Losing the physical self

Physically Anita is making very good progress from her poor state post Christmas. It’s probably the most rapid improvements that I have seen her make in rehab and is testament to the good help she is getting. She now only requires one carer and is able to assist more and more in her transfers. Her back pain has also diminished greatly. Her mental attitude though at times is just like before Christmas, and not being used to it, I still find it difficult. I have not got to let myself be drawn into her down days, I can’t be responsible for making her happy or her life. To be honest I have some selfishness towards my own life and can only be there offering support and balance. At times there is just a small chink of light that she could see things differently. If I sound negative it is a reflection of how best I handle the situation, not to be emotionally swung too much about her overall state.

There was a meeting today to discuss Anita’s progress and treatment. The back pain is still a problem; it’s hard to tell for certain what it is and it can hinder what she can do in physio. I attended a physio session, she did very well but the twisting required for her to rise to sitting caused a period of agony afterwards. She may have an X-ray on her spine to see if there is something wrong. It is getting better but it is still very slow progress. The heat pad often helps although it causes her skin to flush red.

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.

After a couple of months being OK Anita seems to be at the low point of a new wave of depression. As mentioned previously it comes in waves, she starts to deteriorate gradually then bottoms out, then after a week/weeks she picks up again. She is much worse in the morning than she is later in the day. This is why she hasn’t posted to the blog for a while, I guess she feels it will be too negative so tends to talk about these things in emails to other people out there who are suffering a similar fate. She knows she is having problems coming to terms with what’s happened but it’s a chemical switch that makes things look even bleaker.

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.

After almost eighteen months, I finally go forward!My balance is much better, I use my arm and I walk with a frame! About bloody time! My speech and writing are better and I transfered myself to the toilet myself today. Nothing is easy any more, for thirty years plus I could walk effortlessly, now I can’t stand up! and try going to the toilet when your left side is useless, not easy! I can’t just nip to the loo when I want, I have to wait for my Carer in case I fall, then transfer from my wheelchair to the toilet, having positioned myself first, then I struggle to pull my clothing. Try taking your pants up and down while sitting on the toilet and your left limbs are no help, I tend to crash around a lot at this point and other people are tempted to help me, but they mustn’t as I won’t get better, but its very tempting and I couldn’t watch anyone struggle if I could help!

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!

If you watch this video of Anita making a few steps with me and the quadrapod you can see Anita’s balance problems. Because her brain can’t get the juice to her left leg it fails to support her so she tends to fall front left. For a long time she improved, practicing planting her left foot in the correct position, but you can see she still doesn’t always get it right. She has been walking like this for a long time, to improve her balance she will need a great deal more work. Anita has now been out of rehab for exactly 2 months and in that time I have noted she hasn’t made any progress in her movements at all. Even though Anita has had some physical work from me and her family it has been very difficult to keep her going in the right direction. Now more than ever I know that what she has done so far is largely as a result of the therapy sessions she had attended in rehab. For Anita to achieve more freedom she needs to be more mobile, more safely. This week I had to answer an alarm call at work because Anita tried to transfer herself to the toilet and fell to the ground at home. Below are some thoughts on patient potential.

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!

I thought it would be useful for the record to have some video of Anita’s arm movement. You can click on the thumbnails to view the videos. It helps to demonstrate some of the difficulties involved. The first four videos demonstrate reaching for face cream and deodrant, the last video shows that Anita can reach up to her right shoulder now. It has taken a long time for her to go from not moving her arm at all to where she is now in the video. She is still along way from having any real functional gains. When I am supporting the arm I am only supposed to take the weight of it. Although it appears that I am doing the movement I am actually trying to keep that to a minimum! When trying to retrieve something as simple as the toiletries featured she has not only to contend with pushing her arm outward but she has to open the fingers and grab. When it’s as tough as this it becomes apparent just how many actions are in the one thing. She needs a perception of where the object is in space in relation to her hand. She needs to do several things at once which makes it hard for the brain to process. The right pressure has to be applied to objects to get the correct grip.

Brain injury is a very very hard thing to be rehabilitated from. I have made a very short video of Anita transferring from an electric wheelchair to the bed. If you click on the thumbnail it should open or download to your hard drive. This is in her room at Rayners hedge and will hopefully be a useful record of her progress for the future. It may not look much to most people out there who take things for granted but this is were she is at after many, many hours of physio and over 14 months of hospital. As you can see from the video Anita has more power and strength to make this transfer but still lacks in the area of control.

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.

I have been back at Rayners Hedge, the rehabilitation hospital, for two weeks now and I must say I am making progress, but slowly as usual! I can now walk for 20 metres with a quadropod (four legged walking stick) and one physiotherapist to catch me if I fall. I can stand without holding on to anything for the count of ten before I fall forward and head butt my physiotherapist!! My hand is getting better as well and has much more movement than before. I have a new splint for my hand that is supposed to straighten my thumb.

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!

The last couple of days have seen a little more movement in Anita’s left arm. She is able to now put the brake on and off her wheelchair. She has done a lot of work on it recently. Is it down to those exercises or small changes in the brain? She was also able to touch her chin with her left finger for the first time. She is trying to bring the hand into use more and more.

This evening I attended a meeting with the Rehabilitation Doctor, the Physio and the OT. After 6 months in rehab the Doctor was probably at a stage that he could give some kind of prognosis. I had been asking a lot of questions about why certain goals were being set, if Anita was getting enough physio and if the plans were ambitious enough.

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!