cleo can write too.

Cleo has commented several times in this blog since she has been home.

However, as she is the most important one here, I felt it made sense for her to become a contributor. Hence she is now a "member" of this writing team. I will continue to write my daily pieces, but cleo may well comment on those, or other things which she feels need to be said.

It is as a direct result of the comment from Dr John last night that she felt the need to express her views, and who am i to stop that. Cleo is an intelligent and articulate person, and i am pleased that she has agreed to add her thoughts and ideas to this record

Day 130 - Note of Caution.

Melanie made her last visit before her holiday today, as she is away now for a couple of weeks, but has agreed to contact us again on her return so that she can follow up with more manipulation if required depending on James' workload.

Of course this means that until 5th April it is up to us to do the manipulation, as we don't see James until then. The referral made to the DART team (Emma was going to contact us) has not produced any contact yet.

cleo and I both agreed that we will give the ALA a try, however, a comment left on the entry for yesterday was as follows:

"As a doctor I have very serious reservations about your proposed actions to rehabilitate cleo. In particular, I should advise gradually increasing walking times rather than the use of a treadmill, which, by increasing any hypertension she may have (and I do not know if she has any), could be dangerous. Please take advice from professionals- doctors, physiotherapists and occupational therapist and do NOT do it "Your Way". You may well regret it if you do and the important thing is cleo's SAFE rehabilitation, and NOT via your layman's researches."
Dr John

I am grateful that someone has taken an interest, because many within cleo's care team have not, obviously. Most of them are aware of the idea of the treadmill, as it has been something we have been looking at for some time. James himself (the neurophysiotherapist) has used one within her rehabilitation. However I do understand the note of caution, and will take further advice. cleo's welfare and recovery is my sole focus, and it may be a sad indictment of the type of care which we are (or are not) receiving that I have felt the need to try and move things forward as I have.

For the record, cleos blood pressure is monitored regularly and is considered "normal"[115/85] as is her resting pulse rate [66]. There is NO question of me pushing her past any limits that are unreasonable, and that would never happen.

I think that gradually increasing walking times can be achieved via the treadmill, and we know the speed which James uses his treadmill. However, again I am prepared to accept good advice, but would add that if one does not take a lead in their own rehabilitation, the natural will to recover may be lost, and the lack of drive shown by the care teams charged with that responsibility for the most part soon shows. Unfortunately this for me, is the way of the NHS today.

Dr John, I thank you for your comments which we of course take on board.

Keep reading and please comment again.

Day 129 - From Every Angle...

To achieve good results in anything you have to cover all the angles. You need to think of all contingencies, and all the possibilities that may affect, and have an effect on, what you are doing. After discussing at length cleo's "epiphany" of yesterday, I am convinced that while her focus must be on improving, controlling, and re-learning those things which will give her back better control of her arm, hand and leg, mine must be on providing the best possible help to enable her to do that.

Of course the support that both I and the girls will give is vital, and naturally that goes without saying. It will always be there.

I believe that fitness is a part of this rehabilitation, and I hope cleo agrees. James mentioned when we first used the treadmill with him that regaining overall fitness, and especially withing the affected muscle groups is paramount. Remember that cleo has been fairly inactive since November, and this will create a lack of fitness and even muscle wastage, especially in the affected areas.

We have to find a way for her to regain some fitness, and i am now of the opinion that a treadmill is the best route for this. Reading various sites it also seems that walking is as good a way to lose weight as any. This goes for me too, and i will partake of the exercise routine as well. So, the treadmill will be ordered in the next day or so.

However there are other aspects too. Cleo has what is known as "syndrome X" or "metabolic syndrome", which is characterised by high cholesterol, and insulin resistance .

I have looked carefully at this and from the links you will see that insulin resistance is very prominent in both weight gain, and the inability to lose weight. I have no specific medical confirmation of this but I am also convinced through my own research that to try and reverse this will create a better physiological environment for getting healthy.

How to do this? Alpha Lipoic Acid, that's how....

Among other things it is thought that ALA helps to reduce a person's insulin resistance, and to help with such things as energy production, memory, and general wellness. To that end we have ordered some today, and will give it a try for a couple of months tohether, along with the exercise routine, and see how that helps.

It may just be what we need.

Day 128 - Epiphany

No, not the religious meaning.

In more general terms an epiphany can be thought of as a feeling of "clarity", or to mean acquiring a sudden comprehension, a sudden realisation of truth. CLEO had that today. All our thoughts and especially cleo's over the last few months have led us to an acceptance that she will likely not recover the use of her arm and hand. Indeed I have said as much in this blog several times. We were talking about it this morning, and our thought process went along the lines that you cannot improve something if nothing is there to start with. In the case of her leg, there is movement, and there is some control, and therefore with exercise, and hard work, she knew that there could be an improvement made.

