Time to replace the brain flap

I phoned the neurosurgeon, who seemed pleased when I told him Jo had some controlled movement in her left leg, saying their scans showed no brain damage and so they were confident Jo would regain the use of the left leg. He agreed it was time to replace the brain flap and confirmed that headaches are often caused by the lack of a brain flap. There also seems to be some consensus that the visual appearance has a negative psychological effect.

Pedal machine

Jo did a ten minute session with the pedal machine. At first her left leg was leaning to the right and there was no discernible muscle movement. After three minutes I could feel faint muscle movement at the knee and this continued to increase as Jo pedalled.

Left leg continues to improve

The left leg is much better today. It was crooked in pain at the knee the morning but improved during the day

An interesting neglect incident

Jo had an interesting neglect moment today. I had moved a vase of yellow roses from the right of the room to the left, replacing them with a posey of white roses. Jo asked where the yellow roses were. When I said they were on her left she turned and looked at them, a scenario I have become familiar with. A moment later Jo referred to them as yellow tulips, demonstrating that she had retained them in her mental image of the room, albeit imperfectly.

Sheer determination

Her left leg was crooked with pain again, perhaps because she has had a series of long days. Certainly she was tired, sleeping after breakfast, although she roused herself and made her face up for lunch at our neighbours. Every day I see Jo struggling to return to normality. That struggle is tiring and the progress achingly slow but her determination, her "bloodymindedness", will see her through.

Merry Xmas

Jo awoke with cramp-like pain in her left leg. She appeared to have moved around a lot during the night, to the right of the bed, and her left leg keeps putting itself in a crooked position. I have given her the morning dose of Gabapentin and Paracetamol. We had a very good Xmas day, with Jo and I cooking lunch together. Our neighbours called over during this and observed Jo's left leg moving. It has been alternately painful and itching today, hopefully a sign that something is waking up. Once she raised her left leg off the footstool and lowered the foot to the floor, holding it against gravity rather than just letting it fall

Setting goals

The physiotherapists came round to set up Jo's program for the care assistants and devise an exercise regime. They want Jo to do transfers in and out of bed from the chair, using the rotunda for all other transfers. This is to build up strength and mobility in the buttocks and torso as well as encouraging Jo to push herself up to a standing position as opposed to pulling, which is the action the rotunda reinforces.

We agreed immediate goals of Jo being able to sit herself up in bed and moving her legs off the bed to a position sitting on the edge of the bed, both necessary precursors to the third goal, transferring herself from the bed to the chair or commode.

Blood, sweat and tears

Jo got up at 09:30 as we thought she had to go to CICC for her official discharge. As it transpired her presence wasn't necessary, which would have saved me a lot of blood, sweat and tears. Especially sweat, as the humidity was 95% here today and I could have done without the exertion of the two transfers on top of washing and dressing.

There seemed no respite either, as upon our return Jo needed to be put on the commode to urinate. Immediately after urinating Jo began a bowel movement. Why can't she tell she is going to do this beforehand so I can place the commode over the toilet? She had soiled her knickers so I had to put her on the bed to clean her up and change her clothes. During this the left leg was very active, actually pushing against me at several points, although once again Jo professed to be unaware of this.

Winter solstice

Jo got up at 10:00 after a good Sunday morning with breakfast in bed. Although the Kylie absorbed a lot, the bed linen and Jo's nightdress were wet. Maybe the new female urinal will be better or perhaps the collaborative care assistants can advise on how to better use them, but some improvements definitely need to be made. Or perhaps this will act as an incentive for Jo to become more mobile?

We went to Waitrose to do some shopping. Prior to this Jo did ten minutes of pedalling on the machine. Although I didn't notice any movement in the left leg the transfers seemed to go smoother, albeit not without the usual protests of “I can't do this!” from Jo. She is increasingly getting left and right confused and lifting the right buttock when I ask her to lift the left. She can lift the left one, although she will protest that she can't. I need to work through this one as obviously the left and right are fighting for dominance when they should be working together.

Today marked the Winter solstice, this was coincidentally the shortest day of the year, the point at which the I Ching forecast for the next phase of Jo's recovery.

Getting in and out of the car

Jo got up at 08:30. I don't know who got her up but they did an appalling job, her trousers and knickers were all twisted and halfway down her bum and the arms on the wheelchair were on the wrong sides. The former made transfer in and out of the car more difficult and the latter made folding the wheelchair nigh on impossible. Despite the difficulties with her attire the transfers were not too bad and both getting in and alighting, Jo's left leg made definite moves to position itself when getting into and out of the car, lifting against gravity both times. There wasn't enough power there to lift it far enough and Jo professed to be unaware of the effort but the willing was certainly there.

A good physiotherapy session

Like me, Jo had a bit of a lie-in this morning, getting up at 09:00. I arrived at 13:00 and we proceeded to get the pedal machine set up so Jo could do some pre-physiotherapy exercise. Jo did wonderfully, pedalling for 30 minutes and I could see and feel that the left leg was actually doing some of the work. Jo could feel it to; it did not feel that the leg was being dragged around to her.

This fed well into the physiotherapy session and Jo managed four excellent steps where she was stepping off with the right foot and transferring to her left leg wonderfully. The steps where she raised the left leg, transferring to the right leg, were a little more hesitant and still required the physiotherapist to assist her but, at the end of each stride with the right leg; Jo raised her left leg at the heel in preparation for the next stride. The physiotherapist said that Jo would progress “in leaps and bounds” once she was home and I can see that, based on today's performance.

We met the neurological physiotherapist who will be looking after Jo for the next six weeks. She seemed very good and aided Jo most ably when she took her steps. We discussed physiotherapy at home in terms of equipment. It may be that some sessions are conducted at the hospital to use the walking machine.

Small steps

Jo did fifteen minutes on the pedal machine before physiotherapy. The pedal machine was very good, encouraging movement in the left leg. As the physiotherapist had said, a session with the machine prior to physiotherapy fed positively into the latter, with Jo performing several good stands, pushing the left leg back and transferring weight on to it with increasing ease. Jo managed four steps, still with assistance but with increasing confidence.

Conscious versus unconscious action

There is definitely more moment in the left leg and it seems to be that, if Jo doesn't think about it, everything flows quite smoothly. Once you draw her attention to the fact of any movement, everything becomes more difficult.

Butterfly dreaming

Jo did have some neuropathic pain this evening, although she may have forgotten to take her evening Gabapentin, which she is self-administering from her lunchtime dose. Despite this she was able to raise her torso enough to pull her own trousers down. She is generally getting better at moving herself about, which is partly due to her attitude but also to an increase in awareness and corresponding ability of her left side.

I read an interesting article by Dr Masud Husain, from the Institute of Cognitive Neuroscience, University College, London, in which he says, "A key question is whether conscious intentions are an immediate consequence of preparation for action, or a retrospective mental justification to explain actions we have just made." Cogito ergo sum. Am I a person dreaming of a being a butterfly, or a butterfly dreaming of being a person?

Some elevation

Jo's left leg had been a little stiff this weekend so I suggested Jo should really do the exercise the physiotherapist had suggested, putting her right foot behind the left one and lifting it five times every hour. Jo did this a couple of times and the difference was palpable, with her left leg being much more pliant and responsive when performing transfers. During the last rotunda transfer we executed, placing Jo in the wheelchair to go back to CICC, her left leg actually lifted itself high enough to allow the rotunda to be pulled away without dragging the left foot. I appreciate that is only a matter of a few centimetres but it is a big difference.

Another home visit

Jo got up at 08:30 and I picked her up at 11:00 for our first overnight stay in preparation for her discharge on the 22nd of December.

Despite the inclement weather we managed the transfer in and out of the car without incident. Once at home Jo managed to find the letters to the left of the keyboard reasonably well when inputting her password on the computer and played solitaire for a couple of hours until lunch, which must be good brain therapy.

After a sumptuous lunch of various oriental delicacies she slept in her armchair. I placed her left arm on the armrest, propped up with a pillow to stop it falling off onto her lap. This proved efficacious and that position should help to support that shoulder, which is only now showing signs of dropping out of its socket, something they mentioned at Addenbrookes. The physiotherapist has ordered a support for this as, once Jo starts walking; the strain will increase until the arm regains muscle power.

