others. I think and talk betr so I get confident then next day I bad gain. I use tablet to rite and that has predicted text, so when use tablet peple say 'oh you are betr. You rite real good gain, glad you back normel !' 'I say not good I use predictive text, ' 'oh that sad.' Yes it sad but I bit betr use text as some spel is betr when use computer.

I stil understnd what peple say me, but when I try lissen long talk I not understnd. Short talk with picures to brake it up I cope with, but just talk that go on long time confuse me. I panic and cry.

My stroke last yeer that mean I have Aphasia upset me but names and riting stil there. This stroke made more bad, it hard acsept.

I have speech therapy with lady and work with husbnd on souns and words. He gets me talk on subgect and let me say what want. Therapist good she help lot.

I found I swere now and not something I do befor stroke Janry. In book I see peple have same problm and I reed :

Swearing

Even if you can't say very much, you may find yourself swearing a lot. This can happen even if you rarely swore before the stroke.

Because of the stroke, the brain may have less control over what is said. Swear words may be easier to get at than words you want to say.

Sometimes people who have Aphasia don't know they're swearing.

What you can do :

Remember that swearing is one of the effects of the stroke.

Help others to understand why you are swearing a lot.

Perhaps show them this section of the Stroke and Aphasia Handbook.

As time passes, you should find yourself swearing less and getting more control.

This reasures me that it not my forlt that this happen. But when say to speech therapist they not no bout this hapen to peple. But speeech therapist on the ARC group say it comon problm and she say keep calm !

I get betr talk spel, predictive text and copi/paste help lot. As do that and reed more it go in and hope , soon I do betr.

The Mask

I hear the comments peple make of me

You are hapy, you look well, bettr than ever

Life is good to you, you have come through so well.

They see the mask I were that hides the truth.

Remove the mask and see what lies beyond

The confushon in my hed, the battle with words

The names I cannot remembr,

The strugle to live day to day.

I wear my mask to protect those around me

To tell them I cope with this pain

To face a criticle world

To convins myself I am not beaten.

My batle for words never ends

My batle to remembr agonises

My batle with the fog envelups me

I batle to live a normle life.

My mask is my protecter

My mask get me thrugh the days

My mask tells peple I can live

My mask says here is a surviver.

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.

My Mr motivator

I certainly need motivation at times and the person that does that is my husband.

We have been married 42 years and for the last 12 years he has been my carer despite having health problems himself. Last year when I had two strokes in two weeks he helped me relearn to speak and when I had almost regained my speech then this stroke occurred. I am having speech therapy this time but he helps me too and he does try to think of ways of getting me involved in everyday things. But he also tells me when to stop doing things and when to rest, he is the one who insists on my pacing myself and it is sinking in to me slowly that perhaps that is a good idea!

This week at the Aphasia group I go to there was Vitalyze, Chair exercising for disabled people and non disabled too. We were a big group this week and with carers and volunteers we took up quite a bit of the hall. Sally the 'instructor' played music from the 50s by Guy Mitchell and my husband was singing along, doing the exercises and moving my leg for me he was having a ball! We moved arms, legs, hips, neck and back, which for some people was very difficult as their arms or legs won't move and they had to be manipulated either by themselves or someone else. Then Sally handed out soft balls and streamers such as those used by gymnasts. For those with hands/arms that won't move the ball was to help them grip by placing the ball in the hand and using the other hand try and get a grip on the ball. The streamers had handles and those with hands/arms that won't move the handle was pushed into the immobile hand and then with the other hand/arm move the immobile one to make the streamer move. Due to other physical problems I have with the rheumatoid and osteo arthritis, fibromyalgia and Sjogren's Syndrome I started to hurt and my hands swelled up but I managed it. My neck hurt a bit from the exercise as I have a herniated disc and my hips from the osteo-arthritis where I moved them but it was amazing. Once again my husband made me stop when I started to hurt. We plan to do some exercises like this every couple of days just as we have speech therapy homework to do where he helps me pronounce sounds.

I am aware, just as I have found others who have suffered strokes do, that I get tearful at times for no reason and angry for no reason as well. I don't get angry at my husband I get angry with myself and the situation of things I can't do or do as well as I would like. The problem is when I vent he is the one who takes the flak!

I have been told I have no reason to be angry with myself or with the situation but I want to do more and I can't. I am tired of pushing myself and getting nowhere. Sometimes I just want to run away but I can't walk let alone run. I couldn't cope alone, so  it is a silly idea really.

Sometimes I wonder why he stays with me, except he says he loves me. He doesn't need someone who needs so much care to wear him out but he does everything for me. I know at times I don't seem grateful or pleased about the things he does but deep down I do.

I can't understand why I don't understand things sometimes, why some words are elusive to me or I can't say words that are so simple when others say them. He just says, 'don't worry. It doesn't matter.'

That is why I have written these two poems for My Mr Motivator, to show him and you how much I appreciate him.