Her hand however, refuses to work voluntarily. The important thing here, is the word voluntarily. The hand does work, but only (at the moment) involuntarily: it clasps into a fist, it relaxes, and it is hypersensitive. There is actually nothing wrong with the mechanical function of the hand. What is not there right now is the control of that, the kick start that is needed to send the message from brain to hand.

Now, cleo spends a lot of time thinking, and this afternoon while trying to have a doze, she did just that. She suddenly realised that she does have something in her hand, and that with hard work and effort she can get control of that again! She said it was like she could see the light at the end of what she thought was a never-ending tunnel.

I think that today cleo turned a corner, and maybe the next stage of her Road to Recovery just began.

Days 124,125,126 and 127 - Looking Forward

Another weekend over, and as I suggested previously, rather than write the same thing over and over about the weekends I have left this entry until Monday evening.

Sometimes we all need to feel some self pity: dealing with unusual situations, or new experiences can be both trying and very difficult. In cleo's case there are times when she asks of herself the question "Why Me?". I don't blame her one bit for that. There is no easy answer, and certainly no simple solution. Our emotions have to take over, and this is what happens of course. We try to be strong, and to show that we can cope, which for a while we can, but there does have to be a safety valve. When that point is reached the pressure that has built up needs to be released.

For no apparent reason this afternoon cleo had a tearful moment. I think that it all became a little too much. The "normality" with which we try to live our lives right now in itself creates pressure, and finally there must be release. I honestly don't know how cleo deals with each day as she does anyway, it must be a terrible strain. She does it wonderfully well, but today it all got too much, and the result is an outpouring of emotion. For my part I try to support and help her as best I can, but it is difficult to know quite what she needs sometimes; to be pushed further, or to be wrapped up in cotton wool. That in itself is a judgement that is not easy.

And then why shouldn't she feel sorry for herself? Of course she should. In five seconds on 21st November her life was turned upside down, and inside out, and each day since then has been a battle to overcome that turmoil, and continues to be. For the most part, as I say, she does wonderfully well, but that focus cannot be applied all the time, and when the effort becomes too much, self pity is the result. Furthermore, I am amazed at how infrequently this has happened, again testament to her incredible mental strength and resilience, and the driving force within her that makes her what she is.

I don't think she shows how frustrated she does get every day, at her inability to do certain things; to her great credit she hides that most of the time.

Melanie came early this morning to continue the manipulation of cleo's arm, and worked on that for an hour or so. She will return tomorrow.

There seem to be two main areas of the physical rehabilitation that need work. Firstly her walking, which cleo can do after a fashion now, albeit in a fairly unstable and uncontrolled way. The answer here as I understand it is practise. The main muscles in her leg are responding, but are weakened, and lack tone. The good thing here is that she can actually make her leg do something so that tells me that by using it, working it, and actually walking with it (as James did several times of late using the treadmill at the rehab gym) she will re-learn the techniques, the rhythm, the balance. Those finer points that are presently not working (toes, dynamic response to imbalance etc) I am convinced will return in time. The time that takes is directly related to the amount of effort applied and I am considering a treadmill for home. When we go to the gym with James, i would rather he worked on the "neuro" stuff that may well create something back in her arm and hand, rather than on a relatively simple exercise regime which can be done without him at home.

Secondly of course her arm and hand, which yet has to show any response, although Melanie feels there may be a little spark in a couple of fingers at certain points during her manipulation exercises. If there is to be a return of anything, i am convinced that the best person to do this will be James, with his expertise and experience. The purchase of a treadmill at home frees james to work on the hand and arm, rather than the walking.

Watch this space.

Yesterday was Mothering Sunday in the UK, and Sarah cooked a lovely pasta meal for us this evening (of course I was at work yesterday so it had to be today) to celebrate.

Because Sarah is out next Friday I have taken that night off of work, and so I don't go back to work till next Saturday. We are both looking forward to a long week together. Cleo and i have discussed this thing today about being at home on her own, and she and i both agree that sooner or later she will have to spend some time at home when i am at work, and Sarah is not here. We cannot possibly expect Sarah to be here every weekend, while i am at work. The girl is 18 next friday and of course when she gets to University next year will no doubt have a social life far busier than she does now. In time we will work through that and i am sure that we (and more especially cleo of course) will overcome that particular hurdle.

Day 123 - A Blonde Moment?

This morning saw the trip to the hairdressers, and the picture on the left is the result. CLEO's hair was beautifully lightened and cut, and I am sure she feels much better as a result. We had one slight wobble beforehand, in that because one effect of her stroke has been to make her slightly less confident than she was before, there was a moment when she really didn't want to go, because she worries about having to deal with people whom she doesn't know well if she is on her own. However, she faced that hurdle like all the others of late, and once that was done she was fine.

