Last hydrotherapy session this year

Jo continues to make slow but steady progress. Let us hope next year sees a step up in confidence and progress.

Treading water

Jo is continuing to progress with the hydrotherapy, treading water with increasing confidence, only marred by the lack of physiotherapy to back this up and the bouts of neuropathic pain, which still continue.

A bit better

Jo did not suffer so much neuropathic pain today and so had a good hydrotherapy session. Although progress is slow you can see the strength building in the left leg.

Progressing sideways

For the physiotherapy session today the physiotherapists got Jo to stand at the kitchen bench and walk sideways. They said we should do this as often as possible from now until January as they cannot visit again until then as this is a busy time for them, settling people in at home after a stay in hospital.

I appreciate their dilemma but Jo saw it as if she was being abandoned. Once again I find myself wishing for enough funding to pay for private physiotherapy. Once a week is not enough as Jo's confidence has been shattered by the fall earlier this year and it takes a whole session js to get her confidence back. Then, a week later, that confidence has dissipated and so we start al over again, making progress painfully slow.

Struggling with this new bout of neuropathic pain

Jo's hydrotherapy session was good today but with less feeling of progress than last week as Jo struggles with the fresh waves of neuropathic pain, the nerves waking up.

A really good work out

Jo had a really good work out in the water today. Performing the scissor movement the left leg was stronger than ever and the hydrotherapist got her to do 40 of these. Then she moved on to pedalling and, once again, the left leg was much stronger and Jo performed 40 of these. Finally with the squat to stand Jo performed better than last week and did 40 of these. She was tired afterward of course but there was a real sense of achievement and progress.

That evening, putting Jo to bed saw a vicious return of neuropathic pain in the left knee. Perhaps as a result of the exercise or just simply a sign of a new awakening?

Step and stand to sit

We concentrated on Jo’s step and stand to sit with Jo’s physiotherapy session today. After her fall last week we wanted to get practice in transfers without the damned rotunda.

Jo was hesitant but actually did rather well. The only hindrance was her left hand, which has become relaxed and is not gripping the zimmer frame. I had noticed this last week when Jo was walking using the frame. Normally this would be a good sign as that means the muscle spasticity is decreasing, a sign of possible returning movement. The fact that Jo is also experiencing the waking up pain in her left arm and hand lends further weight to this. Let us hope so.

Time to get rid of the rotunda

Yesterday I asked Jo to use the zimmer frame instead of the rotunda to stand whilst I changed her. She was definitely much steadier, although she didn't think so, which is largely confidence.

A fall has upset us both

Jo suffered another fall today. I was transferring her to the wheelchair using the rotunda. Whereas the last fall was backward, which I have been taking precautions to prevent since the last fall, this time she fell forward. I tried to catch her but her weight and gravity were against us.

The sooner we start doing transfers without the rotunda the better as the rotunda is inherently unsafe, having contributed to two falls now, none of which helps her confidence.

Even better in the water

Jo's hydrotherapy session showed continuing improvement today, with the scissor kicks stronger then ever and increasing power in the left leg when pedalling. Her squat to stand was good and Jo performed really good stands in the changing room, using only the bar for assistance.

A few more steps in the right direction

Jo had another physiotherapy session today and it definitely demonstrated the beneficial effects of having multiple sessions close together. Sadly there won’t be another session until next Monday.

This time she began her walk in the kitchen, walking down the hallway, turning left and continuing to the front door. At this stage she was tired and sat down. After a few moment’s rest the physiotherapists turned her around in the chair, whereupon Jo stood up and walked back down the hall and turned left into the front room and continued to her chair in the front room.

Once again there was no physical support beyond the zimmer frame and Jo was stepping and placing her left foot with increasing confidence. Navigating corners was much easier than Friday, with no complaints or anxiety from Jo.

The next phase will be to get approval for Jo’s carers to make transfers from bed to chair, assisting her in walking with the zimmer frame. This is an important next step and cannot happen soon enough in my opinion as today’s performance has demonstrated that Jo needs such exercise with increasing frequency.

A few steps in the right direction…

… Jo finally seemed to be making these with today’s physiotherapy session. The physiotherapists began in the summer room, at the back of the house, getting Jo to stand using the zimmer frame for support. With an ankle brace and new, velcro-fastening, shoes Jo was able to accomplish this quite easily.

The physiotherapists then coaxed Jo to walk out of the summer room, turn left and left again and walk to the front door. The first left turn saw increased muscle spasticity as Jo had to concentrate on two things, walking and changing direction and so she became anxious. A lot of coaxing saw her through the two turns and then Jo made rapid progress to the front door.

At the front door she sat down and was then wheeled back to the door of the front room, whereupon she stood again and walked back to her chair and sat down with a fairly smooth step and turn.

The whole time Jo was lifting her left foot clear of the floor and placing it herself. She need reminding to prepare herself for the next step, straightening her leg and shifting the weight but there was no physical assistance from either of the two physiotherapists.

Treading water

Jo’s hydrotherapy session today was good, insofar as she demonstrated increasing strength in the scissors movement and improved ability in pedalling whilst on her back. Standing from a squatting position was also better.

The physiotherapist did not have her colleague there so could not try walking in the water again and  we both came away slightly deflated at the slow rate of progress.

The beneficial effects of hydrotherapy…

… manifested themselves in Jo’s physiotherapy session today. Following on from yesterday’s session in the water Jo was able to complete the nine yard walk using only the zimmer frame and lifting and placing her left foot more than before. She also performed some impressive stands from a sitting position unaided.

Sadly the next physiotherapy session isn’t until next Friday, which has us both wondering if we should invest the money into paying for private physiotherapy sessions and stepping up (pun intended) the frequency to five one half hour sessions a week. That would be £250 a week but, as I keep telling Jo, how can you put a price on the ability to walk?

A little trouble walking in water

Jo had a really good hydrotherapy session today. She continues to gain in strength performing scissor kicks whilst floating on her back. Pedalling from the same position is still a problem though.

However standing from a squatting position is improving no end, so much so that the physiotherapist decided t see how Jo did walking in the water. Unfortunately she didn’t tell Jo what she was planning to do, merely asking her colleague to get into the water to assist.

Once Jo realised what was being asked of her and that she was in the middle of the pool without the psychological comfort of the side rail, I saw the anxiety in her face and, sure enough, after one step the muscles in Jo’s left leg went spastic and she cried out in pain. Concentration and multitasking trigger spasticity and in hindsight it might have been better to build Jo up to this and conduct the exercise from the side of the pool where the side bar provides psychological reassurance.

Stepping up to the mark

Jo really seems to be picking up the pace with her rehabilitation. Today's physiotherapy session saw Jo stand and walk with the zimmer frame, in itself an advancement on performing the same feats with the gutter frame, made all the more encouraging by the improvement in Jo's proficiency in performance.
Instead of dragging her left foot Jo was really stepping and placing it. Her left hand was also visibly doing some work holding onto the zimmer frame. It truly begins to feel as if real progress is beginning to be made.

Water baby!

Once again Jo's hydrotherapy session demonstrated her affinity with water and the efficacy of that medium for physical rehabilitation.
Jo's enthusiasm manifested itself even before she got in the water as she opted to stand without the rotunda or any other assistance whilst changing into her costume.

Once in the water Jo began performing the scissors movement with her legs whilst floating on her back unprompted and with as much visible control of her left leg as the right.

She also performed stands with much more positivity than last week and with no cries of pain. She truly is a water baby.

Reaping the benefits of hydrotherapy

Jo had a good physiotherapy session today, with the benefits of the previous day's hydrotherapy session manifesting themselves.

Jo's new goal is to stand unaided and she accomplished that with relative ease.

Back in the water and back on track

After an abortive week last week, which saw Jo’s hydrotherapy session cancelled in midstream because a second person did not appear to satisfy health and safety requirements and her physiotherapy session cancelled because her physiotherapist took some more annual leave, we finally got back on track with a hydrotherapy session today.

This went very well with Jo getting better and better at kicking her left leg from the knee whilst floating on her back and saw her increasing the use of her left leg to stand from a semi-sitting position in the water.

She seems to be moving from stage 4 to 5 of Brunnstrom’s 7 stages of neurological recovery, where spasticity begins to decrease and movement patterns are not dictated solely by limb synergies.

It was interesting to read, in a Wikipedia entry on spasticity, that “multi-tasking, such as walking while talking, or doing several physical activities simultaneously, can also trigger an increase in spasticity, especially if one or several of those activities makes the person nervous”.

This describes exactly what is happening during Jo’s walking exercises, with anxiety about turning corners leading to an increase in muscle spasticity and thus pain.

Progress brings another barrier to overcome

Jo had an assessment today, to determine the level of continuing support for her rehabilitation from the NHS neurological physiotherapy team.

They saw definite progress in her standing, walking and limb movement of the left leg. Her new goals are to stand from a sitting position unaided and to walk with only the support of a zimmer frame or four-legged walking stick. Jo has a conceptual aversion to both of these as 'old people's things', although I sense less so to the latter. Examination of her leg showed good muscle tone is returning and the ankle is getting looser, snmething Jo's Thai masseuse observed on the weekend. This means Jo will not require botox treatment there but they may look at a brace to support the looser, and hence weaker, ankle until muscle strength is further developed.

