Dissapointment

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

Pushing herself up on the left arm

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

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

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

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

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

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

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

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

Left leg leaning to the right

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

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

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

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

Still suffering the after effects of Baclofen

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

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

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

A magpie comes to call

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

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

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

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

Jo is having to refuse the Baclofen!

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

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

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

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

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

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

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

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

Tickling Jo’s toes

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

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

Bloody Baclofen

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

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

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

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

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

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

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

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

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

“The right one.” She replied.

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

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

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

Bloody minded

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

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

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

My Exciting Stroke

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

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

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

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

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

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

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

Nerves initiating movement

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

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

Don’t rush it

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

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

An interesting neglect incident

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

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

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

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

Turning to the left

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

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

Standing on her own

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

Healing begins

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

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

Autumn leaves are falling.

A positive mental attitude

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

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

Don’t push it, it will come

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

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

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

First impressions of the Intermediate Care Centre

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

Thoughts on the neurological recovery ward

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

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

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

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

Little change

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

Discharge to a rehabilitation centre

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

1st stand and swivel

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

Something moving internally

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

Jo starts taking Omega 3 tablets

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

First stands

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

Health Insurance ceases

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