It is a common enough response in stroke victims to become confused at things which would normally present no problem, such as sequencing (the placing of a list of tasks or ideas in order, such as the individual actions that make a cup of tea) or speech, reading, writing or number comprehension. Unfamiliar situations or stress can highlight these even more, and lead to very emotional responses. Luckily cleo retains her lucidity and ability to think in an ordered way, albeit slightly slower than before, and with a little less confidence. Others of course are not so lucky. As can be seen from the picture she looks remarkably well considering that she had a major stroke some four months ago.

After we got cleo home from the hairdressers Melanie the physio arrived and spent a good hour working on manipulating cleo's hand and wrist. She is patient and careful, and now that she understands the need to keep cleo's arm, hand and wrist supple she will manage that part of the treatment well, I am sure. She has promised to come every day (until she goes on holiday at the end of next week!) but then we will only have a few days before seeing James again, when I can fill in if needs be. Furthermore she has also made a referral to a different care team, known as "D.A.R.T"., which deals more specifically with stroke and disability problems, and which is a longer term prospect than the home care or "C.A.R.T." team who are provided as a short term rehab facility only. We should be contacted by their own physio, called Emma, next week.

Now we seem to be getting through to the healthcare people we need, and while it has taken some time, I am pleased that we are making that progress through the mire that is the NHS with all its bureaucracy and form filling, which seems in many ways, to needlessly consume the time of those charged with helping the patient.

I have to say I like cleos hair that colour. In the past she has been, at my suggestion, bleached white, but this is more natural, and far more healthy for her hair and scalp. The cut is good too, and she intends growing a little more length into it over the next few months. Results should be good, in my view.

Day 122 - Therapy, Therapy, Therapy

It's quite funny how cleo and I often think the same thing, at almost the same time. This afternoon, after physio at home (more of that later) we were driving to do some shopping, and cleo said to me "Should I walk round the shop?". That was wierd because i had been thinking too that the shop we were going to was not too big, and it might be easier than getting the wheelchair out the car.

So, we arrived at the shop (a large clothes shop to get some clothes for Hannah which we had promised her) and left the wheelchair in the car. By the time we had got up the first aisle, albeit slowly, with cleo holding onto the trolley, and me pushing, we had nearly filled the trolley! We spent well over half an hour in the shop, with cleo on her feet all that time. That has to be the most walking she has done since her stroke. Another major milestone for her in her Road to Recovery, both in terms of the distance walked, and having the courage to do it without the chair. That was a big step.

So what of the physio you're thinking?

Well Melanie turned up at the appointed time with another photocopied sheet from Mohammed ( or was it an intergalactic fax?) with more totally impossible exercises to try. Having convinced Melanie that the answer was simple manipulation of cleos wrist and hand we agreed with her that she will come daily and do that for cleo rather than try to undertake things which physically are impossible for a stroke victim. When asked whether that would be OK with Mohammed she replied "Don't worry about him, I'll tell him what we're doing". Sort of says it all really.

So today we had two kinds of therapy: physio therapy, and retail therapy. Both were good for cleo, especially the shopping, because I know she felt closer to "normal" than she has for a long time while she was walking round the shop with me. After that we had to go food shopping to a supermarket, and I sensed a slight letdown when cleo had to get in the wheelchair for that; Sainsburys is too big for her to walk round, and she was tired by then of course. That will come in time, and I look forward to the day when we might be able to give that bloody wheelchair back, and we can walk round any shop together like we used to!

Castle in the Clouds

You can waste your time building barriers
spend your life trying to break them down again
like an island in a sea that breathes revenge
when we talk sometimes you're a looking glass
every word from the blueprint of your past
in the distance there's a castle in the clouds

And our love will make us strong together
we can be in love forever
just the two of us
when I get lonely, hold me
we will understand each other
you will be my friend and lover
when we're far apart
you're in my heart I'm in your dreams

So you call a friend up for company
drown your tears at a table set for three
there's a shoulder and a change of scenery
but when you wake tomorrow you're back again
and you wonder where it's all going to end
in the distance there's a castle in the clouds

And our love will make us strong together
we can be in love forever
just the two of us
when I get lonely, hold me
we will understand each other
you will be my friend and lover
when we're far apart
you're in my heart
I'm in your dreams

Beverly Craven

Day 121 - Dinner Lady

WELL, wonder of wonders!

Those old aliens have relented! Had a call this morning from Melanie, the home physio. Mohammed has come up with some new exercises, and Melanie is coming tomorrow to start the new physio regime. Quite what that will involve we don't know of course, but I suppose we have to have an open mind.

As well as all that, cleo had her nails done again today, and came away from the nail bar with a set of pale silver tipped pearly nails, with white whispy patterns on them. Tomorrow she is having her hair done again, and her aim is to create highlights that will enhance her natural blonde. I think a picture may be in order once done.

