Diabetic Retinal Screening

Firstly, can I just say thank you to all those people who read my last blog and sent messages wishing my mother well after her visit to hospital.  I'm glad to say that after a week of not doing very much - something she finds incredibly difficult - she is feeling much better, although she is still a long way from her normal self.

 

Yesterday, I had my annual appointment with the Diabetic Retinal Screening Service at my local hospital, Croydon University Hospital, formally Mayday Hospital.

 

When I usually go to hospital I get the patient transport services to collect me and bring me home, but the transport services at this hospital refuse to take me in my powered wheelchair, and I am then reliant on porters having to push me round.  This is hugely frustrating and involves lots of waiting round for people to come and push me.

 

As I only go to this hospital about 3 times a year I have decided that I'll try and be a bit more independent and go by taxi, in my powered wheelchair.  In London, there is a Taxicard scheme for disabled people, where the various boroughs provide subsidised travel in London Black cabs, for destinations within London.  Under the scheme the minimum fare and the mileage rate you pay is lower than normal.  You can only do a set number of journeys a year.  You can pre-book your cab on the phone or online, and they will keep you informed if there are any delays in the cab getting to you. It is an excellent scheme.

 

Sadly, the value of this scheme is slowly being eroded as part of the cut back in local services.  It isn't hugely expensive for local authorities to run but it isn't seen as a priority.  Therefore its easy to make changes but these hit the people who need it the most.  Recently the minimum fare has increased from £1.50 to £2.50.  In addition to this the number of journeys has been reduced from 104 per year, which is one trip there and one back per week, to 74 journeys a year.  This reduction in journeys means many people are now limited in being able to get out into the community to go to community centres, visit friends and relatives, and generally do the things they would normally do.  Its just another impact of the Governments austerity measures and an example of how these always seem to hit the most vulnerable.

 

Anyway, getting off my soapbox, I had booked the cab the day before as I needed a cab with a ramp that was able to take my powered wheelchair.  The latest Black cabs have slightly wider doors and more room inside, which means even the larger wheelchairs ands scooters can be accommodated in them.

 

Wheelchair access into a London Cab

 

The cab was about 15 minutes late getting to me, but when you book they warn you to allow 15 minutes either side of your pick up time, to allow for hold ups.  As I know there are some major road works locally, I had allowed a bit of extra time.

 

We got to the hospital with about 20 minutes to spare before my appointment.  After getting out of the cab and paying - the journey should have been about £28.00, but with the subside was £17.50 - I made my way towards the screening department.

 

The front of the hospital

 

The back of the hospital

 

The screening department is in the old section of the hospital - on the second floor in the upper right hand windows as you look at the picture above.  The usual lift was having some maintenance work done on it, so I had to go to another lift at the other end of the corridor.  When I got to the lift I couldn't reach the button to call the lift.  Fortunately, a nice lady noticed my plight and came and called the lift, and then when it came pushed the button inside for the second floor.

 

I checked in at reception and was called in almost immediately.  For those of you unfamiliar with the Diabetic Retinal Screening process, the first thing they do is put some eye drops in.  The worst thing about this is not the fact that the eye drops sting - this only last a short time - but the fact that they make your pupils dilate, so that they can take a good picture of the back of your eye.  This means that more light than normal is going into your eye, and on sunny days this can be really painful.  Fortunately, yesterday was wet and cloudy.

 

After having the eye drops put in, I sat in the waiting room, whilst the eye drops take full effect.  This took about 20 minutes, and then I was called in again.  They then take pictures of the back of your eye, which they bring up on their computer and can check for any retinal damage.  Mine was all clear, so I won't need to go back until next year.

 

Having finished I made my way back to the lift.  I could reach the button to call the lift, but once inside, and with the door closed, I could not reach the buttons to say which floor I needed to go to.  I then had to sit, trapped in the lift, and wait until either someone on another floor called the lift, or someone on my floor came to use the lift.  I couldn't even reach the button to open the doors to get out.

 

After about 5 minutes of sitting there, someone must have called the lift on the ground floor, as we started to go down, and I was able to get out.

 

I then needed to find a disabled toilet.  The one at the front of the hospital was locked, and you needed to get a key from reception.  When I got to reception there was no one there.  I then remembered there was a disabled toilet in the Physiotherapy Department.  I got into the toilet fine, by pushing the door open with my chair, but when I can to come out I found that the door had a return bar on it, which meant that I couldn't get out.  I managed to get the door open a bit and the called someone as they went past to help hold the door.

 

The lady who came to my aid was a physio called Mary, who had been my physio when I first came out of hospital about 5 years ago.  We had a nice chat, and she was pleased to hear about me going to NHNN and the progress I was making with standing.

 

I then went back to reception and called for a taxi, and after about a 30 minute wait, as a wheelchair accessible cab wasn't in the area, I was on my way home.

 

A Union Jack Cab - like the one that took me home

 

I found that going to the hospital in the cab was very much better than going using the hospital transport.  In all I was probably out for about 3 hours, whereas in the transport I'd have been out most of the day.

 

When I spoke to a friend in the evening I told him I had been for my Diabetic Retinal Scan, and he responded that he wasn't aware that diabetes caused problems in that area, and then asked how did they manage to do the scan.  I then realised that he must have misheard me, and pointed out that it was a retinal scan, not rectal!!!!!!!









I often say to people that being ill is easy.

I often say to people that being ill is easy. 

 

I get all the attention from doctors, especially when they are interested in talking to me about my conditions, so they can learn about something they may not have seen before. 

 

I get all the attention from the nurses, physio's and OT's. 

 

I get all the attention from the people from Social Services. 

 

I get all the attention from my carers.

 

But what I always think must be hard is to have to watch someone you love be ill.  Whether you are a parent, husband or wife, grandparent or child, looking after another family member or a person you love, be ill and have to watch helplessly by, must be so very hard.