I placed Jo's legs on the leather footstool, which afforded more support than the pouffe. While Jo slept I observed her drawing up her left leg at the knee several times.

When Jo woke up at 17:00 she performed one of those involuntary stretches we all do upon waking. Her left arm stretched in concert with the right, lifting it against gravity. Then, as I was helping her on to the rotunda, she pulled the left arm back with distinct force.

Jo’s first unaided stand

I missed the physiotherapy session today as I was waiting at home for the bed elevator. By Jo's account it was very good with Jo managing a stand from the bed unaided, pushing herself up from the bed with her right hand, using the back of the commode to maintain her balance once she was upright.

Preparations for coming home

We had a good meeting today, where we agreed with everyone involved that the goal was to get Jo home for Christmas. The actions points were:

1. To get a working female urinal so Jo can use that at night and empty it into a commode.
2. To get the care team to take over looking after Jo four times a day once she is home, this would be;
• Breakfast (Getting up, washing and dressing)
• Lunch
• Afternoon
• Evening (Going to bed)
3. To see if we can get a bed aerator to help Jo sit up and get in and out of bed. This may not be possible with NHS assistance using the sofa bed and I may have to purchase a divan bed base. However there are inflatable products which are cheaper or the same price as a bed base and I may have to purchase one of those.
4. To see about a transfer chair for bathing. Once again this may not be possible with NHS assistance as we have a corner bath. However, I don't see why a sliding seat that sits with two legs in the bath and two out is not possible or available. We will engage with the Stroke Support team on this.
5. To liaise with the above team on physiotherapy sessions. We should get more physiotherapy once Jo is home. Apparently we have 6 months of the Stroke Support team's physiotherapy before we go back to the specialist neurological physiotherapy.

The physiotherapy session also went well, with Jo doing some sit ups and lie downs to assist her in getting in and out of bed by herself. This led to one exercise Jo can do herself while sitting in a chair, putting the right foot under the left one and lifting the left leg that way, which is good exercise for the muscle in her left thigh. During the course of this Jo once again raised her left leg at the knee at her command while lying on her back.

Jo then did several stands, getting better each time and using her left leg more and more. This then led to several steps where Jo also got better at transferring her weight to her left leg when stepping with the right and made some progress in stepping with the left.

Finally Jo did some exercising with the pedal machine. This looks really good, exercising the left leg and encouraging movement in it. The physiotherapist did say they had a walking treadmill at the hospital which they strap you into and it makes you walk. I remember seeing this there and wondering why they didn't use it. Jo too was asking for something like this from day one. Now she is being discharged we may never get to use this. I'll pick up a pedal machine, which the physiotherapist said is good exercise to do before a physiotherapy session, tomorrow.

Another home visit

Jo got up at 08:30 today and came home for the day. During the transfer into the car her left leg tried to lift itself into the car. Either it didn't have the strength to complete the movement or maybe it was because Jo wasn't aware of it, that her conscious mind did not finish what the subconscious had started.

Certainly the neglect is still there, although it appears to be abating albeit slowly. We went for a drive along the seafront and I noticed that Jo was only looking to the right and so began pointing out items of interest on our left. Each time I did this Jo did not fail to look to the left, although she could be frustratingly slow to do so. This stands in marked contrast to Jo's time in the hospital, where all attempts to draw her attention to items on her left came to naught.

Jo appears to be increasingly aware of this, which cannot be a bad thing as being aware of the phenomenon is a necessary step towards addressing it. Later on at home Jo called out to me as she could not find the remote control for the TV. When I pointed to it on the left arm of her chair she commented on the fact of her neglect of anything on the left. I replied that she must make an effort to counteract this by paying extra attention to her left, observing that this is what I had been doing on the seafront. Jo said she had been aware I was doing this at the time.

We returned to CICC late in the evening and put Jo to bed at 21:30.

A home visit

I picked Jo up at 11:00 for her day at home. We managed the transfer into the car reasonably well on our own. Transferring out back into the chair didn't go quite as smoothly, maybe we should use the sliding board for added security.

Once she was home Jo played solitaire on the computer for several hours. She had a little trouble inputting the password as two letters to the left of the keyboard; V and C took a little pointing out.

The power and movement in Jo's left leg definitely comes and goes. In the morning we transferred Jo onto the bed to change her leggings. Her left leg felt light as I lifted it off the footrest, a sure sign the muscles were working with me. During the transfer the foot not only moved with her body, it could also be observed putting pressure downwards.

After we had changed the leggings the left leg was not as active when getting back into the chair and felt heavy when placing her foot back on the footrest.

Lifting the left leg

When I arrived at CICC Jo was lying on the bed lifting the right leg at the knee, so I asked her to lift the left leg in the same manner, whereupon she did. Not as high as yesterday, only about 3-4 inches at the knee but she was able to repeat the motion several times. She did this again in the evening, until she became tired. It is definitely coming back.

Jo lifts her left leg

When I walked in today at 13:55 Jo was asleep in her bed, despite her physiotherapy session being due in five minutes. I woke her and she raised her left leg up by pulling it towards herself, raising it at the knee.

"Do that again." I said, whereupon Jo raised her right leg in the same manner. "Not that leg, the left one." I admonished. At this Jo raised her left leg. "So you can do it!" I exclaimed.

"Yes." replied Jo with a quiet smile.

During physiotherapy we tried transferring Jo into the car. As I suspected the rotunda was a non-starter so we used the sliding board to help Jo shuffle from the chair to the car. With the suspension and passenger seat at their lowest setting and a pillow between the chair and the bodywork to protect the paintwork, transferral was relatively easy, positioning the sliding board under Jo and her right leg in the footwell. At the right moment the assistant physiotherapist  helped Jo get her left leg in the footwell and the job was done.

Transfer out of the car proved easier, effected by raising the car's suspension and passenger seat to their highest level and moving the seat back up. Then, with two "hops", Jo was able to get back in the chair. On the first attempt the assistant physiotherapist placed Jo's left leg out of the car and helped Jo to position it thereafter. The second run-through saw Jo position her left leg herself after it had been placed out of the car.

Another good physiotherapy session

Jo had a very good physiotherapy session today, achieving eight steps and amazing us all when she stood by herself twice. The bizarre thing is she keeps doing things like this and seems unaware of it herself. To make the steps they put her in a walking frame and that did seem to give Jo the confidence she needed. She also moved her leg backwards several times to straighten it, the most movement I have seen her do under her control as the steps are just shuffles really.

We agreed on Thursday we will try a transfer in and out of the car. That will bring us one step closer to Jo coming home, where I am beginning to think she will make the fastest progress as being in hospital or a rehabilitation centre seems to form a psychological block in her mind.

We also discussed an electric tilting device to aid Jo in sitting up and transferring to a commode. I hope they can get this soon.

Standing with the rotunda

Jo was less tired today and managed several stands using the rotunda from her armchair in the front room, which is quite low. She resists placing the left hand on the rotunda, but it does help her balance and I have observed, when it is on the frame, there are flickers of movement as the arm tries to do its bit.

In the same vein, when I placed the table with her lunch in front of her, requiring that she pull her legs back, she pulled the left leg back instinctively.

Using the rotunda

Jo came home for another long stay today. She is tired today as a result of four night-time urinations, one of which required a change of linen. The consequence of this was that her left leg was once again floppy, not making the effort to position itself correctly during rotunda transfers. The left side of her mouth was also drooping more than yesterday. No more pots of tea after 16:00!

Jo got up at 19:00 and we had some tea, returning to CICC at 20:30. At 21:00, when we did a simple transfer on to the bed, her left foot was moving in concert again. Obviously the dynamics of muscle movement in shuffling are better developed. They have just started using the rotunda for all transfers so we should start to see some improvement from now on.

Home visit with the occupational therapist

Jo came home with the occupational therapist to assess how things were. She did a transfer from the chair to the bed and managed quite well. As they discovered, Jo needed to use the rotunda to do the reverse though, making night-time urinations a problem.

They did observe the same apparent movement of the left leg in concert with the body during transfers.

