CLEO faced Thursday with some trepidation. We had her appointment at the chirpodist booked, and she was very worried that the whole thing was going to be painful and traumatic. Funny really that someone who has been through what she has this last few months might find a chiropodist frightening.
Anyway, we arrived at the place to be met by a wonderful lady who sorted cleo's toenail in a few minutes. No pain, no trauma.
From that moment cleo was visibly lifted and we had a good rest of the day, including a little shopping and a nice evening at home. WE mowed the lawn with the help of Sarah and her boyfriend, and the whole day was most pleasant. Highlight was cleo cooking dinner all on her own: a wonderful spaghetti bolognese.
Friday of course always has a slightly different air because the weekend looms large, and that means work.
Having said that, I am very conscious of how much more cleo can do in recent weeks, and how she is taking a much larger part in the household stuff again. This is such a good sign because she is returning to how she used to be, the stroke is having less and less bearing on her daily life, and while there are of course many limitations as to what she can do, there are improvements every day, and that can only be good.
Family life will always continue, and cleo and I both work hard to keep that as normal as possible for the girls. We are pretty relaxed, but still maintain as structured a family life as we can. All that said we laugh a lot too, which can only be good.
Saturday, April 29, 2006
Wednesday, April 26, 2006
Day 157 - Jack of all Trades, Master of None
Physio with James was interesting today.
In an effort to keep cleo's interest (James' words) he continually comes up with new exercises and new movements for her to try. Each one is aimed at enabling her to "recruit" specific muscles. However quantity (in terms of the number of different exercises) is not always the answer, quality can be just as important. Now, we have accepted some time ago that cleo will likely never get much use back in her arm and hand, and certainly nothing like the dexterity which we all take for granted. So, in conversation with James today we all agreed that maybe a good way to go forward from here is to look at a small number of very specific movements for cleo to work on, one at a time. This may consist of several short sessions daily simply trying to turn her hand from palm down to palm upwards. The idea being that these specific movements, once better control has been achieved through many repetitions (creating pathways) they might then be combines in twos and threes to create a useful and co-ordinated movement that might be utilised to perform key tasks which presently cleo is not able to do.
In all the movements that cleo tries with her arm and hand, at present the overriding muscle that fires up is the biceps (the large muscle at the front of the upper arm). Getting control is about not just making the muscles fire but being able to relax them as well. There are other muscles that need to work in conjunction with the biceps which presently, although they are working slightly are being rather "overwhelmed" by the strength in that one specific muscle. So, cleo has to learn to relax muscles too. James has suggested that there might be several ways to do this: breath control, concentration, stimulating another muscle group in the body, which only cleo can find out, but at least this will enable the development of control. To start with the relaxation might take a long time, and much concentration, but, do it enough times and it starts to become second nature, as with anything.
James is going to work on some specific exercises based on these key movements and will run over these next week. We think that it might only be 4 or 5 specifics that can be practised at home over and over again. Get those right however, and then start to combine them, and in time you may just get some meaningful, and more to the point, controlled movement.
In one sense this has been borne out by cleos improvements in very specific things which she has done lots of in the last three months; example: getting in and out of the car. When she first came home she could hardly do this at all, now, I help her to the car and once there she can get herself in and shut the door. Even the way she walks now, is far improved although not perfect by any means, but all these improvements have come about through repetition and practise, time and time again.
Look at it like this; do too many different exercises (quantity) giving a varied experience but achieve no real quality in any of them and its a little like being Jack of all trades, and Master of none.
Cleo has to specialise, and gain a quality in those few key muscle movements, once that is done we can move on from there. We have to understand that this is not a short term thing, it will not go away, and it's only through sheer hard work and blood sweat and tears (and we both know that there will be tears) that we might look back in 6 months or a year or 5 years and say "Wow, what an improvement!"
I truly hope we can.
In an effort to keep cleo's interest (James' words) he continually comes up with new exercises and new movements for her to try. Each one is aimed at enabling her to "recruit" specific muscles. However quantity (in terms of the number of different exercises) is not always the answer, quality can be just as important. Now, we have accepted some time ago that cleo will likely never get much use back in her arm and hand, and certainly nothing like the dexterity which we all take for granted. So, in conversation with James today we all agreed that maybe a good way to go forward from here is to look at a small number of very specific movements for cleo to work on, one at a time. This may consist of several short sessions daily simply trying to turn her hand from palm down to palm upwards. The idea being that these specific movements, once better control has been achieved through many repetitions (creating pathways) they might then be combines in twos and threes to create a useful and co-ordinated movement that might be utilised to perform key tasks which presently cleo is not able to do.
In all the movements that cleo tries with her arm and hand, at present the overriding muscle that fires up is the biceps (the large muscle at the front of the upper arm). Getting control is about not just making the muscles fire but being able to relax them as well. There are other muscles that need to work in conjunction with the biceps which presently, although they are working slightly are being rather "overwhelmed" by the strength in that one specific muscle. So, cleo has to learn to relax muscles too. James has suggested that there might be several ways to do this: breath control, concentration, stimulating another muscle group in the body, which only cleo can find out, but at least this will enable the development of control. To start with the relaxation might take a long time, and much concentration, but, do it enough times and it starts to become second nature, as with anything.
James is going to work on some specific exercises based on these key movements and will run over these next week. We think that it might only be 4 or 5 specifics that can be practised at home over and over again. Get those right however, and then start to combine them, and in time you may just get some meaningful, and more to the point, controlled movement.