 

My mother lives with me, and she has always been there for me when I have needed her.  There has never been any question of her not helping, and she selflessly looks after me, without complaint.  I always wonder if somewhere, quietly, there is a piece of her crying to see her son in a wheelchair and need so much help.  She'd never show it, and she'd certainly never say it.

 

Over the weekend, the tables were turned.

 

Sunday morning started just like any other day.  Margaret, my carer, came and got me up about 8.00 am.  After a shower, dressing and breakfast, I was looking forward to a fairly normal Sunday, with time on my computer in the morning and then watching England against India in the ICC Champions Trophy cricket final in the afternoon.

 

Mum planned to make some bread and biscuits, and then watch the cricket.

Oh the best laid plans.........................

About 10.00 am, and I know the time as I had just looked at the time on my computer, Mum called out to me from the kitchen.  I went through and found her sat on a low stool in the kitchen, looking very unwell.  I asked her if she was OK - dumb question - and she started to pass out.

I quickly tried to grab hold of her, to stop her falling onto the floor, as she toppled over to her right side.  I managed to stop her falling but her head was resting on the work surface next to her, and if I let go I knew she'd be on the floor.  I managed to keep hold of her with one hand and fish out my mobile phone with the other, and then phone '999'.  Typical, I had no signal, not even enough to make an emergency call.

After about a minute, Mum started to come round, but was very confused and disorientated.  I managed to get her sat up right and talked to her, to reassure that she was alright and where she was.  After a couple of minutes she seemed more aware of where she was, and more able to sit up on her own.

I left her quickly to get the house phone and call an ambulance.  The operator said that they were very busy and that an ambulance could take up to 40 minutes, but someone would be with me as quickly as possible.  After speaking to the operator, they ask you to listen to a recorded message telling you do's and don't's, whilst you wait for the ambulance.  By the time this had finished, a paramedic had pulled up outside.

I got to the door and let him in.  Mum had moved herself to one of the armchairs in the living-room, but was still very confused, and she still felt very unwell.

I explained to the paramedic what had happened, and told him a little about Mum's medical history - for an 81 year old she is remarkably fit -  and about the medication she is taking.  He then proceeded to check her blood pressure, blood oxygen level, blood sugars and temperature.  These were all good but her heart rate was a bit slow, but we weren't sure if this was normal for Mum.  He then got her wired up to his mobile ECG machine and ran one of these.  Again this was pretty much normal.

The paramedic said that he thought it best if Mum goes to hospital to be seen by a doctor.  I knew Mum would absolutely hate the thought that I had phoned for an ambulance, but the idea that she needed to go to the hospital.......I was in big trouble now.

About an hour after the paramedic arrived, the ambulance pulled up outside.  The first thing the crew said as they came in was, "Is that bread your cooking?"  And one of the guys noticing the loaf had finished cooking went round and took it out of the machine, whilst his mate was told about Mum and what had happened with her.

In the meantime I managed to put a few things into a bag, including her medication, to take with her to the hospital.

Mum was still feeling very ill, and had tried to be sick at one point, but had nothing to bring up.  She was given a glass of water and had a few sips.

The ambulance crew then ran a new set of observations, and a new ECG.  They then checked Mum's blood pressure, once when sitting and then again standing.  They then got her into a wheelchair, wrapped her in a blanket and took her out to the ambulance.  I knew she must be really ill, as she hadn't once protested about being taken away.

As I watched them put her in the back of the ambulance, sat in the chair, wrapped up in the red blanket, I thought - for the first time - how small and frail she looked.  I could have cried!

Just before 12.00 the ambulance pulled away.

The rest of the day is a bit of a blur of concern and worry.  My good friend Paul came round and help clear up the kitchen from all the cooking bits.  Margaret came and was upset to hear about Mum.

I spent most of the afternoon waiting for the phone to ring, hoping to hear what was happening with Mum.  About 5.00 pm I finally couldn't wait any longer and phoned up A&E.  I was told she had been moved to an Observation Ward and given the number to call.

The nurse on the ward sounded very nice and advised that Mum was OK but they were just keeping an eye on her.  They needed to do a further blood test at 7.00 pm, which would take 2 hours before they had the results, and then they would decide whether to admit her, or send her home.

I rang Mum on her mobile, and much to my relief, she sounded much brighter and alert.  She said she was feeling a lot better, but typical Mum, she just wanted to know if I was alright.  I told her not to worry about me, that I had ordered takeaway for dinner and that Margaret would come late to put me to bed.

Then there was more waiting until about 9.30 pm, when I phoned Mum, who was waiting to see the doctor to find out if she could come home.  She had been given dinner, which was some sort of chicken curry, which Mum hates.  She had only eaten a bit and had been sick, but that was more to do with the fact that it was curry, rather than the fact she was ill.  However she did say she felt better for having eaten something.

Paul had said he would pick her up and bring her home, regardless of the time, but I suggested to Mum that it might be best given the time if she just stayed there for the night.

Still not having heard anything, I rang the ward about 10.15 pm, and spoke to a very abrupt nurse.  She seemed surprised that I wanted to know what was happening, but she went and asked the doctor, who agreed Mum could come home.  I asked for directions to the ward and then told the nurse that I would get someone to pick up Mum as soon as possible.

I rang Paul, and he left to pick her up.

Margaret came about 10.40 pm to put me to bed, and just as she was finishing, Mum, with Paul and his wife Sharon, came in.

 

It was a huge relief to see her, and to see her looking much more like her normal self.  (I could have cried - again!)  She had a piece of bread and a cup of tea, whilst she chatted to me, before she went  to bed.

I was pleased and relieved to have her home.  There was no real conclusion as to why she had fainted and what had caused it.  Mum saw her GP first thing Monday morning, and he advised her to rest as much as possible, and to make sure she drinks enough fluids.  Although she has been tired, she is feeling better each day.

