A Christmas Tale



 

This story goes back to 2001, when I was still pretty active.  I had been diagnosed with IBM the year before but was still walking reasonably well, without any stick, but falling down and struggling going up stairs, were becoming more of a problem.

 

The first part of this tale is set on Thursday the 20th December.  It was the night of the office party.

 

We finished work at 5.00 pm, and myself and a colleague, Stuart, made our way to a hotel just South of the River Thames, where we were staying the night.  We walked over Tower Bridge, and it was a bright and warm evening for December, and we enjoyed the view of the lights along the Thames.

 

Having got to our hotel, we showered and changed into our dinner jackets - hired for the night - before heading out and getting a taxi back to America Square, and meeting our colleagues for a couple of drinks before heading off to the party.

 

We eventually made our way down to the river, to St Katherine's Pier, where we caught the river taxi to take us along to the party venue at Canary Wharf.  I had to be helped down the steps onto the boat, and once we were aboard, we headed off, cocktails in hand.

 

We arrived at Canary Wharf Pier all to quickly and disembarked and headed toward the venue - I can't remember specifically the name of the venue.

 

When we arrived we were offered champagne, and there was much milling round talking, purchasing of raffle tickets, and generally getting into a party frame of mind.

 

After a short time we were called through, into the main hall, were the tables were set out for dinner.  After saying Grace, dinner was served.  I do remember that the food, as it usually was at the Christmas party, was very nice, but I can't remember what we ate.  Probably Turkey with all the trimmings.

 

After dinner, we would have had some speeches and then the raffle, which was then followed by a disco. 

 

Three things happened during the evening to this point.  Firstly, I got stuck on my chair, during dinner, as it was too low and didn't have any arms.  Fortunately, Stuart was near at hand and could help.

 

Secondly, the toilets were located up a very long flight of stairs, which meant I had to give myself plenty of time to get there, and had to very careful coming back down again.

 

And, thirdly, due to a rather over eager dance partner I had ended up falling, very slowly and gracefully, on the dance floor.  Again, fortunately Stuart and my boss, rushed to help me up.

 

The party finished at about 11.30 pm, and coaches were laid on to take people back to America Square, giving those going home, enough time to get to their trains.  As everyone clambered aboard the coaches, I realised that I wouldn't be able to make it up the steps onto the coach, so was preparing to find a taxi.  Stuart and another guy, Uche, saw me, stopped the coach before it drove off, came out and lifted me, literally, onto the coach.

 

Once back at America Square, and off the coach - thanks again to Stuart and Uche - we headed to a nightclub - I forget the name but evidently on a Sunday night it was a well known venue for a transvestite evening (why I remember that, I have no idea) - which was located under a building in Crosswall Street.

 

We spent a couple of hours here before deciding to head back to the hotel, just before 2.00 am. 

 

Now you might be thinking that a lot of alcohol had been consumed, and that this might account for what happened next.  However, although we had started drinking fairly early on in the evening, I had been pacing myself, as I was by this time well acquainted with the equation, alcohol + tiredness = falling down + painful injury.

 

There wasn't a taxi about in America Square so we stated to head towards Tower Bridge to start walking, and could then flag down a cab, if one came along.  As we got round the corner, into The Minories, a cab came towards us, and Stuart stuck out his hand and ran towards it.  Without thinking, and this may have been where alcohol did have an influence, I started to follow Stuart, and started to run.  It only took a couple of paces before I realised that this was a very bad idea.  I couldn't stop myself and instantly knew this was only going to end with me hitting the pavement.  Forewarned, I managed to control my fall, so I thought, to minimise the damage.

 

The cab driver, who had by this point pulled up at the kerb,  took one look at my dying swan impression, and said, "I'm not taking him, he's pissed," and promptly drove off.

 

Stuart, once again, helped me up.  I had grazed my hands, trying to break the fall, and my right knee felt a little stiff, but we started to walk, until another cab came along.  This stopped, we got in - without any drama - and got back to the hotel.