In one sense this has been borne out by cleos improvements in very specific things which she has done lots of in the last three months; example: getting in and out of the car. When she first came home she could hardly do this at all, now, I help her to the car and once there she can get herself in and shut the door. Even the way she walks now, is far improved although not perfect by any means, but all these improvements have come about through repetition and practise, time and time again.
Look at it like this; do too many different exercises (quantity) giving a varied experience but achieve no real quality in any of them and its a little like being Jack of all trades, and Master of none.
Cleo has to specialise, and gain a quality in those few key muscle movements, once that is done we can move on from there. We have to understand that this is not a short term thing, it will not go away, and it's only through sheer hard work and blood sweat and tears (and we both know that there will be tears) that we might look back in 6 months or a year or 5 years and say "Wow, what an improvement!"
I truly hope we can.
Days 152 to 156 - Good and Bad Days
Almost every site I read about stroke recovery has mention somewhere in it about good and bad days. Of course that is something which, if you take time to think about it, is bound to happen. When they do happen though, the bad days often take you a little by surprise. They even take cleo that way too, because she (often) doesn't expect them either, and the very nature of the bad day is that it's emotional and to some extent irrational.
The weekend was fine, at least as fine as they can be when I am at work though cleo did say she had a bad night on Sunday and hadn't slept much, which meant that by Monday she was tired. WE had no physio for Monday and so that enabled us to relax, which we did, and we ordered pizza for Monday evening, which was nice.
Cleo has a bad toe! She has a slight ingrowing toenail on her left foot, and because she cannot cut the nail properly it has become painful (I think there might be a slight infection). It is too tender to try and cut the nail with just a pair of scissors or clippers. So today we called a local chiropodist who has agreed to see cleo on Thursday morning to sort it out.
Probably because the sore toe was hurting too, cleo was having a "why me?" day today. Rather emotional and a mindset that said "I don't know if I can be bothered with all this". Now, it's interesting that someone left a comment on the blog a few days ago, a part of which I quote here:
Does cleo feel that, in the hectic schedule of rehabilitation, she has yet had sufficient space in which to begin to grieve properly?
In one sense it's a valid question, although I honestly believe that without us all to push her along she would never have made the huge strides she has so far. We have touched on the grieving issue before with Ann Lewis from the Stroke Association. What I also believe is that if a stroke survivor (and many others in a similar situation too) are left until they feel the grieving of the loss of whatever it is has passed then their rehabilitation would take much longer. We are some 5 months since the stroke and while I accept that some days cleo is best not pushed too far, it would be all too easy to do very little and see her fall into despair. I could not, and will never, allow that to happen.
The weekend was fine, at least as fine as they can be when I am at work though cleo did say she had a bad night on Sunday and hadn't slept much, which meant that by Monday she was tired. WE had no physio for Monday and so that enabled us to relax, which we did, and we ordered pizza for Monday evening, which was nice.
Cleo has a bad toe! She has a slight ingrowing toenail on her left foot, and because she cannot cut the nail properly it has become painful (I think there might be a slight infection). It is too tender to try and cut the nail with just a pair of scissors or clippers. So today we called a local chiropodist who has agreed to see cleo on Thursday morning to sort it out.
Probably because the sore toe was hurting too, cleo was having a "why me?" day today. Rather emotional and a mindset that said "I don't know if I can be bothered with all this". Now, it's interesting that someone left a comment on the blog a few days ago, a part of which I quote here:
Does cleo feel that, in the hectic schedule of rehabilitation, she has yet had sufficient space in which to begin to grieve properly?
In one sense it's a valid question, although I honestly believe that without us all to push her along she would never have made the huge strides she has so far. We have touched on the grieving issue before with Ann Lewis from the Stroke Association. What I also believe is that if a stroke survivor (and many others in a similar situation too) are left until they feel the grieving of the loss of whatever it is has passed then their rehabilitation would take much longer. We are some 5 months since the stroke and while I accept that some days cleo is best not pushed too far, it would be all too easy to do very little and see her fall into despair. I could not, and will never, allow that to happen.
Thursday, April 20, 2006
Day 151 - Good Girl!
No physio today, as is often the case on Thursdays. James tends to be too busy. So it was a quiet morning at home. This afternoon we had to go to Hannah's school to see her teacher, for a parent/teacher's day. They had made special arrangements to see us because of cleo's need to be in the wheelchair.
I have said many times in this blog how well the girls have coped with the whole episode of the stroke, the coming to terms, and the subsequent changes that have been forced on us all. What was nice today, was that Hannah's head of year also said how well she had coped too. She had never used it as an excuse, and was still making excellent progress in all her subjects. She is a good pupil and we were rightly proud to hear how well she is doing. Good girl Hannah!
The family, apart from the immediate spouse or partner, and especially children, are very often forgotten or ignored in the whole mass of things that are going on with a major episode like this, but it's important to include them, keep them informed, and remember too that they are as affected, or even more so, than adults. They may never have experienced any kind of major illness or trauma in a relative before, and as such they need special looking after. We need to take the time try and explain what is happening: without hiding the truth or giving false hope, but also without frightening too much. Not an easy thing.
Friday looms and a weekend at work of course. Less said about that the better I suppose.