As to daily life, cleo cooked the dinner tonight. I was having a mad spring cleaning day, and so while I was doing that she decided to make dinner. I think that was the first time she has cooked the dinner herself without help since the stroke, so that was a major milestone. It must have been good too, because we all enjoyed it! That is another measure of the strides forward that cleo 's determination has taken her. She could never have done that a month ago, because she would become too tired too quickly, or was less able to use one hand to do things in the kitchen, again this is about adaptability, and being able to use what you have to best effect, which is something which cleo improves on all the time.

I like having my Dinner lady back in the kitchen!

Days 119 & 120 - Relaxing

After the weekend, and some sleep, Monday became a sort of nothing day, but that was to be expected with no physio to go to. CLEO's arm and hand (especially her fingers) were quite stiff, and a little swollen.

I spent a short while manipulating her hand this evening, and then Hannah took over for a while too. We do have to be consistent about doing something every day on the hand and arm, because if we rely on the care team (no call from them today, now there's a surprise!) by April 5th when we next get to see James cleo's hand will be so inflexible it will take weeks to get it back to where it was.

I will massage, and manipulate her hand at least once each day, and with any luck we can maintain the flexibility that is so important.

I am sure that cleo hardly sleeps at weekends when i am at work, although she won't admit it. This evening she has gone to bed and is asleep, peacefully.

Day 117 & 118 - Personal Demons.

We all have to face our own personal demons at certain times in our lives. However illogical or silly those fears may seem when you examine them in the cold light of day, they are very real when there is nobody there to help drive them away.

Of course, weekends for us revolve around me being at work, and the few hours each day when I am at home I am mostly asleep. CLEO seems to be having one of those weekends when the slightest twinge in any part of her body is the onset of some major disaster. As I say, I am sure these demons seem very real when you have to confront them alone, and yet we all must learn to try as best we can, to confront them and push them out of our minds. That is much easier said than done.

I do try to reassure cleo, and talk to her about this but when we are apart it is never so easy. To be able to hold her in my arms, and tell her it's alright is much the best way. Being 75 miles away at work creates a divide that few words can span effectively. I will drive home in the morning, we will have breakfast before I sleep, and all will be fine again. That doesn't help at 3am when we are apart though.

Such is life.

Day 116 - We Don't Do That..

James actually managed to contact Mohammed today (intergalactic communication devices are improving every day!) who, when asked about the possibility of providing manipulation for cleo's arm and hand, rather than simple physiotherapy replied " We don't do manipulation". Seems a little odd to me....

However, Melanie is going to come along next week (quite when we don't know yet) and "try" some manipulation. I think that I will still have to do some of the work myself, and if the care team don't materialise, then so be it!

James can't see cleo now till April 5th, so, it was a hard session on the treadmill today, and even James agrees that her walk is much improved, because she does not twist her pelvis too much now, and weight is being placed more evenly on both legs, rather than predominantly through her unaffected leg. When all the weight goes through one leg it creates stress in the hip joint, and hence pain.

And yet again the weekend looms large.

Day 115 - Trust Me, this won't hurt...much!

They're at it again!

Those aliens have nicked the care team for a second time. The care team seem to have disappeared into outer space again. James doesn't seem to be able to get through to Mohammed, and so we are left with a completely ridiculous situation: two weeks ago we told Mohammed that James was not available for cleo's physio from next Monday, and they have so far not managed to get their act together to put any kind of plans in place.

So, while we were at the hospital today we have offered to do the physio ourselves! james will hopefully show me what is needed and i will do the physio for cleo for the next two weeks. How stupid is that? While I am sure I can do it, I am not a trained physio by any means, but something is better than nothing.

We will see James tomorrow, and then he is away on Friday at a conference, and then short staffed for the next two weeks. Of course I can get him on the phone if I need to ask a question, but frankly, this home care team do not seem to understand how important this is, to cleo or me.

Guaranteed I will be making a few calls next week, because I am not prepared to accept that they cannot sort this out. It's really not that difficult is it? They are supposed to be visiting cleo at home anyway. I think that a few people are going to hear a few home truths from me on this one.

So, I shall be taking charge of cleo's treatment for the next two weeks....
"Trust me, I'm a doctor...this won't hurt.....very much!!"

Day 114 - Love You

CLEO was so tired today. I am not sure quite why, but she seemed totally drained, with no energy. I know that tiredness can be a real factor in recovery from things like stroke, but today she just seemed so "out of sorts", not her usual self.

More and more we are becoming accepting of the reality that her arm and hand may not recover at all, and perhaps the realisation of this was getting her down. I really do not know quite what to do in these situations, because when i see her like this it hurts me so much. You wish there was some magic formula that could make it all go away, and yet you know there isn't. I am sure that tomorrow she will be back to her normal self.

