Days 258 to 272 - "You'll be a Midget, you will"

Since my last entry cleo has settled very well into her regime of treadmill exercises and leg stretches; and on one day recently, for reasons we won't go into here, rather than walk the treadmill for 5 minutes she did 10!

While improvements are less easy to see now, because each day they are so small they are there, and as always suddenly we notice something different that really could be considered a major step forward. This time it was the simple fact of going up the stairs: until now, cleo has always had to step one step at a time, and bring the second foot to the same tread on the stairs. Now she has managed to master the art of walking upstairs like you and I, by stepping past the resting foot and placing the moving foot on the next tread above, and so on.

A big step I am sure you will agree.

Happy Shopper

Of late, since purchasing the scooter (which has been named as "Sally" for some reason only known to cleo) our shopping trips are more frequent and much easier. We can go wherever we like now, and even to the point where this week we were in a large store on one side of a main road, and having exited that store cleo was off, at full throttle across the car park, up a ramp, and across the road via a pelican crossing, and we met again in the car park of another store after I had drove round there myself, thus saving me the trouble of physically lifting the scooter into the car again!

The scooter, being quite small and compact, seems to attract the attention of small children, who seem to think it would be a good "toy" to zoom around on, and no doubt it would be! In Asda this week we were shopping and a young boy, probably about 6 years old, asked cleo if it was fun riding the scooter. She replied that it was, but she was only on it because she couldn't walk. She then suggested that they swap, and she could have his legs, and he might ride round on the scooter: he duly thought about this for some time, and declined, suggesting that if she had his legs she would be a midget!

Ahhh the logic of children: infallible!

Days 253 to 257 - Starting the Regime

Our meeting with James last week proved extremely helpful, and while he agrees that continued physio with him may not be of much benefit, exercises and time will continue to help cleo's rehabilitation.

So, with that in mind we have started out with a regime designed by James which should help to improve cleo's walking, and leg strength, as well as her balance and muscle tone. James is never one to "give up" on anything if there is the remotest chance of recovery so he has added into the plan some exercises for her upper arm and shoulder too, which if nothing else will keep the joint mobile.

He has agreed that he will see cleo every two or three months for a while, to review with us any progress that may have been made. Along with this he can look at how we might change the regime should that be neccessary over time.

For those interested the exercises which we are doing are as follows:

Arm

1. Link hands together, move wrist back wards and forwards, thus flexing the wrist joint.
2. Attempt to straighten the elbow down to the side of the body so the arm is flat against the side
3. Try extending the arm behind you, even to the point of joining hands behind back if you can
4. Twice a week stretch shoulders forward and out to the side several times to maintain joint mobility

Leg

1. Focus on the time spent on each leg while walking (ensure the time on each step is even)
2. Calf stretches: to lengthen the calf muscles, and hold for at least 20 seconds each time.
3. Use treadmill daily, and over time try to increase slowly the walking speed.
4. Try some balancing tasks, like standing on one leg while at the kitchen sink or worktops, to enable the brain to re-learn that fine balance control again
5. Try to maintain a good rhythm while walking, best achieved by swinging the arms as you walk.

We will continue these exercises daily for now, and we shall see James on 5th October next, which will be nearly 11 months since the stroke.

The practice of all these things will, I know, improve cleo's walk. Furthermore, she has to maintain a mental focus, a picture in her mind of where she wants the rehabilitation to go, and never lose sight of that. My job in all of this is to ensure that she does that, by pushing her if I have to, by coaxing, helping and supporting. All those things I do with the knowledge that she will get to where she wants to be.

Of that there is no doubt!

Days 232 to 252 - Catching up

Firstly I must apologise for not adding reports on the Road to Recovery over the last three weeks. This post is prompted for 2 reasons: firstly that I needed to update those who read the blog, because I have been lax of late in adding entries, due to our busy schedule as cleo continues to improve, and secondly because of the anonymous comment left here this morning which of course anyone can read should they wish.

However I would make the comment that while this blog is read by many it is, and always has been a vehicle for those who wish to know how cleo is doing, and to follow the rehabilitation which she is undergoing. Now, while the messages of support since November have been most welcome our appreciation of those has been reiterated many times, and of course will be in the future too. This blog was never designed or written to "drum up" support, but merely as a place to inform. I am at a loss as to the "true colours comment".