Mum has always been incredibly active.  At 81, she is always on the go, and never seems to sit down for long.  Even now she finds it difficult to sit still, if she thinks something needs doing.  How do you stop someone like that from doing things?

It was only one day but I can honestly say, I'd much rather be ill than have to go through watching Mum be ill like that again.  It was truly, a horrible day and not one I want to repeat anytime soon.

A very big thank you to the paramedic and ambulance crew, who were really excellent, to the doctors and nurses at the hospital, who looked after Mum so well, to Margaret, who changed her schedule to help me during the day, and especially to Paul for being such a great friend to Mum and me.

And a footnote to this day, it always surprises me and upsets me - and bloody annoys me - how some people in my family react to what happened.

After Mum had been taken off in the ambulance, I rang Paul and he could not have been more willing to help.

I then rang my eldest sister, Sue, who was really concerned, and offered to come down to help - she lives in Hull.  We agreed that she should do nothing until we knew more about Mum's condition.

I rang my next sister, Jane, who was out, so I left a message on her answering machine asking her to call me urgently about Mum.  I then rang her mobile, but this was turned off - she is one of those people who doesn't like mobiles, but has one which she never turns on.

My brother, Simon, lives in Australia, and by the time Mum had gone it would be late there, and I didn't have much to tell him, so rather than wake him, I decided to wait until I knew more about Mum, and call him in the morning.  When I eventually caught up with him via email on Monday, he wanted to know how she was and said that he will phone as soon as he in back home.

Sue rang in the afternoon to see how I was and to say than she would come down next weekend in any event, but could come down immediately if needs be.

About 6.30 pm, I rang Jane and again got the answer machine.  I tried her mobile, which was again switched off.  I then rang Sue to tell her about my conversation with the ward and Mum earlier, and that she sounded much better.

Finally when I got off the phone, Jane rang me back.  She didn't say anything about my message but said she had been out and when she had got back in, she had gone for a nap, before getting something to eat.  When I told her Mum was in hospital, her response was, "I thought it must be something like that."  I was speechless.  She'd obviously got my message but having a nap was more important to her than phoning about Mum.  She never offered to come and help.

The next day when Jane spoke to Mum it was almost as if because Mum was home there can't be anything wrong.  She never offered to help and doubt she even asked if Mum needed any.

Sadly this is typical of her.  She doesn't seem to remember all the times Mum was there for her, all the help Mum gave her after she had been involved in a car accident and was recovering for her whiplash injuries.  She just thinks of herself.

I know we can't choose our families, but would anyone like to have my sister, Jane?

The Clinical Neuroscience Centre

On Tuesday, I had my annual appointment at the Clinical Neuroscience Centre at 33 Queens Square, London.  This is a specialist centre, about a 100 yards down the road from the National Hospital for Neurology and Neurosurgery.

 

Clinical Neuroscience Centre

 

Back in 2009, when I first heard about the Arimoclomol drug trial, I asked my consultant to refer me, to see if I could be included.  I went along to the Muscle Clinic, which is held here, under Prof. Mike Hanna.  Some of you may have been lucky enough to have meet him, or know of him through his half and full marathon running fund raising exploits.

 

I actually saw a Dr. Matt Parton, one of the senior consultants in Prof. Hanna's team.  During our first meeting, he went over my full medical history, and then conducted the routine muscle tests, which I'm sure most of you will be familiar with, where they ask you to push or pull against them so they can gauge what strength you have in your muscles.

 

Dr. Matt Parton

 

I then discussed with him the possibility of me being included in the drugs trial.  I already knew that my medical history wasn't straight forward, and that the likelihood was that they were only going to be looking for patients with straight forward IBM to be included.  Therefore I wasn't surprised that he said he would not be putting me forward for the trial.

 

However, he than went on to question my diagnosis of IBM.  There are a few things about my condition which do not follow the 'normal ' pattern of IBM.  Firstly I was diagnosed at age 34.  The weakness in my muscles involves more of the proximal muscles, those near the trunk of the body, whereas normally you would expect more weakness in the distal muscles, those in the hands and feet.  I have had periods of progressive weakness but generally I remain reasonably stable.

 

I realise that we all present differently and that different people will have weakness in different areas of their bodies, at different ages, that impact on them in different ways.  I had always assumed that this would explain why some of what I had was different from other people.

 

We discussed my original muscle biopsies, which were used to confirm the diagnosis of IBM.  My first biopsy, for this diagnosis, was taken from my left triceps muscle, but the results were inconclusive.  Another biopsy was then taken from my right thigh, and this was studied by my consultant, Prof. C Denton, a neurologist, Prof. A Schapira, and Dame Prof. Carol Black, Medical Director at the Royal Free Hospital and later President of the Royal College of Physicians - 3 more high powered doctors I think you would struggle to find.  Based on their review of the muscle tissue, the diagnosis of IBM was confirmed.

 

Dr. Parton, asked if I would give consent for these tissue samples to be re-examined by a specialist diagnostic centre based in Newcastle.  Also he wanted to take some blood, so that this could be DNA tested, and some stored for any future testing, as he wanted to test the diagnosis.  He went on to say, that in his opinion, my condition was more likely to be a Myofibrillar Myopathy, part of a group of disorders called muscular dystrophy's that affect muscle function and cause weakness.

 

He said that this process would take a long time and might at the end of the day result in nothing new being confirmed.  He advised that if it was as he suspected, a Myofibrillar Myopathy, it would be one of the rarer and more difficult ones to confirm the diagnosis on, and that there are a number of these conditions where there is currently no clinical test to be able to confirm the diagnosis.

 

However in terms of my treatment and prognosis, nothing would really change.  As with IBM, there is no confirmed treatment for these conditions, and the long-term prognosis is that the patient will get progressively weaker.  He did not intend to change my current treatment, although depending on what was found, he might recommend some small changes, as my current drug regime seems to be working for me.