We nearly didn't go to physio this afternoon because cleo felt so unwell, but I couldn't get James on the phone so we went anyway, and this led to some tears when he accidentally hurt her fingers while working on her hand. That too was simply a result of feeling unwell I think.

Today of course was an exception, but what hurts me the most is seeing this wonderful woman, whom i love so much, reduced to a shadow of what she was, and i am powerless to do anything about it, except try and keep her spirits up. I know that cleo will read this and I am directing the last part of this entry specifically to her.

To my dear cleo,

I know it's hard but you have to be strong, you have to fight and fight and keep fighting. You cannot let this beat you, and no matter how tired you get, there will be good times again, and we can share all those things we planned before 21st November last year. I will always be here to do whatever you need me to do, and you must remember that.

I love you more today than yesterday, but not as much as I will tomorrow.

Love you.

Day 113 - Understanding Needs

After work this weekend cleo and I spent some time this morning over breakfast talking about the idea of adaptability vs. improvement. Although each is significantly different in the way that they function, the end result is geared to moving in the same direction: moving towards recovery and away from stroke. It really doesn't matter how we get there, as long as we do.

Physio this afternoon with James saw cleo back on the treadmill, and working hard again to improve her walking. James slightly increased the speed of the walk today, and cleo managed another 10 minutes of (for her) quite hard physical exercise. Remember that she has been pretty inactive since November, so the combination of little activity and the lack of control in her left side muscles makes for a severely weakened body. This of course is one of the factors which contributes to her hitting that wall of tiredness in the evenings, and I am sure it's not unique in stroke victims.

James had also had contact with Mohammed, who was slightly confused after our conversation with Melanie the therapist about his planned exercise routine for cleo, which of course really cannot work till there is movement in her hand, and arm. James is going to get back to him tomorrow and make some suggestions about the right way to go in cleo's therapy at home over the next couple of weeks. James said he will suggest more manipulation rather than exercise, and hopefully the message will get through. The concern that we have is that Mohammed and his team are physiotherapists whose expertise is in dealing with orthopaedic injuries etc, rather than stroke (neurological) damage.

Having said that I, as a non physician, can understand what's needed, so why can't they?
Maybe I should suggest I do the physio myself and claim their wages?

As with any patient/healthcare professional relationship, the art is to understand the needs of the patient. Right now i have doubts that the home care team is capable of that. I can see me having to bang a few heads together this next few days to get the message through. The slightly cynical suggestion i made here about arranging a care team meeting at home might not be quite such a pie-in-the-sky idea after all.

Let's see what happens tomorrow, after James has spoken to Mohammed again.

Days 110, 111, 112 - Weekend Working

Without an adequate net connection (thankfully restored this evening) I have been unable to report here this weekend.

Having said that I am not too sure quite what I would have written anyway as the weekend, like many of late, has merged into one long round of sleep and work.

CLEO continues, in my view, to improve daily. Her ability to adapt is excellent, and I often ask myself whether she is demonstrating improvement or adaptability. Whichever it is she does it well, and the net result is her growing confidence in her ability to tackle things which a month ago she would have thought impossible. As I have said before it's all too easy to sit back and let others do things for you but that is not how to move one's rehabilitation forward, and certainly not cleo's way. She will not take on something that might be dangerous or too tiring, and I don't expect her to, but I do know that if it is at all possible for her to try something new, she will.

Perhaps I will consider not writing a daily entry for the weekends in the future, as I would likely end up writing the same things almost each week, and I certainly don't want to bore my readers.

I will of course continue to write daily through the week, when our focus is much more about cleo's road to recovery and each day brings new events which I feel should be added here. This coming week we should see the new physiotherapy at home in place and we look forward to what that may bring, although we continue to see James at the hospital too.

Out of the Blue

Received an e-mail on Saturday at home from a very close relative of cleo's, who had received an invitation to the handfasting, but with whom cleo had not had much contact over the last few years. Perhaps this whole episode can help to restore those family ties which are so important, but which these days do become more difficult to maintain for all sorts of reasons.

Within that e-mail was the news that a sister of cleos, again with whom she has had little contact for years suffered a stroke just a couple of weeks ago. I hope that we can be in touch and that some kind of mutual support may well help both of them to overcome the obvious problems that each will have. Shared experiences can be very helpful when having to face new challenges and changed circumstances. There are none better than family for making those difficult moments easier

no net connection

Due to there being no internet connection at work this weekend. i shall catch up with the blog once weekend is over:watch this space.