As part of the assessment they asked Jo to perform her nine yard walk to the front door. As on Friday, Jo got halfway before the pain overcame her. The physiotherapist echoed my observation that anxiety was causing the pain rather than vice versa. What the physiotherapist observed is that, as Jo's stepping of the left leg is improving, she is neglecting to 'prepare' the left leg for weight transfer by straightening it sufficiently. The consequence of this is that she attempts to put weight on a bowed leg, feels the leg giving at the knee, as it naturally would if any of us attempted the same. At this point panic begins to set in, prompted by a natural fear of falling, a fear exacerbated by the fall suffered at the hands of her carers back in March. This anxiety triggers the pain in the knee that eventually overwhelms Jo. We all perform this leg straightening 'preparation' without thinking about it as it is a response learnt in infancy, one that Jo must now relearn.

Pain and Progress

Jo's physiotherapy session went well despite her mental attitude, which has been negative all week. She performed the nine yard walk without any assistance placing her foot. Halfway through the walk she began to complain of pain in her knee and had a panic attack.

The physiotherapist thought this might be 'predictive pain' where anxiety about the returning muscle function causes one to experience pain.

Water works

Autumn is finally upon us and the colder weather made Jo and I feel more weary than usual today. Jo did not really feel like going to hydrotherapy but persevered anyway. Once in the water the beneficial effects manifested themselves yet again, with Jo progressing in her ability to place her left leg down on the bottom of the pool from a position floating on her back. On her first attempt she could hardly manage it but each successive attempt saw her gain in proficiency and confidence. Such was her increase in confidence that, on the last two stands accomplished thus, she took her right hand away from the side rail and stood completely unsupported.

Apparently this neuro hydratherapy used to be provided by the local hospital on the NHS but it is no longer supported. That is a great shame as Jo and I feel this is more beneficial to her than regular physiotherapy.

Signs of progress

Today Jo had a "fitting" for a new wheelchair to address the issues of lack of support for her left arm and the fact that it is too low. The fitting went well, with us identifying that it is the lower height of her current chair that is making transfers into the car more difficult.

During the course of the fitting Jo had to perform several transfers from one chair to the other. What really impressed me was the relative ease with which Jo performed these operations. It is only a matter of degree and progress remains agonisingly slow but we both could see that progress is being made.

A Step Onto The Scales

Jo's physiotherapy was very fulfiling today. Jo managed her walk to the hallway and her stepping was more purposeful than ever before, showing the beneficial effect of the hydrotherapy sessions. Jo did experience pain in the left leg, from her ankle to her knee. The physiotherapist identified this as muscle stretch, that is the pain of muscles being brought into use after a long period of dormancy.

Jo then attempted to stand on the new Salter scales purchased for this purpose as they had a wide footplate. Placing her left foot on the scales she stood, putting all her weight on that leg and stepped up onto them with her right leg. There was no pain in the left leg dvring this, despite all of her weight being transferred to this side during the procedure.

As a further bonus the scales revealed that Jo had lost 14 pounds over the last month as a result of following a low carbohydrate diet.

Hydrotherapy really suits Jo…

.. she is very comfortable and relaxed in the water and today’s session saw further improvement with none of the fear of falling that accompanies her physiotherapy sessions.

She was able to kick with both legs whilst floating on her back and perform the scissors movement better than she had done last time.

Jo performed several stands from a sitting position in the water, pulling herself upright with the bar at the side of the pool. The first time it was difficult for her to control the left leg, bending it down and placing it on the floor of the pool. Each successive attempt saw this accomplished more readily.

We have a review with the physiotherapist in two weeks time and we shall discuss whether to increase Jo’s land-based therapy or whether it is worth investing the time (and money, this is being paid out of our pocket as it is not available on the NHS or via medical insurance) in increasing the frequency of these beneficial sessions.

Reaping the benefits

Jo’s physiotherapy session today showed the benefits of her two hydrotherapy sessions as she was able to step with her left foot completely unaided.

There is still pain in the left foot and anxiety about falling. It seems to me that the later precedes the former and I remain convinced that Jo’s confidence is still suffering from the fall in March.

Second Hydrotherapy session

Jo had her second hydrotherapy session today and it seems to be having an efficacious effect. The therapist started in the deep end. With Jo standing upright in the water she got Jo to push down on her foot with Jo’s left foot. Although Jo professed she couldn’t feel it the therapist said Jo was pushing down on her foot with some force. This was in contrast to last week when Jo couldn’t bring the left leg down to the floor of the pool

Other exercises included Jo kicking with both legs while floating on her back and performing a scissors movement with both legs in the same position. On land Jo is just beginning to make lateral movements with her left leg. These movements are slight and with little control so this is a really positive effect.

In the swim

Jo had her first hydrotherapy session today and it went very well. She was able to stand unaided in the water and move her leg freely in the water. The buoyancy of the water meant that it was harder to place and control her left leg at the deep end but she managed the stand in the shallower water.

The physiotherapist manipulated the muscles in her arm and leg and I saw some slight movement of the arm whilst in the water. This bodes very well and she has another session booked for next week.

First steps with a zimmer frame

A zimmer frame arrived for Jo and she tried it out with the physiotherapists today. She was very hesitant as the zimmer frame requires her to stand more upright and does not allow her to lean on her forearms as the gutter frame does. Consequently she only managed one step with the zimmer frame before reverting to the gutter frame.

The physiotherapists said this was natural and that they continued to be impressed by her progress, saying she was now lifting and placing the left leg with no assistance.

Like a landslide

An occupational therapist came around to assess Jo and our house today, specifically to look at adapting the downstairs bathroom for Jo's needs, turning it into a wet room to enable Jo to take a shower.

While she was here she related an interesting analogy for brain damage, comparing its effects to that of a landslide blocking off a road. In this analogy rehabilation is like an earthmover clearing a path through the rubble, with each movement of the affected limbs carving out pathways to the brain.

We grow weary

It has been just over a year now and Jo and I are both very weary of coping with all this. The physiotherapist didn't call this week and so there was no session, which inculcates a feeling of being abandoned and robs us of any sense of progress.

On a more positive not Jo had a rehabilitation assessment for her left hand and they agreed that Jo needed another injection of botox, which they did immediately. We also learnt the consultant physician had agreed the state of Jo's kidneys should not preclude her undertaking the hydrotherapy treatments. Hopefully they will schedule a first assessment session soon.

Better stands

Jo’s physiotherapy session was earlier than we expected today, at 10:45 instead of 13:30. Jo is not as good in the morning and her left foot gave her a lot of pain. She still managed several good stands without support and made her nine yard walk to the front door, albeit with a lot of cries of pain.

Nevertheless the therapists were impressed with her progress and set goals for independent standing and walking transfers. The walk to the front door has been extended to a return journey and it is hoped to move Jo from the gutter frame to a zimmer frame within four weeks.

Tapping her toes

Jo discovered she can tap her toes on the left foot today. That might not sound like much to you or me but is the beginning of the 4th stage of Brunnstrom’s Seven stages of Rehabilitation, where movement patterns are not dictated solely by limb synergies.

A new wheelchair

Jo picked up her new wheelchair today. She managed a transfer from the old one to the new one with a very good stand and walk around, not a sand and swivel. Hopefully, as well as giving her more independent mobility, the chair will give her more exercise as she as gone up to 17 stone.

It’s too hot!

The weather continues to be uncomfortably hot and muggy, which interferes with Jo’s rehabilitation. In the evening Jo suffered a fall as a result of this as, when I was transferring her using the rotunda, she lost her balanced a fell backwards. She was able to control the fall and so did not suffer any damage but it took three paramedics to lift her back off the floor. The humid weather just makes her left side go heavy and limp and we will be glad when this heat wave is over.

Continuing progress

Jo had a physiotherapy session today and repeated her feat of walking the nine yards from front room to front door with the aid of the gutter frame. She was even more confident than last week and there was little or no complaints about the pain.

She also managed to stand from her chair completely unaided.

Leaps and bounds

Jo had two physiotherapy sessions today, her standard one with the hospital physiotherapists and a second one which was an assessment for hydrotherapy.

In her first session the physiotherapists gave her a big thumbs up and said she was coming on in leaps and bounds. She managed: to stand from a sitting position almost completely unaided several times; to stand and balance herself unaided and to complete her nine yard walk to the front door with minimal assistance and in one go. The latter was accomplished with less complaints about pain than last week and the only assistance was to help position Jo’s foot from a left/right perspective, otherwise she stepped on that foot completely unaided.

The assessment for hydrotherapy lasted an hour and saw Jo doing more unaided stands and pushing the physiotherapist nearly off the bed with her left foot. She also demonstrated more movement in her left arm than I have seen before. The only possible contraindication for hydrotherapy was her kidneys, which have only been functioning at 30% capacity for some years now. I’m sure it will be OK as Jo had hydrotherapy last year but they need to satisfy themselves it is not a risk factor.

Getting better every day

Jo had a good physiotherapy session today, successfully standing several times on her own and managing to stand for several minutes without relying on the standing frame for support.

She repeated her walk to the front door, using the gutter frame and with assistance from the physiotherapists. This week Jo managed that walk with no breaks at all. On the first week she had broken her walk twice to sit down for a rest, on the second attempt she rested once but today she did not stop for a rest, despite the fact she is stil finding it very painful.

I now have a contact to arrange complementary hydrotherapy. Hopefully this will accelerate progress even further.

Increasing Movement

Jo's physiotherapy session was interesting today. Rather than repeat the previous two weeks they decided to get Jo to transfer onto the bed to study her transfers and review the exercises Jo could conduct there.

To their obvious astonishment Jo was able to transfer herself from the wheelchair to the bed with a little effort. Once on the bed she demonstrated that she was able to raise her left leg at the knee with even more power than before. Not only that but Jo was able to move her left leg from left to right with little effort. This was something she had struggled and failed to do three months ago.