 

I gave my consent for him to pursue the tests and we agreed to see each other in 12 months.

 

I went away from this appointment, not surprised about the drugs trial, but a little disconcerted about the possibility that the original diagnosis might have been wrong.  I realised that in real terms nothing would change either in terms of treatment or the longer term outlook how the condition would progress, but for 9 years I had been told I had IBM.  I knew what that meant, and although it might not be what I wanted, I was comfortable with this diagnosis and condition.

 

In 2010, we meet again, but the muscle tissue sample had not been located.  Some DNA testing had been done on the blood samples but nothing had been confirmed.

 

In 2011, we meet again.  The muscle tissue sample had now gone to Newcastle, and was still being looked at.  The DNA testing on the blood was continuing, and a number of conditions had been eliminated.

 

In 2012, the results of the review of the muscle tissue were in.  Although the tissue samples showed markers consistent with IBM, they were not considered to be conclusive.  No other conditions could be diagnosed from these samples.  The only way forward from that side, would be if I consented to another muscle biopsy.  The problem with that, would be finding a muscle that was in good enough condition to get a reasonable sample from.  After discussion, we agreed that I did not have enough muscle to get a decent sample.

 

All the DNA testing had been completed on my blood samples, and had been unable to confirm any known condition, for which there is currently a test.  This therefore leaves us with conditions for which there is currently no test.  They have some of my blood in storage and as new DNA tests are developed they will continue to test.

 

So where does that leave me.  I have a confirmed diagnosis of IBM from 2000, through my team at the Royal Free Hospital, and another doctor who thinks this is wrong and suspects a diagnosis of Myofibrillar Myopathy, which he can't confirm due to the limitations of current diagnostic testing.

 

Dr. Parton is without doubt an expert in his field, Neurology, and I have no reason to think that he might not be right in what he is saying.  However, my original diagnosis was confirmed by 3 of the best and most knowledgeable doctors you could hope to find.

 

And actually, now I'm not to bothered.  Although initially I found it unsettling to have been told I have one thing, and then told it might be something else, it's not actually going to make any difference.  I haven't missed out on treatments that might have improved my physical condition, and the long term outlook hasn't changed.  What does it matter what I call it?  If you think doctors don't know about IBM, you try mentioning Myofibrillar Myopathy, and just watch the blank expressions.

 

So on Tuesday, I made my trip to London to meet Dr. Parton again.  This time he had a student doctor sat in with him, and Dr. Parton made good use of me as a teaching tool, to show the student about muscle weakness and how muscles waste with these conditions.  I often allow student doctors to talk TO or examine me, when I'm at various hospitals, as being able to see, examine and talk to a real patient must be the best way to learn, especially about something that's unusual.

 

I talked a bit about my recent trips to NHNN and the help that the physio's were giving me with standing.  The student seemed surprised that after 4 years in a wheelchair, I might still be able to stand, albeit with the assistance of a standing frame.  I said that I had always thought that I could stand but just needed someone to give me the opportunity, and that if I can do things now that might improve my muscles, this has to be of benefit to me longer term, in retaining my independence. 

 

Dr. Parton, said that it was one of the biggest mistakes made that if you have a progressive condition to think that the only thing that will happen is that your condition will decline.  That actually you can often make improvements, even if only in the short-term, which then mean, when the patient's muscles start to decline they are starting from a better position than if they had done nothing.

 

We went through the usual muscle tests, and then he went back through the results from the previous appointments to see how these compared.  Based on the results from the tests when I originally went in 2009, and those done on Tuesday, my muscle strength is pretty much unchanged.  This will be due to the regular physiotherapy I have at home, the physio input at NHNN, and to a small exercise regime I follow, where I do small exercises from my chair everyday.

 

I'll see Dr. Parton again in a years time.

 

The journey home was interesting as the engine on the hospital transport ambulance kept cutting out as we were approaching home.  At one point, about a mile from home, I thought that we had broken down completely, but the driver got us going again and dropped me off at about 7.30 pm.  However there was another patient still in the ambulance, who had to go about another 15 miles further on to get home, so I really hope he got home, in a reasonable time.

Just for Christine - What the hell is Fresh Mashed Potato all about?

Yesterday Christine put up a post on Facebook about freezing left over mashed potato for later use.

 

Firstly, I'm confused how there would be left over mashed potato.  I may be a bit greedy, but I'd just eat it all.

 

Secondly, it reminded me of something I wrote some years back about being in a queue in the supermarket and seeing what a lady had in her shopping trolley.  Here's the piece:

 

"I was in Tesco's today at the check out waiting to be served when I noticed that the women in the queue next to mine has two trays to fresh mashed potato in with her shopping trolley.

 

Now you can't blame Tesco's for trying it on because obviously there are people out there thick enough to buy it but why would you?

 

How difficult is it to boil some potatoes, then drain them off, add some milk and butter, and mash them - there you are a free cookery lesson as well today. Have we really become so lazy that we can't even make mashed potato from scratch. Are peoples lives so busy that they can't spare the time to cook mashed potato.

 

And what part is actually fresh. This has been prepared in some factory somewhere and then transported to the store and put on the shelves before this women has picked it up. Surely she isn't stupid enough to think that this was all done that very morning for her convenience.

 

This women also had packets to pre-cut vegetables - how f**king stupid and lazy is she. Does she not possess a knife - on second thoughts it's probably best that she isn't around sharp objects.

 

Her bill was pretty big but couldn't she think that if she was just prepared to cut up her own vegetables and mash her own potatoes she would drastically reduce her bill and actually her food might taste a little better because its not all pre-processed shit.

 

What's next pre-eaten food?"

Tesco's Fresh Mashed Potato

 

You may have noticed a certain amount of sarcasm towards this lady and her shopping, but I was amazed at the number of people, who up to that point I had thought of as being reasonably sensible people, who commented what a great product it was.