 

When we got back to the room and I started to take my suit off, I noticed that my knee was bleeding, but it didn't feel like much, so I grabbed a towel, wrapped it round my knee and fell into bed, and was out like a light.

 

About 7.00 am the following morning, I woke up and decided I needed to get up and get ready to go  to the office for work.  I pulled back the bedding, and it became obvious that during the night I must have been moving about a lot, as the towel had come off my knee.  The bed looked as if someone had been murdered in it.  There was blood everywhere.

 

I quickly sat up on the side of the bed to look at my knee.  What I had thought was only a minor cut the night before, turned out to be a very deep slash across the knee, where you could almost see the knee joint.

 

I quickly washed, and put on my clothes.  I woke Stuart, and told him what had happened, and that I needed to go to hospital to get my knee looked at. 

 

As is typical, when you really desperately need a taxi, there's never one around.  I ended up hobbling to Guy's and St Thomas Hospital, near London Bridge, and into the A&E department.  Fortunately at that time in the morning it was empty, and I was seen straight away.

 

The nurses were fantastic, and we had a great laugh at my expense.  I was hungry, tired and dehydrated, and the kept bringing me cups of water, but I couldn't have food in case they needed to do anything, depending on how bad my injury was.  I was sent off to have an x-ray, and wandered through the hospital, without any trousers on, with a badly cut and bleeding knee.  I must have looked a right mess, but I refused to have a porter push me in a wheelchair.

 

Anyway, the x-ray was fine.  It was just a very deep cut, and no damage to any bones or ligaments.

 

The nurses cleaned up the cut, and after a local anaesthetic, put in about 8 to 10 stitches, before putting on a dressing.  After thanking the nurses, I left the hospital and made my way to the office.

 

By the time I got into work, word had spread that I had badly injured myself, but I laughed this off by saying, that I must have had the best time of anyone at the party, because I was the only one that ended up in casualty!

 

After buying bacon sandwiches for my team, and a cup of coffee, I started to feel more normal.  However by mid-afternoon the pain in my knee was becoming unbearable. so I went home early to get some pain killers and hopefully sleep it off.

 

When I took the dinner suit back to the hire shop, the assistant was horrified to see the rip in the knee of the trousers and the blood coating the inside on the leg.  As he was just starting to think about charging me for the suit, I was happy to wave my receipt at him, which showed that I had purchased the damage waiver.

 

Well, you might be thinking that this tale is now complete, and that it was a pretty painful story.  But there is more to come.

 

Twas the night before Christmas.....

 

Yes it was Christmas Eve and I was at my mother house outside of Dorchester, where I was spending Christmas.  We had just had dinner and after clearing up, were just settling down to a quiet evening.

 

I needed to go to the toilet, which meant going upstairs, to the bathroom.  My knee was feeling much better, although still quiet stiff, but I was having some difficulty getting up the stairs.

 

As I got to the top step, where you need to make the transition from the stair to the landing, and where the hand rail runs out, I caught my foot on the final step and fell down.  In falling I slipped down a couple of steps, bending my right leg back underneath me.  I didn't need to look to know I had done something bad, the pain was telling me all I needed to know.

 

After being helped up, and going to the toilet, I took off my trousers, to see that in bending my knee back underneath me, I had managed to rip out all of the stitches, and open up the wound again.

 

I put on a pair of shorts, to prevent anymore blood getting on my trousers, and then drove into Dorchester, to the A&E department at the local hospital.  Almost anywhere else in the country, at about 8.00 pm on Christmas Eve, the local A&E department would be rammed full of unfortunate cases of Christmas calamity.  Fortunately for me, this one was virtually empty.

 

I was seen almost straight away by a pleasant young doctor, who took my details, and my medical history, and then looked at my knee.  I told him what had happened previously, and how it had been stitched up, and then about this evenings falling down.

 

He was very nice about everything, and took great trouble to clean the wound out, and to examine the knee to ensure that I hadn't caused any fresh damage in my fall.