Jo was also able to raise herself up from a sitting position and get herself to a position sitting on the edge of the bed. This took the most effort and Jo was visibly tired afterward but it certainly seems that she is making progress.

Worried about Warfarin

I am increasingly concerned about Jo being on Warfarin. She did not suffer an ischaemic stroke but did suffer a brain haemorrhage in 2000, which Warfarin is a risk factor for. As she has one untreated aneurysm that risk factor is doubled.

She has been experiencing; hot flushes, shortness of breath, drowsiness and coughing. The first two are signs of low blood pressure and the second two of increased intercranial pressure. She is also experiencing difficulties keeping her left foot from leaning over to the left, a symptom we have seen before but which had abated post-cranioplasty, which is also the case for the drowsiness and coughing.

After speaking with the Neurological Consultant he agrees and Jo has stopped taking Warfarin.

The whole nine yards

Jo repeated her achievement of last week, that of walking the nine yards from her chair in the front room to the front door today. Last week took there attempts as Jo had to keep stopping for a rest as the pain from her left foot was so intense.

The physiotherapists say this pain is the foot waking up and trying to walk. Certainly Jo described the pain as intense pins and needles. We have all experienced that when a limb "goes to sleep." Is this the pain of increasing spasticity as described in Brunnstrom’s seven stages of rehabilitation?

In any event Jo managed the feat in just two stages today. The pain is still there and so intense she is literally crying in pain, but she seemed to overcome that quicker this week than last. Hopefully next week she can walk the whole nine yards in one go.

Jo walks to the front door

Jo had her first physiotherapy session for two weeks today. Using the the new gutter frame, specially adapted for her height and with support and guidance from the two physiotherapists, Jo was able to walk from her chair in the front room to the front door, a distance of some nine yards. Although it was painful, as the muscle spasticity has increased in line with Brunnstrom's seven phases of rehabilitation, Jo was jubilant about this achievement, as am I.

Pictures on the wall

We went to A&E today as Jo had some spontaneous bruising on her right arm and a swollen and painful index finger, possibly warning signs that she was taking too much warfarin. Her INR came back as 2.4, possibly a tad too high and the doctor advised Jo to stop taking aspirin.

Whilst wheeling Jo along the corridor to A&E I drew her attention to the pictures of the old fishing village on the wall to the left of us. I had often done this last year, when Jo was in the neurological ward, in an attempt to ascertain how her hemispatial neglect was faring. Initially she would keep her head turned stubbornly to the right and ask "What pictures?". Later on, and with some effort, Jo would turn her head to the left but fail to comment on the pictures.

Today she did not even turn her head to the left but commented that they were lovely pictures. When I pointed out that she could not see them last year she admitted that in the later stages she could see them but could not discern what the pictures were of as they were just a blur. The fact she did not have to turn her head demonstrates that objects on her left are not only perceivable by her, they are visible in her peripheral space.

A frustrating week

It's been a frustrating week as the physiotherapy sessions, which were already cut down from two to one as one of the physiotherapists was on holiday, were further reduced to nothing when the other physiotherapist fell ill. I've been away all week working and so have not been able to fill the gap. All this just makes Jo more despondent, which is the last thing she needs.

Once again I find myself frustrated at the state of private health care in the UK, which largely consists of vanity treatments because of the monolithic presence of the NHS, which is great at critical care but parlous at providing chronic care. With no real funding base beyond vanity treatments, private health care is in no position to fill the gap.

It is an extremely frustrating position to be in. Jo has the will and she is getting better but the availability of help is extremely limited unless you have the personal wealth to fund it which, unfortunately, I don't.

First steps without a frame

Jo took her first steps without a frame today as they have taken the gutter frame away to have it modified for her height. With one physiotherapist holding her hand and the other guiding her foot, as she still has no sideways control, Jo managed two steps.

Jo opts for self-propulsion

Jo had a consultation for a powered wheelchair today. There were two types on offer; one powered by an electric motor, which came in indoor and outdoor versions and one which enabled Jo to self-propel with her right hand.

As before Jo rejected the electrically powered one as she thought it might encourage dependence and, after trialling the self-propelled model, decided she preferred to be more independent and motivated, controlling her own propulsion. We now have an up to twelve week wait for the chair to be delivered. Let us hope Jo is able to walk to the front door to take delivery of the wheelchair by then.

Horrid sticky weather

The weather is hot and humid, which is making us both listless. I'm not sure who is the most lethargic, Jo because of struggling with the "weight" of her left side, or me struggling with pressure of work, housework and caring for Jo. Not for the first time I find myself wishing for a windfall which would enable me to take a sabbatical from work and devote more time and energy to Jo's recovery.

Jo has been persuaded to start taking warfarin. I have my doubts about the necessity of this and some misgivings too. With one untreated aneurysm and a clipped one that may be still healing I question the wisdom of thinning her blood at this stage. The consultant physiotherapist brushed these concerns aside but he could only quote statistics in rebuttal. I will seek other advice.

Signs of botox efficacy

This morning, as Jo performed a stretch, the fingers of her left hand extended as she did so. Is this an early sign of the botox working I wonder?

In what would appear to be breaking news an Australian man, who was confined to a wheelchair for 20 years, after a stroke at the age of 26, can walk again after treatment with botox.

As well as being an inspiration, this story lends the lie to the oft-quoted shibboleth that all repair of the brain ends after two years. That two year figure is actually the length of time of any studies done to date, not any true figure of the optimum length of time during which the brain can heal at all.

Warfarin, playing the numbers game

We saw the consultant physiotherapist today. He gave Jo an injection of botox in her left arm to try and loosen up the fingers of her left hand and spoke to us about Jo moving from aspirin to warfarin to lower the risk of stroke. He appeared to be playing a numbers game as this wasn't based on any empirical evidence of increased risk in Jo's case, just on statistics. I don't think the extra risks of warfarin justify this for the very little gain in risk reduction from aspirin.

Interestingly, today he said Jo had not suffered a stroke, contradicting his negative diagnosis last year when he said Jo had suffered a stroke and countered that it was "a matter of definition" when Jo argued that she hadn't. He had also insisted their CT scan showed a large area of infarction, the classic definition of a stroke, which a later report by the consultant neurologist diagnosed as, "a low density area previously observed in 2003" and went on to report, "no recent infarction".

We spoke to him about a diet aid to lower Jo's absorption of fat as she has not lost any weight since February, despite cutting out all cakes, biscuits and chocolates. The rest of her diet is balanced and she does not eat excessive quantities so the supplement seems the best way to us but he wanted Jo to see the dietician first. Another numbers game. Considering the risk factors; age, atrial fibrillation in the past and high blood pressure, also in the past, I still feel the focus should be on treating the cause rather than the symptoms. Reducing Jo's weight will lower the risk of high blood pressure, atrial fibrillation and stroke.

Still regaining confidence

Jo had a good physiotherapy session today, doing several good stands unassisted and walking with the support of the gutter frame. All was going well until she crossed the threshold between the living room and the hallway. This required her to focus attention on the amount of support required of her left leg and, despite the fact it was holding her up rather well, she began to panic. The physiotherapist agreed this was entirely due to the residual loss of confidence caused by the fall back in March, when the carers did not follow procedure, attempting a transfer with only one carer and causing Jo to fall.

This evening Jo spontaneously put out her hand to me whilst sitting and raised herself up to a standing position so we could have a hug.

Signs of progress

Our mood today was like the weather, restless and weary. I am heartened, however, by discovering the seven stages of rehabilitation as described by Brunnstrom.

Brunnstrom separates neurological recovery into seven separate stages based on progression through abnormal tone and spasticity. These seven stages of recovery describe tone, reflex activity, and volitional movement.

1. No volitional movement initiated.
2. The appearance of basic limb synergies. The beginning of spasticity.
3. The synergies are performed voluntarily; spasticity increases.
4. Spasticity begins to decrease. Movement patterns are not dictated solely by limb synergies.
5. A further decrease in spasticity is noted with independence from limb synergy patterns.
6. Isolated joint movements are performed with coordination.
7. Normal motor function is restored.

Jo would seem to be at Stage 3, moving to Stage 4. Before the cranioplasty she was “plateaued” at Stage 2.

This explains why she is finding standing and walking harder than before, even as she can move the limbs more, as spasticity has increased.

Don’t think about it

Jo managed a really good stand and swivel from the commode to chair today, because she did not stop to think about it, she just did it.

The Thai massage in the evening really helped. This is the third such massage and where the others were just painful, Jo is now feeling the benefits and the masseuse is concentrating her efforts on Jo's left side where the "muscles have been sleeping long time."

A little less pain

Jo managed to walk from her chair to the door today, using the gutter frame. There was less pain but she was very tired afterwards.

Another plateau

Another plateau day for Jo. She has been extremely tired at night lately, hopefully due to returning sensations.

First steps with the gutter frame

The physiotherapists tried Jo walking with the gutter frame today. Jo was in pain at first, which seems to be more muscular than neuropathic, possibly as a result of Jo moving the affected limbs more. When Jo stood up initially she had pains in her foot, her leg, arm and hand. By the end of the session the pain was largely confined to her foot.

On a plateau

A bit of a “plateau” day, with Jo making no progress if not seeming to go backwards.

Awareness of Jo’s left side returning

Jo revealed today that her left breast has been feeling "strange" and heavy, which would seem to be awareness of her left side returning. Today she was also sitting with her left leg bent up, another sign of functionality returning.

Heel and toe

Today Jo managed to lift the toes of her left foot from the heel, something she has not managed before.

