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.
Sunday 8 September 2013
Thursday 5 September 2013
A lecture and a nasty word then fun and games in the park.
If there is one word I just cannot handle it is PACING. Yes that old chestnut that physiotherapist like to use.
I am unfortunately someone who wants to do it all. Once I have mastered getting to the bathroom with my husband and the wall for assistance I want to walk everywhere! Just one slight problem. It hurts, I can't get there without stopping a few times and I am knackered afterward.
So yesterday the Neurological physiotherapist came to visit me and assess how things were going. She was pleased when I did the little bits like bedroom to bathroom (just next door to each other) and sofa to kitchen which is just five or six steps. Then the lecture. I must do just little bits or I will get too tired and not make progress.She then ganged up on me with my husband to say I must PACE. It was no good me covering my ears they insist. So what must I do instead?
She is contacting the speech therapist to visit me and the occupational therapist. She herself is away and will contact me when she is back to see how it is going. In the meantime I can walk to the bathroom and back to the bedroom. I can walk to the next bedroom just a few steps away then use the wheelchair to get to the lounge. I can transfer from chair to sofa. I can get to the kitchen and use the perching stool if I want to prepare meals and if I am good I can stand for a very little while. I can stay up for short periods unless it is important to be up for longer, otherwise it is a wheelchair ride back to bed.
Bossy? Yes but sensible really as I am stilling feeling very tired.
My staying up was approved for today so I could spend time with our daughter and grandchildren. I told the physiotherapist I wanted to go out to lunch and to the park so she allowed me on the condition I rest for the next TWO days!
So we did go and meet up with our daughter and the twins who are two and a half. I didn't have to talk to anyone out and about except for my family and no one, not even the children, took any notice of my speech. It is amazing how children accept us as we are.
After some fun by the sea where the children went on a bouncy castle and a merry go round we walked to a pub/restaurant for lunch. The children found some amusements there too and ate a good lunch. We went to the town afterward and I needed to go into the bookshop. I was looking for a book I want for my birthday so my daughter and husband know which one it is. We couldn't see it on the shelf and I was saying the name of the author when one of the staff came to talk to us. Panic stations, I just wanted to go. My daughter said I could come in a look another time when the children were not there getting fussy standing around so I could escape.I felt silly afterward for getting panic stricken.
A walk to the park where the children fell asleep was lovely. Hardly anyone around so we could meander along the paths. Then they woke up and we went to the playground for a while. Where do they get their energy?
Back home we all had a drink and a biscuit before our daughter and grandchildren had to get their train home. Before they left I was so tired my husband helped me back to bed. No sooner had he left to walk to the station with them and I was asleep!
So tomorrow I must rest and to be honest I need to. I am still knackered and I have slept for an hour or more and only had sandwiches for supper. But the physiotherapist was right I need to build up my strength slowly and PACE. I won't be spending every day like today so I must allow for these things happening.
I thoroughly enjoyed seeing the little people enjoy themselves. They throw themselves into everything with gusto. I must NOT throw myself into things I must slow down. And dare I say it PACE myself. Seems I must learn to like that word if I am to get any better.
I am unfortunately someone who wants to do it all. Once I have mastered getting to the bathroom with my husband and the wall for assistance I want to walk everywhere! Just one slight problem. It hurts, I can't get there without stopping a few times and I am knackered afterward.
So yesterday the Neurological physiotherapist came to visit me and assess how things were going. She was pleased when I did the little bits like bedroom to bathroom (just next door to each other) and sofa to kitchen which is just five or six steps. Then the lecture. I must do just little bits or I will get too tired and not make progress.She then ganged up on me with my husband to say I must PACE. It was no good me covering my ears they insist. So what must I do instead?
She is contacting the speech therapist to visit me and the occupational therapist. She herself is away and will contact me when she is back to see how it is going. In the meantime I can walk to the bathroom and back to the bedroom. I can walk to the next bedroom just a few steps away then use the wheelchair to get to the lounge. I can transfer from chair to sofa. I can get to the kitchen and use the perching stool if I want to prepare meals and if I am good I can stand for a very little while. I can stay up for short periods unless it is important to be up for longer, otherwise it is a wheelchair ride back to bed.