 

I'm glad to say that Tesco's no longer sell this.  But now we have Tesco Fluffy Mashed Potato, which is part of their frozen vegetable range.  I can't help thinking you'd need to be some sort of vegetable to buy the stuff.

 

 

Tesco Fluffy Mashed Potato

 

How can it possibly be 'fluffy' coming out of the freezer. And look at the cooking instructions:

 

"Hob

Time: 8-10mins

Instructions: For best results cook from frozen. Remove from packaging. Empty required amount into a saucepan and cook over a moderate heat for 8-10 mins stirring constantly until piping hot. If required, add water or milk as required during cooking to achieve the desired texture. Serve immediately."

 

Well, I'm glad they tell you to take it out of the packaging, because I expect quite a few people would have been munching on that plastic bag otherwise.  And aren't those instructions basically the instructions you'd need to just cook mashed potato for yourself, albeit that you'd need to remember to peel the potatoes.

 

And the price of this bag of deliciousness?  Almost the same as buying a bag of potatoes, which would go further, would taste better and from which you could make your own mashed potato, or roast potato, or jacket potato, or any other type of potato you might fancy.  And you wouldn't be feeding the profits of the supermarket chains, who must be laughing themselves sore, from the gullibility of some shoppers.

 

There was a survey the other day that said a third of all primary children in the UK, thought that cheese grows on a plant, and thought that Fish Fingers were made from chicken or pork.  Worse still a high percentage of secondary school children thought that tomatoes were a root vegetable.

 

If we are going to be taking packets of food like this mashed potato product out of the freezer to use because its convenient, isn't it any wonder that children grow up without any idea where food actually comes from and how its produced.  And surely, this sort of product cannot taste anything like food that has been prepared properly from scratch.



A day out at the Royal Free Hospital

Yesterday was one of my regular visits to the Royal Free Hospital at Hampstead, North London.

 

The day started at 5.30 am when my carer, Margaret, came to get me up and ready for the day.

 

Usually Margaret doesn't come to me until about 8.00 to 8.30 am, which is later than I would really  like her to come, but she has young children who she likes to get up and ready for school before coming, so it is sometimes difficult for her to be earlier.  I'm prepared to put up with getting up a bit later because Margaret is so good at her job.  I can always rely on her, she does a good consistent job and will often do extra little things for Mum and me, outside of her normal caring role.  But when I have an appointment or am going out, she will come early so I am ready for my day.  This morning she will come to me then go home and get her children up, before going our to do the rest of her calls.

 

Anyway, Margaret has me up washed and dressed by 6.00 am and this means I can have my pills, breakfast and a cup of tea before the transport turns up.  The regular driver, who picks me up lives locally and can come from 6.00 am onwards but he'll wait for me to have my breakfast, as officially he shouldn't be here before 7.00 am but if we get going early we can avoid lots of the traffic through London before the rush hour starts.

 

The driver, Dave arrives at 6.40 am, and I am all ready, so once he has strapped my wheelchair down we get on our way.  This morning we have to pick up another patient in Crystal Palace, so we go a slightly different way to normal.  We go straight up through Croydon, to Thornton Heath and then pass the home of English football, Selhurst Park, before going up to Crystal Place and collecting the other patient.

The Home of English Football - Selhurst Park

 

Once we have picked him up we head up to Herne Hill, avoid Brixton and come out just south of the Oval Cricket Ground, and then head along the south bank of the river Thames before crossing at Waterloo Bridge.  The view was no where near as good as this picture as it was a miserable day.

 





 The view East from Waterloo Bridge

 

We go through the Strand Tunnel and then up through Holborn and onto Camden Town and up to the Hospital on the outskirts of Hampstead Heath.

 

The Royal Free Hospital

 

Dave is a very friendly driver and chats to us both most of the way up to the hospital.  The guy we picked up is a 31 year old guy who has been very ill but is now on the road to recovery.  He has a great outlook on life and whether he has developed this since being ill or has always had it, he sounds like he has the right attitude to get his life back on track, and to do the very best by his young son.  I wish him well.

 

We arrive at the hospital just before 8.30 am, so it has been a very quick journey and the traffic has been good.  After my customary visit to the toilet I make my way to the ward.

 

The ward I go to is on the 2nd floor and is called PITU, which stands for Planned Investigations and Treatment Unit.  It is a ward for people like me who are going in for the day, or a few days, whether for treatment or small investigations or tests, but don't need to stay in hospital overnight.  This means when I book my next date for treatment, I know that I'll be able to go in that day, because there no patients staying in long-term.  Most of the patients receive their treatments in a recliner chair, with only a few beds available for people who specifically need them for minor procedures.  This ward has been in operation for about 6 years, and it seems to work very well.  Certainly in all that time, I've never had a treatment date cancelled, and I don't have the stress of phoning to see if beds are available before going in and the uncertainty of when I might get in.  However it is a very busy ward and the nurses have to work very hard.

 

I book in and they make a space for me, as I stay in my wheelchair, which is easier than being hoisted into their chairs, and means I can move around on my own.  Once I have been helped out of my fleece, I go to queue up to get my cannula put in and have a blood test.  Usually, I'm a bit later getting to the hospital, so there is a long queue of people waiting for their cannula's, but this morning there is only one person ahead of me. 

 

As I wait a nurse called Tinesha, comes and congratulates me on Crystal Palaces promotion to the Premier League.  We always have a good chat about football.

 

The guy ahead of me is seen quickly, and in I go.  I've seen this Phlebotonist before and know he is very good.  He finds a vein easily and gets the cannula in and draws off the necessary blood for the tests, and then secures the cannula.  I'm out in 10 minutes and already there is a queue of 4 or 5 people.