I did mention a while ago that we had opted to change the frequency of the posts to weekly and while I have not posted for a couple of weeks this does not mean that i am unaware of those who read and look to this record for news. For that i apologise.

So, lets get you up to date.

Afetr the handfasting James went off and got married, and we have not seen him since then. What we have been doing is managing cleo's rehabilitation ourselves. Using the treadmill we bought, and just daily living her walking is slightly improved, although as before her arm is still not functioning at all.

I spoke at length with James earlier this week, and we are going to see him tomorrow to agree a longer term plan whereby we will continue to manage cleos rehabilitation in this way, and he will review with us on a two- or three-monthly period. James feels this is a good way forward as we move towards a year since the stroke, and the improvements that happen will continue we hope, but aton a much slower pace. James' intervention every two or three months will enable him to see better the improvements cleo has made, and allow us not to be so tied to a weekly schedule of physiotherapy at the hospital when there is little benefit being gained from that.

Another mobility method

We have ordered this week, (it should be delivered tomorrow in fact) an additional aid for cleo: a mobility scooter that will allow her to be mobile anywhere we might go in the car.

This particular design of electric scooter is one which can easily be carried in the boot of a car, and assembled in a few seconds when needed.





cleo is very much looking forward to getting the scooter and not having to rely on others to push her in the wheelchair, or to walk when she might struggle to get to places. This scooter is so small it may even fit in Sarah's car, so Sarah having passed her driving test at the beginning of July might also be able to take her mum out even if i am not around, or at work.

We are also planning to have cleo assessed for her driving again soon, because it's likely she will need some vehicle adaptations to regain her license, and whatever is needed we will add to the new Nissan X-Trail we are getting in September so that cleo can drive that too. Once that's done
there will be no stopping her!

Days 226 to 231 - Finding the Silver Lining

When fighting against any kind of adversity it's often important to try and find some positives. Now, whether these are physical, mental, or simply diversions to distract us they can all help to lessen the burden which we carry.

Of course the heaviest burden in our lives is carried by cleo herself who has to deal with the actual physical and mental effects of her stroke. For those of us who have never experienced this it is impossible to imagine the sheer frustration she must feel, and the difficulties she must overcome in completing even the most simple task.

Throughout all the last several months I have tried to gain positives from all this, and these have been on many levels, for both cleo and me. Helping her to see progress when she does not, reminding her how she was immediately after the stroke, and how she is now, thankful that her mental faculties are unimpaired, the fact that she can walk a little now, and that we are able to enjoy each other's company...and so on.

further to that just getting what is due is often a help: benefits and such, which all make things easier. Of course we would give it all back to have cleo as she was before, but that won't happen so we have to get what we can, what is ours by right. Having said that it's not easy. There is a benefit that we have been trying to get for the girls (carer's allowance) which i cannot get because i earn too much, but which we have spent 5 months jumping through hoops to get, and which has finally happened this week. It's no wonder many people give up before they ever get near any benefit, you have to be totally singleminded and very very persistent. Luckily, I am.

On top of that part of cleo's Disability Living Allowance (DLA) is made up of a mobility component that enables her to get a car through what is known as Motability. Many of these cars simply take the monthly mobility component and provide a car, but of course, us being us, we want something a little bigger, so.. with the addition of a deposit we have ordered a new Nissan X-Trail which should be delivered on 4th September.

Why not we said? Too right.

Days 218 to 225 - Doing the Legwork

While James is on honeymoon (he got married last weekend)it's important that cleo continues to work on her walking, and the treadmill which we bought has come into it's own this last week. Cleo is working almost daily on it, and I am convinced that her walk is improving as a result. While sahe walks in the very controlled way that the treadmill creates it enables her to focus on the rhythm of her walk, making sure that the affected foot stays in contact with the ground for as long as the other.

Even after just a few days, this evening when she walked for 5 minutes with the treadmill I am convinced that her walk is more controlled, and her foot looks more flexible, and better able to help her balance. Of course it's not perfect by any means but I am convinced it is dramatically improved.

It is no use expecting 3 sessions of physio each week for 45 minutes to create the improvement that we want; cleo must work, and work hard every day. To her credit she is doing that, and we all must support her in that, even to the point of pushing her harder sometimes than she might like (within reason of course) to attain those results.

We have dealt with some big changes in our lives this last few months, both cleo and I, and the girls of course. None more so that our marriage, and the handfasting of course.There are other more personal things too, which need not be detailed here, but which mean as much to cleo and i, and the way we live our lives, and how we approach each day, which give us added impetus and the combined strength to face whatever life might throw at us.