Day 109 - Just Another Day

Just another day, which in itself is good. Today we had no physio to go to, and not much else to do, apart from laze around at home. And that's what we did. The fact that we could do this sort of thing tells me that we are getting closer to normality than we have before. Of course cleo still gets tired, and went for a sleep this afternoon, but, unlike previously she managed to stay up till 10.30pm this evening.

Now that's a first.

When the kids came home from school, I made a roast dinner and we just all did our own thing afterwards, which while very unspectacular and hardly worth reporting, in itself is a major triumph too, because I guess that kind of normality is actually what we aspire to right now.

So, just another day, but one worth noting for its un-noteworthiness!

Day 108 - I Got Rhythm

Try walking along the road, it's all about rhythm. Once you start moving your whole body is working in time, and that includes legs, arms, trunk etc. A walk happens in pairs of steps, of slightly unequal timing because we each favour a particular side (try it) , but in rhythm nonetheless. Left..right/Left..right etc. To march in perfect time is NOT a natural walk.

So if you can establish a rhythm, and feel that, then your walk is better. For cleo, because of the lack of control in her left leg, and arm too, she cannot maintain that rhythm very well yet. Today in physio james put her on the treadmill, at a relatively slow pace of course, in an effor to try and help establish that rhythm which since the stroke is lacking in cleo. Now, consider when you walk; if you feel you are going too fast, you slow down, if you feel tired you can stop for a moment. On the treadmill you are not in charge, and the treadmill keeps going regardless; therefore you have to keep walking.

Ten minutes might not sound very long, but it's the longest that cleo has "walked" since the stroke, and by the end she was struggling, and her hip was hurting (her right hip, because she is presently putting far more weight through her good leg to compensate, although that will improve) and when james turned the treadmill off she said her legs were "like jelly". But she did it! Well done cleo.

Before all that we had the visit from Melanie, the rehab worker, with the exercises suggested by Mohammed (Remember him? kidnapped by aliens, well frankly they ought not to have given him back.) She came with this photocopied sheet that included flexing the wrist (cleo can't even move her wrist voluntarily), grasping hands behind neck and touching elbows at the front (you guessed, cleo can't do that either) and among other impossible tasks for someone with an immobile arm and hand developing the movement to touch each finger on the thumb; this also would be great if cleo could actually move her fingers.

So, now melanie is going to go back to Mohammed who is off again this week till next Monday (does NHS actually stand for National Holiday Service I wonder?) and redefine the exercises. We suggested she contacts James direct who will give her a better idea of the needs of this particular patient. We also told James, and I think he may well be in touch with them himself this week.

If anyone sees any alien spacecraft let me know, I have a care team member available for further experimentation, once he's back from holiday of course!

Day 107 - Bad Day at the Office?

I have to admit that sometimes, not often, just occasionally, it all gets a little too much. Not one thing in particular, just a culmination of all the pressures and stresses under which we all, me, cleo and the girls are living right now. Most of the time if its only cleo, or me, the other will pull them out of it, and it is not too much of a problem.

Today, however, cleo was not feeling too well, and I was feeling stressed myself.

The lot of a carer pales into insignificance compared to the plight of the stroke victim, of course, but sometimes the worry and stress that I feel weighs so heavily: am I doing it right, will i remain well enough to care for cleo, can i provide everything that she and the girls need, and so on. Even the silliest things can sometimes seem so important, like the kitchen is untidy or the carpet needs vacuuming. All these things, just once in a while happen at the same time, and one feels the pressure all together, and that was how it was for me today.

I snapped (verbally) at cleo at dinner time, and went off upstairs in a huff. Of course she got upset, so did the girls, and it is then so difficult to make amends.

Earlier today we got a call from the newly assigned rehab/physio from the intermediate care team, who is coming to see cleo tomorrow. We will keep an open mind and see how that goes.
James' physio this afternoon was gentle in the sense that cleo told him she wasn't feeling so good, and before the physiotherapy he insisted on taking her blood pressure just to be sure that everything was ok, and of course it was.

I suffer from high blood pressure too, and take a daily cocktail of various pills to ensure that mine stays under control, and to that end this evening I have ordered online a home blood pressure monitor which we can use to keep an eye on both of us. Of course this will not make it better, but it might give an early indication of trends that otherwise we might miss, and which will enable a visit to the doctor before what might be a simple thing becomes major.

Day 106 - Aches and pains

This morning James really pushed cleo hard, working on her shoulder and arm. He is pleased that her hand remains flexible, even after the weekend when he has not seen her since Thursday last. He suggests this is a good sign.

He worked on her shoulder mobility, and is keen to promote closure of the "gap" which has opened between the top of the humerus bone and the shoulder joint face. This is a normal thing because in the shoulder the joint is held together by muscle tone, and without that strength in the muscles the weight of the arm pulls the joint apart slightly. If we can achieve that closure then the resulting stability will be better, and it follows that control and movement will be better.