 

When I get back to my space one of the nursing assistant, Steph, checks my blood pressure, pulse, temperature and blood oxygen levels, which are all good.  She then gives me the swabs for checking MRSA, which they do to all patients.  One is a nasal swab, and the other is a groin swab, so I go to the toilet to do this, which is fortunate as I need to pee again.  I can see it's going to be one of those mornings.

 

I'm offered a cup of tea, and the lady knows me well and just checks its still no sugar and very strong, with only a little milk.

 

After that I start reading my book whilst I wait for my drugs.  I use a Kindle, as I find this much easier to handle that books, and is much more convenient to carry.  When I first got my Kindle one of my friends sent me approximately 750 'free' books.  There is a good range of books many by authors I have never read before, over a good range of genre.  Currently I am reading the Alex Cross series of books by James Patterson, an author I'd never read before.  They are very easy to read, and very fast paced.  I am coming to the end of 'Roses are Red' and finish the last 80 or so pages, and easy start the next in the series, 'Violets are Blue'.

 

About 9.30 am, Karen, one of the nurses comes with my drugs - 250mg of Methylprednisolone - and hooks me up.  They are very good on the ward.  The night before you come in they get a doctor to do all the prescriptions for the patients coming in the next day, so they can have these ready early next morning.  It only takes an hour for this to go through, and then 10 minutes for the saline flush, and I'll be finished.

 

Once it has all gone through, Lorna, another of the nurses comes and  disconnects me and takes the cannula out.  I make a huge fuss about her pulling the hairs on my arm out as she takes the dressing off, which makes her laugh - a lot!  She knows I'm only joking.

 

I've known Lorna, and most of the other nurses for years.  I have been coming to this hospital for about 15 years and have seen my consultant, Prof. Chris Denton, for all that time, and although some of his team change, there are some people who have been with him all that time.  The nurses who work on PITU ward, are mostly the same nurses who used to work on the specific Rheumatology ward, but this has now been closed as most of the patients can be seen on PITU, or if they require longer stays as in-patients, they share a ward with the cardiac unit.

 

Prof. Chris Denton - a nicer doctor you will not meet

 

I tell Lorna about my recent trips to NHNN and about standing there with the physio's in the standing frame.  She rushes off and tells all the nurses and very soon I seem to be surrounded by all the nurses from the ward, who are jumping up and down, smiling, clapping and shaking my hand.  Most embarrassing.

 

It is now just before 11.00 am and Lorna tells me that the doctors want to see me and they will be there soon.  Usually I only see the doctors if I need to, and we have an arrangement where I call the Professor's secretary and she puts me on his list, or if they want to see me.  I'm first on their list to be seen.

 

I have another toilet break whilst I wait.

 

Just after 12.00 they turn up and call me in.  Unfortunately the Professor is not there, but I see his number 2, Dr Wong, who is a really nice guy.  He asks me how I am, and we discuss a few things. 

 

He was the doctor who referred me to the Dermatologist in late 2011, about the problems I was having with the skin on my legs and the swelling in my legs and feet.  He was very interested to hear that having the pressure stocking had made so much difference to me, and suggested to his colleagues there that in future they should be more pro-active in referring people if they have similar problems.  I said that from my experience, the Dermatologists in my local hospital did not know enough about my conditions or how they might effect me.  However as soon as I saw the Dermatology Consultant at the Royal Free, she recognised the problem straight away and knew the solution was the pressure stockings.  In my opinion that was because she was more aware of my conditions.

 

I then told Dr Wong about my trips to NHNN and the standing with the physio's.  Although the response was not quite so exuberant as with the nurses, there was still a lot on happy faces about.

 

Having seen the Doctors, I went and got my jacket back on, off to the toilet, again, and then headed off to the transport lounge to await an ambulance home.

 

Usually the transport lounge is a pretty dull place, full of people who had had long days of treatment, tests or clinic appointments, who are worn out waiting to get home. No one speaks, except to moan about how long they have to wait, and its quite a horrible place to sit.  Anyway after sitting there for about 10 minutes an old lady comes and just sits there talking to everyone, cracking jokes, and generally having a good time.

 

I quietly thought to myself that she'll be in my ambulance home, and then she mentioned where she lived, and its about 5 miles down the road from me. 

 

About 1.30 pm a driver came in and asked me if I can get into one of the smaller vans.  I said I could so he said he'd take me.  I went off to the toilet, AGAIN, and then went out to meet him at the front of the hospital.  I was fully expecting to see the old lady there, but there was no sign of her.  So I said to the driver that there was someone in the transport lounge waiting to go in the same direction, and he went back to see if she could come with us.  They were only going to put her in another ambulance.

 

So we had a jolly trip home, with a few good laughs as we went.  It makes a nice change to have company both ways as usually I have the ambulances to myself, and to have people who are ready to have a chart and a laugh.  It certainly makes the journeys seem much quicker.

 

I can't say what route we used to get home as the only draw back with the smaller vans is that my heads touching the ceiling and the windows are so low, all I can see is the road down by the side of the van.

 

Anyway, we made good time and were home about 3.30 pm.  And even better it managed to stop raining so I could get out of the ambulance and up the drive, indoors in the dry.

 

After going to the toilet, notice a theme here, I get into my armchair, and following a cup of tea and a couple of ginger biscuits, I'm out like a light.

 

I wake up about 5.30 pm and get back into my wheelchair, and get ready for dinner.  On days when I've been out like this, because we can't always predict what time I'll be home, Mum usually goes over the Chip Shop.  So tonight I have Steak and Kidney Pie and large chips, and shock horror, I can't finish all my chips.  That's unheard of.

 

After dinner, my carer, Shola, who usually comes to me in the evening, comes at about 7.15 pm.  She takes me to the toilet and then gets me ready of bed, and then puts me in my armchair, so I can watch television.  Whilst Shola is taking off my pressure stockings, she notices I have a blood shot eye.  I accuse her of having hit me whilst I wasn't looking. 