We are a team, and there is nothing we cannot do.

Days 211 to 217 - Back to Normal: A New Chapter

The last week has seen us back to the normality of daily life, and while that must all go on, we have also decided to begin a slightly new chapter in cleo's rehabilitation. James cannot be cleo's physotherapist for the rest of her life and so we have to be even more pro-active regarding her continued recovery. Perhaps in the future a six-monthly review with James will be more sensible but rehabilitation must come predominantly from cleo (with support from me and the girls of course).

So we are going to set out on a very pro-active daily regime for cleo, based on a few simple exercises that James sees as important: calf stretching, the rhythm of her walking (keeping the affected foot on the ground for the same length of time as the unaffected) and hip and shoulder control to ensure symmetry in the walk.

This will start tomorrow. Of course we continue to see James for now, although he is getting married on Saturday, and away on honeymoon till the middle of July, so our starting out on the new regime is a good moment as we won't see him for 3 weeks or so. Hopefully he will see some improvements after his holiday.

What I shall do from now is write in the blog here weekly rather than every day. This will reduce the need to write the same thing again and again each day.

Days 204 to 210 - Handfasting

Wow! what a day!

Our week prior to the 21st was filled with last minute preparations and organising for the handfasting. While there was also the usual mundane stuff like work, kids at school (including Sarah doing her A-level examinations) there were also lots of little things that were needed to make the handfasting go smoothly.

Knowing that we would have little time this week, James pushed cleo very hard at the end of last week in her physio, getting her doing walking and various other exercises for long periods. I am sure this stood her in good stead for yesterday.

Last monday was a big day: our friends Lisa and Fred from America were flying in and I was off to Heathrow to collect them.

The time passed quickly and before we knew it, we were at the grange and the moment is upon us , months of planning,what a beautiful ceremony it turned out to be, with many friends in attendance and all the plans falling into place. I think everyone had an enjoyable day.It certainly was something very different.

(this from cleo)

Everyone said the ceremony was very much "us" and i (Jen) have to agree because the whole handfasting event was very much me and is a day i shall always remember with a passion more so even than my legal wedding day.

The 21st June is now an additional day we shall celebrate each year along with 14th Febuary and 17th January as well as our birthdays... although i might just start taking the numbers off my age from now!!!

Days 199 to 203 - Same Old, Same Old, But Not!

While we haven't blogged quite as much lately because I guess we don't want to bore you all with the "same old same old", as it were, something of note happened this week, which is more than worth reporting here.

I have spoken before about how the progress of recovery is measured in many ways, and often the most important of those things can be missed amongst the whole flood of little things that happen. Well, today cleo and I went shopping. Now, we like shopping, and we ended up in a clothes shop where we bought some shoes. Prior to the stroke, shoes were a major passion for cleo and she would never go out without heels on, and high ones at that. Since the stroke she struggles to even walk and of course shoes with any kind of heel are a complete "no-no".

For the handfasting ceremony next week she has found a half sensible pair of shoes (albeit flat) that she can wear, and which she can get both feet into comfortably. One of the consequences of the stroke, and the subsequent inactivity, as well as the very hot weather we are having right now is that her left foot becomes swollen. This creates a problem getting her foot into any kind of "sensible" shoe. However we found these ones, and a second pair that even had a slight heel, which she has also managed to get on this evening. Now it was a struggle, but I have to say it was wonderful to see her stand with a shoe that even had the slightest heel on it. I don't think she will manage those for the handfasting but the fact that she has worn them can only be regarded as a great leap forward: it shows that with determination anything is possible and I know that she will again wear the kind of shoes she loves however long it takes.

Every day cleo is frustrated by a whole load of things that she cannot do, and yet most of the time she fights her way through them, and keeps smiling too! I have to say I am so proud of her for that, and for the way she continues to overcome obstacles each day that most people would find insurmountable.

For us, the "same old same old" is not like that at all, because each day is a triumph of courage over adversity, and becomes a measure of the progress that cleo makes along her personal road to recovery.

Good girl.