However the work needed is stressful and creates aches and pains. cleo has suffered through the rest of the day with this, but i am sure she understands the reasons for this.

James is also keen to help the lateral movement of the arm (the movement to allow the arm to raise it sideways awayfrom the body) because that will allow dressing and washing to be done more easily. Each of these small goals will build to become bigger steps in cleos Road to Recovery. As always we are realistic, and while we aspire to a complete rehabilitation, it is not necessarily possible that will happen, but the work cleo is doing now will enable some return to "normality" in the look and carriage of the arm, along with perhaps some movement and dexterity at least.

I sense we are starting another chapter here, where the work that cleo does herself becomes far more important, even pivotal to her rehabilitation. There are no quick fixes and as we always knew there will be bad as well as good, but perseverance and a vision of where all this may lead will drive cleo, and with my help too I hope, to achieve the very best that she can from here on.

Day 105 -

Sunday's drive home concluded with a cup of tea made by cleo. She was up and about when I got home and tea was ready.

This week we are looking forward to contact with the physiotherapist from the care team, and two weeks or so to get a routine going before we have the break from James at the hospital. We will also make sure that cleo continues her own exercises at home as provided by James so that there is continued muscle tone in her arm, shoulder, hip and leg. It seems to me that this regime is more and more important as the physio care will eventually fall off, and much of the responsibility for cleo's continued rehabilitation will rest with us rather than the care team or hospital.

James did mention that it is usual for there to be a follow up from the consultant some 6 weeks after discharge, but as yet we have heard nothing. I may have to follow this up in the next few days to ensure that all is well on the clinical side .

Day 104 - It doesn't matter who makes the tea...

CLEO is normally awake early, and so on my way home this morning from work I waited till I was about 10 minutes from home, and sent her a text saying "Tea please, 10 minutes". I guessed that she would be awake and likely up and about.

Wrong!

Arriving through the front door I could hear her in the kitchen, and when I walked into the room there she was all flustered, with only a dressing gown half on, trying to get cups out of the dishwasher. Of course, she had been in bed, and when I sent my text she had to get up, get her dressing gown on , get down the stairs (which can take a few minutes on its own) and get to the kitchen to make the tea.

I have to say it was quite funny to see cleo in a state of semi-undress, all flustered and trying to hurry around the kitchen which is not possible for her as yet. I shall remember to give her more warning next time. I sat her down at the table, and made the tea myself, and we sat in the kitchen and enjoyed that first cuppa together.

It is just so uplifting to see this woman, struggling against her physical problems but so much wanting to do these little things for me, pushing herself for no reason than because I asked her to. It really doesn't matter who makes the tea, as long as we can always drink it together.

This is why I love her so much. Thank you my cleo, for loving me too.

Somebody had the radio on at work, and I heard this song, a real oldie, but a goodie nonetheless:

Loving you
Is easy because you're beautiful
Making love with you
Is all I want to do
Loving you
Is more than just a dream come true
And everything that I do
Is out of loving you

No one else can make me feel
The colours that you bring
Stay with me while we grow old
And we will live each day in spring time

Because loving you
Has made my life so beautiful
And every day of my life
Is filled with loving you
Loving you
I see your soul come shining through
And everytime that we
Oh I'm more in love with you

Day 103 - TGIF.. not likely

WE had the visit from Mohammed this morning , and I have to say that if the promised physio goes as smoothly then there will be few problems. We outlined our hopes, and the concerns we had that cleo would not be seeing james for a couple of weeks at the end of the monbth, and the main goal we had was that the physio provided by the care team (as yet we do not know who the therapist will be) continues to keep muscle tone in cleos hip and shoulder, so that the good work done by James is not lost in the interim.

We explained that we believed there was little the care team could help us with in terms of day to day living, as we seemed to have resolved most of those issues ourselves. Mohammed was happy to accept that, and agreed to concentrate their efforts on the muscle tone issue and would inform the physiotherapist allocated to us that this would be the plan.

I thought it better not to ask what experiments the alien abductors had carried out on the care team which had necessitated a 5 week hiatus in their visiting us at home, fearing I might touch a raw nerve (one left exposed by the alien experimenters even).

So, with no physio scheduled at the hospital by James today it was off to do shopping and then getting ready for work this weekend. Most people think "Thank God It's friday", I am the reverse. My working week starts on friday, so I think "Oh God, It's Friday", but it passes, and it's "Thank God It's Monday" soon enough.

Day 102 - Watch Out, Watch Out, The Care Team's About

CLEO continues to make progress; she can on occasion, when not too tired, actually walk down our stairs. We have as I have said before, made good progress ourselves in all aspects of managing our daily lives, in terms of developing ways to do things which work for us. Luckily we are able to adapt to the needs we (cleo, me and the girls) all have. Many would not be so lucky, in that I am here through the week, and we are pretty good at figuring things out for ourselves.