Some improvement observed during physiotherapy

Jo rang me to make sure I was coming to CICC for her physiotherapy session today. She seemed much more positive than ever before.

During the session she managed several stands and two steps on the left foot, the latter of which, crucially, she was aware of.

We’re getting there

Jo was had a hospital visit today. The doctor agreed that the nerve pain was probably due to the returning movement in Jo's left leg, although she did observe that tolerance did develop to the Gabapentin over time. She doubled the dosage to 600 mg and prescribed 20 mg of Omeprazole to protect her stomach from the aspirin.

Jo's left hand is much looser and less prone to form a claw. Hopefully, the new pain control regime will see the progress we saw in her left leg last week continue. My parting comment to Jo was, "We're getting there."

Pain accompanies a slight return of movement

Jo was up by 08:30, seemingly having slept well despite not having a sleeping tablet last night. The physiotherapy session was aborted because of the neuropathic pain in her left leg. I did notice when Jo was transferring to the plinth that her left leg wasn't dragging, that she seemed to be making some attempt to move it in concert with the rest of her body. Perhaps this new neuropathic pain is symptomatic of returning movement?

Pain in Jo’s left leg

The pain in Jo’s left leg seems abated by the Gabapentin but not obliterated, making the leg draw up in a similar manner to the fingers of her left hand. I had assumed it was merely the return of pain previously masked by the Gabapentin but must admit I have not observed this behaviour before

Vice-like pain

Jo came home for a day visit today, having got up at 08:30. We managed to get her on the commode using the rotunda. At 14:30 we transferred her to the bed I had made up downstairs for a siesta. We did one transfer from the wheelchair to the commode and two transfers from the bed to the commode so eight stands. At 18:00 Jo got back in the chair and we had some tea before returning to CICC at 20:00, at which time Jo got into bed. During the transfers Jo's left foot was trying to make helpful movements but the movement was too small to have any effect. Still, it is returning and getting stronger.

We forgot to get Jo's Gabapentin to take home for lunchtime and by 20:00 Jo had vice-like pain in her foot and knee, indicating that the neuropathic pain is still there and that she needs to take it every eight hours.

Instinctive movement

Jo was up at 08:30 for breakfast, only going up for a siesta at 13:30. The physiotherapists came at 14:00 and got her up. It was a mixed session. The assistant manipulated Jo's hand on the bed and got her to raise it to her nose and up to the ceiling, using the right hand. This proved difficult at first, as the elbow joint is stiffening up. Jo has not been doing this exercise, which is bad.

Down in the gym they got Jo to stand four times, each time from a progressively lower position. Jo did not have her heart in it and the stands were perfunctory at best, as if Jo was doing it for our benefit, not her own. The physiotherapist did get her to step twice but this was perfunctory too, no more than a transfer of weight to her left leg.

On the bed at night there was a lot of movement from her left leg and toes, all of it instinctive rather than controlled but things are definitely waking up. Some of the movements were in response to input, so Jo moved her foot up and back to help me pull her sock off. Once again a movement she professed not to be aware of.

Voluntary movement of the left leg

In the evening, after I had massaged the foot, which stimulated small movements in the toes, Jo drew her left leg up herself, twice. After that she couldn't do it any more and said it was like this, she could move it and then it would go inactive again. I think this is “normal” and to be expected. She is definitely making progress.

Insouciance

The physiotherapy session saw another milestone with Jo standing and taking three assisted steps, one of which saw her lift and move the left leg. This was physically and mentally exhausting and Jo went back up to her bed afterwards for a well-deserved rest.

There is a certain lack of confidence that may be holding Jo back as she is afraid of falling but that is countered by her own insouciance. Just before Jo took those steps she was standing, leaning on a plinth on her right side to steady herself. Then, without thinking she raised her right arm and scratched her nose, standing and balancing all on her own without any problem.

Involuntary movement in the toes

Jo went to the hospital to have a new splint fitted for the left leg. While she was there she related that she had moved her toes upward on the left foot, only ever so slightly but definite movement. I saw the same movement when we put her into bed, a definite upward movement of the toes and an advance on previous movements of the whole foot or leg.

Speaking to the ontologist

Jo was visibly tired today and the physiotherapy session was limited in scope by that and the swelling in her left leg. The physiotherapist massaged the left foot and hand and advised Jo to keep it elevated as much as possible.

Despite her tiredness Jo did manage to transfer from the chair to the bed without a sliding board and managed to shuffle up the bed on her own. The physiotherapist said she could see an improvement with every visit and said she doubted Jo would need a rotunda by discharge time. The physiotherapist asked her to wiggle her toes but there was no joy. Jo said she can do it but not to command, something that the physiotherapist said was to be expected, functions returning unconsciously at first, only becoming conscious with time.

Jo was up in the chair at 08:00 as they needed to take the heart recorder off. The physiotherapist got her on the bed at 14:30. Jo went down to tea at 17:00, getting back into bed at 19:00. Getting back into bed Jo again did not use a sliding board and shuffled up the bed on her own, something she said was easier then the sliding board.

Despite there being little real progress today I have a feeling of something approaching normality returning. I had a dream this morning where I was speaking to Jo's ontologist about the prognosis for her recovery, which they thought was good. I had no idea what ontology was and so looked it up in the dictionary upon awakening. “The metaphysical study of the nature of being and existence.”

Early days with the rotunda

Jo was asleep when I arrived at 15:30, having been in the chair from 08:30 until 13:30. Her ankle was elevated on a pillow and the swelling of the last few days was much reduced. The doctor's diagnosis was that this was part of her condition, so he got that right. He has prescribed something to stop her urinating during the night. They have also given her a sleeping tablet at Jo's request, which the nurse and I do not agree with.

Jo got in the chair at 16:30 for tea, getting back into bed at 19:30. They have been using the rotunda to help Jo get in and out of bed as well as the toilet. When she got up at 16:30 they placed her left hand on the handle and I observed Jo actually pulling up with that arm. Once again she professed to be unaware of this, although she did complain about the pain. Getting back into bed at night she was tired and did not stand as well, nor use her left arm.

Bitter-sweet visit home

Jo was in the chair at 09:00 for breakfast. We went home at 14:00 for an hour. It was bitter-sweet, with the cats having to be coaxed into recognising her and Jo feeling like a visitor in her own home initially. It seemed to give her the left she needed though and hopefully the incentive to build on the controlled movement in her left leg we saw on Thursday. I don't think Jo realises just how important that is.

A good physiotherapy session

Jo had a very good physiotherapy session today, despite feeling tired and despondent. With her lying on her back and her left leg raised up at the knee the physiotherapist asked Jo to hold the leg in a central position, which she achieved after some concentration. Then the physiotherapist asked Jo to move her leg to the right. Once again Jo was able to after a bout of concentration. This was repeated three times, each time a little easier.

Increasing pain

The last week has seen the reappearance of the nerve pain as the muscles in her leg and arm become active again. Jo is also more tired and experiencing moments of mild mental tiredness, perhaps a sign that new functionality is returning. Certainly the leg appears to be moving more and demanding attention and now, with regular transfers using the rotunda, which exercises the muscles in the leg and to some extent the arm, there are definitely an increased amount of muscle signals being sent to the brain.

A target date for coming home

Jo had a good physiotherapy session in her room today, using the rotunda to stand three times. One of those stands was to transfer her to a commode, whereupon she was able to have the bowel that has been eluding her for three days. They have agreed to use the rotunda for transfers unless Jo is tired.

The CICC meeting used set 4-6 weeks as a target date for going home. There was some discussion how mobile Jo would be at that stage and which environment would be best for Jo's continuing recovery.

Where’s my arm?

Whilst watching TV Jo repositioned her left leg with her right arm and asked me to keep an eye on the left leg, in case it slipped off the footrest. It certainly seems her awareness of the leg is increasing, albeit slowly. Again, when she was on the bed in the afternoon her left arm was covered by a sheet and there was a moment of mild panic when she didn't know where it was. Once again, the brain seems to be becoming aware of the left arm and is drawing attention to it. The other thing I have noticed in the last two days is that, when Jo is attempting to reposition herself in the bed, she often lifts her right leg up and over the edge of the bed. If nothing else this is shifting her weight to her left leg, which is good.

