The physiotherapy appears to be working

They put Jo in the chair at 14:00 today for her physiotherapy session at 14:30. This was a good session, with Jo standing twice for a good two or three minutes each time. Her torso has better muscle tone and she was able to shuffle from plinth to chair much easier than before.

The pain appears to be under control

Jo was in a better mood today and only required token persuasion to get in her chair. Once there she spent over 4 hours in it. The consultant physiotherapist has upped the Gabapentin to three times a day, 09:00, 14:00 and 22:00. This appears to be the right decision as Jo has been much more positive now the pain is under control.

Pain or depression?

Jo seemed a little down today but agreed to get in the chair after a little persuasion. She still complained of pain in her foot but it seemed better, with no reflexive withdrawal from stimuli. One of the nurses thinks Jo may need the antidepressants to get her through the next month.

She sat in the chair from 14:00 to 17:00, so another good three hours. We sat in the sun and went to the restaurant for ice creams and cakes, all of which gave her spirits a much needed boost. Her left arm was itching, which is new.

Flagging spirits

Jo was a little flat when I arrived this afternoon but agreed to get in the chair. It was a lovely sunny day which served to revive her understandably flagging spirits. We discussed her taking antidepressants to help her with her physiotherapy. The doctors think it will help with motivation and I also pointed out to her that they can help her to ignore the pain but she is still not keen.

She sat in the chair until 18:00, so a good 3 hours.

The pain continues

Jo looked more rested today. She didn't want to get in the chair because of pain in the knee, which she did agree was muscle pain and promised to get in it tomorrow. They have moved the evening Gabapentin to 22:00, which is more balanced than 18:00.

She was suffering nerve pain in her hand, shoulder, knee and foot by the evening. Her left leg was drawing up with the pain, which proves it is neuropathic and I hope a sign that things are waking up.

Vice-like pain

Jo is resting today as she has severe pain in her left foot, "as though it were in a vice". They are restarting the Gabapentin morning and night.

Finally they agree to restart the Gabapentin!

Jo was in too much pain for physiotherapy today. She tried sitting in the chair but even that was too painful and she asked to be put back after half an hour. We got the ward doctor to review her medication and he put her back on Gabapentin. I arrived at 6:30 in the evening and she had a tablet at 18:00. By 19:30 she was fast asleep.

Why did they withdraw the Gabapentin?

Three hours in the chair today. Jo is very flat and negative today, maybe a result of withdrawing the Gabapentin?

Jo has a CLQT test

In the morning Jo seemed to be going backwards, with strong leaning to the right. They did a CLQT test which showed some remaining signs of hemispatial neglect, although not too severe. They have stopped the Gabapentin, replacing it with Paracetamol 4 times a day. The pain in her arm and leg seems to be stronger, but only when it is moved. Three and a half hours in the chair today.

She was better by the evening and in better spirits.

The pain continues

Still strong pain so no session in chair. Speech seemed much improved though.

Strong pain

Jo had strong pain in her left arm and leg and didn't want to be put into the chair today. I only saw her briefly in the morning as I had a meeting in London. She seemed OK but speech as slightly slurred with some drooping on the left side of her face. She phoned me that night at 23:00, just as I was leaving London, and her speech sounded much improved.

Shuffling along

Jo had another good physiotherapy session today, using her left buttock to shuffle in and out of the wheelchair using a plank. The goal is to stop using the hoist by end of next week. Another goal is to stand aided by only one person by end of next week. The neurological consultant was very pleased with her progress.

Fear of not walking again

I participated in a therapy session with Jo today. A good hour and the therapists had her standing for the first time. Her back muscles are good and symmetrical and she was able to raise herself up to standing with me supporting her left arm, which is still heavy and unresponsive, although both I and one of the physiotherapists, saw her move the left arm back at one stage.

They were pleased with her progress and used a plank to move her back in the chair instead of the hoist, making her use her buttock muscles to slide back into the chair. She is making very good progress.

We then went for a long walk around the hospital grounds, visiting the car to pick up a parking ticket and take it to the ticket office. We spent a long time sitting in the sun, which Jo enjoyed. She admitted she was frightened of not being able to walk again, which is natural but I think, if she continues as I have seen this last week, she will be mobile again very soon. She spent 4 hours in the chair today which is important at this stage for her to regain her sense of balance and for the composure of her torso muscles.

Untangling knots

Jo was sitting up in her chair untangling the knots in her hair with the Leave-In shampoo. It's great to see her beginning to take a pride in her appearance again and another important step on the road to recovery. She spent 3.5 hours in the chair before getting tired.

Signs of improvement

Jo was in her chair when I arrived at 14:00, having been there since 09:30. She has had a gym session and an occupational therapy session. Jo managed to sit forward in the bed on her own. Great improvement.

Deciding not to die

Jo seemed a little distracted today, which I attributed to the Gabapentin but was probably because the realisation of what she has been through is just beginning to sink home. She soon brightened up though.

Another neglect incident occurred where there was a news paper to her left and when I said to look at the paper she said, “what paper?” So I rustled the paper and said here it is. Only then did she say she could see it.

She was also brighter in the evening. She told me she remembers deciding she didn't want to die during the time in Cambridge, which is probably what was weighing on her mind this morning.

A complete lack of continuity in patient care

Jo appears to be sleeping better, probably due to the Gabapentin. Asked them to put her in a chair, which is an important part of her therapy, but the neurological ward say Jo must be assessed by the physiotherapists again before they will put her in a wheelchair! I am flabbergasted, it is one thing for records and information not to be transferred from one city to another, quite another for records not to make it from the ward next door! This is symptomatic of a system designed for the benefit of those who work in it rather than for the benefit of their primary customer, the patient.

