Her sleep is more settled and consistent care is helping develop more trust with her carers. Her lack of trust has caused her to be much less positive in her movements. She is probably past the emergency immediate psychological requirements and has become more settled. Anita was asked what treatment options help and she agreed that the weighting on psychological help, backed by the physio was the correct balance. Ultimately she needs to find more meaning to her life but she is getting more to the point of making decisions. The hospital she is in can offer the best treatment possible on this basis. Our local council will ultimately decide the financial side of things, they may prefer to move her to Oxford.

She has become more motivated for activities and particularly enjoys swimming every week. Getting up in the morning is becoming easier. While she is in an open environment they would like to try her in an electric wheelchair.

Her state of mind was demonstrated yesterday when Anita sat for 6 hours in the kitchen looking at the wall. I go out to work all day and she is left on her own apart from carers visits. Although the door was open and she loves her garden it seems she just stared into the house blankly. This week the doctor has started her on a new anti-depressant called venlafaxine and she has had a visit from a psychiatric nurse.

It’s horrific to see her so humbled like this, stunned into an almost comatose state, it’s so not Anita. Occasionally you get a little peep of the fighting Anita (she is the strongest person I have ever met), only other brain injured people and their families can imagine just how difficult it is. I know that like the sea, the depression will come and go out again, unfortunately there is no waking up from the bad dream that is the reality of the situation.

So I am sat in the garden in the heat, the cat has just walked past and looks very cheesed off and Howard is watching the Open golf!

Patient potential

The message from the rehab unit was to forget walking, focus on other things and get on with life. Although walking may be an unrealistic prospect, you have to be careful with what you accept because you know that doctors know very little about the brain and others like Michael Watson have proven them wrong. You have to listen to the advice, try to be dispassionate and make your own mind up. Walking is not the biggest issue but independence definately is.
One of the most upsetting things I am having to come to terms with is that most brain injured people will never reach their physical potential:-

• The overall experience of the injury and the chemical changes in the brain can de-motivate the patient.
• There would never be enough physiotherapy over the long term to support maximum recovery.
• If the rehab unit mixes too many different medical cases it’s unlikely to have the right culture.
• All possible range of therapies are not explored.
• Apart from physical improvements brain injury throws up lots of other important issues and problems that have to be dealt with.
• Not everyone is as keen on exercise.

I am fully aware that few people in life reach their full potential. However is it wrong to ask for more when this isn’t simply reaching higher in your career but just to be able to have a shit in dignity!

It’s much easier for her to complete this transfer at RH because the bed is adjustable and the mattress is very hard, at home we need to change the mattress. Because her left side is weak she has to make the transfer always to her right. At the moment she is still in transition from the stage that someone needs to keep a hand on her and the stage she can just be monitored hands-free. To get to that stage alone is still a way to go. She will need much more control, I would be still very worried at the moment that she would fall and injure herself. We could do without any blows to the head or broken bones that would set her back.

Yes Anita wants to walk again but right now this transfer is an important step to some independence! As it stands she needs someone to supervise these transfers which means lots of carers etc.

My employer has been in touch about my return to work and although I want to return and luckily am mentally able, I don’t want to rush back to work! I haven’t been off with a bad back or stress and my employer has to understand it will take me quite a while to recover from this!!

I found out this week that I am free of MRSA! I have had three clear swabs, so have beaten the dreaded Super bug!!

I do my own laundry now at Rayners Hedge, but I find it more tiring than I thought it would. I listen to talking books to while away my time and I am taken out shopping in Aylesbury, which I enjoy. However, no-one tells you how boring and slow recovery is. I shouldn’t moan though as it could be worse! One of the other inmates at Rayners Hedge stays in bed the whole time and is fed through a tube. What sort of life is that for a young lad? He’s only about 19 years old! He should be out with his mates, making mistakes, not lying in a hospital bed! I have told his mother that I used to be on a life support machine and was fed thorough a tube for many months, to give her hope that her son might recover, as it must be awful for his family what he has to go through. She said that seeing lucid people like me that have also had a brain injury, inspires her and I am glad I can be some help at this difficult time.

There is a lot of frustration at Rayners Hedge as people struggle with their various disabilities. I must admit that before I became ill I was not fully aware of all the things that can go wrong with the human body! I try to remain positive, but it’s hard and ironically I find it easier to see other people struggling and finding solutions!

I have tried to get this down as accurately as I can remember. The main thing he had to say was that ‘Anita had suffered substantial nerve damage and that her neurological recovery had virtually stabilised’. ‘Without this significant neurological recovery we are not being realistic with respect to her walking again’. ‘In the majority of cases similar to Anita they would not walk again’. When asked to clarify if Anita ‘would never walk’ he reiterated that’s not what he was saying but at the moment there was a lack of realism in the attitude to recovery. He was concerned that Anita’s whole mindset and goals were focused on walking and this was to the detriment of other improvements she could make. She needed to be focused on other things and would be disappointed time and time again if she expected to walk.

I was not expecting to hear what was said. Anita had been telling me that she had recently walked on her own albeit with all the strapping and quadrapod gizmo’s. It therefore seemed odd to consider she would never again walk. I made this point but what she is doing is apparently a long way from walking!

Speaking of walking I can now say that Anita has actually walked on her own for the first time. When I say on her own I mean with a quadrapod, strapping on her leg (backslab), strapping on her foot and a physio to catch her. I know it’s still early days but she did about 20 yards and gives encouragement to the belief that she will one day walk again!

SALT: Anita is carrying on with her facial and breathing exercises showing more control, better pacing of speech and better swallowing. Her mouth control has improved but she has some clicking in her jaw. I wanted Anita to visit Diana Farragher for facial phsyio because she has had some successful results. The staff will look into the validity of this.

Physiotherapy: Anita is getting more awareness when standing or transferring and is taking more time. She is able to stand for longer with less use of the back slab support and is tolerating more gait work. She is still struggling to plan and set up her movements. There appears to be some subtle changes in sensations in her upper body. She can pull herself up well but needs to work on pushing herself up to standing taking her weight on and straightening the left leg. Anita is now able to walk from the gym to her room without needing to stop and sit. She does this with the assistance of the back slab, quadrapod, a bandage and one assistant. She is better transferring her weight from left to right and has more activity on her left when taking weight. The use of back slab will be phased out to improve muscle activity in the left knee.

It was decided there would be more discussion to clarify with us the short, medium and long term goals. It was explained to me that a provisional discharge date was usually set first then once that was done the community rehabilitation input and care plans could be done. I expressed concerns that the staff were prepared to discharge Anita without knowing what continuing physiotherapy she would be able to receive. It seemed that the process was wrong to me!

She also has her leg fully strapped to support her knee and her foot supported to help it lift at the toe.