Perennial problem

CICC’s blind adherence to procedure above patient care means Jo is still being taken up and transferred to the bed to use a bedpan. This is at a time when using the rotunda would be far more beneficial to her progress. Indeed placing her on a bedpan is actually retrograde, fostering dependence when independence is supposed to be their ethos. This is the perennial problem with the NHS, it is designed for the benefit of the people who work there, not for the benefit of the patient.

First power, then control

Twice today, whilst sitting in the chair, Jo's left foot ended up pushed forward of the foot rest. I didn't see how it got there but the only way it can have done so is under its own volition, friction and the edges of the footplate would prevent it just “flopping” there. At one stage I was helping Jo put her trousers back on after a session with the bedpan and her foot lifted itself and pushed forward into the trouser leg. Once gain Jo was unaware but it certainly seems as if the muscles in the leg are working instinctively or subconsciously, call it what you will. In the physiotherapy session the physiotherapist said this is how it works, first the muscle power comes back, then the control of the muscle power. Pushing against Jo's leg while lay on the bed I can feel it resisting the pressure of my hand, stronger than last weekend too.

Dissapointment

I was a little disappointed they had brought Jo upstairs and put her on the bedpan instead of using the rotunda to urinate but they said they said they were worried she didn't have enough strength yet. I spoke to the physiotherapist about this as I think using the rotunda would be good physiotherapy for her leg and her arm. She agreed and will evaluate her use of the rotunda and instruct them if she feels Jo is ready for it.

Pushing herself up on the left arm

Jo had a very good physiotherapy session today. The physiotherapist got Jo to push herself up using her left arm. I was amazed as I didn't think this was possible at this stage and that they would concentrate on the leg first. The physiotherapist also got Jo crossing her right leg over the left, something Jo struggled with at first but could do with ease by the end.

The physiotherapist also agreed with my theory of the arm and leg drawing attention to themselves, saying the muscles were all there and working and time would see Jo progressing to controlling them fully.

They finally removed the damned catheter today. Jo actually used the toilet downstairs, using the rotunda to get on it

Is Jo’s left side trying to get her attention?

Jo was in the chair at 08:00 for her breakfast and on the commode at 09:30. I have a strong sense of normality returning. CICC phoned at 13:00 to arrange a meeting with the nurses and neurological physiotherapists next Tuesday at 14:00 to discuss Jo's progress.

Frustratingly Jo drew up her left leg several times this afternoon, both while awake and asleep, but seemed to be unaware of it. I am convinced it is trying to get her attention!

Her left hand is looser, something the physiotherapist observed yesterday, and not looking so swollen. Sitting in the chair tonight Jo's left leg was very straight and almost playfully pushing against me when I stimulated it, something Jo once again seemed unaware of. This is obviously "neglect", the limb is active and Jo's subconscious mind is aware of it yet her conscious mind has yet to acknowledge it. This was amplified later when Jo's left hand began to hurt. It was hidden under a towel and Jo became panic-stricken as she could not locate it.

"Oh where is it!” she cried, unable to locate it despite logic and the pain pointing to its location under the towel. The irony is that once she had located it she wanted it wrapped in the same towel. Once again it seems as if the arm is trying to gain her attention.

Left leg leaning to the right

I participated as an observer in Jo's physiotherapy session with the physiotherapist today. Despite Jo experiencing pains in her foot and lower back they persevered, manipulating her spine to relieve the pressure on her lower back which is largely a result of sitting in a chair for so long. The physiotherapist was very good, obviously expert at manipulation and had just the right style for Jo, gently cajoling rather than the bossy britches approach they adopted at the local hospital.

Because of the pain they didn't attempt a stand but got Jo to transfer her weight to her left while sitting. They did this by asking her, first to tap her right foot, then to lift it up and to the right, thus shifting the weight onto her left leg. At first Jo was hesitant and said she couldn't do it. Then she managed a stumbling movement of the right foot. This gave her courage and confidence and she managed ten such movements of her right foot, each time shifting her body weight to her left leg.

When it came time to transfer back to the chair they got Jo to do the transfer on her left side, once again, making her transfer her weight to her left side, including leaning on her left arm Once again she protested that she couldn't do it but succeeded with amazing ease.

The left leg was again forcing itself over to the right; something the physiotherapist determined was the build up of strength in the muscles in one side of the leg. I adjusted Jo’s wheelchair, as the foot rests were uneven; forcing this one-sided development and the physiotherapist placed a towel between her legs to force it back to the left.

Still suffering the after effects of Baclofen

Jo was a little flat when I arrived at 15:00 and her speech was not the clearest but it had all improved quite a bit by 17:00 and she was using her buttocks, left and right, much better to transfer using the sliding board onto the chair for tea. Not as good as before the bloody Baclofen but a lot better than yesterday.

I massaged her foot and there was definitely some response to pressure there, very slight and it is only early stages but it is there.

Sitting in the chair that night Jo's left leg was far more central and did not push against me when I pushed it to the left. At one stage Jo began pulling the trouser leg on her left leg upward. When I asked her what she was doing she said she said she was trying to get her left foot in the right position as it was leaning over. Obviously awareness is returning for her to be aware of that. She tired quickly though, and her posture became more askew so retired to bed at 20:00.

A magpie comes to call

Jo looks much better today, sitting up straight in the chair and reading a book. Her left leg is still pushing over to the right. It is definitely pushing, not flopping.

I came back at 14:00 and Jo was on the bed and pretty soon she was asleep, whether from that bloody drug or general fatigue I just don't know.

During the afternoon a magpie came and landed on Jo's window sill, looking in the window directly at Jo. I woke Jo just in time to see the magpie fly to the tree opposite the window and thence to fly away.

Although Jo is sitting up fairly straight she is tired, which one can only put down to the bloody Baclofen.

Jo is having to refuse the Baclofen!

Jo is much better today, recovering from the effects of the bloody Baclofen. Looking on the bright side, she has had a "holiday" of a week in a drug-addled haze from her ordeal. The downside is that the memory of the transfer is becoming hazy, something I am fighting to keep alive by reminding her of it. Interestingly, during one such reminder session, she said she felt pain in the leg whilst standing on it, although she did seem confused as to whether she had felt pain in the right or left leg. Her brain may have transferred the pain to her right.

Jo seems to be recovering from the reappearance of neglect. She does seem to be looking to her left more spontaneously and is holding her head centred instead of twisted to the right as she was. She was also able to see the branches to the left on the tree we looked at two days ago.

She read quite a long story in the paper, with some effort of concentration, but then gave up on reading the horoscopes, saying they were blurry, possibly due to fatigue. She failed to notice her grey flannel bag on her left but spotted it as soon as I told her it was there and said she would have found it if she had looked harder.

The left leg is still leaning right, with some force, which one can only hope is muscle power with some element of left side neglect making it “push” to the right. I shall be observing this over the weekend to see how it recovers.

Jo's pride in her appearance seems to have been reawakened. She was wearing her cream shawl cardigan and asked for the black one and a particular blouse, which I cannot find.

Apparently they tried to give Jo Baclofen today! Thank goodness she refused it. She also hid one in her bed earlier, either Thursday night or Friday morning.

The bloody stuff seems to be making her lean to the left and is also reducing her ability to shuffle her buttocks. In the chair she was unable to shift from right to left buttock and when she tried to shuffle from chair to bed using the sliding board it took a lot of effort and she was hardly able to lift her buttocks at all. That bloody drug and that damned OT.

They put Jo back on the flit flow today. Apparently "having a chat" with her about it as though it were her intransigence and not their mistake in administering that bloody Baclofen that had scuppered the previous attempt. They did not explain or demonstrate how to operate the tap, leaving her dependent on them to avoid accidents. Jo showed me where the tap was and then I worked out how to operate it and showed her. When I phoned her at 23:00 she was using it to have a pee. They need her to drink more water and Jo complained for the first time about tap water, normally a pet peeve of hers, but one she hasn't bothered about until now, another sign of her return to herself. I promised to bring her some bottled water in the morning.