Gathering pace and inspiration

Jo's rehabilitation continues to gather pace. We tried the gutter frame today and it seemed a good fit. More importantly Jo managed to stand to the frame quite well and it gave her inspiration that the frame would help her move to the next phase.

Gutter frame

Jo gutter frame arrived today. We'll try it out over the weekend.

One step forwards…

Everybody seems to be noticing the acceleration in Jo's rehabilitation except Jo, who keeps complaining of being fed up. My concern is that this attitude is not productive. On the other hand it does manifest itself as positive drive when the physiotherapists are here. Jo was annoyed at missing half her session due to being on the toilet and losing the full benefit through not taking her pain control tablets.

Pain and progress

Jo's physiotherapy session was stymied by two things today. The time available was halved as the timing coincided with Jo's morning bowel movement and, once the session was underway, Jo experienced pain in her left leg, which I later discovered was due to Jo neglecting to take her medication.

Despite this the physiotherapists professed their satisfaction with Jo's progress, saying her steps were stronger and expressing the view that the pain was due to the limb waking up.

Movement(s) and power

Jo had a mixed physiotherapy session today. Due to an accident with an uncontrollable bowel movement she was tired and her transfers were hesitant. Despite this, when the physiotherapist performed manipulation on her left leg she reported that there was increased movement and power in Jo's left buttock.

Gathering pace?

Jo's rehabilitation seems to be gathering pace, with more controlled movement in her left leg every week. Her left hand appears to be loosening up too.

Movement from the ankle

The NHS installed a bed stick by Jo's bed today. Hopefully this, coupled with the bed elevator, will help her get herself out of bed.

In the evening Jo was sitting in the recliner chair with her legs elevated. She found she was able to move her left foot back from the ankle, something she has not achieved before. Earlier in the day she had been exercising these muscles by pulling her foot back with a strap looped around the foot. It would seem remarkable that this small stimulus has shown such immediate improvement so perhaps it is just her rehabilitation progressing.

A new strategy

Jo had a recliner chair delivered today, enabling her to elevate her footrest and potentially to lift her forward into a standing position.

They also fitted a bed elevator which works mechanically to raise her to a sitting position.

The physiotherapists came and explained their strategy, which is to have two sessions a week; one practising manipulation; as conducted yesterday and the other practising walking. The collaborative care sessions previously held are replaced by Jo performing the exercises I have described in a previous entry.

All this is because they see Jo as making progress and to focus Jo on taking a more active role in her own rehabilitation as she becomes more mobile.

They then proceeded to get Jo to practise walking in the hallway, four steps forward and four steps back, using the banister for support. This was repeated twice. Jo was stepping well with the left foot going forward but dragging it going back. Conversely she was better at transferring her weight onto her left leg when going backward, which suggests it is largely a matter of confidence.

Power begins to return to the left thigh

The physiotherapist came for the first of Jo's two weekly visits. She spent the time manipulating Jo to encourage the muscles in her left thigh and buttock to work with some success.

Helping to put her shoes on

Today Jo was able to hold her left foot up to allow her shoe to be put on and managed to lift her foot on to the footplate of the wheelchair, the first time she has managed this.

Some concerns

We must speak to the physiotherapists about the pain in Jo's knee and the fact that her foot persists in leaning to the left.

I have also phoned and left a message for Jo’s consultant neurologist to contact me as I am concerned that Jo is suffering from a lack of physiotherapy, both in terms of the knee and foot but also in terms of progress, both physiological and psychological.

Four steps in the hallway

The physiotherapists had Jo standing from the wheelchair in the hallway and taking four steps today, holding on to the banister for support.

More pain

Over the course of the weekend Jo began to experience pain in her left leg when standing. Hopefully this is a sign of returning functionality.

Fleeting feelings

Jo said that lately she has been experiencing fleeting feelings in her left leg. She struggled to describe these feelings, only that they were different and fleeting.

Inspiration and depression

We attended an open session at CICC today, designed to gather feedback on the efficacy of Jo's care and others like her. We gave our feedback about the lack of continuity of care, with Jo commenting that she felt abandoned since collaborative care had ceased.

One of the other people giving feedback was a chap called Ian, who had suffered something similar to Jo, with left side hemiparesis and neglect. He seemed to be making much faster recovery, able to walk with a zimmer frame and move the left arm, with some use of the left hand. This was simultaneously inspiring and depressing. Inspiring because it demonstrates that progress is possible but depressing as he has achieved this in a little over eight weeks. Interestingly, although he had quite good ability with his left hand, he admitted he frequently forgot to use it. This was confirmed by him frequently moving this limb in conversation whilst apparently unaware he was doing so. This is a phenomenon I have often observed in Jo, albeit more in relation to the left leg than arm.

We did discover that Jo’s consultant neurologist can prescribe further physiotherapy from Collaborative Care. It is also possible that the medical insurance may cover a course of private treatment if so prescribed.

Second physiotherapy session with a new team

I missed Jo's second physiotherapy session with the hospital team but Jo's feedback was not inspiring. Although there are to be two sessions next week they do not seem to be generating that crucial enthusiasm that Jo needs at this stage.

Frustration and weariness

The rental car I have while mine is being repaired is a four door and so has a smaller opening which proved to be a challenge for effecting transfers.

The elevation of the leg we saw on Friday seems to come and go, as with all of this. It is very frustrating and we are both very weary with it all.

New functionality

Jo demonstrated her new exercises, given to her to perform herself by the new physiotherapist. One consists of straightening the leg and raising it from the floor to a position parallel with the floor from a sitting position, then holding it there for a count of five. Both Jo and I were pleasantly surprised to find she could do this.

Morning motions

I had to go away on business again. On my return I discovered that the extra visits from the carers hadn't materialised and Jo had soiled herself one morning. Perhaps the solution to this is also to have later starts when I am away as I have noticed that Jo will often have a bowel movement when they are washing her during a late morning visit. As her morning bowel movements usually happen at 11:00-11:30 this might be the solution.

Neglect comes and goes

We had a busy weekend with lots of transfers. By and large these were good but there is a certain amount of coming and going, which seems partly due to tiredness but also would appear to be the "nature of the beast".

It would appear to be the same with the hemispatial neglect; Jo frustratingly tends to keep her head turned to the right and I have to constantly keep directing her attention to objects on her left. When having a coffee on Saturday Jo could not see the two packets of sugar on the left of her saucer. When I said that was where they were she felt for them, as if searching for an object in the dark. When her fingers alighted on the packets she could suddenly see them and proceeded to pick one up, then the other without any fumbling.

On Sunday morning Jo raised both legs at the knee when she first woke up.

Social services live up to their name

Social services called and agreed to put the case for extra funding for the afternoon visit.

Early to bed works when I am away

Jo seemed to do better with the earlier bedtime visits but there is still the problem of the 5 hour gap between lunch and teatime.

Early bedtime visits

I flew out to CH on business this evening. We had arranged for the care team to make the bedtime call early, at 20:00, to shorten the gap between teatime and bedtime. This seemed to work well and is to be repeated tomorrow. Social services are to call on Friday to discuss the extra funding for between meals visits.

Dealing with muddle management

The Community Stroke Support liaison came around. She is going to see if we can get extra money from the council for an extra visit when I am away. That way we could have five or even six visits on those days. Then there could be a morning, lunchtime, mid-afternoon, teatime and bedtime visits. If the bed time visit was earlier on those days that would suffice to cover the periods when Jo needs a toilet break. She also said the hospital physiotherapist could request further visits from the Collaborative Care team for rehabilitation exercise if she felt that was necessary. It all seems such a nonsense all this chopping and changing, especially as the physiotherapists all work on the same team! That is symptomatic of a National Health System that is overrun by muddle managers I guess.

The physiotherapist gets it wrong

The physiotherapists arrived today to change the transfer instructions for the carers. Unfortunately they seemed to have it all about-face, trying to change the morning transfer from rotunda to stand-and-swivel. Aside from the fact that the bedtime transfer from commode to bed is easier than vice versa, Jo is not a morning person and their attempted stands were not the best, requiring three people to effect a stand and swivel. I could have predicted this and am bemused by their approach. I think the collaborative care physiotherapist has done some good work but hope things shift up a gear once Jo's rehabilitation changes over to the hospital team.

Collaborative care coming to an end

Jo was definitely wearied by yesterday's episode, she looked tired and her mouth was drooping.

The physiotherapist came around to review Jo's progress and start the handover to the Hospital Stroke Team. Despite all the talk of setting goals and Collaborative continuing if Jo met those goals, which she has, it seems to have been decided to end collaborative care. The emphasis now switches to rehabilitating Jo in the home environment, partly driven by the cessation of access to the CICC gym and the lack of a large walking frame in the outpatient's gym but also by a need to shift gear and get Jo focused on transferring effort into daily living.

The new occupational therapist was there and spoke of a chair that would tip Jo forward, so helping her to stand. The bed stick and elevator were also evaluated and it was agreed to use the elevator in preference. I put in a request for an electrical elevator and they are to arrange for a bed stick to be fixed to the wall.

A special gutter frame will have to be made up as Jo is too tall for the tallest frame.

The carers cause Jo pain and misery

I returned from CH at 21:00. Jo had been left from lunchtime until then as the carers who came for her teatime visit had merely rang the doorbell, going away when there was no answer. I cannot believe they did this as they know Jo cannot get to the door herself and were told I was out of town on business. Jo had tried to hitch her dress up and urinate but the dress was in the pot and consequently was very wet, capillary action made the base of the dress wet, which meant Jo's back was aching from sitting for three hours or more in her own urine.

