2nd September 2008

You will have noticed that I have skipped forward 25 years to 2nd September 2008.  This is the next and last significant September milestone.

 

On Tuesday 2nd September 2008, I was finally discharged home, from hospital and rehabilitation, in a wheelchair after just over 5 months in hospital.

 

I had gone into the Royal Free Hospital, in Hampstead, North London, to have a regular course of treatment.  I had been going in for regular treatment for approximately 5 years. 

 

Initially I had been having Intravenous Immunoglobulin (IVIG), which had been very effective in controlling my Dermatomyositis (DM).  However, as the DM became less active and my Inclusion Body Myositis (IBM) became more active, the IVIG became less effective as a treatment, and towards the end of having it was even perhaps doing more harm than good.  The IVIG was stopped and in its place I was given 3 days of Methylprednisolone (IVMP).

 

When these regular treatments had started, I would drive to the hospital each day, getting there about 7.00 am, so that I could get a disabled parking space, have my treatment and then drive home in the evening.  Although this meant long days, and a drive both ways through the middle of London, it was worth it to be able to sleep in my own bed. 

 

However, this had become to hard and for the last 6 months prior to this visit, I had driven to the hospital, early, on day one, stayed in overnight, and then driven home after the treatment had finished on day three.

 

So it was on Monday 17th March 2008, I parked my car in the hospital car park, and made my way to the ward. 

 

My physical condition at this point was very bad.  My walking was a real effort.  I could barely get out of a chair, even with it being raised, and once I was on my feet, I had to really force myself to stand up straight.  I couldn't get up even very low steps, or kerbs, and constantly had to watch where I was walking for fear of falling.  Although I was only using one walking stick, this was out of stubbornness, and realistically I should have had a frame or walker.

 

When I got to the ward, and had been checked in, I waited to see a doctor before the treatment could start.  Previously the IVIG, treatment had taken up to 8 hours each day, provided things ran smoothly, but invariably there would be problems with my cannula's failing, so treatment could take much longer.  With the IVMP, treatment each day took a little over 2 hours, which meant there was a lot less chance of cannula's failing, but did mean there was a lot of sitting round.

 

The cannulation team came round and put the needle in my arm, and then sometime later the doctor arrived.  As usual she did a quick examination but noticed that I was very much weaker than when I last saw her 6 weeks earlier.  Up to now I had been having treatments of 250mg of IVMP per day.  We agreed that this was no longer being effective and decided to try 500mg of IVMP per day, for three days, and see what happened.  We both knew that we had to do something, and it was worth risking this higher dosage.

 

And so for the next 3 days, I spent a 4 hours, due to the higher dose, having treatment each day, and then would spend the rest of the time reading the paper, walking round the hospital or just resting in a chair.

 

On the Wednesday, the final day of treatment, I wasn't started until after my consultant had seen me in the morning.  He was concerned about my condition, and the increasing weakness, but thought that trying the higher dose of IVMP was worth it.

 

About 4.00 pm, having finishing my treatment and having had the cannula removed, I walked out of the ward, intending to go to my car and drive home.  As I got to the end of the corridor, and was waiting for a left, I started to feel as if I was going to collapse.  I said to my mother, who had come to sit with me for the drive home, that I thought I needed to get back on the ward.

 

I got back to the ward and sat down on my bed.  I explained to the nurse how I was feeling and we agreed that I should stay in overnight and see how I was in the morning.

 

As the evening progressed, the more I moved, the more difficult it was becoming.  During the evening, I remember going to the bathroom and sitting on the toilet, and then having to ask two male nurses to help me stand up from the toilet, and help me back to bed.  That was the last time that I walked on my own.

 

In the morning, when I woke up, I couldn't get myself out of bed, or even to sit on the side of the bed.  I had to be helped up and washed, and then hoisted to use the toilet, and into an arm chair.  And that's where I spent my day.

 

I expected to regain my strength and to eventually be able to walk again, but thought it might take a couple of days.

 

However, things didn't improve, and I needed to be hoisted to get me out of bed and into a chair, where I would spend my day, before being hoisted back into bed at night.

 

The following Wednesday, my consultant came round, and we discussed what had happened.  He admitted that he was at a lose to know what to suggest to help, but that he would go away and find out from some other specialists what, if anything, could be done.  I asked if in the meantime I could have some physiotherapy input, to try to get my legs and body working again.