Days 190 to 198 - Run Rabbit Run

WE have not managed to post for a week, due to all kinds of reasons, but mainly that after the weekend our router at home failed and we had to wait to get a replacement. That in itself is a story, and for those of you who have had any dealings with BT (British Telecommunications) in the UK you will know just how frustrating that has been. Most of the time I have spent on the phone (several hours in total earlier this week) has been to some call centre in India, who have no idea about urgency, but then robots rarely do, do they? However, robots (in the good old Isaac Asimov ideals), don’t lie either, but these ones see no problem with that: “tell him whatever he wants to hear, and get him off the line” whether it’s true or not. Did you know that one of the world's largest telecommunications companies doesn't have any phone numbers that the public can contact them on save those damned call centre numbers? At least that's what I have been told! By a call centre robot of course.

Startled Rabbit's Gone

There is a marked improvement in cleo this week, in terms of her mental state. Suddenly she is beginning to think like the cleo before the stroke: by that I mean she is planning, not single things, but the multitude of stuff that a housewife does, knowing that certain shopping needs to be done, what laundry is clean or dirty, what ironing is required. Of course she still cannot physically undertake all these tasks, but the fact that she is beginning to get that “mental agenda” back is good news.

We were talking about that only today, and I remarked that after the stroke (and I have probably mentioned this before) cleo was very much like a startled rabbit, caught in bright headlights; frozen, unable to move or think clearly. That has, for the most part gone. She is far less (mentally) fragile now and that augurs well for the future. Hopefully the rabbit has been galvanised into action and hopped across the road out of the headlights, back to a more sane, safe and secure environment.

Of course we only have just under 2 weeks now till the handfasting, and mostly things seem to be well under control there. The venue is all paid for, cleo's new dress is in transit from the makers, the plans for the actual ceremony are near complete, and the finishing touches are presently being worked on. I am sure it will be a wonderful day, and we are looking forward to it very much.

Progress in Recovery

We move in fits and starts, one day with high hopes of good recovery, and others with less optimism, but overall cleo’s progress is remarkable. We now have to begin the building of the future, with as normal an outlook as we can.

James had to cancel physiotherapy this week as there is an infection within a couple of the wards which he visits. The Norovirus infection is one which while not fatal causes extremely unpleasant effects including upset stomach and vomiting, hence it’s name: “winter vomiting virus”. We are not seeing James till next week and hopefully by then the effects in the hospital will have died down a little.

Days 186 to 189 - Look Out Schumacher!

CLEO had spoken previously about getting a small electric scooter to help with shopping (as mentioned in the blog here a couple of weeks ago). Well, today we went to a different shop to get some groceries and this particular shop has them for the use of disabled customers. We duly acquired one and it placed a whole new slant on shopping.

The one thing cleo dislikes about being in the wheelchair is that she can only go where someone pushes her, and can't wander off to look at something that might catch her eye at a moment's notice. In a self propelled scooter this is totally different: complete independence!

We were going round the shop, and i kept looking round to find she had gone off, looking at stuff, all on her own. For cleo I know it was a completely different experience, and one which made her feel very much more independent. This afternoon has definitely made our minds up that we will get one of these scooters after the handfasting, and I am sure it will be money well spent.

Asda on the other hand are still cleaning the tyre tracks of the aisles in their store, and installing armco crash barriers on all the corners, for next time.

Physio continues: James was working on cleos arm response today, in an effort to try and help with control of the muscles that cause the arm and hand to close up. It's really about time and concentration. I am sure that will happen.

He has also suggested we continue use of the treadmill at home, in particular to get better rhythm in cleo's walk. Allied to that walking in a "controlled" environment will enable her to concentrate on the way her heel lifts and is placed at the start and beginning of each step.

It's All Coming Back To Me Now....

There were nights when the wind was so cold
That my body froze in bed
If I just listened to it
Right outside the window

There were days when the sun was so cruel
That all the tears turned to dust
And I just knew my eyes were
Drying up forever

I finished crying in the instant that you left
And I can't remember where or when or how
And I banished every memory you and I had ever made

But when you touch me like this
And you hold me like that
I just have to admit
That it's all coming back to me
When I touch you like this
And I hold you like that
It's so hard to believe but
It's all coming back to me
(It's all coming back, it's all coming back to me now)

There were moments of gold
And there were flashes of light
There were things I'd never do again
But then they'd always seemed right
There were nights of endless pleasure
It was more than any laws allow
Baby Baby

If I kiss you like this
And if you whisper like that
It was lost long ago
But it's all coming back to me
If you want me like this
And if you need me like that
It was dead long ago
But it's all coming back to me
It's so hard to resist
And it's all coming back to me
I can barely recall
But it's all coming back to me now
But it's all coming back