Mixed signs

A mixed day again. Jo had some pain in the left knee and foot this morning which neither of us was sure was neuropathic or muscular. Jo opted to take an Ibuprofen and see if that addressed the pain. Her speech was slightly dulled and her mouth askew so I was not optimistic.

When it came time to go to Waitrose for lunch Jo elected to try a transfer to the wheelchair via stand and swivel. Although she was apprehensive and fearful, Jo persevered and, after a few failed attempts, managed a transfer that was almost 'normal', without fear or jerkiness.

Jo repeated this from wheelchair to armchair upon our return. Her mouth by this time was perfectly even and she spoke without any slurring. Let us hope this is a sign of continuous improvement.

Still afraid of falling

Jo had pain in her left leg today, preventing her from getting herself into a sitting position on the side of the bed. It seems like muscle pain and not neuropathic. Hopefully this is a sign of returning muscle tone in the knee and foot. I am not sure how this ties in with the fact that her left foot keeps tipping over on the left. Jo also admitted she is still afraid of falling since the fall. Her confidence in standing, which was good before the fall, still hasn't returned.

Collaborative care is about to end

Jo had a good session with the collaborative care girls today, performing six stands from the bed. I am concerned that this seems about to end with the handover of rehabilitation from the Collaborative Care team to the hospital team, just when the promised beneficial effects of the cranioplasty seem to be kicking in.

Walking the length of the gym

Jo had a really good physiotherapy session today. The physiotherapist had opened up the dividing doors so we had the full length of the two gyms. Jo walked using the big walking frame and completed two lengths of the two gyms, with four steps of her left foot on the first pass and three on the second completely unaided.

The physiotherapist thought the pain Jo has been experiencing since Tuesday was muscular pain and may be related to returning muscle tone. Certainly Jo seems to have more muscle tone on her left side generally.

Lifting her foot into the car

Jo got over the rubber lip of the sill getting into the car today but encountered the corner of the door frame, which is curved and the curve blocked her ingress. To navigate this she needs to pull her leg back, something that will just require a little more effort. She is getting very good at lifting the leg but has more difficulty moving it from side to side. We did achieve this once before, when the physiotherapist had Jo moving her left foot up and over. Then Jo seemed to achieve it by maintenance of motion. Now she needs to do it slowly and more deliberately.

One month after the cranioplasty

Jo continues to be able to lift her left foot when sitting, something she couldn't do before the cranioplasty. She is now at the stage the neurosurgeon said he thought she should be 3-4 months after the stroke; able to lift her left foot against gravity and reasonably able to transfer herself in and out of bed. It is reasonable to assume the delay has been due to the effects of the craniectomy, the syndrome of the trephined.

First movement of the foot sideways

Jo is getting even better at lifting her foot on to the footplate and placing it in position. She also managed to right the foot when sitting in her chair. In the afternoon she became tired from the excitement of purchasing a load of clothing and was unable to place her foot down on the footplate. Her hemispatial neglect also manifested itself when she had trouble seeing a lift and signage in front and to the left.

Still lifting that foot

Jo had a good session with the collaborative girls, performing several good stands. She also repeated her feat of yesterday , that of lifting her foot on to the footplate of the wheelchair, twice.

Lifting her left foot

Jo had a good physiotherapy session today. It began with the assistant physiotherapist manipulating Jo's left arm and hand with some success, Jo being able to move the arm back and forth when supported and straighten her hand and grip with it.

When the physiotherapist arrived they began some stands with Jo using her left hand to support herself. This Jo performed very well, standing for over five minutes for two stands.

Then they tried Jo on walking with the large walking frame. This was less successful at first, perhaps because Jo was tired from the stands but also because they had her walking around a corner. Once they started Jo walking in a straight line she was fine, lifting the left foot almost on her own and putting it down with some determination. It was all going well until Jo bumped into a plinth at the other end of the room, when her concentration went.

Later on, when transferring from the car to the wheelchair, Jo managed to lift her left foot from the floor to the footpad unaided, the first time she has done this.

A little less pain

There was less pain in the left leg this morning although it was slightly crooked. The pain continues to manifest itself in the left leg, especially when standing. The physiotherapist performed some manipulation of Jo's left arm and hand, which seem to show early signs of responding.

Morning neuropathic pain returns

Jo's left leg was painful yesterday and clenched in pain first thing this morning, the first time since the cranioplasty, necessitating an early Gabapentin.

The pain continues

Jo seemed a little better today except for neuropathic pain in her knee, which is of some concern as that was what took the brunt of the fall

Return of neuropathic pain post-fall

Later yesterday we saw a return of neuropathic pain to the left leg, in the thigh, and that seems to be continuing today. Jo did neglect to take her Gabapentin last night though so the pain cannot have been that intense.

Today has seen the return of some neglect symptoms, with Jo failing to see things to the left of centre, even when that centre was on her right, leaning to the left and leaving food on the left side of her mouth.

Encouraging signs of movement in Jo’s hand

We had an interesting physiotherapy session today at CICC. The whole hour was spent with the physiotherapist supporting Jo's left arm and Jo moving it backward and forward. I did not know Jo could do this and I suspect Jo did not either. It does need support for her to be able to do this but it is there. The physiotherapist also manipulated the hand, which is looser when Jo's arm is supported and Jo managed to “hold on” to a book spine when her hand was placed on it.

Follow up on cranioplasty and NCCU

We went to Cambridge today to see the neurosurgeon, who professed himself pleased with the progress of the healing post-cranioplasty. There is still the risk of infection but he said that risk was very low.

Apparently the dura did have to be repaired as it had stuck to the skin but there were only a few small holes to be sutured and the whole operation was completed in a short time, which lessens the risk of infection.

The neurosurgeon also commented on the slight indentation on Jo's right temple, which he said was due to muscle wastage. He did talk of plastic surgery to remedy this, which involves taking fat from the thigh, emulsifying it and injecting that in the forehead but he was not recommending the procedure and Jo is not keen. The indentation is slight, barely noticeable, mostly hidden by her hair and we both have hope the muscle tone will return as the muscles in that side of Jo’s face were cut from the middle of her temple to just below the ear again.

In the afternoon we attended a surgery, which was a follow up from the treatment Jo had received in the Neuroscience Critical Care Unit at Addenbrookes. Jo was in NCCU for 11 days and the new news to me was that they had considered a tracheotomy to help with her breathing. Fortunately that wasn't necessary. They did say they often see an improvement in neurological condition after cranioplasty which is heartening as they would actually see more of that and monitor it more than the neurosurgeons. The nurse also said that symptoms such as Jo's neglect often return before improving again after cranioplasty.

Whilst at the Lea Jo effected a transfer from her wheelchair to the toilet and back again. When she came to transfer back onto the wheelchair, on her affected side, at my command she lifted her left foot and placed it back down forward and to the left, a proper step and the first she has taken completely unaided.

Jo’s confidence is returning but very slowly

The District Nurse came and attended to Jo's burn, which seems finally to have stopped weeping and started healing.

The collaborative care girls came and did some stands and transfers yesterday and today and Jo seems to be doing well.

Jo is still apprehensive but exhibits some more movement in her foot

A trip out to Waitrose for lunch and some shopping was only marred by the performance getting out of the car upon our return. Not unnaturally Jo is apprehensive about getting out of the car on her left side. This has been exacerbated since the fall, which was on that side and has led to her exhibiting defensive behaviour and tensing up when I attempt to help her out. Her rehabilitation has definitely been set back by the fall.

Sitting in the chair that evening I observed that Jo's left foot was leaning to the left at the ankle. Jo was able to move the foot back without any assistance although it did take some effort. When I commented that Jo would not have been able to do that last month Jo said she would not have been able to do it last week. Let us hope her neurological recovery is gathering pace.

Positive signs

Jo looks better today, her smile is straighter and she is sitting straighter. She had a good night's sleep, possibly aided by the herbal pillow I bought her. Certainly she is suffering less neuropathic pain as evidenced by the fact that she did not take her Gabapentin last night again and her left leg was not in pain in the morning, a trend that has remained constant since the cranioplasty. She also went all day without taking any Paracetamol, another increasing trend since the cranioplasty.

Swings and roundabouts

Jo had a good session with the collaborative care girls, transferring herself from bed to commode three times. Her left foot is even more swollen than yesterday though, which is confusing. On the one hand she seems to be making progress, on the other hand various symptoms which had long disappeared, or abated post-cranioplasty, have returned. Hopefully it is just the brain sorting things out and not after-effects of the fall.

First faltering steps

We had a very emotional day today. We went to CICC for physiotherapy at midday. On the way Jo asked me to stay for the session as her confidence was at the same low level it had been six months ago.

The session began with the physiotherapist demonstrating the standing frame, a truly horrendous wooden contraption with heavy leather straps that resembles nothing so much as a medieval stocks. Once strapped into this the idea was that it supported one standing and thus counteracted the effect of sitting shortening the muscles. I have to say that Jo and I were neither convinced of the efficacy of this, nor were we enthusiastic about using it.

After freeing Jo from the machine's confines and almost as an afterthought, the physiotherapist decided to try Jo in the walking frame, having last seen Jo's performance in this in December, when Jo was under another physiotherapist. At that time Jo was just beginning to transfer her weight onto her left leg and the walking consisted of her dragging that foot along.

To my amazement and Jo's obvious but painful pleasure, Jo was able transfer her weight onto her left leg and step reasonably confidently forward. Even more amazingly she was able to lift her left leg and move it forward, the latter mostly with the physiotherapist’s assistance but twice on her own.

