Time to replace the brain flap

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

Pedal machine

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

Left leg continues to improve

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

An interesting neglect incident

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

Sheer determination

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

Merry Xmas

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

Setting goals

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

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

Blood, sweat and tears

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

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

Winter solstice

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

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

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

Getting in and out of the car

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

A good physiotherapy session

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

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

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

Small steps

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

Conscious versus unconscious action

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

Butterfly dreaming

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

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

Some elevation

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

Another home visit

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

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

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

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

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

Jo’s first unaided stand

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

Preparations for coming home

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

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

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

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

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

Another home visit

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

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

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

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

A home visit

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

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

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

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

Lifting the left leg

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

Jo lifts her left leg

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

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

"Yes." replied Jo with a quiet smile.

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

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

Another good physiotherapy session

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

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

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