There were those empty threats and hollow lies
And whenever you tried to hurt me
I just hurt you even worse
And so much deeper

There were hours that just went on for days
When alone at last we'd count up all the chances
That were lost to us forever

But you were history with the slamming of the door
And I made myself so strong again somehow
And I never wasted any of my time on you since then

But if I touch you like this
And if you kiss me like that
It was so long ago
But it's all coming back to me
If you touch me like this
And if I kiss you like that
It was gone with the wind
But it's all coming back to me
(It's all coming back, it's all coming back to me now)

There were moments of gold
And there were flashes of light
There were things we'd never do again
But then they'd always seemed right
There were nights of endless pleasure
It was more than all your laws allow
Baby, Baby, Baby

When you touch me like this
And when you hold me like that
It was gone with the wind
But it's all coming back to me
When you see me like this
And when I see you like that
Then we see what we want to see
All coming back to me
The flesh and the fantasies
All coming back to me
I can barely recall
But it's all coming back to me now

If you forgive me all this
If I forgive you all that
We forgive and forget
And it's all coming back to me
When you see me like this
And when I see you like that
We see just what we want to see
Al coming back to me
The flesh and the fantasies
All coming back to me
I can barely recall but it's all coming back to me now

(It's all coming back to me now)
And when you kiss me like this
(It's all coming back to me now)
And when I touch you like that
(It's all coming back to me now)
If you do it like this
(It's all coming back to me now)
And if we...

as sung by Celine Dion

Additional: Silver Lining

In light of cleo's post, I thought i would add some lyrics, which I have not done for a while....

Silver lining

You're everywhere and no-where baby,
That's where you're at,
Going down a bumpy hillside,
In your hippy hat.
Flying across the country,
And getting fat,
Saying everything is groovy,
When your tyres are flat,
And it's
(Chorus)
Hi-ho silver lining,
Anywhere you go now baby,
I see your sun is shining,
But I wont make a fuss,
Though its obvious.

Flasher in your pea soup baby,
They're waving at me,
Anything you want is yours now,
Only nothings for free,
Lies are going to get you someday,
Just wait and see.
Open up your beach umbrella,
While you're watching tv,
And it's
(Chorus)
Hi-ho silver lining,
Anywhere you go now baby,
I see your sun is shining,
But I wont make a fuss,
Though its obvious.

Hi-ho silver lining,
Anywhere you go now baby,
I see your sun is shining,
But I wont make a fuss,
Though its obvious.
Hi-ho silver lining,
Anywhere you go now baby,
I see your sun is shining,
But I wont make a fuss,
Though its obvious.

Days 171 to 174 - Gaining Confidence

Sometimes the biggest steps that are taken along the Road to Recovery go almost unnoticed. You don't realise that such progress has been made until it has actually happened. This last couple of days have been a little like that, for two reasons.

Naturally the weekend when I am at work every night doesn't leave us much time to be together but that does afford cleo some time to be with the girls when i am not, which is good for them.

While I am at work we tend to keep in touch via text messaging, although i will somethimes call home as well. Among the many swapped texts over the weekend i got one that said: "managed to do some knitting". Now that may not sound much but in the whole scheme of things right now this has to be a major step forward. While cleo has not gained any dexterity in her hand and fingers she seems a little more capable of controlling the up to now involuntary muscle tone to at least enable her to hold a knitting needle. Now getting that control is obviously a major step, and says much for the work that James has done these past few weeks, as well as the determination to improve that is so embodied within cleo's psyche.

We had to get some repeat prescriptions and a blood test for cleo so i made an appointment at the doctors today; that in itself was nothing out of the ordinary, but on the way back I pulled off the road into a private car park and asked cleo if she wanted to try driving the car, something she had not done since the stroke. We swapped places and although she was a little nervous at first she soon found that she could drive as well as before, although for driving on the roads we may have to have a couple adaptations fitted to aid use of the handbrake, and steering wheel.

We are going to get a new car this summer, a Nissan X-Trail we think, and we shall be ordering that afirly soon. The adaptations we need will be worked out at that time. We of course also have to inform the DVLA and the insurance companies about cleo's stroke before she can actually drive legally on the public highway, which if course we shall do as well.

The fact that cleo has the confidence to get back behind the wheel again also shows the progress she is making, and once we have the new car and it is properly adapted there is no reason why she will not drive again.