I have said many times in this blog how well the girls have coped with the whole episode of the stroke, the coming to terms, and the subsequent changes that have been forced on us all. What was nice today, was that Hannah's head of year also said how well she had coped too. She had never used it as an excuse, and was still making excellent progress in all her subjects. She is a good pupil and we were rightly proud to hear how well she is doing. Good girl Hannah!
The family, apart from the immediate spouse or partner, and especially children, are very often forgotten or ignored in the whole mass of things that are going on with a major episode like this, but it's important to include them, keep them informed, and remember too that they are as affected, or even more so, than adults. They may never have experienced any kind of major illness or trauma in a relative before, and as such they need special looking after. We need to take the time try and explain what is happening: without hiding the truth or giving false hope, but also without frightening too much. Not an easy thing.
Friday looms and a weekend at work of course. Less said about that the better I suppose.
Day 150 - Bouncing Back!
We had a good physio session with James today, cleo really pushed herself, and I was so pleased to note that there seemed little of the emotional down left from yesterday. I think James was too! He has given cleo some arm exercises to continue working with in her own time, and I am sure she will get something from those.
Other than that, its 150 days since the stroke. Now, in the overall scheme of recovery time from a stroke that may not be too long, although I have said before it seems an age on some days, and on others like it has flown by in the wink of an eye.
What i can say is that cleo is a fighter, and I know that she will not give up. She has huge reserves of mental strength, even though she doubts herself quite a lot. For many people the severity of the stroke she suffered would have kept them in hospital for longer, and they would be nowhere near the level of recovery which she is at after this time.
Good girl, keep going. It will all be right in the end!
Other than that, its 150 days since the stroke. Now, in the overall scheme of recovery time from a stroke that may not be too long, although I have said before it seems an age on some days, and on others like it has flown by in the wink of an eye.
What i can say is that cleo is a fighter, and I know that she will not give up. She has huge reserves of mental strength, even though she doubts herself quite a lot. For many people the severity of the stroke she suffered would have kept them in hospital for longer, and they would be nowhere near the level of recovery which she is at after this time.
Good girl, keep going. It will all be right in the end!
Tuesday, April 18, 2006
Day 149 - Emotions
However well we know, or think we know someone, they will always surprise us. Today was an example of that. A while ago, cleo seemed to come to terms with the adaptability idea, that is, to adapt and use what movement she had in her arm and try to harness that in a controlled way.
In physio this morning James was working on her shoulder and arm, and all of a sudden there were tears. It was almost as if the dam that had been holding them back for weeks had broken. Quite what triggered this i am not sure, although it seemed to revolve around the "hopelessness" of cleo's present inability to move her hand and to keep her arm still, rather than see it "flop" around.
So what to do?
My job in this whole exercise is to support, care for, love, help, push and nurture cleo, but sometimes it's hard to know how much. Sure I can push her to do the exercises, I can try and work with her to achieve some results, and I can even point out the improvements that sometimes she cannot see, but in all this the real dilemma is that I don't want to make her unhappy, or to think that I am pushing her for my own selfish reasons. That of course is not true and never will be.
So, tears wiped away we start again, and shortly after there are more. James answers the "why bother?" question this time: "because if there was no hope of any progress I wouldn't be seeing you. There is some flickering in the inactive muscles and there is a good chance of that improving"
It hurts me terribly ( I know I have said this before) to see her upset, but I have to, at least to some extent, push cleo, if only for her own good, and to continue to facilitate improvements in her situation. The balance that has to be struck is between the physical pushing and the mental exhaustion. I know she gets tired, and I know she finds everything so frustrating, but if we don't push the limits of what is there no improvement will ever happen, at least not for a long time. While the body does heal itself i am convinced we can help it, and the physiotherapy, along with the family and support around her is there to do that for cleo.
Everything in cleos life right now (and mine too) revolves around her rehabilitation, and the emotional stress of that will sometimes overflow. We (me and the girls) have to try to make that as painless for cleo as we can. Emotions of course play a big part in all this, and they cannot be ignored, but sometimes they are very difficult to deal with.
In physio this morning James was working on her shoulder and arm, and all of a sudden there were tears. It was almost as if the dam that had been holding them back for weeks had broken. Quite what triggered this i am not sure, although it seemed to revolve around the "hopelessness" of cleo's present inability to move her hand and to keep her arm still, rather than see it "flop" around.
So what to do?
My job in this whole exercise is to support, care for, love, help, push and nurture cleo, but sometimes it's hard to know how much. Sure I can push her to do the exercises, I can try and work with her to achieve some results, and I can even point out the improvements that sometimes she cannot see, but in all this the real dilemma is that I don't want to make her unhappy, or to think that I am pushing her for my own selfish reasons. That of course is not true and never will be.
So, tears wiped away we start again, and shortly after there are more. James answers the "why bother?" question this time: "because if there was no hope of any progress I wouldn't be seeing you. There is some flickering in the inactive muscles and there is a good chance of that improving"
It hurts me terribly ( I know I have said this before) to see her upset, but I have to, at least to some extent, push cleo, if only for her own good, and to continue to facilitate improvements in her situation. The balance that has to be struck is between the physical pushing and the mental exhaustion. I know she gets tired, and I know she finds everything so frustrating, but if we don't push the limits of what is there no improvement will ever happen, at least not for a long time. While the body does heal itself i am convinced we can help it, and the physiotherapy, along with the family and support around her is there to do that for cleo.