Bossy? Yes but sensible really as I am stilling feeling very tired.
My staying up was approved for today so I could spend time with our daughter and grandchildren. I told the physiotherapist I wanted to go out to lunch and to the park so she allowed me on the condition I rest for the next TWO days!
So we did go and meet up with our daughter and the twins who are two and a half. I didn't have to talk to anyone out and about except for my family and no one, not even the children, took any notice of my speech. It is amazing how children accept us as we are.
After some fun by the sea where the children went on a bouncy castle and a merry go round we walked to a pub/restaurant for lunch. The children found some amusements there too and ate a good lunch. We went to the town afterward and I needed to go into the bookshop. I was looking for a book I want for my birthday so my daughter and husband know which one it is. We couldn't see it on the shelf and I was saying the name of the author when one of the staff came to talk to us. Panic stations, I just wanted to go. My daughter said I could come in a look another time when the children were not there getting fussy standing around so I could escape.I felt silly afterward for getting panic stricken.
A walk to the park where the children fell asleep was lovely. Hardly anyone around so we could meander along the paths. Then they woke up and we went to the playground for a while. Where do they get their energy?
Back home we all had a drink and a biscuit before our daughter and grandchildren had to get their train home. Before they left I was so tired my husband helped me back to bed. No sooner had he left to walk to the station with them and I was asleep!
So tomorrow I must rest and to be honest I need to. I am still knackered and I have slept for an hour or more and only had sandwiches for supper. But the physiotherapist was right I need to build up my strength slowly and PACE. I won't be spending every day like today so I must allow for these things happening.
I thoroughly enjoyed seeing the little people enjoy themselves. They throw themselves into everything with gusto. I must NOT throw myself into things I must slow down. And dare I say it PACE myself. Seems I must learn to like that word if I am to get any better.
Tuesday 3 September 2013
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.
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.
Monday 2 September 2013
The three Rs
You will possibly only understand Aphasia if you either have it, know someone with it or are a speech and language therapist. Even then, as I have found, having it doesn't mean I can understand exactly what others are struggling with or they me.
I have mentioned before I love to read. I have a Kindle full of books that I haven't yet read and sadly will not for some time.I also have shelves of books that I read over and over again but they are ignored for the time being. I have had to change my reading matter for things that are 'light and fluffy' as I call it. That is family sagas that are fun and easy to read. Well not really easy as I have mentioned I tend to find each page is like a new book and I cannot remember what has happened previously in the story. I spoke to the speech therapist about it and she has suggested that I read a page or two and then write down a little about the story so I can refer back to it. As time progresses I might be able to read more pages until I get to a whole chapter before writing anything down. But not to get too ahead of myself I am on the one or two pages at present.
But today I had a slight breakthrough! I was reading a page and something seemed to niggle at me. I am sure I have read about this character or situation before in another book of the sagas. I have tried to find it but cannot be sure where it was so I have this niggle going on. Hopefully I will be able to match it up but I am sure I am not imagining it.
I also like doing crosswords but they are much too hard at the moment. I am not referring to the Times crossword just one in my womens' magazine. I just can't think of words that will fit and I do them to keep my brain active! I shouldn't get upset but I do. Sometimes I just cannot understand the question even let alone the answer. So I have stopped doing them it is much too upsetting and I will try again in a few months.
I also find that numbers are so difficult at the moment. I recognise numbers on their own but as a sum I can't do it, even if it is easy sums. The same goes for money. I look at the coins and I look at the numbers on them but adding them together is panic stations. I have had to trust people to take the correct money or give the correct change and I hope they are honest. I know that paper money is more than coins so at least I have that advantage but it isn't any help when I don't know what change they will give.
I feel I should be starting school with the nursery class to learn to read, write and add up. That sounds silly but I do feel like a small child again starting out. I have good friends who will help me as well as family but whilst everyone is doing things almost automatically I am struggling on the edge.