Even if I can't

Could you still love me, even if I can't say 'I love you '?

Could you still hold me, even if I can't hold you back ?

Could you still take me out, even if I can't walk ?

Could you stay with me, even if I need caring for ?

Could you still desire me, even if I have a useless body ?

Could you still caress me, even if I can't feel it ?

Could you still talk with me, even if I can't express my thoughts ?

I can't say 'I love you' but look into my eyes.

I can't hold you but I can sit beside you.

I can't walk but I still like to see outside.

I need caring for but I can't let you go.

My body is useless but I can still lie beside you.

I can't feel you caress me but I can see you touch me.

I can't express MY thoughts but I can listen to yours.

A lovesong for my beloved

Long ago we made a vow

Something I remember, even now

To love and honour each other we said

I do not regret saying it as we wed

I love you now as much as ever

And honour you here with every letter

As we became one till the end of time.

Deep in my heart my love is strong

And spills out in joy as a love song

Passion, desire, caress and urge

Wrapped up in every single word

This outpouring of thoughts of you

Are words I promise are forever true

And will be the same till the end of time.

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.

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.




 

Hospitals, celebrations, family and friends.

I have been back from respite care a little while now and my husband is recovering well from his operation, however, the hospital seems to still be part of our lives.

Since I came home I have seen the Rheumatology nurse, been to have an oximetry test fitted but that didn't work, had a Doppler scan on my neck arteries and  had a heart monitor fitted and removed. Next week I have a bone density scan and a mammogram.  As you can appreciate I am not overly fond of hospitals!

My lovely physiotherapist has been to see me and she is trying to organise some things to help me manage. She has given me exercises which will hopefully help the pain from my herniated disc in my neck and she is seeing if my manual wheelchair can be adapted for a neck rest. I have Wanda my electric wheelchair but if for any reason I cannot use her the manual one is very uncomfortable as I have no neck support.

I am still waiting to see the speech therapist as I haven't seen one since I left hospital. My speech is very much hit and miss as some days I can cope fairly well but other days are horrendous.

I feel I have a ball like for the lottery or bingo and the words are spinning round. The door opens and I try and grab a word that I want but so many times I miss. The door opens and closes so quick and the word I want just disappears into the middle of the other words tumbling around.

Reading this you probably think I have no problem but this is tiring and frustrating as I search for words that I want. I will look for the word I want and it can take such a long time looking for just one word.

My problem with the background noise doesn't seem to go away. It can ruin enjoyable times with friends and family as I end up in tears because I cannot concentrate on what people are saying to me. I very much want to start mixing with people again and already have started with two courses at our church. Each course only has about a dozen people and in the main they are the same people too. One course is weekly and the other fortnightly. They are quiet and I can follow what is said as people are talking one at a time too.

My next challenge is to restart Trefoil Guild at the end of the month. I know that there will be a speaker and I hope that if there are questions people will speak one at a time. I have explained this problem to them and on the whole I think they will help me. Also, a lady from the Stroke Association came to see me and has told me of a club/support group run by the Stroke Association for Aphasia sufferers. I hope to go along to that. Apart from when I was in hospital I have never met an Aphasic. I need to meet people like me. I explained to her that at times I feel very alone, in a little bubble.

It is hard to know what to do to help yourself although my husband and I have tried to come up with ways. We have played scrabble, not competitively just to try and help me and as I make a word I have to say it. I have been playing Solitaire on Facebook to help with my concentration and other games but I am not very successful at much. Something else I have found is to use when my speech is not good. A lady on Facebook sent me a link to a site for children as I have been searching for flashcards. I have printed off the ones I feel are good for me food, washing, dressing, kitchen, bedroom, bathroom that sort of thing. The lady from the Stroke Association has also told me about apps for my phone and tablet that will bring up words I am looking for.

Last Sunday was my birthday so after church my husband, myself, my mother in law, my daughter, my son in law and my two year old twin grandchildren went out to lunch. We enjoyed it immensely and I feel I managed very well as the area we were in was quiet. Monday after the Doppler scan of my neck we went to meet friends for lunch and on the whole I managed well there too. I went shopping and coped well except for the paying I always panic at money matters! Then to see my brother and his partner as they couldn't come on the Sunday. Tuesday and Wednesday hospital and today the Stroke Association lady and I am exhausted. I am finding I am tearful as I am tired and the brain not working. I get upset if the words won't come to me. Frustration makes the speech worse and it is harder to find the words I want.

Communication after a stroke is not well publicised and the problems are numerous. I was given a list of the problems and identified some that I have. I am not able to understand people if they talk in long sentences as I forget how the sentence started. Sometimes I know exactly what I want but cannot put a name to it. I stop talking as I can't find the word I want and I know I know it but it won't come. When talking I will talk in short sentences missing out words. I now understand this is normal.