 

He said that he would put in a set of deep stitches, right inside the joint, to hold the knee together below the surface of the skin, which should make for a stronger repair.  Then he would put in between 10 to 12 stitches on the surface, but as I had ripped the skin when the other stitches had come out, these would need to be set back quite a bit from the edge of the wound and would need to go through quite a bit of flesh, in order that they were secure.

 

This all sounded very sensible. 

Then came the kicker.

 

Because I had only had anaesthetic in the knee a few days before, he wasn't happy to give another shot.  This meant that he would need to do all of these new stitches without any anaesthetic!

 

If this had been one of those great old cowboy films, with John Wayne, someone would have produced a wooden spoon or piece of wood, and after giving me a good slug of whisky, I'd have been told to bite down hard, whilst the camera panned away to the sound of my muffled screams.

 

However, I was lying on the hospital bed, gripping the sides, and desperately trying not to swear at the doctor, every time he put the needle into my knee.  It seemed to take forever.  We did stop occasionally, while he asked me how I was doing, and I tried very hard to keep my replies polite.

 

Eventually, he finished, after what seemed like hours, and probably was hours.  The knee was more painful than ever, and looked a right mess with the damage from the ripped out stitches, and the newly applied stitches.

 

After putting on a dressing, the doctor went to look for a crutch.  He came back, but could find one, so I thanked him for his great needlework, wished him a happy Christmas, and promised not to come back.

 

I spent most of Christmas Day taking pain killers.

 

So that's my Christmas Tale.  I sincerely hope that none of you go through, or have ever gone through, something like this.

 

All that's left is for me to wish you all a very happy Christmas and all the best for the New Year.  Please be safe, be warm and healthy,



Disabled Toilets and 10 Things That Annoy Me!!

I often wonder, who actually designs disabled toilets?  I suspect that its some able-bodied person's idea of what they think a disabled person needs, but without having the foresight to consult a disabled person to see if it will work for them.

I can only talk about disabled toilets here in the UK, and obviously only about a small percentage of those, which I have actually tried, but suspect that the problems I encounter will be pretty much universal.

 

The first problem is usually the door.  There is probably some building regulation that requires the door to be big and heavy, probably to do with fire safety.  I'm not sure that I think the disabled toilet is the best place to seek cover from a fire, but each to their own.  Its fine having a big heavy door,, if its easy to open and close, but invariably the hinges are stiff, which then makes pulling it open or closed very difficult, if you are trying to do this whilst also trying to manoeuvre your wheelchair.

 

And then some are fitted with door returns, which keep trying to close the door, once you've managed to pull it open a short way, and then have to let go while you reposition your wheelchair, only to turn back and find you now can't reach the door because its closing itself!!

 

Once the door is open, the first thing I then check is, if the toilet is wide enough for me to be able to turn around in, in my wheelchair, once I'm inside and the door has closed.

 

All to often, the disabled toilets allow you to go in, but not turn round once your inside.  This then leaves you with the dilemma of which way is the best to go in.  Obviously you have to close the door behind you - especially if its not on a door return - so you need to back in.  But then you're not facing the toilet, so you need to turn round, but you can't because the room isn't wide enough to allow you to turn.  So you go straight in, but then you can't close the door, unless its on a return.

 

The other thing to check is the state of the toilet.  I don't think that disabled people are inherently untidy or unhygienic, they appreciate these facilities, that are there for our convenience.  However, how many times do you go to enter a disabled toilet to find the floor wet, and covered in soaked paper hand towels.  Now from my experience of able-bodied toilets, only the men's I would add, these are usually in a pretty awful state.  So I suspect that when able-bodied people use the disable facilities they don't think anything of getting water all over the floor, or mind too much if the paper towel goes on the floor rather than in the bin.  I'm not saying disabled people are blameless, but we are far less likely to leave these toilets in a state as we have no choice but to use them.  And try spending the day going round in your wheelchair, with urine soaked tyres and with wet paper towel being trailed behind you.