Now, the care team which is supposed to offer that help has been pretty much invisible since January and frankly we are not too bothered. However, we did get a call from Mohammed, the care team physio this morning (the aliens have obviously decided that he is of no use to them either) and who is coming to see us tomorrow. At the time I was surprised to hear from him and I did wonder why the call had come, but we found out later from James when we went to physio at the hospital.

What I still do not understand is why we get a visit from Mohammed, who will supposedly set the "goals" which cleo wishes to achieve, but it's another person who actually comes and visits to "do" the physio. Why on earth would one person set the framework for something and then communicate that to a third person to carry out? Surely it makes far more sense for the person who is going to carry out the physio to come and set the framework, because that way they can understand better the needs of the patient.

James told us that he will not be able to see cleo for two weeks after the end of March because two members of the in-hospital staff are away and his time will be spent looking after in-patients while those staff are not there. That is understandable, and I think that James has been instrumental in geting the care team to contact us now to try and put physio in place before this break happens.

cleo has become comfortable with James and his methods, and she trusts him to do what is needed, but not to go too far; his judgement is good and he obviously has an expertise that few others have. None of the care team that visit outside the hospital are neurophysiotherapists, and so we will lose the benefit of James' specific input, at least for 2 weeks or so. He has said that he will continue to keep an eye on the management of the neuro side of things and return to physio with us after the staff return, but that we should give the care team a chance to try and help. I do see a note of cynicism in what he says though because he is as surprised as we are that they have not made more effort to get involved.

So the exercises that cleo can do herself now become doubly important, because at the the very least we must maintain her muscle tone and flexibility while we don't see James. Quite what the goals will be we do not know yet; we will have to wait till tomorrow to see how that goes.

I know that cleo harbours a resistance against the care team, simply because such contact we have had tends to focus on the negative side: what you CANNOT do rather than what you CAN. AS I have said, most of the daily things we need to do we have resolved ourselves, and I am not sure what else they can actually help us with.

I guess we won't believe they are actually coming till they ring the front door bell and walk in. Hannah this evening asked me how to spell "hallucination", I wonder if that was some kind of sign?

We will of course give them a chance, and I hope we can get some results with them, but to be honest, to get anywhere near what James does, they are going to have to be very, very good.

I doubt that they are.

Day 101 - Quality of Life.

ome years ago I was tasked with setting up a quality system for a company where I worked. Now, an integral part of that kind of framework is the idea of Continuous Improvement. Based on the premise that whatever you have today (whether it be a process, service, or whatever) it can likely be bettered by examining, rethinking, questioning, and developing what you do and how you do it. In the case of cleo's Road to Recovery there is much happening along the same lines. Each day we look for improvement, even in the smallest things, but which we can set against a measure from yesterday, or last week, or last month. If we can see some kind of change or improvement then we have achieved something.

If we don't see something getting better then we might look at alternative ways to approach whatever it may be.

Two examples have struck me today. Firstly, when James was working with cleo today, he has obviously been thinking carefully about how he can get her to maintain and improve tone in the muscles of her arm, hand, ahoulder, leg and hips. He has tried several different types of exercise and has come up with some new ones today which seem to help her hand and arm especially. These are also things which she can do at home, and which enable him to work more on the improvement side of things rather than the maintaining which has been happening of late. Each day he spends time getting her back to where he left off the day before, meaning that precious time is wasted. Now that cleo has these very specific things to do at home, she can get to physio better prepared.

Second, quality of life is a good measure of progress too. Getting in and out of the bath when she first came home was a definite struggle, especially before we got the electric bath hoist. Now, with that and with her increased strength, and having worked out the best way to get her on and off the seat she can relax in the bath and it is far less stressful for us both to get her in and out. Just like the Quality System idea, we have taken a process, and refined it to suit us, in such a way that we manage it efficiently and safely. Net result of that is that bathtime is easier, and can therefore be undertaken more often, creating a happy cleo. There are many other things that might seem minor on their own but which all add up to continual improvement in cleo's rehabilitation. Getting into the car is another example; three weeks ago i would have to lift her leg into the car once she was on the seat, because she couldn't do that herself. Now, once at the door she can sit in the car, and get her leg inside, and close the door without my help.

All these things and there are many when we think about them, lead me to say that her quality of life improves daily, and her journey along the Road to Recovery is moving at a good pace. A measure of the quality of life is probably that she is less tired, provided she gets enough sleep of course, and that overall she has far fewer emotional troughs compared to say, a month ago.

I have no doubt that we are going in the right direction, and that with James' help and her determination, cleo will continue to improve every day for the forseeable future.

Oh, and the home care team are still being held hostage by aliens.