Everything in cleos life right now (and mine too) revolves around her rehabilitation, and the emotional stress of that will sometimes overflow. We (me and the girls) have to try to make that as painless for cleo as we can. Emotions of course play a big part in all this, and they cannot be ignored, but sometimes they are very difficult to deal with.
Monday, April 17, 2006
Days 147 and 148 - Back to School
Another weekend over, and today was a bank holiday. Tomorrow the girls are back to school after the Easter Holidays and we will have some time together alone.
Mind you I have a visit to the dentist tomorrow, so it's not all fun!
We are supposed to see James too, but the time clashes with my dentist; we are going to have to try and reschedule the hospital if we can. cleo seems well enough, although she was a little tired this evening. I think the tiredness is something we have to accept, and plan around whenever we do things, because I doubt it will ever completely go away.
Mind you I have a visit to the dentist tomorrow, so it's not all fun!
We are supposed to see James too, but the time clashes with my dentist; we are going to have to try and reschedule the hospital if we can. cleo seems well enough, although she was a little tired this evening. I think the tiredness is something we have to accept, and plan around whenever we do things, because I doubt it will ever completely go away.
Sunday, April 16, 2006
Day 145 and 146 - Independence
As with many of the strides forward that cleo has made since leaving hospital, the most significant ones often happen as a matter of course, and it's only afterwards that we realise the importance of each one.
Saturdays of course I get home from work in the morning and have to sleep. Cleo woke me this afternoon and proudly told me she had cooked her own breakfast today: bacon and eggs. I could tell she was pleased with herself although i didn't have that much time to talk about it as I am always rushing to get ready to go back to work.
Tonight (Saturday) Sarah was out and so cleo spent a few hours at home on her own. That also is a great stride forward, and I am so proud of her that she is meeting these personal milestones head-on. A couple of months ago it would have been unthinkable for us to leave her alone at home, even in the day, and now she is confident enough in her own abilities to cook food (a kitchen can be a dangerous place for those with any kind of disability, and cleo has rather shied away from cooking and things because of this) and to be left alone.
Saturdays of course I get home from work in the morning and have to sleep. Cleo woke me this afternoon and proudly told me she had cooked her own breakfast today: bacon and eggs. I could tell she was pleased with herself although i didn't have that much time to talk about it as I am always rushing to get ready to go back to work.
Tonight (Saturday) Sarah was out and so cleo spent a few hours at home on her own. That also is a great stride forward, and I am so proud of her that she is meeting these personal milestones head-on. A couple of months ago it would have been unthinkable for us to leave her alone at home, even in the day, and now she is confident enough in her own abilities to cook food (a kitchen can be a dangerous place for those with any kind of disability, and cleo has rather shied away from cooking and things because of this) and to be left alone.
Friday, April 14, 2006
Day 144 - Lookin' Good.
It's funny how one's perception can suddenly change, or be changed by another.
James has a poster on his wall which says something like "Healing goes at it's own pace. Your body knows whats right for you"
Last night when we went to dinner cleo had the opportunity to get dressed up, new clothes which we had bought for her, and she looked great. I put that down to the positive mental attitude, but today, well, let me explain.
She got up and put on a pair of black jogging trousers and a tee shirt, nothing special. I was already up, and heard her coming down the stairs. I went to meet her and i immediately noticed a change. Without sounding like I had been seeing her as "different" for the last 4 months or so, it struck me she looked more normal, radiant even. This was the cleo I knew before the stroke. I cannot say quite what it was, but the spark was back. The walk is still unstable, the hand doesn't work, but she sort of glowed. It was as if she had rediscovered herself. She was smiling again, and it wasn't that nervous laugh that she has had since November, but the "cleo smile", the one that is all her, and nobody else.
I still can't quite put my finger on it, the change I mean; maybe sometimes we shouldn't question these things too much, but simply accept them as they are, and be thankful.
Well, I am, thankful I mean.
James has a poster on his wall which says something like "Healing goes at it's own pace. Your body knows whats right for you"
Last night when we went to dinner cleo had the opportunity to get dressed up, new clothes which we had bought for her, and she looked great. I put that down to the positive mental attitude, but today, well, let me explain.
She got up and put on a pair of black jogging trousers and a tee shirt, nothing special. I was already up, and heard her coming down the stairs. I went to meet her and i immediately noticed a change. Without sounding like I had been seeing her as "different" for the last 4 months or so, it struck me she looked more normal, radiant even. This was the cleo I knew before the stroke. I cannot say quite what it was, but the spark was back. The walk is still unstable, the hand doesn't work, but she sort of glowed. It was as if she had rediscovered herself. She was smiling again, and it wasn't that nervous laugh that she has had since November, but the "cleo smile", the one that is all her, and nobody else.
I still can't quite put my finger on it, the change I mean; maybe sometimes we shouldn't question these things too much, but simply accept them as they are, and be thankful.
Well, I am, thankful I mean.
Thursday, April 13, 2006
Day 143 - Amongst Friends
James was very upbeat today in physio; he has really taken to heart the idea of adapting and improving what is actually there rather than striving for something which may never appear. He is working mostly on cleo's arm and hand, and leaving us to work on her walking with our treadmill at home. Of course if we have any questions relating to walking he will always help and advise, but he seems to be happy with what we are doing in that respect. His focus is very much on the arm, shoulder stability and learning to control those movements which are presently more involuntary.
