Rose tinted glases

I not ritten in long time. We went France to see famly and visit our house which is now up for sale. I miss it much but we no it now time move on. We can still visit our dauter and her famly, if she agree! I miss the grandchildren and we have great time with them. They got so big, it was 16 months sinse we last saw them and the change was enormus.

I was asked if I miss the house and the area we lived, I say yes we hapy. We like the peace and quiet of the countryside. We drive hour and not see another car. Then I think, was I remembring rite?

Yes it lovely, fields of cows, lakes, forest, quiet roads, speedy apointments at doctor or consultant. Smell fresh bred from bakery, helpful butcher, greengrocer, pharmacy. Siting outside café watching world go by. The BBQs in the garden, growing own vegetables and herbs, siting in the garden listening to the drone of bees, watching lizards sunbathing, evenings watching the bats flying. The sound of the stags in ruting season. Those rose tinted glases were well employed.

I think of the heavy snow and painful cold. The freezing pipes, the sporadic electricity in thunderstorms. The treacherous roads to get to doctor (rite by huge lake with no fencing and ice on road), the amount work do on house, the batles with beaurocracy; in another language. The treatment of disabled peple being horendous. No droped kerbs, groveling for caddies to fit the wheelchair in supermarkets. When I got Aphasia first time in 2012 the isolation as I was the French speeker for me and my husbnd. He tried and he did shoping but couldn't explane anything. I had rite lot leters, luckily I could still rite OK.

Now we in UK and able manage beter. Still missing France a lot but it beter get treetment in own country with own language. I still not good talk lot and leeve most to him, unless with peple no very well. I got card say I had stroke and got Aphasia. I kept in in my handbag/purse in my purse/wallet. But as use wheelchair it fidly to get out so I got lanyard with ID card wallet and put in there. It hang round neck and it easy show.

I try find ways round stuff and glad I can. I not use those rose tinted glases as they just cause havoc! I want see what rite and what rong. I like try and find anser to problms and I can't do that when I not got clear picure.

ROSE TINTED GLASES

Of rose tinted glases I have no need

I just take of my own and I suceed

No trace of dirt, dust or grime

I look in the miror and I am in my prime!

I see my husbnd, so young and virile

My hert makes a leap, a bound and a jigle.

 

I don't see grafiti on the wals

The crime, abuse and braking of laws.

The anger, the poverty and homeles neer

The tears, the hopelesnes and downrite feer.

The spiraling down into an abys

The peple so many say they wouldn't mis.

Love is a state that is felt in the hert

It flies into me percing just like a dart.

It opens the way for a sweling of pride

That I should be loved, I'll not let it hide!

A hug or a kiss is all that I need

ThenI no that at anything I will suceed.

If only this feeling so warm kept inside

I could share with those shut outside.

To brake down those horors we chose to ignore

That are the curse of the hungry and poor.

A pair of glases tinted in rose

Wil not protect you from any of those.

I am hapy, I'm glad, I'm fulfiled in a way

That many won't feel till the end of their days.

I have famly, I have frends to many to count

Showing feelings I never have cause to doubt.

Those rose tinted glases I chose to discard

And trust in a future mitily stared.

 

 

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.

New year, new challenges the hardest resolutions

I appreciate I have been absent from the blog for a while, this due to nasty little winter bugs that chose to attack me.

Leading up to Christmas sinusitis, chest infection, colds, minor mouth surgery and a stomach problem have been wearing me down. Luckily I had two days reprieve, Christmas Eve and Christmas Day, when I could enjoy myself. Christmas Eve spent with friends that we have known for many years and Christmas Day with our daughter, son in law and grandchildren.

With the New Year approaching I am asked, what resolutions will you make? I always answer honestly - I don't make them. I have seen people start the New Year by planning to take up exercise, start a diet or give up smoking, invariably they never succeed and two weeks later they have failed.

My idea of change is not stopping something but starting something. My logic is that cutting or throwing out the 'bad' and bringing in the 'good' can never work when done suddenly. You have to run the two together, for instance if you never exercise and suddenly start exercising every day is doomed to failure but introducing exercise slowly as part of you daily routine will be better for your body and for success.

I have never undertaken a faddy diet, instead I have gently changed what I eat by introducing items into my regular diet or substituting one type of product for another. That way I avoid stomach upsets and other problems connected to a new way of eating. People who resolve to stop smoking usually find themselves buying cigarettes again two weeks after throwing away the last packet. Like those who resolve to stop drinking, the reason they fail is they go cold turkey. Cutting down and having a 'buddy' is more likely to succeed as the failure is the body reacting to the sudden stop of nicotine or alcohol. It is like weaning a baby away from milk and onto solids; it has to be done slowly and carefully.