 

This must have happened whilst I was asleep this afternoon, as no one mentioned it at the hospital.  Anyway it's not to bad.

 

My 'Evil' Eye

 

After watching some television and catching up on the news, Mum helps me to bed at 10.30 pm.  It's been a long day but a worthwhile one.

 

I go for these treatments every 6 weeks, but usually try to see other doctors from the other teams who look after me at the same time, to avaoid making to many trips backwards amnd forwards. 

 

As a foot note, usually having Methylprednisolone this can upset my blood sugars for about 24 hours afterwards.  A side effect of this is that usually after having had this I need to go to the toilet during the night, sometimes 2 or 3 times.  Bearing  how much I'd needed to go all day, it didn't bode well for the night.  Amazingly I slept right through to 8.25 am this morning, until Margaret came and got me up.  But man, did I need to go!!!









Murderball

In a previous blog 'Dream, Believe, Achieve' I mentioned a 2005 film called Murderball.  I used the tag line from the film as the basis for my blog about my recent experiences of going to NHNN and my attempts to stand.

 

In the blog I copied in the Amazon review of the film but said that I would tell you more about it once I had watched the film.

 



 

So last night, having had the film sat on the side for about 8 months I finally watched it.  And it was well worth the wait.

 

The film tells the story of two Wheelchair Rugby teams, USA and Canada, and the rivalry that builds up between the two leading up to and including the Athens Paralympics in 2004.  Up until this time the sport had been called Murderball, hence the films title, but as one of the USA players says that name just wasn't marketable to big corporate sponsors.

 

On the one hand its a film about two fiercely competitive sports teams, whose rivalry increases because of the perceived betrayal by one of the coaches, in defecting to the other team. 

 

On the other its a film about disabled men, overcoming their disabilities to compete in a highly physical sport.

 

You can take the film as either one of those things, and it will still be a good watch.  But actually its much more than that.  These are young men who have suffered severe disability, either because of childhood illness or because of an accident, that has left them paralysed and wheelchair bound.  They use their sport to gain back some control over their lives.

 

The film isn't sentimental or mushy.  It doesn't hide any of the uncomfortable circumstances of these guys illnesses or injuries.  As you'd expect from a world of hard competitive sport, its full of big characters, some you'll like, some you won't.

 

It explores some of the difficult issues to do with disability.  You have young men discussing how as quadriplegic's they had to overcome their disabilities in various ways to lead their lives.  They discuss the relief involved in finding out they could still have active sex lives, and how they had to adapt their thinking towards sex and relationships.

 

You see in one scene a young guy going home after 10 months in rehab, and looking at his home, which has been adapted by his family to suit his needs, and sitting there saying it all sucked.  Not because he didn't appreciate what had been done, but simply because it then started to hit home, that this was his life from here on.  (Sound familiar, anyone).

 

Later on you see the same guy meeting one of the USA team, and talking about the sport of Wheelchair Rugby.  He gets into the players chair and tries it out.  And suddenly the guy sees he can do this, this is great fun, wow my life isn't over.

 

And that really sums up the film.  The sport of Murderball is only a background to the picture.  The real story is about how these guys use their sport to re-build there lives and to overcome their disabilities.  Its very open, very honest.

 

Its not mushy or sentimental, but it will make you cry.  Both at what these guys have been through, but also in how they have come through the other side, and what they are now able to achieve.

 

It's a good film, well worth seeing, and whether you watch it as a documentary about sport or disability, or both. I'd recommend it.

Transfers - No not football

Back in February of this year, I put a video onto Facebook of me doing a transfer out of my wheelchair and onto my commode, using my transfer board.

 

 

Transfer Video 4th February 2013

 

I was interested to see my transfer for a number of reasons. 

 

I am often asked how my strength and movement is.  Being in a wheelchair full-time it is difficult to really know the answer to this.  My transfers are my only real "exercise" but as I never see myself doing the transfer it is impossible to say how this has changed.

 

I wanted to be able to see how my transfers changed over a period of time.  Are these becoming more difficult, and could I identify things that might make these easier. Would changes to equipment, or to my routine, change how I did my transfers, and make these easier or harder. 

 

And I also wanted to be able to show other people an option they had regarding moving, when or if they became wheelchair bound.  Many people I see and speak to, in a wheelchair, speak about needing to be hoisted in order to transfer.  Even the majority of carers who come to me are surprised that I don't have a hoist. 

 

I was given the transfer board to use whilst I was in a Rehabilitation Centre, and after 3 months in hospital being hoisted, it was a great to find an alternative.  Hoisting can be uncomfortable and undignified.  Using the transfer board allows me to retain some independence, and allows me to use my legs and arms to a limited extent to move myself.

 

Before I did this first video in February, I had the impression that my transfers weren't very hard work.  I do them everyday, usually about 10 times a day from and to various chairs, bed, commode, etc, and they were part of my normal routine.  I just do them, without thinking.

 

I was shocked when I saw how much effort I was putting in to these movements, and many of the comments posted on Facebook, confirmed that many people who watched the video, also thought these were hard work.

 

So on Monday this week, I did another video of the same transfer.  Since the first video in February, I have changed the seat on the commode to one that is lower.  This has been a long drawn out affair to get this changed, which goes back about 18 months - and highlights the problems and incompetence of Social Services, but I'll write a full account of that another time.

 

I was also interested to see if the recent attempts at standing would have an impact on how I did these transfers and the movement of my legs.

 



 

Transfer Video 3rd June 2013

 

Having looked at both of these video's, I don't think there has been much change to how I do these, or to the effort required.  It's early days, in terms of my standing attempts, for this exercise to have any real impact on my legs and how I can use them.  I certainly don't think these transfers are any more difficult than last time I videoed them.