Our evening was different tonight. We visited our friend Alan in Essex for dinner, with the girls. He cooked a wonderful meal, and we thoroughly enjoyed the food and the company. Alan of course is a paraplegic, and he is a shining example of how to adapt and live as normally as possible while being confined to a wheelchair. There is practically nothing that he cannot do. I am sure that cleo sees, albeit on a different level, the adaptability issues overcome by Alan in herself. Of course she will likely walk properly again, but in terms of managing the rehabilitation overall, Alan has good advice and years of "been there, done that".
Yesterdays dark thoughts seem to have gone too, which is good. I think that cleo has again accepted that she muct live day to day, and not let all those fears and worries drag her down. I know they will be there from time to time, but a positive mental attitude is a good starting point from which to build.
On a final note cleo walked 5 minutes on our home treadmill today and she has set herself the task of completing a similar routine each day. I think that can only benefit her recovery, and will improve her walk and balance very quickly.
Our evening was different tonight. We visited our friend Alan in Essex for dinner, with the girls. He cooked a wonderful meal, and we thoroughly enjoyed the food and the company. Alan of course is a paraplegic, and he is a shining example of how to adapt and live as normally as possible while being confined to a wheelchair. There is practically nothing that he cannot do. I am sure that cleo sees, albeit on a different level, the adaptability issues overcome by Alan in herself. Of course she will likely walk properly again, but in terms of managing the rehabilitation overall, Alan has good advice and years of "been there, done that".
Yesterdays dark thoughts seem to have gone too, which is good. I think that cleo has again accepted that she muct live day to day, and not let all those fears and worries drag her down. I know they will be there from time to time, but a positive mental attitude is a good starting point from which to build.
On a final note cleo walked 5 minutes on our home treadmill today and she has set herself the task of completing a similar routine each day. I think that can only benefit her recovery, and will improve her walk and balance very quickly.
Tuesday, April 11, 2006
Day 142 - Unexpected Reaction.
Sometimes we react to people based on what we see and hear. How they present themselves to us is a driving force in our own perception of them, what they are, and what they do. Today was very much a case in point. We have to connect with people to understand them.
Firstly we had our appointment with the consultant, but more of that later, and immediately following the appointment we saw James for physio.
I watched cleo with James today during her physio and one of the things that I noticed the most is that he puts her at ease. He makes her laugh, and he gets the best out of her. Not for one moment does that get in the way of the work he is doing, in fact it probably enhances it. He has a knack of connecting with her which makes her receptive to what he is doing, and saying. I have noticed this before, and I honestly believe that James is one of the few healthcare professionals we have come across since the stroke who has this ability. Maybe it comes from the fact that he genuinely enjoys what he is doing? Whatever it is, it works, and would that there were more like him around, because there would be many more patients in a better, more receptive frame of mind, and recovery and rehabilitation, I am convinced, would take far less time, and be far more effective.
So, on to our appointment with the consultant. Frankly he didn't tell us anything we didn't know, although he has prescribed a mild blood pressure tablet for cleo to try to reduce her blood pressure a little, even though it is within normal limits. He suggested that a 10% reduction in blood pressure has been shown to give a 25% reduction in the incidence of stroke. He is a dour man, and seems to have little to say.
When we got home cleo remarked that she felt that after the appointment her positive thoughts from the last few weeks seemed to have been rather lost. She was not sure why, but she felt like she had gone backward. I too, am not sure quite why either, but it concerns me that an appointment with the person ultimately in charge of her care has this effect on her. Why should this happen? Maybe he is excellent at clinical stuff, but I am not so sure about his people skills. He just doesn't engender any belief, or confidence. I understand that he cannot give a patient wrong information, and we wouldn't expect that, but I am sure that in every situation there are positives to be found, you just need to look for them. What has only just occurred to me as I write this entry is that he didn't even examine her to see the extent of the recovery she has made. I now have to try and bring cleo out of the "dark thought" region again. We have worked so hard in the last few weeks to improve her outlook, and 30 minutes with a consultant creates an adverse reaction in her which seems to have spoilt that.
Does he care, and is he really interested? Frankly I doubt it.
Firstly we had our appointment with the consultant, but more of that later, and immediately following the appointment we saw James for physio.
I watched cleo with James today during her physio and one of the things that I noticed the most is that he puts her at ease. He makes her laugh, and he gets the best out of her. Not for one moment does that get in the way of the work he is doing, in fact it probably enhances it. He has a knack of connecting with her which makes her receptive to what he is doing, and saying. I have noticed this before, and I honestly believe that James is one of the few healthcare professionals we have come across since the stroke who has this ability. Maybe it comes from the fact that he genuinely enjoys what he is doing? Whatever it is, it works, and would that there were more like him around, because there would be many more patients in a better, more receptive frame of mind, and recovery and rehabilitation, I am convinced, would take far less time, and be far more effective.
So, on to our appointment with the consultant. Frankly he didn't tell us anything we didn't know, although he has prescribed a mild blood pressure tablet for cleo to try to reduce her blood pressure a little, even though it is within normal limits. He suggested that a 10% reduction in blood pressure has been shown to give a 25% reduction in the incidence of stroke. He is a dour man, and seems to have little to say.