When I want or need to make changes I do them when the need arises. Then I have no pressure to succeed unlike if I were to wait until the new year, nothing would ever happen and would doom to failure. Besides there is no time like the present to make changes if they are needed.

Therefore, I have no resolutions but I do have challenges which are on going from the work I have been doing since my stroke.

I have been working on my speech and using many aids to help. I have downloaded some apps onto my phone and tablet which I hope will help and inspire me. Many of these apps come via the ARC group on facebook. ARC, Aphasia Recovery Connection, is an American website to help Aphasics, not just in America but other places too. Members of the group post things they find useful and helpful to their recovery. I have a game I play which is a word game called 4 pics 1 word. You see four pictures with one word in common and that is the answer. Some are quite difficult. I have the whiteboard application which I haven't used except to show people. I you cannot make yourself understood verbally then the whiteboard means you can write the word, if you know it, or draw what you want, easily erased it is simple and effective. I have also downloaded onto my Kindle a workbook that my husband helps me with. He reads phrases or sayings and I have to fill in the relevant word. I know the words mainly but the pronunciation is the bigger problem there.

What I cannot improve on is my emotional state. If I cannot think of a word or make myself understood I burst into tears, if I lose something I know I had I cry it is like going into panic mode and nothing I do can stop it. If I want to tell my husband something he has to hold my hand to calm me. On occasions he does interrupt of finish my sentences when I am looking for a word and that upsets me. This week at the Aphasia group I go to we had a lady come to talk about homeopathy and how it helps with stroke. My husband had gone to the carers' meeting so I sat alone. I found the talk confusing and difficult to follow and he wasn't there to explain what was going on. The talk was long for me, I cope with short conversations with simple words but a talk like this isn't short or easy to follow. I panicked and started to cry and a volunteer came over to talk to me and calm me. I stopped crying but I was at a loss as to what the talk was about. I knew why I was crying then but sometimes I have no idea why I am doing it.

My husband tells me to calm down and breathe which helps. Other people say there is no problem with your speech we understand you, the problem there is they do not seem to appreciate the stress communicating puts you under. Yes, they may understand what I want to say but to get there is traumatic as searching for the RIGHT word is uppermost in my mind. At home I have lots of 'things' these are words that I cannot remember or find. My husband's job is to guess the 'thing' I mean and he is getting good at it. I can only describe it as the word accessible, there but just out of reach. I do not know the word of the thing I am writing this on for instance, there are many more and some people think it is funny that I don't know what they are. It isn't funny and when they laugh I cry.


This is my challenge to find these words and work on them and the pronunciation. This is not a resolution this is work in it's hardest form.

Chic womankind (and mankind)

Mirror, mirror on the wall, who is the fairest of them all?

We all are! Everyone has the potential to be attractive and well dressed. I don't mean expensively dressed just well dressed.

Being disabled and using a wheelchair means I prefer to wear trousers, jeans, slacks, cropped trousers, as long as they are comfortable. I wear tunics, tops, t-shirts and sometimes a blouse.One requirement is that they have sleeves these days. I do have skirts and a dress but frankly I prefer trousers when I am in the chair as they are much more practical. I have seen some very unfortunate sights of women wearing skirts or dresses sitting in a wheelchair and it was not a pretty sight either! Skirts too short and showing, what my grandmother called 'next week's washing'! Oh dear!!

Being disabled doesn't mean you have to look scruffy, badly dressed and not care about your appearance. That is what non disabled people think we are like. A little while ago two friends spoke of their encounters with people who had definite ideas on what we should wear. One met an acquaintance who said, 'Oh, you look nice!' In a surprised voice. To which my friend replied, 'don't I usually then?' Exactly. This is a person who takes pride in her appearance, visits the hairdresser regularly and dresses well; not expensively but well (there is a difference). The other friend was affronted when a 'well meaning acquaintance said my friend should wear tracksuits rather than what she was wearing, 'as it would be better for people helping you dress!' The last thing my friend would wear is a tracksuit! How dare people say such things, but they do.

It is the season of parties and celebrating and as much as anyone I will dress to impress! Sparkles, spangles, shiny stuff, silver earrings, silver bangles, sparkly rings - you name it I will do it. And all cheap too! I am not going to break the bank with diamonds and other expensive gems but will sparkle, ta dah!

As I will be encountering my fashion conscious two and a half year old granddaughter over Christmas I will HAVE to wear sparkles or get told off, yes I am nagged by a mini fashion designer. But I am happy to wear sparkles, even sparkly nail varnish.