When I think of the double As I got in English and the B in French after my second stroke I cannot believe I did it but then I didn't have Aphasia. I would love to study again but how can I? I love English literature and history. Now I have the time to study I haven't the ability. I do take photographs and intended to do a photography course but the communication would be difficult as it is in a group where everyone is talking. I can't cope in those situations. An online course would suit me from that point of view but then there is the reading and writing to be done. I just seem to go round in circles.
Some information on Aphasia I was given talks of the problems people have in returning to work or getting a job if they have Aphasia. I wouldn't know how to start looking for a job if I was of working age. I was in a job where I was communicating by telephone, face to face and in writing. I did a lot of number work, adding pages of figures together; a job I wouldn't be able to do now.
One thing that Aphasia does is make you isolated and I feel that very much. I can't use the telephone unless my husband is here to answer and put it on speaker so I can hear. I can't even buy on line as he has to be here to do the money side. I want to go out but I am scared, of what people will say, how they will react and how they will treat me.
I can't stay home for ever I know that and I must take that first small step to mixing in public.
I use a wheelchair so already people know I have mobility problems but when I open my mouth to speak my Aphasia will stand out. I have been saying to myself I have a problem but if people want to be rude and ignore me then they have a bigger problem than me.
I told the staff in hospital I want to get a T-shirt made that says. I take medication for my conditions but there is nothing you can take for ignorance!
I will continue to read, continue to write and continue to get to grips with numbers. All will take time and it will take as longs as it does to get even a little way. Tips from the professionals help and eventually we find a way of coping ourselves. Sharing with others helps too.
Today I hoped I had made a little breakthrough, perhaps I did perhaps I didn't but something seemed to strike a chord with me. Little breakthroughs lead to bigger ones, I will keep looking and hoping.
I have mentioned before I love to read. I have a Kindle full of books that I haven't yet read and sadly will not for some time.I also have shelves of books that I read over and over again but they are ignored for the time being. I have had to change my reading matter for things that are 'light and fluffy' as I call it. That is family sagas that are fun and easy to read. Well not really easy as I have mentioned I tend to find each page is like a new book and I cannot remember what has happened previously in the story. I spoke to the speech therapist about it and she has suggested that I read a page or two and then write down a little about the story so I can refer back to it. As time progresses I might be able to read more pages until I get to a whole chapter before writing anything down. But not to get too ahead of myself I am on the one or two pages at present.
But today I had a slight breakthrough! I was reading a page and something seemed to niggle at me. I am sure I have read about this character or situation before in another book of the sagas. I have tried to find it but cannot be sure where it was so I have this niggle going on. Hopefully I will be able to match it up but I am sure I am not imagining it.
I also like doing crosswords but they are much too hard at the moment. I am not referring to the Times crossword just one in my womens' magazine. I just can't think of words that will fit and I do them to keep my brain active! I shouldn't get upset but I do. Sometimes I just cannot understand the question even let alone the answer. So I have stopped doing them it is much too upsetting and I will try again in a few months.
I also find that numbers are so difficult at the moment. I recognise numbers on their own but as a sum I can't do it, even if it is easy sums. The same goes for money. I look at the coins and I look at the numbers on them but adding them together is panic stations. I have had to trust people to take the correct money or give the correct change and I hope they are honest. I know that paper money is more than coins so at least I have that advantage but it isn't any help when I don't know what change they will give.
I feel I should be starting school with the nursery class to learn to read, write and add up. That sounds silly but I do feel like a small child again starting out. I have good friends who will help me as well as family but whilst everyone is doing things almost automatically I am struggling on the edge.
When I think of the double As I got in English and the B in French after my second stroke I cannot believe I did it but then I didn't have Aphasia. I would love to study again but how can I? I love English literature and history. Now I have the time to study I haven't the ability. I do take photographs and intended to do a photography course but the communication would be difficult as it is in a group where everyone is talking. I can't cope in those situations. An online course would suit me from that point of view but then there is the reading and writing to be done. I just seem to go round in circles.
Some information on Aphasia I was given talks of the problems people have in returning to work or getting a job if they have Aphasia. I wouldn't know how to start looking for a job if I was of working age. I was in a job where I was communicating by telephone, face to face and in writing. I did a lot of number work, adding pages of figures together; a job I wouldn't be able to do now.