Days 169 & 170 Therapy, Therapy, Therapy

There are many kinds of therapy involved in the rehabilitation of patients from stroke: there is occupational therapy, physiotherapy, speech therapy, language therapy and many others provided by the healthcare professionals. All these have a greater or lesser effect on the recovery from the stroke depending on the person involved and the severity and kind of stroke which occurred.

In cleo's case there are other kinds of therapy too; the most significant of those being retail therapy. We love shopping. Today we organised a trip to a shopping centre to meet our friend Alan, and we spent an exhausting but enjoyable day going from shop to shop getting some things we needed for the handfasting in June, including my suit and various other bits and pieces. Now, of course, Alan is in a wheelchair, and so is cleo, so there we were, 3 of us, 2 chairs, and me pushing cleo. It is a measure of how we (cleo and I) have adapted to the problems inherent with wheelchairs and shopping trips that we still manage to get things done. Alan of course is used to it all and just takes it all in his stride (or his wheels I guess).

The final therapy for the day might be termed a kind of "shock therapy". Driving up the motorway to Essex to meet Alan we pass some major electricity distribution plants and the overhead cables always seem to affect the car radio. Now I drive this route to work and so am used to the extremely loud and sudden crackle that this causes on the car stereo, but cleo is not.

Several times on the journey both ways we passed under one of these cables and the radio suddenly emits a massive crackle of static which if you don't know it's coming is enough to make you jump. The first time cleo nearly left the seat, and two or three more times she actually winced as the noise of the static jumped out of the car speakers. Some form of electro-stimulation therapy that was !

Still all that said, we had a good day, and although tiring it was well worth it.

Prior to that we had physio this morning with James and he is still working on cleo's arm. I am convinced that he sees potential for improvement or he would not continue down this route. These things all take time, although I have to say that in the timescale of stroke rehabilitation which can often take years, cleo has made remarkable progress this last 5 and a half months, and I see no reason why that should not continue.

We also had an e-mail from the Different Strokes website who have seen this blog. They asked us to write a synopsis of the Road to Recovery for their survivors section and to include a link to this site. I shall write that in the next few days and submit it to them as soon as possible.

Fame at Last!.

Days 164, 165 & 166 - Life Goes On

We have been busy this last few days sorting some arrangements for the handfasting in june, as well as sorting monthly bills and all that horrible stuff that goes on regardless.

Cleo and I talked at some length about the way forward and the fact that we are becoming more "comfortable" with her inability to do certain things. Nothing is insurmountable and the simplest of achievements promotes huge smiles: like getting a cup of tea up and down stairs. Because she is till relatively unsteady on her feet cleo has been unable to get a cup of tea up the stairs unless it was made in a flask, but this week she suddenly discovered that by moving the cup one step at a time as she goes up each stair she can actually do this. Coming down is the same and once at the bottom of the stairs on the "flat" she can manage to carry the tea without spilling it. We take comfort in the fact that she is still alive, and her mental ability is unimpaired save the odd emotional glitch. We are still a family and life has returned to a normaility not unlike that which we had before 21st November. Of course some things are different and they probably always will be, but overall I believe we have adjusted well to the changes forced upon us all.

James too, in physio, has remarked about cleo's overall progress and is pleased with the results. He told us this week that when she left hospital she was beginning to develop what is known as "high muscle tone" in her arm. High tone is caused by a shortening of the muscle groups, effectively causing the arm and hand to appear "clawlike" as is the case with many stroke sufferers. Recently cleo has managed to overcome much of that, and while her arm is not functioning well yet it is far more relaxed than it was and the result of the relaxation is the arm looks far more "normal" than was the case two months ago.

James also told us that he has agreed with the CART team (remember them, abducted by aliens and all that?) that cleo should be discharged from their care (such as it was) and that he will continue to see her over the next few months. Once the time is right he will then refer her to Emma from the DART team again and as he supervises Emma hinself in the long term he can oversee the management of her rehabilitation.

For us this is probably the best thing. James is by far the most effective healthcare professional we have met since the stroke, and his enthusiasm, knowledge, experience and attitude has promoted much of the recovery that cleo has made. I would like to take this opportunity to personally thank james for all his hard work because without him we wouldn't be where we are right now.

Days 158, 159 - Family Life

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.

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.

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.

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.

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!

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.

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.

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.

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.

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.

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.

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"

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.

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.

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.

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!

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