So, why do people have the idea that disabled people can't wear anything à la mode? Perhaps they think we would get too much above ourselves if we dared look like everyone else, or dressing down kept us in our place, perhaps they think we can't 'carry it off' like a non disabled person? Perhaps all these reasons.

At the Christmas party for the Stroke Association Aphasia Group I looked around and everyone was beautifully turned out, especially the ladies. Sparkles, Christmas earrings, party hats, smart trousers mostly but a few dresses, makeup, hair coiffed, everyone was determined to look their best. And why not? Perhaps we are disabled and our speech is dubious but we like to have fun. Eating, drinking, pulling crackers, playing pass the parcel, doing a quiz and singing Carols; wonderful. A scene no different to that at any club, group or office party. I always dressed up for my office party so I am not going to stop now!

I am not offended when someone says to me, 'I do like your scarf, where did you get it?' Because they appreciate my taste. It is those who say with an air of amazement, 'that is a lovely scarf YOU are wearing.' I  just say, 'yes I chose it because I like it.'

I wore an unusual poppy leading up to  Remembrance Sunday, it was knitted by a member of the Trefoil Guild. Everyone who saw it commented on it and asked where I got it, I swear I could have sold nearly a hundred of them! It was a talking point and got me conversing as well as I could with people.I have had various conversations over the years with people about clothes and accessories and, whilst many have been favourable to my tastes, some have looked at me aghast when I say what I think of an item. Sometimes even the comment of 'YOU would wear THAT' has been heard, adding, 'you are in a wheelchair.' Umm, yes, this is a wheelchair, ten out of ten for observation!

 I have noticed that the men at the group also looked well turned out, whether that is them or their wives/partners doing I am not sure but it is encouraging to see them taking pride in themselves. Being disabled doesn't mean loosing your tastes, ability to chose for yourself or mean you should look like a scarecrow. I visit the hairdresser regularly and she will tell you I have the ability to tell her what I want done. I have my eyebrows, lip and chin waxed as those wispy hairs get on my nerves. I shave my legs - yes OK so I wear trousers, but I know that my legs are hairy! I don't wear makeup as it aggravates my eczema and I have Sjogrens Syndrome which causes very dry eyes. But I am clean and I make sure my hair is washed and tidy so I am not worried over that.

Becoming disabled does seem to be accompanied by depression and one of the signs of that is when a person stops taking a pride in their appearance, I know this from experience. It is so easy to not bother washing your hair, changing your clothes, washing clothes and pressing them. It becomes a downward spiral. So when a disabled person does take pride in themselves it shouldn't go unnoticed but done in a sensitive way. Instead of telling them what they should wear, compliment them on the colour chosen, the style, the cut, the fabric. I was told how lovely a tunic I bought looked because the collar draped beautifully. I was told the colour complimented my colouring, how nice the fabric looked. That is what I like to hear, not the amazement that I would choose such a thing!

Yes, like a lot of people I have made big errors of judgement in certain purchases but on the whole I chose what I like for me, not anyone else. After all I am not asking them to wear it!

The late, great Joyce Grenfell in one of her monologues said of clothes, 'They look quite promising in the shop, and not entirely without hope when I get them back into my wardrobe. But then, when I put them on they tend to deteriorate with a very strange rapidity and one feels sorry for them'. I daresay many of us can empathise with that feeling.

So, this season, or any season dress to impress - not anyone else but yourself. Disabled or not, “Clothes make the man. Naked people have little or no influence on society.” said Mark Twain.


And Karl Lagerfeld said, “Never use the word “cheap”. Today everybody can look chic in inexpensive clothes (the rich buy them too). There is good clothing design on every level today. You can be the chicest thing in the world in a T-shirt and jeans — it’s up to you.”

 

Chic womankind

Minis, maxis, on the knee

Cropped pants, shorts, slacks, jeans

T-shirts, vests, blouses, tunics

Jumpers, cardies, shrugs, hoodies

Shoes, boots, sandals, crocks

Bare legs, stockings, tights, socks

Raincoats, overcoats, duffles, parkas,

Fleeces, shawls, capes, cagoules

Hats, caps, berets, snoods

Earrings, necklaces, brooches, pins

Rings, bracelets, cuffs, bangles

Handbags, satchels, rucksacks, purses

Holdalls, shoppers, clutches, carriers

Wheelchairs, crutches, sticks, scooters

Looking good, looking smart

Proud of the reflection in the mirror

Brush your hair, put on the lippy

Slick on the mascara, paint your nails

Spray on the perfume, face the world.

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.