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.