Time to write again!!!

I was moved to read some of this blog myself today: I will explain why in a moment, but as a result, i think it may be time for some more entries.

First, an update on cleo. She is fine! not much has changed in her physical capabilities since i last blogged, but she continues to adapt well to the very physical limitations her paralysis has placed on her. She moves well enough, albeit a little unsteady at times. The arm remains completely dead, and as such i think we are resigned to the fact, as before, that it will never work again!

So, to get this up to date...here goes.

F.E.S. (Functional electrical stimulation)

Way back last year sometime, James suggested cleo would be a good subject for a treatment called Functional Electrical Stimulation. FES is a way to help the muscles in the leg to work, using electrical stimulation, provided through a small box of tricks worn by the patient, and controlled by a footswitch that fits in the heel of the shoe. In essence what FES does is enable the foot to be elctrically stimulated to create both eversion and dorsiflexion (outward and upward movement of the foot from the ankle as you walk, stopping the foot from dragging on the floor).

So, James did the referral and after a short time (several weeks) the local PCT approved the funding and we were referred to the National FES Centre at Salisbury in Wiltshire for an intial consultation.

Now it's 180 odd miles from us to Salisbury but if it helps cleo's walking its worth it, of course. So, off we toddle to Salisbury, and after a meeting with one of their clinicians, the go ahead was given.

This meant a further 2 day trip to Salisbury to get the first fitting and set up of the FES for cleo, and she now has her FES unit. At first it was very frustrating as the whole thing depends upon exact placing of electrodes on the leg and we spent much time struggling to find the right positioning, so that we achieved the correct foor movement as cleo walked. A few months on now and we have found that we are much better at getting the thing to work, and above all it creates a much more stable foot placement for cleo when she walks. She doesn't walk much faster than before, but what she does have is much more confidence, knowing that her foot will land flat and stable, thus avoiding the possibility of her ankle giving way by rolling over, and the actual effort involved in the walking is far less, enabling her to go further, and with more confidence in her ability to do so.

Having had the initial fitting of the FES and last week returned to Salisbury for the 3 month review they are very happy with how cleo is doing with it, and we return there in 6 months for a further check on progress.

Finger pointing....

As I have often said in here, cleo does have those "Why Me?" days. Although far less now than at the beginning I think they are a fact of life that we (and certainly cleo) has to deal with.

Now a few months ago, cleo had cause to go to the doctor about something entirely separate from the stroke. She went on her own, because of course she drives now, and she likes to be as independent as possible. So, arriving at the surgery she was seen by her own GP (rather an unusual event these days as its very much pot luck there as to who you are seen by) who, on her entrance into the consulting room remarked something along the lines: " I suppose the blame for how you are now lies squarely on my shoulders..."

Needless to say cleo was dumbfounded by this statement. When she got home she told me, and we both immediately thought the same thing: negligence, compensation, solicitors, complaint....and so on. Having said that we thought it, neither of us voiced that thought immediately but it kep nagging away at me that day and the next, until I decided to discuss it with cleo. Surprise surprise she had been having the same thoughts!

So we started to research a little. The first step of any formal claim etc is to make a complaint in writing to the GP direct, and so, over the next couple of days we drafted a letter of complaint outlining our belief that cleo may well have been given less than adequate treatment/health management, the result of which may well have been the stroke. Several letters followed as well as a meeting with the practice manager and GP, culminating in less than convincing answers.

We then decided to pursue the matter further, and have consulted a solicitor who specialises in clinical negligence. Today we met the solicitor for the first time and she feels there is very possibly a case to answer. Now in English law these matters are time limited in that once an event (or knowledge) occurs you effectively have 3 years to start the process of a claim. cleo hadd her stroke on November 21st 2005, so we have little time to get our proceedings issued(less than 3 months) but we are going to go ahead with it, and lets see where we go from here!

Having met our solicitor today I have high hopes that we have found the right person to help us and that ultimately something will come from this, although we do not expect it to be quick or easy: still, who said we can't deal with tough situations?

Moving ever onwards.....January 2008

cleo continues to progress, albeit slowly, but I have decided to start writing this blog again as there are a number of developments that should be recorded and reported as part of this diary.

Firstly: cleo is driving again. We applied some time ago for her driving licence to be reinstated, and after filling out the DVLA forms and jumping through various medical hoops we received her new licence. It was given with the proviso that she only drive a car which had been suitably modified to enable one-handed control.

We found a local company which fit hand controls and ordered the modifications. These don't come cheap: around £1000 but having been fitted our X-Trail can now be driven by cleo.

March 4th 2007

Just by way of an update for the anonymous comment received yesterday about cleo's progress.

You are probably right, in that we continue to live life. We are looking forward to our next review with james in just over a month's time, and hopefully he will see improvements in cleo since last time.

To help her on the way, we have just bought a new piece of equipment that we hope will aid her walk by strengthening the leg muscles, specifically those involved in lateral control of the leg and foot: the Lateral Thigh Trainer




The trainer is designed to work as you walk and not only moves up and down but side to side at the same time. Cleo is hopeful that it will help her overall fitness too, as it looks like something she can use safely even when nobody is around, unlike the treadmill, where someone has to be there to help: this may well prove to be a means to several ends.

16 months since the stroke and because she does not do very much now, as a result of her physical challenges, cleo has put on a bit of weight, and she is trying to find ways to get that weight off. Dieting is all very well, but exercise is essential too.

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.