 

I was then moved from the ward I had been on, to a cardiac ward, which shared some beds with the Rheumatology department.  This was based on the top floor of the hospital, and was south facing.  As the hospital was slightly raised on a hill, this meant that I had amazing views over London.  I could see east to the Thames Barrier, south to the TV mast at Crystal Palace, and the view to the west was restricted by the side of the building, but I could still see as far as Battersea Power Station.  It was this view and the changing skyline of London that kept me going over the next couple of months.

 

The following Wednesday, I was really unhappy.  Nothing had happened, apart from the change of ward, since the previous Wednesday.  I had not seen any doctors and had not seen anybody from the physiotherapy department.  When my consultant came round, I had a right go at him.  I told him that unless he started doing something I felt that I was never going to get out of bed on my own, let alone get out of the hospital.  Although he looked a bit shocked, he certainly got the message.

 

The next day I had a visit from the physiotherapy team, and they agreed to come and see me a couple of times a week.  I explained that I did not feel that was enough and I needed to be seen at least daily, if I was going to have any chance of walking again.  They agreed to come as often as they could but would not really commit themselves.

 

The following Wednesday, I had seen the physiotherapy team twice, and they had tried to get me standing, using a frame that would support my chest and arms, at shoulder height.  Although I had been able to stand, for a very short time, there was no way I could walk with this.

 

When I saw my consultant on his rounds, I firstly apologised for shouting at him the week before.  He said that I had been quite right to do so and that by doing that it had made him realise how serious things were, and also my determination to get walking and back home.

 

He explained that after talking to other doctors and to the neurologists at the National Hospital for Neurology and Neurosurgery, they all felt that there was no drug based treatment that would help get me walking again.  The best thing was for me to have a period of intensive physiotherapy input, but that could not be provided at the Royal Free.  He had found a Neuro-rehabiliation Centre in Wimbledon, called the Wolfson Centre, which would be the ideal place for me to go for this treatment.  Not only was it able to provide the best treatment but also it was closer to home.  The only downside was that I might have to wait up to 3 months to get admitted to the Wolfson Centre as places were so limited and in such high demand.

 

We agreed that this was the place to go, and that in the meantime, he would put pressure on the physiotherapy team in the hospital, to see me more often.  He had already sent off the referral to the Wolfson Centre before coming to see me.

 

It was about this time that one of my friends retrieved my car from the hospital car park, and drove it home.

 

Over the next couple of weeks I was seen almost daily by the hospital physio's, and using a mobile standing hoist, they managed to get me on my feet and walking, to a fashion.  There was no way you could have called it "real" walking, as I was lent forward, and almost walking from a doubled over position, but at least I was using my legs.  Much of the time I was still being hoisted in and out of bed, as there was no alternative, unless 2 or 3 nurses were about to help and support me, which wasn't often.

 

One afternoon I was taken by hospital transport to the Wolfson Centre in Wimbledon, to see what they had to offer and to undergo an assessment by the doctors.  It was very much like an interview where they were assessing your suitability to go there for treatment.  As there was a limited number of places - I think less than 30 - these were really sought after, and the medical team needed to be sure that anyone going there would benefit from the treatments and take advantage of the opportunity afforded.  As I left they told me that they would be happy to take me as a patient, but that there could be a 12 week wait to get admitted.

 

So then it was just a question of waiting for a place to come free at the Wolfson Centre.  My physio sessions continued, but progress stalled and over time, despite me pushing, these went from mostly daily to a couple of times a week.

 

I spent my days reading the newspapers, watching the view over London, chatting with the other patients and reading books.  Memorably I finally got round to reading Philip Pullman's, His Dark Material trilogy, which I really enjoyed.

 

Mum came to visit me almost daily, which meant a long journey across London using the underground.  She never complained once.

 

One day at the end of her visit she asked me if there was anything I wanted, the following day.  For some reason I had a real craving for a packet of Walker's Salt and Vinegar Crisps, so asked her to get me a packet.  After she left, I kept thinking about this packet of crisps and how much I was looking forward to them - which is strange because a couple of hours before I hadn't even thought about them.

 

When mum got home she rang me, as normal to say she was home, and I reminded her about the packet of Walkers Salt and Vinegar Crisps, and mentioned how much I was looking forward to them.

 

The next morning, mum rang me, as she normally did, to say she was leaving and to say what time she expected to get to the hospital.  I again reminded her about the crisps, and she assured me that she hadn't forgotten that I wanted a packet of Walkers Salt and Vinegar Crisps.

 

I knew it would take mum at least a couple of hours to get to the hospital, so I had plenty of time to anticipate eating the crisps and the enjoyment I'd get from their flavour.