This was performed for a full length of the gym and then repeated for another length. Jo was overcome with emotion at being able to accomplish so much and so was I. So overjoyed was she, she suggested we visit Waitrose for lunch, in some small celebration of these first faltering steps.

Things are getting worse

Jo's physiotherapy session was not totally successful today. She is still not very confident standing. I am still fearful that the fall has had a deleterious effect neurologically as we have seen the return of neglect since then, accompanied by increasing stiffness and heaviness in the left arm and leg. The swelling I had noted going down post-operation has returned as well.

Things are getting better

Jo's head wound is healing very well and the dip on her right temple is less pronounced as the swelling has gone down in the surrounding tissue. Her neglect, which has returned somewhat since the cranioplasty and fall, seems to be abating.

New carers lift Jo’s spirits

Jo started the day in much better spirits, obviously occasioned by the impending arrival of the new carers. Luckily they met expectations and have proven themselves much more engaged than the previous agency.

I phoned the neurosurgeon, who confirmed I was right to call him but also said the nausea and temporary increase in neglect were to be expected and only if the nausea increased and was accompanied by vomiting should I contact him before our planned visit on the 1^st of April.

The District nurse came and removed the dressing from Jo's head wound. It is scabbed over so no need to dress it. Jo's temple seems to be indented more than is natural but perhaps it appears so because of all the swelling around it.

The physiotherapist came and reset Jo's goals; to stand with the assistance of one carer and to transfer herself to the commode from the bed or wheelchair. Jo is to spend up to four hours a day in the wheelchair. Obviously transferring onto the commode involves being able to pull knickers down and up again, the biggest challenge with one hand.

Things are getting worse, not better

Jo got up at lunchtime today and we went to Waitrose for lunch and some shopping. Her stands are very wobbly and there is a return of hemispatial neglect, with Jo failing to see her mobile phone just to the left of centre. She said it was going in and out of her field of vision. In Waitrose she was leaning to the right and her head was constantly turned to the right. She said she was aware she was doing this, which is new, but she hasn't done this for some time.

Getting in Jo raised her left leg the highest she has ever done but cried out in pain. Similarly, when sitting in her chair at home later, she drew her left leg back, something she hasn't done before but once again crying out in pain.

I fear the worst

Jo spent the last three days in bed complaining of headaches and nausea. I am increasingly concerned that the fall has had a deleterious effect on her cranioplasty. Hopefully I am wrong.

Complete loss of trust in the carers

Jo is still feeling very fragile, the fall has obviously had a deleterious effect on her confidence and she requires constant reassurance and is very afraid of falling whenever she does attempt a stand. She is better when I am there but very obviously has no confidence in the carers at all, which is not surprising.

The district nurse came and removed the staples this morning. The wound seems to be healing nicely but there is a lot of bruising and damage caused by the fall. The leg wounds were redressed as an alginate dressing had been applied, which has made Jo come out in a rash as she is allergic to seaweed.

Fear of falling

Jo seemed in slightly better spirits today but continues to be afraid of falling. Once again I noted that her left leg was not clenched with nerve pain in the morning. I was astonished to see one of the carers allowing Jo to transfer from the commode directly to the bed on her own, despite them not being authorised to do so. Jo herself was very unsure and only attempted the manoeuvre once I was in the room.

Shaken and bruised by the fall

Jo is obviously shaken by the fall yesterday and opted to stay in bed al day again. The physiotherapist came at 10:45 and said the bruising to her leg and arm prevented them from doing any physiotherapy today. Additionally the arm was tensed up with shock and more claw-like than it has ever been. Most of all they said Jo's confidence was visibly affected by the fall. I had noticed this earlier in the day. Jo had to stand to get on the commode and she managed it but she was obviously nervous and afraid of falling.

On the positive side she is moving the left leg far more than she ever did before and her leg was not clenched up in neuropathic pain in the morning. I have also noticed her neglect seems to be improving as Jo was able to tell that I was touching both legs at the same time.

The carers drop Jo!

At approximately 09:00 I heard a loud crash and upon going into Jo's bedroom saw Jo lying on the floor. The carer had attempted to transfer Jo from the commode to the bed using the rotunda on her own, contrary to the instructions in the care plan. I phoned the ambulance and they arrived at 09:18. They made sure all Jo's vital sign were OK and that she had not broken any bones before lifting her back on the bed.

She suffered bruising to her left thigh, knee and arm. The knee is particularly swollen and the arm gave her increasing pain throughout the day. Jo was badly shaken by the fall and unsurprisingly elected to stay in bed all day.

Later in the day the carers made their tea time call. They did their usual bare minimum and left. After they had left Jo urinated in the slipper and poured the urine on the floor as they had not ensured the female urinal was attached to the catheter, which they obviously had not changed all day. Health and Safety has clearly been breached and my confidence in them to deliver even the basic level of care is completely diminished.

Continuing improvement

Jo's stands were better today and she was able to push her leg back with a lot more ease when standing. She is also able to sit herself up in the chair, something I have never seen her do before. The cranioplasty is giving her some pain though and she went to bed early.

Immediate signs of improvement in neglect

Jo is making a good recovery from the operation but opted to stay in hospital for another 24 hours to build up her strength a little more as the operation being later had shortened her available recovery time.

Several people have commented on the fact that her mouth is drooping less on the left hand side. I have also observed that the swelling in her left arm and leg appears to have lessened significantly. The tactile neglect on the left side also seems to have diminished. Jo also has short term memory loss, perhaps this confusion is caused by other brain functions coming back?

A successful operation

Jo's cranioplasty was successful although later than the scheduled time of 13:30 as her heart rate was high at 156. They treated this with Tamazepam and tested her blood for electrolytes and performed an ECG to ensure there were no irregularities in her heart rhythm. She finally went to theatre at 18:00, returning from recovery at 20:30.

Increasing anxiety

Jo had an accident with her bowels this morning. She has been in control up until now so this may be anxiety about the operation manifesting itself.

The physiotherapist said Jo was distracted during therapy and asked that I take Jo to CICC tomorrow as she is less distracted in the gym.

Jo’s impending operation is preying on her mind

Jo had a good day although the impending operation is beginning to prey on her mind.

A fitting for a new splint

The physiotherapist and Occupational Therapist came around to fit Jo for a new splint today. I thought they would leave it but they took it away for further fitting.

Prior to that Jo had a good exercise session with ten good stands. The collaborative care girl said Jo was making good progress and that the cranioplasty should see further progress.

More movement of the arm

Jo had another good physiotherapy session today, with several good stands and more movement of her arm. The District Nurse came and took a swab of the leg burn.

Impatience leads to a tumble

Jo went to the hairdressers at CICC today. On our return she was rather impatient about getting out of the car, putting her left leg out while I was still getting the wheelchair out of the boot. As a consequence she tipped on the cucumber board and tipped herself out of the car, landing on the ground. I managed to right her by standing behind and helping her up by the armpits. Although it was a frightening experience it does demonstrate how far Jo has progressed as I would not have been able to get her in a standing position when she first came home, the left side being far too weak.

Jo’s burn is looking angry again

Jo continues to make steady progress and I am growing ever more confident for a full recovery. The District Nurse came and put new dressings on her leg burn and pressure sore. The former is looking quite angry after first appearing to get better so she has asked for a swab to be taken.

The first signs of movement in Jo’s arm

Jo had an interesting physiotherapy session today. The physiotherapist got her to move her arm, first from the shoulder, which I didn't know Jo could do, and then pushing forward against the physiotherapist and finally pulling back. The latter two Jo was really pleased about.

Transfer therapy

Another good day. As first noted by the physiotherapist last week, Jo's smile continues to be more even. We didn't get to do Jo's exercises but went on a visit to Waitrose so getting in and out of the car was Jo's physiotherapy for the day.

Jo s definitely getting better at standing

Jo had another good day. I supervised while she did four stands from the bed and she also stood to get on the commode to be wheeled in to the toilet for a bowel movement and stood to transfer from the commode to the bed at 23:00.

Jo is making good progress, standing by herself

Jo had another good day. The collaborative care girls came around for exercise, which now include 5 stands. They will be coming four times a week now so that is good and Jo is standing from the edge of the bed by herself. I put her to bed at 22:00 and she stood and swivelled instead of shuffling across from the commode.

Jo is able to sit up and stand from the bed

The physiotherapist came round and got Jo to use the bed stick to sit up, which she was able to do with a little effort moving her affected leg. Jo was also able to stand from the bed. This is really good progress and everyone was pleased, including Jo herself.

Why is it so hard to admit they were wrong?

Jo got up at 08:30 as she had an appointment with the hairdresser at CICC at 11:00. The technician came from Social Services and fitted a bed stick and raised the bed four inches.

We also had an appointment with the consultant physiotherapist at 16:15. He was very pleased and impressed by her progress and made his excuse, again, for giving such a negative diagnosis last year; that not much has been written about stroke. Considering he is supposed to be the expert I find this disingenuous at best but I have become used to the medical profession's inability to admit to mistakes.

Perching in the kitchen

Jo got up at 08:30.The physiotherapist came around with the OT and reviewed the mattress variator, deciding to get a bed stick to aid lifting instead. With the aid of two girls from collaborative the physiotherapist got Jo standing in the kitchen with the help of the perching stool and then the collaborative care team performed the left leg exercises and manipulation on the bed.

We have a date for the cranioplasty

The physiotherapist came and evaluated the bed for helping Jo reach her goals:

1. To get to a sitting position on the edge of the bed unaided. (Is easier with left side on edge of bed.) - 2 weeks
2. To transfer from sitting on edge of bed to commode/wheelchair unaided. - 1 month
3. To stand from sitting on edge of bed with guidance. - 1 month

The bed is good in that it is firmer but is too low so they will get a technician to raise it four inches.