The hospital appointments and meeting family and friends has been tiring. This has meant I could not write anything as I was waiting for the roller coaster to finish. I have been so tired I haven't been out at all today. Tiredness and Aphasia do not go together at all. That is not only what I say but the books and the professionals so I have to believe it.

My plans for PACING have not gone to plan this last week or so and I shall have to start behaving again. But my excuse is I get hospital appointments I have to keep them as they are taking care of me and that is what I want.

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.

Coward that I am

I have mentioned that I use an electric wheelchair to get around the town and on occasions that we have to walk any distance. It is more practical, most comfortable than my manual chair and gives me more independence.

It is quite large and I can position it with buttons to recline and lift the foot rests so I can almost lay flat, very comfy indeed! I love it so much I have called her Wanda. Because she wanders all over the place with me. We enjoy walks along the seafront of our town. I take her to the theatre where they have designated disabled places for wheelchairs, the lady there says every time I go that it is a big chair. Yes, I say but the same size as the last time I came!

My husband brought her into the hospital for me to sit in as I cannot sit in the low armchairs they provide there. She was fine, we got around the hospital no problem then the left foot rest broke. I had put the foot rests up and locked them in place whilst I sat by the window as the nurses changed and made my bed. Then I had to move so put the foot rests down and when I raised them again the left one was locked.

My husband looked at the chair when he visited and some small bits of plastic fell out of the locking plate. Oh dear, I was rather upset as I rely on Wanda, a lot. But we managed to get by until I got home and then we had to source a wheelchair repair centre.

We know Wanda is an Invacare Tiger so my husband called Invacare in Wales and they told him there is a stockist near us and gave him the telephone number. He called them and they told him to bring Wanda along.

This is where I suddenly became a coward.

I couldn't go with him. I wanted to go, I wanted to tell them what had happened, but I couldn't. I was overcome with sheer panic. I knew if I went I wouldn't be able to talk at all. If I got any words out they would be intelligable and then it would get so much worse. So I stayed at home and off he went with Wanda.

The man was great he said, he took photos of the chair and of the part concerned. He made notes and would contact Invacare himself to find the part needed. He didn't want to take it apart in case it was factory made in a whole piece, he wanted to check first. So Wanda is back under her cover and chained up with the mobility scooters here at the retirement appartment block.

I felt rather stupid not going but I was in such a state over it. My husband didn't force me and won't he is leaving me to make the decision. And when our daughter rang she didn't say I should have gone, she said it will take time and you will do it. I am not sure what is best really. Them being so kind about it or should they have said it would be alright there is nothing to worry about.

Time, they say, is a great healer. But how much time? Will I suddenly wake up and think, I want to go out today? Or will I have to force myself? Who knows?

Then this afternoon I fell asleep. I think I slept almost two hours. When I woke my husband was there and he started asking me questions but I couldn't answer. It wasn't that I didn't want to I just couldn't; very weird feeling. After about half an hour I could get out one or two words but they didn't seem very clear, a while later when our daughter rang it seemed easier but still a challenge to say what I wanted.

I read in my information on Aphasia that some people have days when they can talk all day then another day cannot say a word. I hope it won't be like that but if it is then I shall just have to learn to live with it.

I am often thinking about what I used to do and what I wanted to do. Much of it is involved with talking, reading and writing. But now things are different I will have to change my goals. For a long time I was a Girl Guide (Girl Scout) Leader which I loved. I enjoyed all aspects of it, especially camping, hiking, camp fires and everything associated with it. After living in France for 10 years and now back in the UK I wanted to become involved again but this time in the Trefoil Guild.

I had met up with the ladies for a visit to the Lifeboat station and for a meal in July and found them a wonderful group of people. I was looking forward to the new term in September and had found out where to get my uniform etc.

How would they react to me now? I decided to email the leader of the group and she was very encouraging. I sent her a copy of the first of these blogs and she has passed it to the others. I didn't want to have to explain what had happened and what Aphasia meant on the first evening. I prefer that people know in advance then I can answer questions as they arise. It is reassuring that I can still be a part of something that was important to me for so long.

I read today a quote that I think is very apt.

You can't start the next chapter of your life
If you keep re-reading the last one.

I think that is important to remember. I had a busy and active life. Work, home, family, drama clubs, choirs, swimming, aqua-aerobics, travel, Guiding, camping and so much more. But if I cling to all that I won't be able to go forward. I think with my disability I have done that to some extent and became stuck. Now I have another problem and I must find a way to work with it not against it. I will still travel, I will be involved in Guiding again, I could still swim and do aqua-aerobics as the swimming pool near us has swimming for the disabled. I have a wonderful church family who are understanding and accepting as well as family and friends.

I need to show those that support me that I can move on to the next chapter and be as happy there as I was before.

I was a coward today but perhaps I can be less of a coward tomorrow or the day after. Life is not easy and no one said it has to be, it is what you do with the hand dealt you.