Tickling Jo’s toes

Jo was still extremely sleepy, even though they have finally stopped the Baclofen. She seems to be experiencing the lower back pain of a few days back. As the Baclofen works by suppressing signals from the central nervous system, we shall have to wait until the bloody stuff wears off to see what is causing it.

While Jo slept I tried gently tickling her left foot, she curled her toes and pulled the foot away, not sharply, as if in pain, but just as someone would do if you tickled their foot.

Bloody Baclofen

Jo didn't answer her phone until 09:00. I rang her at 10:30 and she had just finished a session in the gym, where it sounds as though the neurological physiotherapist is finally giving her the right kind of physiotherapy, manipulating the muscles in her arm and leg to counteract stiffness and getting her to stand unaided, with a transfer, another milestone. Jo said she was very wobbly standing, which is to be expected, and the session had tired her out, also to be expected.

I spoke with the physiotherapist, who agreed the Baclofen was counter-productive and she would speak to the occupational therapist, who had prescribed the bloody things, to get her approval to stop them. This is the problem with OTs, they look at things the way they are now and work on the assumption that is what they have to deal with, rather than consulting with the physiotherapists, to see what they will have to deal with in the future.

Baclofen is a muscle relaxant medicine that works by binding to a receptor in the brain and spinal cord (central nervous system) called the GABA-B receptor. The effect of this is to "damp down" the signals sent to the muscles.

This makes it the wrong drug to be administering to Jo at this crucial stage and may even be a contributory factor in Jo not feeling her left leg once she had switched to it.

From the manufacturer's own literature, “Do not use Baclofen at a time when muscle tone is needed to assure safe balance and movement for certain activities.”

“Do not use this medication if you have a history of stroke or blood clots.”

I also spoke with the physiotherapist about a day visit for Jo and she agreed that we should aim to move Jo to the car by swivel.

I spoke to Jo about the transfer. She was not so positive as I was about it because she said when she transferred to her left leg she couldn't feel anything. I explained that this was the first step toward making the brain aware of that leg and so feeling it. Just making the brain switch to it was good.

Later on she complained of her bottom being sore. I asked which buttock.

“The right one.” She replied.

I told her to transfer her weight on to the left buttock, which she did, but said it just switched the pain from right to left. So I told her to alternate between the right and left buttocks continuously. This she also did and agreed that provided some relief. Then I pointed out to her that she was doing with her buttocks what she would soon be doing with her leg, that three weeks ago she had been unable to transfer her weight from right to left buttock, let alone feel it.

Sitting in the chair in the evening Jo's left foot was experiencing muscle pain, possibly due to the transfer earlier today. She moved the left foot up and to the right, a movement she was dimly aware of although she hadn't consciously initiated it.

We are fighting the negative effects of that bloody Baclofen, which has brought back the visual and spatial left side neglect. In the afternoon, while looking at a squirrel up a tree Jo could not see the branches protruding leftwards on the tree. When a patient's recovery depends on stimulating muscle control via the central nervous system you do not administer a drug that works by blocking muscle signals to the central nervous system. I have to question why the OT did not confer with the Neurological physiotherapist in making the decision to administer the bloody stuff.

Bloody minded

Spoke to Jo this morning, she was complaining of pain in her lower back, once again on the left side. I discovered they have been giving her Baclofen for 6 days, possibly to counteract the muscle stiffness. One of the side effects is drowsiness, which would account for all the sleeping.

The cavity was again less evident and throbbing while Jo slept. Later on I observed it had stopped throbbing and was back to “normal.”

When Jo awoke we talked about the situation. She is determined she will walk again and said her bloody minded attitude will see her through.

My Exciting Stroke

I received my copy of “My Exciting Stroke” today. It is an interesting read, full of observations rather than a chronological account of Mary Deits' recovery. Like Jill Bolte Taylor she suffered a left hemisphere bleed.

So far two interesting observations have leapt out at me, one of which confirmed what I have recently been thinking. The first is that there is a tendency for a newly returning function to be accompanied by confusion and disorientation, each new reconnection in the brain disrupting the existing balance and needing time to stabilise. This is just what I have been thinking about Jo's current state, where she is tired and slightly confused and disoriented and something I have observed before, during the recovery period after the haemorrhage.

The second amplifies what the care assistant and latterly the nurses have said, pushing doesn't work, often an activity that is impossible or frustrating today is easy in a few days or weeks so pushing only leads to frustration and reinforces negative messages which may not be valid. The fact that CICC seem to acknowledge this is a distinct paradigm shift from the local hospital and even Cambridge, where they had a more bullying approach.

Also interesting is the way Mary Deits' husband used “visualisation” to make her aware of the right side of her body and so move her right leg. Basically she imagined moving the right leg and then was able to. This was in response to the same phenomenon as they describe with Jo, a lack of awareness of the left side of her body.

The cavity where the bone flap should be seems less pronounced today and it is throbbing, which must mean there is something going on there. It seemed back to normal after tea so may have caused by her lying prone but Jo said it had been throbbing lately so something must be happening.

I discovered that Jo had transferred from wheelchair to commode today, using the sliding board. By all accounts this was an initiative borne of her own volition and, although she was admonished for doing this before “she was ready”, read “they were ready”, this is another important milestone, demonstrating Jo's determination to regain her independence. They restart the flit flow tomorrow so they seem to be getting the message, Jo will be independent and, if this creates more work for them, tough, this lady is not for turning!

Jo was complaining of pain on the left side of her torso, which seemed to be muscle pain, hopefully a sign of the returning awareness I noticed earlier.

Nerves initiating movement

I arrived at 15:00 to find Jo enjoying a siesta again. The left foot was leaning to the right again, is this a sleep mode thing? Several times she drew up her left leg, straightening the ankle as she did so. I know the physiotherapists describe this almost disparagingly as a reflexive action, but it does mean the potential for movement is there and surely reacting to nerve pain is nerves initiating movement, which is how we all work? It just needs the brain to make the final, neural connection.

When Jo awoke I massaged her leg, which she enjoyed and said it felt “normal”, not “plastic” as it had done a week ago. When I was putting Jo's slippers on she thought her toes were wiggling. Unfortunately I couldn't see as her toes were in her slippers.

Don’t rush it

I rang at 09:45 and Jo was just in her chair being dressed. She had an accident, the first incident with the flit flow. I spoke to the nurse there and discovered Jo has seen the physiotherapists 4 times this week. She has only related two of these visits but the nurse thought she may have some confusion and memory loss from the bladder infection she has. Jo remembers these visits but hadn't realised they were physiotherapy because they weren't conducted in the gym, so no confusion then. I suppose it underlines the inclusive nature of the centre, where physiotherapy is part of your daily routine, not a session in the gym. The nurse also echoed something one of the care workers had said, that you mustn't rush it. I had thought this to be just comforting words along the lines of, “don't worry, it will come in its own time”, but apparently it is about ensuring they don't overwork the muscles in the good arm.

Another neglect incident tonight when Jo had a tray of chocolates, with one chocolate on the bottom right and one on the bottom left. Jo said there was only one chocolate left. When I pointed out that there were two, one on the bottom left, she saw it.

An interesting neglect incident

Jo is still suffering this new bout of muscle pain and is tired from lack of sleep, a situation that has hopefully been addressed by moving two old ladies in the centre who cry out all night.

Jo's left leg appears to me to be holding itself in position a little more. Jo and I both observed her left leg draw itself up. Jo said she could feel pain when she did so, which is different to withdrawing it in response to pain. Her left leg is leaning to the right when sitting in the chair, whereas previously it was neutral, just flopping. Could this be the beginning but still left dominant?

They have promised to start the flit flow on her catheter tomorrow.

An interesting neglect incident. The catering assistant had set a place opposite Jo. She pointed out to him that he had omitted the knife, on her left, and then quickly corrected herself as she could now see the knife.

Turning to the left

Jo was in pain again today. When I went to the nurse to get her some paracetamol I discovered that she had refused them at lunchtime today and yesterday, which means that it is muscle pain. This may be due to the lack of physiotherapy because the physiotherapist is ill.

Although the TV is on her right hand side, Jo was turning her head to the left to look at me when speaking to me, something she wouldn't have done last week.