The neurosurgeon's assistant called with a date of 11th of March for the cranioplasty. She also gave me a procedure number for dura repair to get approval from the health insurers, saying it may not be necessary but we should have approval just in case.

The problem with setting goals

Jo had a bit of a lie-in but in the course of the morning had to get up for a bowel movement. She very nearly raised herself into a sitting position and we have made that the first of her goals for the next two weeks. These goals, and progress toward them, are necessary for CICC to continue collaborative care, more pressure just when we don't need it. As well as forcing Jo to try to do things she may not be ready for, thus reinforcing failure, goals are relatively arbitrary things which focus attention on themselves and often away from real progress, which is invariably happening elsewhere.

Bone flap fitting and a brief moment in time

We went to Addenbrookes today for the fitting of the bone flap. I went for a coffee and it was all over by the time I got back. The clinician simply held the plate to her forehead to check for fit. I insisted on seeing him. The bone flap is titanium and has been moulded from Jo's bone flap, which I saw preserved in plastic. Now it goes to be placed in a sterile container until the neurosurgeon requests it for the operation, which could be any day from tomorrow.

We were sitting in the coffee shop afterwards when Stephen Hawking came in, in his special wheelchair and attended by a young man. It seemed strangely synchronous seeing him in that place under those circumstances.

We are both very worn down

Jo stayed in bed until 12:30 as she was very tired, not getting much sleep despite the exhaustion brought on by yesterdays disaster. The cold weather is not helping.

She had a desperate need to do a bowel movement at 10:00, just as I as about to go on a call. Once again I noticed that she was able to do much more getting herself to a sitting position. When we went to physiotherapy at 15:00 the physiotherapist asked if we could get a divan base to give Jo more purchase on the bed, thus hopefully enabling her to become more independent. I ordered one to be delivered straight away.

Jo had a good physiotherapy session by all accounts and seems to be progressing. It is very slow and beginning to wear us both down though.

We miss the appointment for fitting Jo’s prosthetic bone flap

Jo got up at 08:30 as we had an appointment at the prosthetic clinic for a fitting for her bone flap. Everything was going well until we entered the M25. At that moment there was a major collision and traffic came to a halt. We remained stuck there for an hour and a half, thus missing the appointment we had been anticipating for a month. Frustration doesn't begin to describe it.

Evaluation of Jo’s transfers

The physiotherapist, came round and evaluated Jo's transfers. She can stand up quite well from the bed apparently but cannot quite manage to transfer herself from the bed to the commode.

The first sign of Jo driving her rehabilitation

Jo got up at 12:30 after sleeping all morning. She was keen to attend her physiotherapy session, calling me 30 minutes before to make sure we got there. She really does seem to have turned a corner, driving her rehabilitation instead of merely tolerating it. I have always thought Jo would not start being proactive about her rehabilitation until she was ready.

Prism therapy may address tactile neglect

Jo opted to stay in bed again this morning. Once again she got up at 17:30, going to bed at 21:30.

I read another interesting paper by Masud Husain, about neglect and its treatment. One treatment, Prism adaptation, where patient wear prismatic lenses to “correct” their visual neglect. Interestingly he says that;

“…studies have also shown that prism adaptation is associated with improvements in representational neglect, neglect dyslexia, postural imbalance in hemiparesis, haptic neglect, and tactile extinction.”

He also says that, “Nearly all the patients who had prism treatment showed a significant improvement in neglect after the first session in virtually every task. Remarkably, this improvement increased in magnitude each time the patients were assessed up to, and including, five weeks after the last session of adaptation.

This is certainly something I shall be asking the therapist about.

Disrupted sleep patterns

Jo opted to stay in bed this morning. She had another restless night, no doubt brought on by her sleeping most of the day yesterday. The hope is that she gets a good rest in the morning, getting up in the afternoon, thus kick starting a more regular routine.

Jo got up at 17:30. After staying awake in bed all day she promptly fell asleep in the chair, whence she remained until going to bed at 22:30.

Drowsiness, a symptom of sinking skin flap syndrome

Jo slept a lot today. Drowsiness is one of the symptoms of "sinking skin flap syndrome" but hopefully is also helping the burn on her leg to heal. Certainly it seems to be in its last healing stage. Jo is also beginning to draw her left leg backward unaided when lying down.

Driving and pedalling

Jo had a good exercise session today and a good workout, including a good hour on the pedal machine, after I had a go at her about her driving her rehabilitation.

I wish Jo would be more proactive

Jo got up at 08:30 and went to bed at 21:30, assisted by the care team. She had an exercise session today, with the collaborative care team. They got her to push against them and move her leg from left to right and vice versa, which isn't in the exercises but I'm glad they did. I still don't understand why Jo doesn't do these movements on her own.

The thought has also occurred to me that Jo may be able to move her left arm when prone, as the pressure on the bone flap is less and this explains why she is able to move her left leg when prone. I asked her to do this when in bed, first her leg, for which she proffered the lame excuse that the bedclothes were on it and so didn't even try, then her arm, which she didn't even try. Maybe it is just my own frustration but I feel she really needs to wake up, stop feeling sorry for herself and take a more active role in her rehabilitation.

More NHS incompetence

Jo got up at 08:30, assisted by the new care team. We were not given any notice of this and no-one has reviewed the care plan with us. In addition we have not filled in the application for funding for this. They have also taken away the medication administration chart and their records without any handover. We should be used to this mismanagement by the NHS by now but I still find the degree of incompetence astonishing.

I am a distraction during physiotherapy

Jo has a good physiotherapy session, the first one where she has been motivated. She can see the point of the routines the physiotherapist is pushing her through and how it is helping her. Jo is easily distracted at the moment, another symptom of sinking skin flap syndrome, soI sat behind a screen so I wasn't a distraction and we agreed that, in future, it would be beter if I don't attend the sessions.

We have a date for the prosthetic clinic

We have a date for a prosthetic clinic with the surgeon who is preparing Jo's brain flap. The date is 12th February. Let us hope the operation is as soon as possible after that.

Jo had a very good physiotherapy session by all accounts, working on the torso.

Occupational therapists are incapable of joined up thinking

In yet another example of the lack of joined-up thinking displayed by occupational therapists. Jo's KP on Tuesdays clashes with a weekly meeting of the collaborative care team. Furthermore Thursday's session clashes this week with Jo's physiotherapy and is likely to do so every week. Hence we agreed with the collaborative care team to move KP to Mondays and Fridays. What a unnecessary complication, when breakfast KP every day was all that was required.

Occupational therapists hinder recovery

I spoke to the occupational therapist about why she has stopped the care team assisting Jo with breakfast. Her reasons make no sense to me, ranging from "Jo can't get into the kitchen under her own steam." to "It is not helping with Jo's material development." She contradicted the latter when she admitted it was helping with Jo's motivation, which was why she had mandated two days a week for Jo to participate in making lunch. Even the reason she finally settled on, that when Jo's care was transferred to an agency they wouldn't do this, she contradicted by saying we could contract whatever services we require. All this does is underline what a waste of bandwidth occupational therapists are. Jo has taken control, getting the care girls to wheel her into the kitchen and direct them making her breakfast, improving her motivation despite the best efforts of the occupational therapists to scupper her recovery.

Jo prepares her own birthay meal

It was Jo's birthday today and we had a very good dayy in which she helped me to prepare a delicious roast chicken accompanied by roast potatoes, parsnips, celery and stuffing.

Another CLQT test

Jo got up at 09:30, assisted by the collaborative care team. The Occupational Therapist, came and administered a CLQT test. It will be interesting to compare the results with the test Jo completed in the neurological ward, where she scored 15/20. Certainly she seemed to do well and got the only one where she significantly failed last time, the clock test, was 100% right this time. Last time Jo got all the numbers in the right place but drew a straight line between 10 and 2 when asked to place the hands at ten to two. This time she drew the two hands correctly.

I have already noted that, when standing using the rotunda, Jo draws her left arm up, something the physiotherapist thought might be muscles seizing up but I disagree. Today I have twice observed Jo lift the left foot to allow the rotunda to be pulled away. We are talking about the difference between the foot being dead weight and the minimum lifting effort against gravity but it is there.

Jo is enjoying preparing her own breakfast

The collaborative care team got Jo up at 08:30. They helped her prepare her breakfast. She is enjoying this and doing anything she can to prevent her feeling dependent, which is half the battle. Jo continues to be very drowsy although she slept less than yesterday which, in its turn, was less than Friday. When she wakes from each episode of torpor she claims unawareness of having been asleep, which is reminiscent of the way she drifted between dreams and reality in 2000.

Another restless night

Jo was fast asleep this morning. She had a restless night I think and passed lots of urine although she seems to have managed the slipper quite well as she hasn't used any extra incontinence pads.
The collaborative care team arrived at 08:45 so Jo didn't get up until 09:30. She then prepared her own breakfast of porridge, tea and a marmalade sandwich, assisted by the girls. Jo is enjoying getting back into the kitchen, an important part of her rehabilitation. Jo was less sleepy today, although she still slept a lot. She went to bed at 21:30, helped by the collaborative care team.

Do we need a wet room?

Jo got up at 09:00 and was visited by the physiotherapist and the occupational therapist as well as the collaborative care team. They gave her a good workout, with four transfers and work on the bed on her leg. The physiotherapist got Jo to demonstrate her ability to raise her leg at the knee when lying prone.