One thing that Aphasia does is make you isolated and I feel that very much. I can't use the telephone unless my husband is here to answer and put it on speaker so I can hear. I can't even buy on line as he has to be here to do the money side. I want to go out but I am scared, of what people will say, how they will react and how they will treat me.
I can't stay home for ever I know that and I must take that first small step to mixing in public.
I use a wheelchair so already people know I have mobility problems but when I open my mouth to speak my Aphasia will stand out. I have been saying to myself I have a problem but if people want to be rude and ignore me then they have a bigger problem than me.
I told the staff in hospital I want to get a T-shirt made that says. I take medication for my conditions but there is nothing you can take for ignorance!
I will continue to read, continue to write and continue to get to grips with numbers. All will take time and it will take as longs as it does to get even a little way. Tips from the professionals help and eventually we find a way of coping ourselves. Sharing with others helps too.
Today I hoped I had made a little breakthrough, perhaps I did perhaps I didn't but something seemed to strike a chord with me. Little breakthroughs lead to bigger ones, I will keep looking and hoping.
Sunday 1 September 2013
Aphasia and me
I wonder how many people know what Aphasia is. Before it happened to me I hadn't heard of the word but I can assure you when it happens it has a devastating affect on your life.
Essentially it affects language. The understanding, the speaking, the reading and the writing. It can also affect the use of numbers. Whilst not understood by many it affects around 250,000 people in the UK.
Not every aspect of language affects every sufferer nor in the same degree but it isn't easy to live with or accept.One of the causes of Aphasia is a stroke but it can also be caused by brain injury, infections and inflammation and brain tumors. However it is caused and the degree and aspect of it are all dealt with by a speech and language specialist. The ways they help are varied but it is invaluable to understand what has happened and how you can live with and manage the condition.
I have had two experiences of Aphasia, essentially the same, the way they were dealt with differed greatly. The first time was following two mini strokes close together a year ago and I received no help at the time. My husband helped me by making me repeat words over and over again. He started by bringing me a meal and saying 'meat, vegetables, potatoes', and when I could say that (albeit not clearly!) he started to say the type of meat or fish, the type of vegetables, the type of potatoes (mash, boiled, roast, chips etc). Then we went onto other things like fruit, clothes, flowers and much more. It was a long, tedious journey and although not conventional we had no other idea in how to do it. Not being speech and language therapists we did our best and by this summer I had almost regain normal speech. Then out of the blue I had another stroke, almost a year to the day of the first one last year.
I was sitting using my Kindle when my right hand wouldn't move. My husband happened to come into the room and I couldn't talk to him. He called an ambulance and I was taken to hospital where I was Thrombolysed. This is a clot busting drug treatment given within four and a half hours of a stroke.
I wasn't able to use my right side and as I am very right handed learning to do anything with my left hand was very difficult. I had physiotherapy and occupational therapy plus the speech therapy, quite grueling but effective.
Physiotherapy wasn't as effective as the rest as I have used a wheelchair for about 12 years and hadn't walked far for a long while which was difficult to explain to the physios under the circumstances. However, the occupational therapists were more accommodating.
I regained the strength in my right side slowly and each little improvement was an excuse to celebrate! My speech became a little better but I still found it difficult to find words and when I got frustrated I would find my speech back to square one.
The Aphasia had affected my speech and to some extent my reading. I love to read and to write so losing even some of that was a blow. I found every page was like a new book as I couldn't remember what had happened before. Sadly I knew something had gone before but had no idea what it was. When I wrote I searched for a long time for certain words. My brain was going so fast it was like trying to snatch at clouds, not able to grasp them. In my head was everything I wanted by across the middle of my face was a barrier that opened slightly then crashed shut. It is still there but opening a little more each day. When I am tired or frustrated it slams shut again and I am rather despondent. Whilst some words are elusive others are quite easy to find and those are ones that I feel wouldn't come to mind in a million years! My speech therapist said this is because I read and write a lot so my brain works in a way that finds these words. Strangely in speaking little joining words such as and, the etc won't come out all the time. I stutter over words that are similar and have to try and slow down my brain which goes at such a rate I am exhausted.