Standing on her own

Jo stood on her own to do her washing and dressing today, another milestone and another contrast to the hospital where they had set a prissy goal of “standing with the aid of one person within a fortnight.” This was standing on her own, no person assisting. The pain has returned but seems less intense. Certainly it wasn't enough to keep her from getting in the chair for tea.

Healing begins

Jo got in the chair at 8:30 and stayed till after lunch, so four hours in the chair. She seems to be going through a healing phase, enjoying a siesta yesterday and today. She had her hair done today, with a parting which brings her hair down over her right forehead, thus hiding the indentation from the missing bone flap.

The left leg seems to me to be holding its own weight a little and moving more in concert with the rest of her body. Jo coughed twice and her left leg drew up at the knee. Jo was aware of the movement even though she hadn't initiated it.

Autumn leaves are falling.

A positive mental attitude

Jo was hoisted into the chair for breakfast but used the swivel board to get back into bed afterwards. She then did a half stand and swivel to get back into the chair for lunch and the same again to get back into bed afterwards. Great progress and far more than they ever achieved at the local hospital. It must have tired her out though as she was sleeping when I arrived at 15:00.

I helped Jo with a half stand and swivel. I was crap at it, lifting Jo instead of helping her to stand, a failing Jo pointed out to me. Not only is this place better at getting Jo into doing things for herself, it is proving to be adept at encouraging self motivation. Jo said she'd had an interview with the physiotherapist, who had accepted Jo's goal of wanting to walk as a good one. None of the mimsy goals they set at the hospital like '6 hours in the chair', which only served to reinforce the 'we're not sure you'll ever walk again' message. One wonders whether they understand that a large part of physiotherapy is in encouraging a positive mental attitude.

Don’t push it, it will come

Jo suggested a swivel into the bed. We agreed it might be best to use the hoist but it is good that she suggested it. Shows she is beginning to be self-motivated.

The physiotherapist was off ill so no assessment or therapy today.

One of the care assistants tonight seemed familiar with the recovery from neglect and said it was different for everyone and took time, willpower and patience. Interestingly she said not to push it, it will come.

First impressions of the Intermediate Care Centre

They put Jo in the chair at 8:30 this morning and she didn't get out until 19:30, at my insistence. Eleven hours had proven to be too long and her ankle was quite swollen. It did seem to have done her hemispatial neglect some good as she was spontaneously looking to the left, whereas yesterday she had to be prompted and even then often failed to turn her head fully to the left. The ICC does seem a better environment for recovery of functions as they do seem more focused on helping you to help yourself. The Neurological rehabilitation ward at the local hospital just encouraged dependency on the nurses, despite their stated aims to the contrary.

Thoughts on the neurological recovery ward

Discharge to CICC today. I am very disappointed in the treatment Jo has received at the local Hospital. Despite a stated objective of encouraging self reliance, I have seen no evidence of that beyond dressing Jo in her “day” clothes. They still have her on a catheter; there has actually been less physiotherapy than in Cambridge, once the botched handover from Benfleet ward and the mismanagement of her pain control are taken into account. Even allowing for that the frequency has been three sessions a week, no more than Cambridge and that was a recovery ward.

The care here has wasted time covering the same ground, signally failing to confer with Cambridge, even after admitting they found what information they had from there was "confusing".

At the very least they should have had washing and dressing sessions every day, with Jo being reasonably self sufficient in these activities by now. Jo should have been off the catheter soon after admission, with her having progressed from bedpan to commode by now. This is particularly damning as the catheter is only still there as it makes life easier for the nurses and doesn't benefit Jo in any way. I shall be monitoring CICC very closely to ensure they are not equally lax.

First impressions of CICC are very good. I met Len, a brain stem stroke victim from the local hospital who has achieved walking within two weeks of being here and generally praised them. They do seem more focused on actually delivering effective therapy and making progress, where the local hospital was just token, or at best, exploratory, physiotherapy.

Little change

Spoke to the neurosurgeon today, who said he had hoped we would see some movement from left leg by now. I don't think he is allowing for time spent recovering from visual neglect, which I think has been at least partially caused by bleeding in the brain since the last coiling, when the coils obviously penetrated the rear of the aneurysm. Without a doubt we have moved from reawakening the memory of the left hand side to relearning it.
In physiotherapy I did see some movement from left leg when the physiotherapist asked Jo to push against her but it was very slight and Jo was unaware of it. They do seem to expect to see some movement soon, with both the ward doctor and the physiotherapist actively looking for signs.
The physiotherapists put Jo in a powered wheelchair today. After the initial elation of movement under her control, Jo realised how much effort she had to put into compensating for her left side neglect, which she probably hasn't been aware of until now. I think it was also good as it made her aware a powered wheelchair isn't any kind of silver bullet and strengthened her resolve to walk again. This week has been the first week I have seen that desire strongly expressed by Jo. I also wonder how much of a psychological block the tennis ball sized cavity caused by the missing brain flap is.
Jo learnt she is to be discharged to CICC tomorrow.

Discharge to a rehabilitation centre

The discharge team discussed discharge to CICC, a local rehabilitation centre.

1st stand and swivel

Jo had another good session today, with three good stands, with more attention being paid to stopping the right leg doing all the work. Jo did a pivot on her good leg to get back in the chair, another milestone. Need to get her sitting in the chair for lunch and “tea”. There has been much talk of wheelchairs but I am convinced Jo needs a good comfortable chair with a high back she can snooze in.

Something moving internally

Jo had pains in her leg today but different from before, which she had described as like severe bruising. Today she described it as “something moving internally”. Jo had a good physiotherapy session, with two stands.

Jo starts taking Omega 3 tablets

I bought Jo a course of Omega 3 fish oil tablets to help with brain cell regeneration

First stands

A good half hour physiotherapy session saw Jo stand twice, each one better than the last. Now she needs to work on 'switching' from right to left.

Health Insurance ceases

That consultant neurologist has produced a report for the health insurers calling Jo’s neurological physiotherapy rehabilitation, thus causing them to cease funding. This is why their is a paucity of private physiotherapy in this county. All physiotherapists call what they do rehabilitation and the health insurance companies won’t pay for rehabilitation as, in their view, rehabilitation is never-ending. When you explain this to NHS-funded physiotherapists you just get a blank look. As their funding is not dependant on private health insurance they have no incentive to address this disparity.

The physiotherapy appears to be working

They put Jo in the chair at 14:00 today for her physiotherapy session at 14:30. This was a good session, with Jo standing twice for a good two or three minutes each time. Her torso has better muscle tone and she was able to shuffle from plinth to chair much easier than before.

The pain appears to be under control

Jo was in a better mood today and only required token persuasion to get in her chair. Once there she spent over 4 hours in it. The consultant physiotherapist has upped the Gabapentin to three times a day, 09:00, 14:00 and 22:00. This appears to be the right decision as Jo has been much more positive now the pain is under control.

Pain or depression?

Jo seemed a little down today but agreed to get in the chair after a little persuasion. She still complained of pain in her foot but it seemed better, with no reflexive withdrawal from stimuli. One of the nurses thinks Jo may need the antidepressants to get her through the next month.

She sat in the chair from 14:00 to 17:00, so another good three hours. We sat in the sun and went to the restaurant for ice creams and cakes, all of which gave her spirits a much needed boost. Her left arm was itching, which is new.

Flagging spirits

Jo was a little flat when I arrived this afternoon but agreed to get in the chair. It was a lovely sunny day which served to revive her understandably flagging spirits. We discussed her taking antidepressants to help her with her physiotherapy. The doctors think it will help with motivation and I also pointed out to her that they can help her to ignore the pain but she is still not keen.

She sat in the chair until 18:00, so a good 3 hours.

The pain continues

Jo looked more rested today. She didn't want to get in the chair because of pain in the knee, which she did agree was muscle pain and promised to get in it tomorrow. They have moved the evening Gabapentin to 22:00, which is more balanced than 18:00.

She was suffering nerve pain in her hand, shoulder, knee and foot by the evening. Her left leg was drawing up with the pain, which proves it is neuropathic and I hope a sign that things are waking up.