The OTs weren't happy with the bath lift and put us down for a wet room evaluation. This and the stair lift are means tested so we shall see what the cost is and how much help we get. I intend to do a dry run with the bath lift once I have the spacers as I'm sure we can manage it.

All of this activity must have tired Jo as she slept all day, waking long enough to eat lunch, tea and use the commode a couple of times.

Further physiotherapy assessment

Jo got up at 09:00, and made her own breakfast, aided by the collaborative care team.

We went to CICC for a physiotherapy session. Getting in the car gets better every time but we had trouble getting out at CICC, with Jo confused between left and right and pushing in all the wrong directions.

The physiotherapist did some further assessment and Jo failed a neglect test significantly, unable to detect touch or pressure on the left foot with her eyes closed. This is the same as the left side visual neglect, if she looks or has her attention drawn to an object she can see it but if she simply looks forward she fails to perceive objects on her left side in the peripheral vision space. That is an improvement from not being able to see things to her left at all so we must believe things are progressively improving.

We did have a good session though. Jo was able to exert some considerable pressure with her left leg against an object, in this case the physiotherapist, which she did several times and she also managed to move her leg to the right and hold it there. The latter took some effort but she did manage it.

The physiotherapist was very good, explaining what she was doing and why and, at the end of the session, she asked Jo to recap what she had done, which is important as Jo does forget and every positive step needs constant reinforcement.

Cranioplasty offers hope of improvement

Jo's left leg was crooked in pain again this morning. I administered her Gabapentin and Paracetamol but they had not had much time to take effect before Jo needed to get up for a bowel movement. During this she suffered pain in the left foot, both swivelling off the bed and when I was putting her slipper on. After Jo had been to the toilet the pain had abated. Perhaps the pain is actually from the burn.

The collaborative care team got Jo up at 09:00. We then went to CICC so Jo could have her hair washed, after which we drove to Cambridge to see the neurosurgeon.

The meeting went quite well, with the neurosurgeon expressing the opinion that the movement in Jo's leg was a good sign that supported his original prognosis that Jo would regain full use of that limb. He remained less positive about the left arm, saying the stroke from the collapsed blood vessel was in the lower left parietal lobe, in the part that controlled the left arm. It was unclear whether he was basing that prognosis on the fact of the location of the collapsed blood vessel or on the results of a scan. If the latter then we have the consultant neurologist’s observation that their CT scan showed 'no recent infarction', only a low density area first observed in 2003, which the neurosurgeon may not have seen. If the former scenario is what he is basing his prognosis on, then we have the fact that this area has been affected since the last coiling two years ago, as evidenced by Jo intermittently losing control of her left arm. As the brain can grow new blood vessels to areas of the brain that have poor blood flow, it is not beyond the bounds of possibility that this has happened in this case. This would explain why there is no loss of feeling in Jo's left arm, just as with her left leg.

the neurosurgeon said the cranioplasty, as well as providing a psychological boost to Jo's recovery, would provide some improvement in cortical functions. As the prefrontal association complex of the cerebral cortex is involved in planning actions and movement this would seem to be good news for an improvement of the affected side.

It would appear that cranioplasty is a lot more than cosmetic, as the geographically challenged intern at Addenbrookes attested, and, aside from the psychological factor, has even stronger clinical effect on recovery than the neurosurgeon is prepared to commit to.

The therapeutic value of cranioplasty has been proved by various experiments. Increase in cerebrospinal fluid (CSF) and superior sagittal sinus pressure, cerebral expansion, increase in CSF motion after cranioplasty due to an increase in cerebral arterial pulsations and improvement in cerebral blood flow, cerebral metabolism and cerebral vascular reserve capacity have been demonstrated after cranioplasty. – Bioline International

We evaluated quantitatively the recovery from impairment and disability in hemiplegic stroke survivors who received cranioplasty in the chronic stage.

Seven first-ever stroke survivors with hemiplegia (mean age 56+/-3 years) who required delayed (3-9 months after the onset) cranioplasty during continuous rehabilitation therapy were studied.

Recovery grade (1-12) of hemiplegia and Barthel index were assessed monthly before (the first rehabilitation) and after the cranioplasty (the second rehabilitation). The recovery grade of upper and lower extremity movements significantly increased both in the first and in the second rehabilitation.

Changes in the upper and lower extremity grades were significantly larger in the second rehabilitation (1.0+/-0.3 in the first vs. 2.4+/-0.7 in the second rehabilitation for upper extremity, P=0.007; 1.4+/-0.4 in the first vs. 3.4+/-0.7 in the second rehabilitation for lower extremity, P=0.002).

Increase in the Barthel index was larger in the second rehabilitation (23+/-8 in the first vs. 33+/-5 in the second rehabilitation); all patients regained the ability to walk.

Significant recovery of functional grade and recovery from disability occurred after the cranioplasty in the chronic stage (>=3 months) of stroke. - Muramatsu H, Takano T, Koike K. - Department of Internal Medicine, Kasugai Rehabilitation Hospital, Yamanashi, Japan (C) 2007 Lippincott Williams & Wilkins, Inc.

There also seems to be evidence that the cranioplasty could produce an improvement of Jo's neglect symptoms, as the following study from Addenbrookes describes.

BACKGROUND: The authors present a patient who developed transient hemispatial neglect following surgical drainage of a large right frontotemporal arachnoid cyst. As symptoms evolved in parallel with brain shift over the subsequent months, the authors hypothesized that the disorder was associated with the appearance of mechanical stresses in the cerebral mantle.

METHODS: To map tissue stress at the various stages of deformation, a finite element computer simulation was conducted on the basis of computed tomography scans of the patient.

RESULTS: The authors' results demonstrate substantial shear and compressive stress concentrations in the parietal lobe, a region commonly associated with neglect, and where positron emission tomography confirmed hypoperfusion in this patient. Treatment with combined ventricular-peritoneal and cystoperitoneal shunts was accompanied by clinical recovery and improvement of right parietal lobe cerebral blood flow.

CONCLUSIONS: The authors conclude that brain deformation was a contributing factor in the reversible neglect syndrome by compromising the normal flow of blood and/or the deactivation of subcortical circuits of the parietal lobe.

Academic Neurosurgery Unit, Wolfson Brain Imaging Centre, Addenbrooke's Hospital, Department of Engineering, University of Cambridge, United

Although this describes the fitting of shunts rather than cranioplasty, the effect is the same and it is especially interesting that the damage was initially in the same area, leading to brain pressure on, and reduced blood flow to, the parietal lobe.

In this context it is interesting to note that Masud Husain has written that, although neglect has historically been associated with the parietal lobe, recent studies show that “…lesions confined to the frontal lobe may lead to a more transient neglect….”

During our visit to the Cambridge Lea hospital Jo needed to go to the toilet. The hospital didn't have a rotunda, saying their policy is not to use them, and so we went to the disabled toilet where I placed the wheelchair alongside the toilet. Jo was then able to half stand and swivel herself on to the toilet and back on the chair afterwards. Jo professed herself pleased with this, saying it was easier than using the rotunda.

When the collaborative care team came to put Jo to bed at 22:30, Jo had removed the side arm of the commode; half stood and put herself on the bed while they were bringing in the rotunda.

Nearly there

Jo's left leg was crooked up again this morning but she slept through whatever pain there was. The left leg was moving sideways, which is not a pain response, maybe something is waking up? Certainly when the collaborative care team arrived at 08:45 Jo did not seem to be in great pain.

Jo was in much better spirits today and far less sleepy. She prepared her own breakfast and lunch for the two of us, which broke her out of the dependent mindset she has been slipping into and restored some sense of self-worth. I put Jo to bed at 22:00, the collaborative care team having arrived at 20:45, a time Jo deemed to early. I am going to have to insist Jo allows the girls to put her to bed as I am too tired later.

More importantly, when Jo was ready to go to bed, with her seated on the commode alongside the bed, I came back in the room with the rotunda to find Jo half standing. The arm wasn't out of the commode so she couldn't transfer across to the bed but she was nearly there.

Using the pedal machine

The physiotherapist came today and observed Jo using the pedal machine, which she thought was good although she exposed her negative proclivities when she said the left leg wasn't doing anything. As this was without feeling the muscles in that leg I fail to see how she can say that or what value there is in reinforcing negative messages. Jo and I are not unaware of how little the left leg is actually doing but we also know the most effective therapy is to move the affected limb in the confessional space and any flickers of muscle movement are to be encouraged.

Answering the key question.

During stands Jo moves her left leg back if she stands up straight and does not look down, demonstrating that this is all about the subconscious rather than the conscious mind and answering Masud Husain's key question, "...whether conscious intentions are an immediate consequence of preparation for action, or a retrospective mental justification to explain actions we have just made." Jo has also been holding the left arm up rather than just letting it hang when standing up which the physiotherapist thought may be developing muscle tone.

Does the mind play tricks?

Jo woke up at 07:00 with pain in her left foot. The leg was beginning to crook up with pain, something that had abated over last few days. However Jo had her Gabapentin early, at 22:00 last so that may explain the pain. The collaborative care team arrived early and got Jo up by 08:30. Jo went to retrieve the TV remote control this morning, until she realised she was currently unable. I think this is a sign the right side of her brain is "waking up". In 2000, after the sub-arachnoid haemorrhage, Jo tried to walk and fell over. This was because she didn't realise she was unable to walk. After this incident she regained mobility fairly rapidly. This time Jo is acutely aware of her inability and has been so since the outset, so the concept of inability has been reinforced consciously over some considerable period of time. The fact that her conscious mind is beginning to entertain the possibility of mobility can only be positive from a psychological perspective.