Speech Aphasia has several degrees and mine is not too bad. Some people I met in hospital have little or no speech at all. Others can't read or write, whilst some have no understanding of what people are saying to them. At first I understood at a basic level but it improved, for others, sadly, this won't happen. One lady could say only yes and no, but when the speech therapist encouraged her to sing she could make many sounds and she became brighter and happier. I can understand but have difficulty when in a noisy environment or in a group. On a one to one basis I manage quite well but if I get two people talking to me at the same time I just cannot cope. I need people to talk slowly and not use long or complicated words and I am better when not tired or anxious.
My speech therapist made me a card which pointed out I have had a stroke and have Aphasia then lists what people should do to help me communicate with them.
Talk to me, I can understand you
Don't talk to me like a child
Give me time to respond to you. I need a few seconds to gather my thoughts.
Don't interrupt me or finish my sentences.
Another thing I have found is that my emotions are very much on the surface and at times I am irrational. I don't know why but it is upsetting for me as well as another person.
Aphasia causes many feelings. Isolation, frustration, anxiety, anger, lack of confidence, depression, uncertainty, embarrassment, a different way of life and guilt. It can also mean relationship issues, unemployment and boredom. To live with Aphasia means a whole new way of life as communication is very much the basis of life. Work, leisure, relationships all rely on communication and it means learning to live again in a different way. Getting the right sort of help will make this easier but it will take time. I am not a very patient person which isn't helpful! My husband says pacing isn't in my vocabulary, which I agree with. But this needs my patience and so I will have to give in and be good.
I will admit I find this scary. I have had 12 years to get used to being out and about in a wheelchair and have endured the 'does she take sugar' episodes. Now I have a wheelchair and Aphasia and how will people treat me then? I can't lock myself away so I shall have to face it, and I know my husband will help. I want to get back to my leisure activities and meet people who I know. Those people I am sure will not treat me any differently than before but it is meeting people for the first time that scares me.
I am at home and I WILL get better. Not everyone recovers at the same rate and some will never recover completely. I may not be able to communicate in the same way ever again but I have to accept Aphasia is there and find a way of coping and living with it. Some days I can talk, not clearly but talk, other days nothing happens so I will have to take each day as it comes.
I read that getting better means different things to different people.
Feeling more relaxed and calm (not so angry)
Doing more and finding a purpose
Learning to talk and/or read better
Getting involved in something you enjoy
Looking forward to family events
Helping others
Meet new friends
Try new things
Laughing more
Making plans
It also says DON'T compare yourself to others as everyone is different and it won't help. Also sometimes talking doesn't change much but life still gets much better. What more could I ask but a better life, different but better.
Essentially it affects language. The understanding, the speaking, the reading and the writing. It can also affect the use of numbers. Whilst not understood by many it affects around 250,000 people in the UK.
Not every aspect of language affects every sufferer nor in the same degree but it isn't easy to live with or accept.One of the causes of Aphasia is a stroke but it can also be caused by brain injury, infections and inflammation and brain tumors. However it is caused and the degree and aspect of it are all dealt with by a speech and language specialist. The ways they help are varied but it is invaluable to understand what has happened and how you can live with and manage the condition.
I have had two experiences of Aphasia, essentially the same, the way they were dealt with differed greatly. The first time was following two mini strokes close together a year ago and I received no help at the time. My husband helped me by making me repeat words over and over again. He started by bringing me a meal and saying 'meat, vegetables, potatoes', and when I could say that (albeit not clearly!) he started to say the type of meat or fish, the type of vegetables, the type of potatoes (mash, boiled, roast, chips etc). Then we went onto other things like fruit, clothes, flowers and much more. It was a long, tedious journey and although not conventional we had no other idea in how to do it. Not being speech and language therapists we did our best and by this summer I had almost regain normal speech. Then out of the blue I had another stroke, almost a year to the day of the first one last year.
I was sitting using my Kindle when my right hand wouldn't move. My husband happened to come into the room and I couldn't talk to him. He called an ambulance and I was taken to hospital where I was Thrombolysed. This is a clot busting drug treatment given within four and a half hours of a stroke.