When we got home cleo remarked that she felt that after the appointment her positive thoughts from the last few weeks seemed to have been rather lost. She was not sure why, but she felt like she had gone backward. I too, am not sure quite why either, but it concerns me that an appointment with the person ultimately in charge of her care has this effect on her. Why should this happen? Maybe he is excellent at clinical stuff, but I am not so sure about his people skills. He just doesn't engender any belief, or confidence. I understand that he cannot give a patient wrong information, and we wouldn't expect that, but I am sure that in every situation there are positives to be found, you just need to look for them. What has only just occurred to me as I write this entry is that he didn't even examine her to see the extent of the recovery she has made. I now have to try and bring cleo out of the "dark thought" region again. We have worked so hard in the last few weeks to improve her outlook, and 30 minutes with a consultant creates an adverse reaction in her which seems to have spoilt that.
Does he care, and is he really interested? Frankly I doubt it.
Sunday, April 09, 2006
Days 138, 139, 140, 141 - Outside the box
Coming to terms with stroke is in many ways like grieving: there is a sense of loss, on a very personal level, and as Ann Lewis says, once you can come to terms with that loss, and wake up each day looking forward and not thinking about what was, or might have been, then you can really begin to move forward. I am not sure that within the emotional creatures which we humans are, there is the capacity to reduce totally that feeling, because in some ways we do need an emotional outlet.
What I do notice in cleo this week is a change in the way she is approaching many things. She is regaining her capacity to think about, and discuss longer term future plans. We talked about our ideas for the next house we might buy, which is something we have not done since the stroke (at least not in such a positive light). She has also discussed with James about the management of her arm and hand over the coming years, rather than weeks and months. This is an indicator that she is moving away from those dark thoughts that surrounded her during the weeks immediately after 21st November. At that time she was so much more focussed on the "now" rather than the future, because at that time maybe she didn't see much of a future.
The weekend's work is finished again and we are together for another few days. For us, weekdays are our weekends.
Tomorrow we have to attend the consultant's clinic, and we shall see what he has to say. As you might have guessed from previous entries in here I am less than impressed with the overall way in which the NHS works, and the effectiveness of the follow-up after discharge. As I have said before, if we don't manage the rehabilitation process I think it is unlikely that anyone else will.
After the appointment with the consultant, we are also scheduled to see James for some more physio too. I do believe that cleo's new-found attitude regarding making use of what she has, rather than trying to kick start something she has not got, has altered James' stance too: he seems to be focussing on the ways that cleo might harness the involuntary movements in her arm, and to help her learn how to control those better. It may be that he is thinking "outside the box" a little more, and if that creates results for us, and for others too, then that is good.
I am very much a fan of seeing the bigger picture, and looking at all the possibilities which might effect some good or bad in things. Trying to understand how all these factors fit together is not easy, but there can be great benefit from at least pondering the various aspects from time to time. Very often, a particular route may work for you, but for no one else, and unless you see that route yourself, others might discount it based on their own experience.
Never be afraid to think "outside the box"
What I do notice in cleo this week is a change in the way she is approaching many things. She is regaining her capacity to think about, and discuss longer term future plans. We talked about our ideas for the next house we might buy, which is something we have not done since the stroke (at least not in such a positive light). She has also discussed with James about the management of her arm and hand over the coming years, rather than weeks and months. This is an indicator that she is moving away from those dark thoughts that surrounded her during the weeks immediately after 21st November. At that time she was so much more focussed on the "now" rather than the future, because at that time maybe she didn't see much of a future.
The weekend's work is finished again and we are together for another few days. For us, weekdays are our weekends.
Tomorrow we have to attend the consultant's clinic, and we shall see what he has to say. As you might have guessed from previous entries in here I am less than impressed with the overall way in which the NHS works, and the effectiveness of the follow-up after discharge. As I have said before, if we don't manage the rehabilitation process I think it is unlikely that anyone else will.
After the appointment with the consultant, we are also scheduled to see James for some more physio too. I do believe that cleo's new-found attitude regarding making use of what she has, rather than trying to kick start something she has not got, has altered James' stance too: he seems to be focussing on the ways that cleo might harness the involuntary movements in her arm, and to help her learn how to control those better. It may be that he is thinking "outside the box" a little more, and if that creates results for us, and for others too, then that is good.
I am very much a fan of seeing the bigger picture, and looking at all the possibilities which might effect some good or bad in things. Trying to understand how all these factors fit together is not easy, but there can be great benefit from at least pondering the various aspects from time to time. Very often, a particular route may work for you, but for no one else, and unless you see that route yourself, others might discount it based on their own experience.
Never be afraid to think "outside the box"
Thursday, April 06, 2006
Day 137 - Longer Term....
Back to see James this afternoon, and he was pleased that cleo's arm and hand still retained its suppleness, and that her arm had improved in the way that she holds it. Sometimes of course it's good to have a break from seeing someone because that way one is better equipped to notice changes and improvements that on a daily basis we may not notice.
We also asked james about his thoughts on his longer term involvement, and he suggested that while he may have to cut down to perhaps 3 times a week for cleo's physiotherapy he will be involved for a while yet, certainly a few more months anyway. Emma from the DART team, who we have not seen yet (watch out for alien craft again!) will actually plan cleo's rehab with James and review weekly with him too, so there should be a consistent approach.