Earlier in the day I had placed Jo's legs on a pillow for comfort. She complained I hadn't placed her left leg on the pillow. When I said, “yes I have there it is.” She said, “I couldn't see it but now you have told me I can.” Later in the evening Jo had movement in her left leg that she pointed out to me and she was looking at it, willing more movement.

Dealing with neuropathic pain

Arrived at 14:30 to see Jo sitting up in her chair, having her hair brushed. Although it hasn't been washed yet it looks a lot better. I wheeled Jo outside where she enjoyed the sun on her face and spent some time trying to entice the hospital cat to appear. She was still able to balance herself, only tiring after two half hour sessions, making a total of one and half hours in the chair.

On our tour we had noticed a free side room in the neurological physiotherapy ward. Upon our return we asked the acute ward sister about this. She went and enquired and lo and behold, Jo was moved there after tea!

The consultant has taken her off the Amiodarone and back on Atenolol, Bendroflumethiazide and Aspirin, plus Gabapentin for the nerve pain. The Gabapentin seems to be causing some anxiety and confusion or short-term memory loss.

People who know little and try to cover their lack of knowledge with professional bluster

Saw the negative consultant today, who admitted he had no experience of Jo’s type of stroke. He showed me their CT scan, pointing to one area which he said showed a lot of dead tissue. I remain unconvinced, what I saw looked like tissue in the process of repair and which I now know was low density tissue first seen in 2003. I also pointed out that they weren't MRI scans, which are much better for distinguishing between distressed and dead tissue.

We both saw Jo together and she confounded his pessimism when she was able to see left and right peripheral objects. He also said the pain in her leg and arm was the nerves knitting and agreed that was a good sign, although betrayed his pessimistic nature when he said it could hinder physiotherapy. He prescribed painkillers for that. Jo is now noticing movement in both the left arm and leg, although unable to control or initiate it.

The phenomenon of hemispatial neglect

I read up on the phenomenon of hemispatial neglect, which I think is where the negative consultant gets his pessimism from, as studies seem to show less recovery of motor functions in patients so afflicted. I remain optimistic as that appears to be in patients where the syndrome originates in the rear of the brain. Jo has mild symptoms of this (not seeing objects to her left, feeling the right side more when both sides are touched) but I am sure those symptoms are abating. This fits in with the neurosurgeon’s view of recovery beginning after 3-4 months.

Jo had her first session with the local physiotherapists today and sat in a wheelchair for half an hour afterwards. She seems much improved, able to balance herself.

A negative consultant

Jo was more than a little down today. The consultant physiotherapist assigned to her had seen her and said she had suffered a massive stroke and there was major brain damage and he gave little hope for recovery of power of the left side. Obviously this was at odds with everything we had been told so far and so I phoned the neurosurgeon, who violently disagreed with this, saying there had been a stroke affecting that part of the brain dealing with the left arm only. He was pretty confident the left leg would regain full power although could offer no guarantees and said some “plasticity” should enable the left arm to regain some control although he doubted it would regain full power.

Update: 08/11/2008. I have just received Jo’s discharge report, which has been copied to Jo's GP. It refers to the brain scan conducted at the local hospital on the 10/09/2008 thus, “Evidence of previous craniotomy and surgical clips. Low density area in right parietal previously reported in 2003. No obvious recent infarct seen.” So the negative consultant was wrong.

High spirits

Jo is in high spirits, although still showing signs of tiredness, with the right eye still half closed and left side of the mouth drooping, evident only when she does an open-mouthed grin.

A transfer but to the wrong ward!

Jo rang this morning to say they are transferring her to the local hospital at 12:00. Good news. I was at the hospital at 3:30. She is in the acute stroke unit, whereas she should be in the Neurological Physiotherapy ward. I spoke to the sister in the acute stroke ward, who wasn't much use or help, but the sister in the Neurological ward confirmed she was only in the acute ward because of a bed shortage and her name was down for transfer. Jo seems in good spirits but must be tired from the journey as her right eye is not as open as it was and the left side of her mouth is drooping.

Little change

Little change today. Had a call from the local hospital which gave me some hope they had a bed for Jo, but they rang to ask me if I had heard anything! She said she would call the bed manager and promised to update me but I had heard nothing by the end of the day.

Some improvement

Jo continues to improve, with hardly any slurring of speech and her right eye looks nearly normal. There is some spasmodic movement of the left arm and leg, more when asleep than awake. Jo is not aware of the latter and still unable to initiate it.

NHS versus private

Jo has been accepted her for treatment locally in the NHS hospital. However the Neurological physiotherapy treatment ward there has no beds at present. It appears the local private hospital is only equipped for rehabilitation, not acute neurological physiotherapy, which is what she needs. Private medicine in the UK is largely confined to vanity treatments, with the NHS shouldering the burden of acute care. My concern is that the NHS is great when dealing with acute, immediate crisises, as they did when Jo first suffered the subarachnoid haemorrhage in 2000, but is woefully inadequate when dealing with chronic care. Jo’s condition still falls into the former category nominally but, unless there is an immediate danger to her health she will slip into chronic care and be neglected.

Continuing improvement

Jo’s speech continues to improve and her right eye is nearly entirely open. Her left leg and arm continue to be unresponsive, a situation not helped by the paucity of physiotherapy, 30 minutes a day, when Jo doesn't refuse it out of tiredness.

Don’t use the “r” word!

Jo continues to improve, her speech is almost normal and you only notice a droop on the left side of her face when she smiles. I have located a local neurological specialist, who works out of the local NHS and private General Neurophysiology hospitals and made contact with the Healthcare Insurance Company, who say they will pay for the physiotherapy up until the point at which Jo is mobile, thereafter it is rehabilitation, for which they will not pay.