 

When mum came in to the ward, she must have known how much I was looking forward to the packet of Walkers Salt and Vinegar Crisps, as she grinned and told me she had got them.

 

She sat down and opened her bag, and pulled out a packet of Walkers Cheese and Onion crisps.  I could have exploded.  How could she get something so simple so wrong.  She was immediately sent down stairs to the hospital shop to buy the correct crisps.

 

But that's just an example of how stupid little things take on such huge importance when you're stuck in hospital, and not able to move about.

 

At the beginning of June, I was transferred to Mayday Hospital in Croydon, as this was much nearer home and also nearer to the Wolfson Centre.  It was nice to have a change of scenery and I knew that this would make things easier for mum.

 

I meet some of the doctors who had treated me here years ago, before they had transferred me to the care of the team at the Royal Free.  They were interested to learn of the changes that had happened and would regularly send student doctors to see me, to learn about my conditions.

 

I had very little physiotherapy input, although I was given my sliding board, so I could now transfer without being hoisted, and I was also given my first wheelchair.

 

Finally, on the 8th July, I was transferred to the Wolfson Centre.  This was a residential neuro-rehabilitation centre, mainly used for people with severe head injuries or strokes.  Here patients had access to physiotherapists, occupational therapists, psychologists, speech therapists.  There was a special kitchen equipped so that they could train people to look after themselves when they got home, and with supervision could learn how to cook safely.  There was even a fully equipped flat that patients could use just before going home, and bring there families to stay with them, in order that they could try out living independently, but knowing that help would be at hand if it was needed.

 

The Wolfson Neuro-rehabilitation Centre

 



At the Wolfson Centre, everything was geared to trying to get you home, with the right amount of equipment and support, and to help you make the transition from a long stay in hospital to being at home.  Once you got up in the morning, you weren't allowed back to bed, unless you were actually ill, in which case they would send you back to hospital.  You had to take responsibility for taking you drugs, although they made sure that you did.  You would eat your meals in a dining room, sat up to a table.  There was a large communal room where there was a big television, but you could also play games, or read a book.  There was also an outside terrace where you could sit out.

 

But the main purpose of being at the Wolfson Centre was to try to get you as mobile as possible.  I had daily one-to-one sessions with the physiotherapists, a gym session of general exercises and stretches, where patients would do as much work on their own, with or without equipment, and daily sessions with the occupational therapists.

 

The Gym

 



It became clear, pretty early on that I wasn't going to be able to stand or walk again.  If this was ever to have been achievable then I really needed intensive physiotherapy input as soon as I was unable to walk. In losing two weeks, when nothing was done we had probably lost the window of opportunity, but realistically even if they had got me walking, it would have only been a temporary respite, before I was back in a wheelchair. 

 

Having accepted this we then had to work towards getting used to doing things from a wheelchair, and using whatever equipment was best for me.  I had a great Occupational Therapist, called Amber, who helped me immensely, learn how to adapt to life in a wheelchair.  She worked really hard to get the right equipment for me to use at home, and took me home on a couple of occasions to discuss what adaptations would be best within the house, and to see how the equipment she had provided could be used at home.

 

When I had first gone into hospital, the football season was still underway, and I thought, "I'll be home before the end of the season." 

 

I then thought, "I'll be home before the Champions League final," and then, "I'll be home before the FA Cup final." 

 

When this didn't happen, I thought, "I'll be home before the start of the European Championships," and then it moved to, "I'll be home before the final of the European Championships." 

 

When this didn't happen, I thought, "I'll be home before the Beijing Olympics start," but by the time these had started I already knew that we were working towards a discharge date of the 2nd September.  I managed to watch lots and lots of the Olympics.  Amber is Australian, so there was lots of banter between us about how well our respective countries were doing, and how many gold medals they were winning.

 

I was sad to leave the Wolfson Centre because there were some great patients there, who had been through a lot and were fighting hard to win their lives back.  The staff had been excellent, and although my goal to walk hadn't been achieved, we had given it the best possible chance, but I was a well prepared for my life in a wheelchair as I could be.

 

But to be honest I was sick of being in hospital, or rehab, and just wanted to get to my own home.  I always think that being in your own home, surrounded by your own things just helps make you feel better.

 

It was a big adjustment to be home, but the work that we had done at the Wolfson Centre, and the equipment they had provided, helped make this easier.  They had also put in place a care package, for carers to come in 3 times a day to help me, which has been invaluable.

 

I can honestly say that on the 2nd September 2008, I could only agree with the old saying, "There is no place like home."