I wasn't able to use my right side and as I am very right handed learning to do anything with my left hand was very difficult. I had physiotherapy and occupational therapy plus the speech therapy, quite grueling but effective.
Physiotherapy wasn't as effective as the rest as I have used a wheelchair for about 12 years and hadn't walked far for a long while which was difficult to explain to the physios under the circumstances. However, the occupational therapists were more accommodating.
I regained the strength in my right side slowly and each little improvement was an excuse to celebrate! My speech became a little better but I still found it difficult to find words and when I got frustrated I would find my speech back to square one.
The Aphasia had affected my speech and to some extent my reading. I love to read and to write so losing even some of that was a blow. I found every page was like a new book as I couldn't remember what had happened before. Sadly I knew something had gone before but had no idea what it was. When I wrote I searched for a long time for certain words. My brain was going so fast it was like trying to snatch at clouds, not able to grasp them. In my head was everything I wanted by across the middle of my face was a barrier that opened slightly then crashed shut. It is still there but opening a little more each day. When I am tired or frustrated it slams shut again and I am rather despondent. Whilst some words are elusive others are quite easy to find and those are ones that I feel wouldn't come to mind in a million years! My speech therapist said this is because I read and write a lot so my brain works in a way that finds these words. Strangely in speaking little joining words such as and, the etc won't come out all the time. I stutter over words that are similar and have to try and slow down my brain which goes at such a rate I am exhausted.
Speech Aphasia has several degrees and mine is not too bad. Some people I met in hospital have little or no speech at all. Others can't read or write, whilst some have no understanding of what people are saying to them. At first I understood at a basic level but it improved, for others, sadly, this won't happen. One lady could say only yes and no, but when the speech therapist encouraged her to sing she could make many sounds and she became brighter and happier. I can understand but have difficulty when in a noisy environment or in a group. On a one to one basis I manage quite well but if I get two people talking to me at the same time I just cannot cope. I need people to talk slowly and not use long or complicated words and I am better when not tired or anxious.
My speech therapist made me a card which pointed out I have had a stroke and have Aphasia then lists what people should do to help me communicate with them.
Talk to me, I can understand you
Don't talk to me like a child
Give me time to respond to you. I need a few seconds to gather my thoughts.
Don't interrupt me or finish my sentences.
Another thing I have found is that my emotions are very much on the surface and at times I am irrational. I don't know why but it is upsetting for me as well as another person.
Aphasia causes many feelings. Isolation, frustration, anxiety, anger, lack of confidence, depression, uncertainty, embarrassment, a different way of life and guilt. It can also mean relationship issues, unemployment and boredom. To live with Aphasia means a whole new way of life as communication is very much the basis of life. Work, leisure, relationships all rely on communication and it means learning to live again in a different way. Getting the right sort of help will make this easier but it will take time. I am not a very patient person which isn't helpful! My husband says pacing isn't in my vocabulary, which I agree with. But this needs my patience and so I will have to give in and be good.
I will admit I find this scary. I have had 12 years to get used to being out and about in a wheelchair and have endured the 'does she take sugar' episodes. Now I have a wheelchair and Aphasia and how will people treat me then? I can't lock myself away so I shall have to face it, and I know my husband will help. I want to get back to my leisure activities and meet people who I know. Those people I am sure will not treat me any differently than before but it is meeting people for the first time that scares me.
I am at home and I WILL get better. Not everyone recovers at the same rate and some will never recover completely. I may not be able to communicate in the same way ever again but I have to accept Aphasia is there and find a way of coping and living with it. Some days I can talk, not clearly but talk, other days nothing happens so I will have to take each day as it comes.
I read that getting better means different things to different people.
Feeling more relaxed and calm (not so angry)
Doing more and finding a purpose
Learning to talk and/or read better
Getting involved in something you enjoy
Looking forward to family events
Helping others
Meet new friends
Try new things
Laughing more
Making plans
It also says DON'T compare yourself to others as everyone is different and it won't help. Also sometimes talking doesn't change much but life still gets much better. What more could I ask but a better life, different but better.
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