 

I still think doing these transfers, using the transfer board, is far better than being hoisted, and will resist having a hoist until it is absolutely the only choice available.

 

The other thing that strikes me about these video's is how I look.  I'm used to my fat bald head.  I've lived with that bit of equipment for years.  But it's the size of my stomach that shocks me.

 

I'm not one for constantly looking at myself in mirrors or shop windows, and I usually try to avoid being in photographs if at all possible.  A combination of Prednisolone and Guinness, not necessarily taken together, has certainly contributed to the girth of my belly, but also the loss of muscle in my stomach only makes it look worse.  It's not something that I get too hung up about, but it is something I look at with some disappointment.

 

They say beauty is in the eye of the beholder, but I'd suggest if you find me beautiful, you need your eyes tested!

 

The lady assisting me in both of these video's is my regular carer, Margaret.  She has been coming to me for almost two and a half years, and is very good.  Please do not be disturbed by the fact that she talks about killing me in both video's, as I'm pretty sure she is joking!

 

Seriously, Margaret is great fun, and we have a good laugh together.  She understands what I want doing, and how I want it done, and I understand how she will do things, so we can get on with the care tasks quickly and efficiently.  We can have a laugh and I regularly tease her about things she does, which she takes in good humour- or a threat to hit me!

 

I am very grateful to Margaret for all her help.



A bit of history

I have always enjoyed history, and read many books about historical events.  I only wiish I'd taken a keener interest in the subject at school, but then again the same could be said about many of my subjects at school.

 

That said, I never think its too late to learn, and reading a good factual account of an event in history or a biography of a historical figure, is always very satisfying.

 

When I do my morning teaching computer skills to some of the local pensioners, we often get talking about their past and I'm always fascinated by their stories of WWII and their lives just after.

 

Well just to help us along here's some things that have happened in the past, on the dates over this weekend.

 

31st May

 

1076 - The execution of Waltheof of Northumbria ends the 'Revolt of the Earls' against Willian the Conqueror

 

1902 - The Second Boer War ends with the Treaty of Vereeniging, which gives Britain sovereignty in South Africa

 

1916 -  The Battle of Jutland - the greatest clash between the Royal Navy and the German Imperial Navy - begins

 

1st June

 

1879 - Eugene Napoleon, the last heir to Napoleon's dynasty, is killed fighting for Britain in the Zulu Wars

 

1962 - Nazi war criminal Adolf Eichmann is hanged in Israel for orchestrating genocide against the Jewish people

 

1967 - British pop group The Beatles release the groundbreaking album 'Sgt. Pepper's Lonely Hearts Club Band'



2nd June

 

455 - Rome is captured and brutally sacked by Geiseric the Vandal

 

1780 - The six-day-long Gordon Riots, named after anti-Catholic agitator Lord George Gordon, begin in London

 

3rd June

 

1098 - The First Crusade captures the strategically important city of Antioch after an eight month siege

 

1940 - The last ship of 'Operation Dynamo' leaves Dunkirk, completing the evacuation of 338,226 Allied troops

 

1989 - Chinese troops open fire on pro-democracy protests in Beijing's Tiananmen Square, killing hundreds



I hope that gives you an idea of the diverse range of events that have happened on these days in our past - and thanks to the BBC website for the information.  I'm always amazed at events that I clearly remember, such as Tiananmen Square, which only seem like they happened yesterday but in fact that was 24 years ago.

 

Two events are missing from this list.

 

The first is one which I would hope that everyone here in the UK should remember.  On 2nd June 1953, the Coronation of Queen Elizabeth II took place in Westminster Abbey.  This was the first event televised live by the BBC and was watched by an estimated audience of 20 million.



My mother, whose family didn't have a television at the time, recalls that her family were invited to a neighbours, so they could watch the event on TV.  Sadly my grandmother, turned down the offer, and instead my mother spent the day listening to the Coronation on the 'wireless'.

 

The other event is much sadder and happened 100 years ago.  Almost 100,000 people today will attend the horse racing at Epsom, and watch with great excitement one of the biggest horse races in the world, the Derby.

 

100 years ago, as the horses thundered round Tattenham Corner, on the Epsom course, suffragette Emily Wilding Davison, ran on to the course and was knocked down by King George V's colt Anmer.  She died of her injuries 4 days later in a local cottage hospital.



She was quickly established as a martyr for votes for women and a stage-managed funeral in London was attended by large numbers of spectators.

 

Davison was an educated lady.  In 1895, she achieved first class honours in English at Oxford University, but could not graduate as degrees were closed to women.

 

She was also no stranger to brushs with authority.  In 1906, she was sentenced to a month's hard labour for throwing rocks at the chancellor's carriage.  In 1911, she was found hiding in the crypt of the Houses of Parliament on the night of the census, so that she could put it as her address.  And in 1912 she was sentenced to 6 months in Holloway Prison, for setting fire to a pillar box.  Whilst on hunger strike, in prison, she like many other suffragettes, was force fed, a particularly barbaric practice which involved strapping the prisoner in to a chair, forcing a tube down their throat and into their stomach, and then pouring liquified food directly into their stomach.

 

No one really knows what her intentions were at the Derby.  Whether she intended to kill herself for the cause, or if it was simply a public stunt, it gained little support from the press.  Her death confirmed many of the prejudices against giving women the vote, and may even have been counter-productive.  The then Queen's first thoughts were for the horse and jockey, and not the "horrid woman", as she referred to Davison.

 

Women were eventually granted the right to vote on an equal basis as men in 1928.  It always appears to me to have been a dark period in Britian's history.

 

Emily Wilding Davison, isn't forgotten.  There is now a plaque commemorating the event, at Tattenham Corner on the course.  Martin Luther King Jr, mentioned her name as an example of those who fought for equality, and the feminist movements of the 70's picked up her name.

 

It wasn't a great day in history, but it is worth remembering the struggle that went on so that women could vote.