Vice-like pain

Jo is resting today as she has severe pain in her left foot, "as though it were in a vice". They are restarting the Gabapentin morning and night.

Finally they agree to restart the Gabapentin!

Jo was in too much pain for physiotherapy today. She tried sitting in the chair but even that was too painful and she asked to be put back after half an hour. We got the ward doctor to review her medication and he put her back on Gabapentin. I arrived at 6:30 in the evening and she had a tablet at 18:00. By 19:30 she was fast asleep.

Why did they withdraw the Gabapentin?

Three hours in the chair today. Jo is very flat and negative today, maybe a result of withdrawing the Gabapentin?

Jo has a CLQT test

In the morning Jo seemed to be going backwards, with strong leaning to the right. They did a CLQT test which showed some remaining signs of hemispatial neglect, although not too severe. They have stopped the Gabapentin, replacing it with Paracetamol 4 times a day. The pain in her arm and leg seems to be stronger, but only when it is moved. Three and a half hours in the chair today.

She was better by the evening and in better spirits.

The pain continues

Still strong pain so no session in chair. Speech seemed much improved though.

Strong pain

Jo had strong pain in her left arm and leg and didn't want to be put into the chair today. I only saw her briefly in the morning as I had a meeting in London. She seemed OK but speech as slightly slurred with some drooping on the left side of her face. She phoned me that night at 23:00, just as I was leaving London, and her speech sounded much improved.

Shuffling along

Jo had another good physiotherapy session today, using her left buttock to shuffle in and out of the wheelchair using a plank. The goal is to stop using the hoist by end of next week. Another goal is to stand aided by only one person by end of next week. The neurological consultant was very pleased with her progress.

Fear of not walking again

I participated in a therapy session with Jo today. A good hour and the therapists had her standing for the first time. Her back muscles are good and symmetrical and she was able to raise herself up to standing with me supporting her left arm, which is still heavy and unresponsive, although both I and one of the physiotherapists, saw her move the left arm back at one stage.

They were pleased with her progress and used a plank to move her back in the chair instead of the hoist, making her use her buttock muscles to slide back into the chair. She is making very good progress.

We then went for a long walk around the hospital grounds, visiting the car to pick up a parking ticket and take it to the ticket office. We spent a long time sitting in the sun, which Jo enjoyed. She admitted she was frightened of not being able to walk again, which is natural but I think, if she continues as I have seen this last week, she will be mobile again very soon. She spent 4 hours in the chair today which is important at this stage for her to regain her sense of balance and for the composure of her torso muscles.

Untangling knots

Jo was sitting up in her chair untangling the knots in her hair with the Leave-In shampoo. It's great to see her beginning to take a pride in her appearance again and another important step on the road to recovery. She spent 3.5 hours in the chair before getting tired.

Signs of improvement

Jo was in her chair when I arrived at 14:00, having been there since 09:30. She has had a gym session and an occupational therapy session. Jo managed to sit forward in the bed on her own. Great improvement.

Deciding not to die

Jo seemed a little distracted today, which I attributed to the Gabapentin but was probably because the realisation of what she has been through is just beginning to sink home. She soon brightened up though.

Another neglect incident occurred where there was a news paper to her left and when I said to look at the paper she said, “what paper?” So I rustled the paper and said here it is. Only then did she say she could see it.

She was also brighter in the evening. She told me she remembers deciding she didn't want to die during the time in Cambridge, which is probably what was weighing on her mind this morning.

A complete lack of continuity in patient care

Jo appears to be sleeping better, probably due to the Gabapentin. Asked them to put her in a chair, which is an important part of her therapy, but the neurological ward say Jo must be assessed by the physiotherapists again before they will put her in a wheelchair! I am flabbergasted, it is one thing for records and information not to be transferred from one city to another, quite another for records not to make it from the ward next door! This is symptomatic of a system designed for the benefit of those who work in it rather than for the benefit of their primary customer, the patient.

Earlier in the day I had placed Jo's legs on a pillow for comfort. She complained I hadn't placed her left leg on the pillow. When I said, “yes I have there it is.” She said, “I couldn't see it but now you have told me I can.” Later in the evening Jo had movement in her left leg that she pointed out to me and she was looking at it, willing more movement.

Dealing with neuropathic pain

Arrived at 14:30 to see Jo sitting up in her chair, having her hair brushed. Although it hasn't been washed yet it looks a lot better. I wheeled Jo outside where she enjoyed the sun on her face and spent some time trying to entice the hospital cat to appear. She was still able to balance herself, only tiring after two half hour sessions, making a total of one and half hours in the chair.

On our tour we had noticed a free side room in the neurological physiotherapy ward. Upon our return we asked the acute ward sister about this. She went and enquired and lo and behold, Jo was moved there after tea!

The consultant has taken her off the Amiodarone and back on Atenolol, Bendroflumethiazide and Aspirin, plus Gabapentin for the nerve pain. The Gabapentin seems to be causing some anxiety and confusion or short-term memory loss.

People who know little and try to cover their lack of knowledge with professional bluster

Saw the negative consultant today, who admitted he had no experience of Jo’s type of stroke. He showed me their CT scan, pointing to one area which he said showed a lot of dead tissue. I remain unconvinced, what I saw looked like tissue in the process of repair and which I now know was low density tissue first seen in 2003. I also pointed out that they weren't MRI scans, which are much better for distinguishing between distressed and dead tissue.

We both saw Jo together and she confounded his pessimism when she was able to see left and right peripheral objects. He also said the pain in her leg and arm was the nerves knitting and agreed that was a good sign, although betrayed his pessimistic nature when he said it could hinder physiotherapy. He prescribed painkillers for that. Jo is now noticing movement in both the left arm and leg, although unable to control or initiate it.

The phenomenon of hemispatial neglect

I read up on the phenomenon of hemispatial neglect, which I think is where the negative consultant gets his pessimism from, as studies seem to show less recovery of motor functions in patients so afflicted. I remain optimistic as that appears to be in patients where the syndrome originates in the rear of the brain. Jo has mild symptoms of this (not seeing objects to her left, feeling the right side more when both sides are touched) but I am sure those symptoms are abating. This fits in with the neurosurgeon’s view of recovery beginning after 3-4 months.

Jo had her first session with the local physiotherapists today and sat in a wheelchair for half an hour afterwards. She seems much improved, able to balance herself.

A negative consultant

Jo was more than a little down today. The consultant physiotherapist assigned to her had seen her and said she had suffered a massive stroke and there was major brain damage and he gave little hope for recovery of power of the left side. Obviously this was at odds with everything we had been told so far and so I phoned the neurosurgeon, who violently disagreed with this, saying there had been a stroke affecting that part of the brain dealing with the left arm only. He was pretty confident the left leg would regain full power although could offer no guarantees and said some “plasticity” should enable the left arm to regain some control although he doubted it would regain full power.

Update: 08/11/2008. I have just received Jo’s discharge report, which has been copied to Jo's GP. It refers to the brain scan conducted at the local hospital on the 10/09/2008 thus, “Evidence of previous craniotomy and surgical clips. Low density area in right parietal previously reported in 2003. No obvious recent infarct seen.” So the negative consultant was wrong.

High spirits

Jo is in high spirits, although still showing signs of tiredness, with the right eye still half closed and left side of the mouth drooping, evident only when she does an open-mouthed grin.

A transfer but to the wrong ward!

Jo rang this morning to say they are transferring her to the local hospital at 12:00. Good news. I was at the hospital at 3:30. She is in the acute stroke unit, whereas she should be in the Neurological Physiotherapy ward. I spoke to the sister in the acute stroke ward, who wasn't much use or help, but the sister in the Neurological ward confirmed she was only in the acute ward because of a bed shortage and her name was down for transfer. Jo seems in good spirits but must be tired from the journey as her right eye is not as open as it was and the left side of her mouth is drooping.

Little change

Little change today. Had a call from the local hospital which gave me some hope they had a bed for Jo, but they rang to ask me if I had heard anything! She said she would call the bed manager and promised to update me but I had heard nothing by the end of the day.