On a different note, the treadmill I purchased was delivered today. Further to comments here I have discussed this with James and he is happy for cleo's rehab to continue using this. The idea here is not to create vastly improved levels of fitness, but to be able to walk in a controlled and regular manner, thus facilitating the steady and ongoing improvement of cleo's walking action. The treadmill we have bought can work at the same speed as the one James uses, and has all the usual safety features too. As James explained, it's about practise, and becoming accustomed to what she has achieved thus far, and working on that in a safe and controlled way. As long as we do this sensibly James agrees there is no issue of concern about hypertension, or other health problems that need to be considered.
We did contact Dr Thomas' secretary (the consultant at the stroke ward) last week asking about the non-existent follow up consultation. Seems it got missed along the way. Anyway, we have an appointment for next week. We shall see what that brings.
It does annoy me that we are always cautioned to take advice, to be guided by the "professionals" who are supposedly there all the time with our best interests at heart. Frankly, that is bullshit! If we were not taking control of cleo's rehab, to the extent that we have had to contact the consultant to arrange the follow up, which should have happened as a matter of course 8 weeks after discharge, I am sure that we would never see anyone again, except perhaps James, who genuinely cares about his patients, and enjoys his job, and which he does exceptionally well too. In the longer term of course, there cannot be daily physio for years to come, so we will have to manage this ourselves, but with the right guidance we should have little problem achieving this.
We also asked james about his thoughts on his longer term involvement, and he suggested that while he may have to cut down to perhaps 3 times a week for cleo's physiotherapy he will be involved for a while yet, certainly a few more months anyway. Emma from the DART team, who we have not seen yet (watch out for alien craft again!) will actually plan cleo's rehab with James and review weekly with him too, so there should be a consistent approach.
On a different note, the treadmill I purchased was delivered today. Further to comments here I have discussed this with James and he is happy for cleo's rehab to continue using this. The idea here is not to create vastly improved levels of fitness, but to be able to walk in a controlled and regular manner, thus facilitating the steady and ongoing improvement of cleo's walking action. The treadmill we have bought can work at the same speed as the one James uses, and has all the usual safety features too. As James explained, it's about practise, and becoming accustomed to what she has achieved thus far, and working on that in a safe and controlled way. As long as we do this sensibly James agrees there is no issue of concern about hypertension, or other health problems that need to be considered.
We did contact Dr Thomas' secretary (the consultant at the stroke ward) last week asking about the non-existent follow up consultation. Seems it got missed along the way. Anyway, we have an appointment for next week. We shall see what that brings.
It does annoy me that we are always cautioned to take advice, to be guided by the "professionals" who are supposedly there all the time with our best interests at heart. Frankly, that is bullshit! If we were not taking control of cleo's rehab, to the extent that we have had to contact the consultant to arrange the follow up, which should have happened as a matter of course 8 weeks after discharge, I am sure that we would never see anyone again, except perhaps James, who genuinely cares about his patients, and enjoys his job, and which he does exceptionally well too. In the longer term of course, there cannot be daily physio for years to come, so we will have to manage this ourselves, but with the right guidance we should have little problem achieving this.
Wednesday, April 05, 2006
Day 136 - Conflict of Interest
Today of course we were supposed to return to the hospital to see james. He called us at lunchtime, sounding very ill, saying he was going home as he had a chest infection. From what cleo said (she spoke to him, I didn't) he sounded awful. We have provisionally arranged to go tomorrow but we will have to wait and see if james is any better tomorrow.
Today cleo remarked (and not for the first time) how tired she still gets. When we are not out or doing things she always tries to get a couple of hours sleep in the afternoon. When she does, this recharges her batteries enabling her to stay awake well into the evening. However, today, hannah woke her not long after she had gone to sleep, and as a result by this evening cleo was tired and emotional.
This is a difficult situation to resolve: cleo has to get her rest, and yet her instinct to be mother to her kids will often override that. Hannah of course at 11 years old needs to be with her mum, and so it's difficult to explain that she should let her mother sleep when she really wants to spend some time with her. A definite conflict of interest the answer to which I have to say I don't know.
As we said last week parenting goes on and in all we do the kids come first, though I do wish I could make Hannah understand. It's important of course that we do that, if we can, without hurting her feelings too much, because that would be counter-productive. In time I am sure that Hannah will see the need for her mum to rest much more than she ever did before, but until that time we must balance one against the other as best we can.
Today cleo remarked (and not for the first time) how tired she still gets. When we are not out or doing things she always tries to get a couple of hours sleep in the afternoon. When she does, this recharges her batteries enabling her to stay awake well into the evening. However, today, hannah woke her not long after she had gone to sleep, and as a result by this evening cleo was tired and emotional.
This is a difficult situation to resolve: cleo has to get her rest, and yet her instinct to be mother to her kids will often override that. Hannah of course at 11 years old needs to be with her mum, and so it's difficult to explain that she should let her mother sleep when she really wants to spend some time with her. A definite conflict of interest the answer to which I have to say I don't know.
As we said last week parenting goes on and in all we do the kids come first, though I do wish I could make Hannah understand. It's important of course that we do that, if we can, without hurting her feelings too much, because that would be counter-productive. In time I am sure that Hannah will see the need for her mum to rest much more than she ever did before, but until that time we must balance one against the other as best we can.
Tuesday, April 04, 2006
Days 132, 133, 134 and 135 - Down to Earth Common Sense.
Another weekend out of the way, and little to say about that.
