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.