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.