Some improvement

Jo continues to improve, with hardly any slurring of speech and her right eye looks nearly normal. There is some spasmodic movement of the left arm and leg, more when asleep than awake. Jo is not aware of the latter and still unable to initiate it.

NHS versus private

Jo has been accepted her for treatment locally in the NHS hospital. However the Neurological physiotherapy treatment ward there has no beds at present. It appears the local private hospital is only equipped for rehabilitation, not acute neurological physiotherapy, which is what she needs. Private medicine in the UK is largely confined to vanity treatments, with the NHS shouldering the burden of acute care. My concern is that the NHS is great when dealing with acute, immediate crisises, as they did when Jo first suffered the subarachnoid haemorrhage in 2000, but is woefully inadequate when dealing with chronic care. Jo’s condition still falls into the former category nominally but, unless there is an immediate danger to her health she will slip into chronic care and be neglected.

Continuing improvement

Jo’s speech continues to improve and her right eye is nearly entirely open. Her left leg and arm continue to be unresponsive, a situation not helped by the paucity of physiotherapy, 30 minutes a day, when Jo doesn't refuse it out of tiredness.

Don’t use the “r” word!

Jo continues to improve, her speech is almost normal and you only notice a droop on the left side of her face when she smiles. I have located a local neurological specialist, who works out of the local NHS and private General Neurophysiology hospitals and made contact with the Healthcare Insurance Company, who say they will pay for the physiotherapy up until the point at which Jo is mobile, thereafter it is rehabilitation, for which they will not pay.

Sunday papers

Jo's right eye is open more and speech is almost normal. She asked for the Mail On Sunday, a big change from last weekend when she did not care about the Sunday papers. Mum came visiting with me and was amazed at her progress.

A little ray of sunshine

Only a brief visit this morning as I am taking Mum to The Boatyard for lunch for her birthday. Jo is improving daily, her speech is less slurred today. At The Boatyard a ray of sunshine shone on Jo's place throughout lunch.

First signs of neglect

Jo looks better today although still tired. The physiotherapists got Jo standing in a machine which helped her. They helped her support her head in her hands. She couldn't feel her face with her left hand when both hands were supporting her head, which I learned later is a sign of "neglect".

Fatigue sets in

Just saw Jo briefly in the morning as I had to go to Gatwick. Jo was tired and I wasn't surprised, although disappointed, to find she had refused physiotherapy, when I rang her in the evening.

Second physiotherapy session

Jo had her second physiotherapy session today, sitting on the edge of the bed and trying to maintain her balance. Right eye beginning to open.

Geographically challenged

A Doctor told us today we have a choice of two hospitals, the Homerton (NHS) and the Wellington (Private). Have these people no grasp of geography? Both hospitals are in central London, miles from our home.

Jo continues to make good progress generally, speech still slurred but improving although she refused physiotherapy today.

August Bank Holiday

Bank Holiday weekend so no physiotherapy for 3 days. Jo continues to make good progress generally.

A small scare

Jo was very tired this morning and speech was hard. She has been working on the physiotherapy stroking her left arm to stimulate it so maybe she has worn herself out. She is also probably more than a little despondent.

There was a small scare when her temperature was elevated, with a fear of infection in the lungs due to not swallowing properly but all blood and urine tests came back negative and her temperature was back to normal by the evening.

She slept for a couple of hours and I observed her drawing her left leg up six times.

First physiotherapy

Jo had her first physiotherapy session today, designed to reawaken the memory in her brain of the fact it has a left arm and leg to look after. There was some success, with small movement being encouraged in both arm and leg. I saw the neurosurgeon, who said there was no brain damage, which he described as remarkable, and that physiotherapy would see her recover the movement in the left arm and leg.

Early days

Jo was a little less bright today although still lucid and there are small signs of recovery. The scar, which runs from th middle of her forehead to just below th right ear, is healing well and the right eye, which has become closed with the bruising of the nerves around the eye, is beginning to reopen.

Going for gold.

They moved Jo onto the ward today. She was asking for her TV as she had heard that Britain was third in the Gold Medals league. I am elated

Jo awakes

Jo was quite awake! Her speech is slurred but she asked where Mum was so had obviously seen her and registered that yesterday.

A startling incident

On the way to see Jo this morning a pigeon flew straight in our path and hit the wind shield with such force he must have died instantly.

When we entered HDU Jo opened one eye and she definitely saw us. She looked bewildered and frightened and I just wanted to take all this pain and suffering away from her.

From Neurological Critical Care to High Dependency Unit

They moved Jo from NCCU to HDU today, a good sign. She is a little more awake and trying to respond.

Looking upwards

They have begun to wake Jo up, her eyes try to open when I speak but the pupils are looking upward. She is obviously very sedated.

Still under sedation

More improvement today, Jo is moving spontaneously and opening her eyes when I talk to her. She is still showing the effects of sedation though and her pupils are barely visible. They have taken her off the last sedative and there are only nutrient and sodium level feeds. She is still on the respirator. They tried twice to take her off it but she is only breathing 5 times a minute instead of 12. She is moving her right arm and leg spontaneously and chomping on her oxygen tube. I thought I detected some slight movement in her left leg a couple of times.

Still in a coma but there are signs of life

Jo has some colour in her cheeks after a blood transfusion and is responding to commands, barely opening her eyes but able to move her right side in response to commands. They stopped the dopamine this morning so are weaning her off the sedative. The brain swelling is under control and shows no sign of recurring. The main focus is on her heart rate, which is erratic, and blood pressure, which is high.

A miracle

Jo is a little more stable today. Her heart rate is a more normal 90-100 and she shows some signs of responding. Jo is still under sedation. It seems the right part of the brain has suffered a mild stroke, affecting the left arm and there is hope that the left side of her body, specifically the leg, will only suffer from the brain being asleep for so long and will be able to be treated with physiotherapy. For now the main focus is on making sure the brain swelling does not reappear and on maintaining her vital functions. I saw the neurosurgeon who said things were looking a lot better and described it as a miracle.

Jo is in the neurological critical care unit

A visit to the hospital this morning saw Jo still under sedation but with the swelling reduced. The intern explained that the bypass had not been successful, the blood vessel collapsing and hence that part of the brain would almost certainly have suffered a stroke.

Her heart rate is cause for some concern, being between 125 and 156, and they were keeping her blood pressure up with drugs as that had become dangerously low. She is still sedated and there is little or no response from her.

The worst phone call I have ever received.

I visited the hospital again this morning and another scan showed that the blood flow was further reduced. There was no sign of a stroke at this stage and I was advised a further operation was necessary to put a bypass in place to circumvent the occluded blood vessel.

They began preparing Jo for surgery at 14:00

At 21:30 the neurosurgeon phoned me to say that as they began to implement the bypass Jo's brain began to swell. He was concerned this was life threatening and doubted she would last the night.

No change

There was little change in the morning, Jo having been stable overnight. It was decided to keep her under sedation for 24 hours to allow the situation to resolve itself.

The 8th of August 2008 – an auspicious date?

Jo was booked in for a clipping or possible bypass of the aneurysm that had haemorrhaged in 2000, as the coiling had failed to occlude it and it was still filling.

Jo checked into the hospital in Cambridge on the Thursday as the operation was scheduled for 8:30 the following morning. Jo phoned me from the hospital and was in good spirits as she regarded the date of 08/08/08 as particularly auspicious, being her goddaughter’s eigth birthday and eight being regarded as very luckyby the Chinese.

At 14:58 the Neurosurgeon, phoned me to say the operation had gone well as far as the aneurysm was concerned but that damage had been done to the blood vessel when they tried to clean it out as the coils had gone through the back of the aneurysm, the part they couldn't see, and “cut through the blood vessel like a cheese grater.” This had meant the operation lasted one and a half hours longer than expected and he was concerned at the possible damage to the brain by having those blood vessels clipped off for so long. As he described it, the right half of her brain had been asleep for longer than they hd anticipated and would have forgotten it had a left half of the body to operate. The best case scenario is that the brain would remember, the worst case scenario is that it would have to relearn these functions.

The repaired blood vessel had only a 50% flow through it. Jo was therefore kept under sedation with drugs to lower the brain's need for oxygen and hopefully give the flow time to establish itself.