Today we had one of our regular visits from Ann Lewis, of the Stroke Association . Sometimes it helps for good common sense and advice to come from those not actually involved in ones care, and who are not family. Since the moment we first met Ann she has been informative, supportive and like us, straight talking. She offers good down to earth advice, and cleo is of the view that of all the people we have met along this Road to Recovery Ann is the one who will likely be of most use in the long term. While having no input into cleo's medical rehabilitation, emotional support is of course just as important, and we are certain that Ann's help and advice will be crucial over the next months.
The following is from the Stroke Assopciation website:
The Stroke Association is the only national charity solely concerned with combating stroke in people of all ages. It funds research into prevention, treatment and better methods of rehabilitation, and helps stroke patients and their families directly through its community services. These include dysphasia support, family support, information services and welfare grants. We also campaign, educate and inform to increase knowledge of stroke at all levels of society and we act as a voice for everyone affected by stroke.
They work quietly in the background offering help and support, and of course, not only to the victims of stroke, but to their families too. It's good to know there is always someone available who can take the time to chat, and give advice based on experience and a deep understanding of the needs and problems encountered throughout the recovery and rehabilitation process.
Ann is an ex-nurse, so brings all that knowledge too, and speaks with authority on all aspects of rehab and stroke.
Cleo and I would like to thank Ann for her support and help, her advice and encouragement over the last three months. When you have chatted to Ann for a couple of hours you always seem to have a renewed clarity about where you are and where you are going.
Long may that continue.
Today we had one of our regular visits from Ann Lewis, of the Stroke Association . Sometimes it helps for good common sense and advice to come from those not actually involved in ones care, and who are not family. Since the moment we first met Ann she has been informative, supportive and like us, straight talking. She offers good down to earth advice, and cleo is of the view that of all the people we have met along this Road to Recovery Ann is the one who will likely be of most use in the long term. While having no input into cleo's medical rehabilitation, emotional support is of course just as important, and we are certain that Ann's help and advice will be crucial over the next months.
The following is from the Stroke Assopciation website:
The Stroke Association is the only national charity solely concerned with combating stroke in people of all ages. It funds research into prevention, treatment and better methods of rehabilitation, and helps stroke patients and their families directly through its community services. These include dysphasia support, family support, information services and welfare grants. We also campaign, educate and inform to increase knowledge of stroke at all levels of society and we act as a voice for everyone affected by stroke.
They work quietly in the background offering help and support, and of course, not only to the victims of stroke, but to their families too. It's good to know there is always someone available who can take the time to chat, and give advice based on experience and a deep understanding of the needs and problems encountered throughout the recovery and rehabilitation process.
Ann is an ex-nurse, so brings all that knowledge too, and speaks with authority on all aspects of rehab and stroke.
Cleo and I would like to thank Ann for her support and help, her advice and encouragement over the last three months. When you have chatted to Ann for a couple of hours you always seem to have a renewed clarity about where you are and where you are going.
Long may that continue.
Saturday, April 01, 2006
Day 131 - Coming of Age
Today was special for 2 reasons.
Firstly, Sarah celebrated her 18th birthday today. We both wish her a wonderful birthday and a great year ahead. I know that a number of times over the last few months cleo has thought that she might not be around to see her daughter come of age. It is interesting to note though that those rather darker moods have occurred less and less of late. This again is a measure of improvement, in this case on a mental level, which is as important, if not more so in some ways than the physical. Having the right mindset is instrumental in being able to set oneself on the physical processes which go towards the rehabilitation process. In fact I would say they are interdependent.
Our acclimatisation to the changes which were thrust upon us becomes easier each day, this because we adapt more and more, and also because cleo makes little improvements too. I also have to applaud, yet again, the girls, and how they have coped remarkably under the huge stress which no doubt both have felt, and continue to feel every day. Well done girls!
The second reason? Because I didn't have to go to work this evening; Sarah was in London attending a concert, so I took the night off of work. Hannah went to her father's for the weekend, and cleo and I had a few hours alone, to relax, together. That was nice. Of course, like all parents we are now sitting waiting for the last train from London to arrive (which will be at about 01.40 am!) when I shall drive to the station to meet Sarah and her boyfriend.
Whatever else happens, parenting will always go on!
Firstly, Sarah celebrated her 18th birthday today. We both wish her a wonderful birthday and a great year ahead. I know that a number of times over the last few months cleo has thought that she might not be around to see her daughter come of age. It is interesting to note though that those rather darker moods have occurred less and less of late. This again is a measure of improvement, in this case on a mental level, which is as important, if not more so in some ways than the physical. Having the right mindset is instrumental in being able to set oneself on the physical processes which go towards the rehabilitation process. In fact I would say they are interdependent.
Our acclimatisation to the changes which were thrust upon us becomes easier each day, this because we adapt more and more, and also because cleo makes little improvements too. I also have to applaud, yet again, the girls, and how they have coped remarkably under the huge stress which no doubt both have felt, and continue to feel every day. Well done girls!
The second reason? Because I didn't have to go to work this evening; Sarah was in London attending a concert, so I took the night off of work. Hannah went to her father's for the weekend, and cleo and I had a few hours alone, to relax, together. That was nice. Of course, like all parents we are now sitting waiting for the last train from London to arrive (which will be at about 01.40 am!) when I shall drive to the station to meet Sarah and her boyfriend.
Whatever else happens, parenting will always go on!
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