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.
Showing posts with label life. Show all posts
Showing posts with label life. Show all posts
Tuesday, 3 September 2013
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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