 

Anyway when you've found a solution to how your going to get in the toilet, checked the state of the hygiene, and closed the door, you've then got to think about locking the door.  Now if you have weakness in your arms and fingers that don't work particularly well, the normal devices used to lock the door are usually placed to high up the door and to fiddly to be worked.  So then you have to think can I use this and lock the door, and then be able to unlock it when I want to leave.  Inevitably the answer for me is not to lock the door - I don't want to spend my day locked in a disabled toilet.

 

So you've now tackled the door, got yourself inside and locked, or not, the door.  For me actually doing the business I've gone into the toilet for, is easy.  I use a urine bottle, as I can't stand up to the toilet.  I always ensure that before I leave home that I have done anything extra, so I'm only going to need to have a pee if I'm out.  But if you need to use the toilet, these are invariably standard size toilets.  Now I know from experience if you use a normal toilet, and have difficulty getting up, because of weakness in your legs, then you're going to get stuck on the toilet.

 

The toilets often have bars which can be lowered round the toilet to help push yourself up on but these can be difficult to reach and put up and down, if you have weakness in your arms.

 

So lets assume you've got in the toilet, closed the door and done your business.  Now you need to try getting the toilet roll to clean yourself.  Usually the toilet rolls in most toilets, able-bodied or not, are those massive industrial size rolls which are contained in big dispensers.  Now these are usually conveniently placed just slightly out of reach, if your sat on the toilet, so you then have to struggle to reach them.  And then the roll has been fitted in the dispenser in such a rush, that it doesn't turn properly, so all you can get out is one sheet at a time.  Or the dispenser is so loose that when you pull on the roll it just won't stop coming out.

 

You then need to flush the toilet.  Now I find that the flush is usually placed so that you need to lean over the toilet, something I can't do in my wheelchair.

 

Then once you've struggled off the toilet, and flushed, you need to wash your hands.  Usually the sink has been put at a height suitable for a person standing up. This means the sink is about chest height for someone in a wheelchair.  This does mean that you can get yourself nice and close to the sink, as you can get your chair under the sink, but if you can't lift your arms easily, how are you supposed to reach up into the sink.

 

You then have to reach the taps.  If the sink is to high, this makes reaching for the taps very difficult.  Taps with levers are fine if you can reach the levers, and these are not too stiff to move.  In the newer toilets they have taps that work on sensors, so you don't have to fiddle about with levers.  However, if the levers are stiff and you have to struggle to get these to move, they usually suddenly move, causing you to get too much water.  Also the taps with sensors have no way of regulating the water.  So your sat right up to the sink, reaching for the taps, the water suddenly comes rushing out, and splashes down into the bowl and then right back out again, all over you!

 

Then you look for the soap dispense, which is usually above the sink.  Even if you could reach it, there is no way that you can push the lever to get the soap out, without activating the tap, and soaking yourself more.  So you struggle to get some soap out, without giving yourself an impromptu shower, only to get a tiny little squeeze of soap, or so much soap comes out that you could wash your hands all day and still not have used all the soap.

 

So now you've washed your hands, and need to get the hand towel.  Again these are usually set at a height that is impossible to reach them, unless your standing. 

 

Alternative you could use the warm air dryer, but again these are usually to high to get your hands under to activate the warm air.  So you then end up trying to lean forward to get your head to activate the warm hair and still get it to blow on your hands.

 

And then you need to get the used hand towel into the bin.  The bin is often situated so that its in an area of the toilet where it won't be blocking access.  This means its inaccessible to a wheelchair user without a great deal of struggle.

 

Then you need to try and get the door open, and the get out of the toilet.  If for any reason you find yourself stuck in the toilet, there's usually some system to be able to call for assistance.  If its a pull cord, I find these are placed out of the way, so that people aren't tempted to pull them, or are tied up so that you can't reach them.  If it's an electronic system, there's no chance that this will work.

 

Disabled toilets also, often double as baby changing rooms.  This means that there is often some sort of changing table, to take up room.  Even the toilets with restricted space have tables which fold down on the wall.  How often have I tried to go into a disabled toilet and found that the table has been left down, and its impossible for me to fold it away or use the toilet whilst this is down.

 

If you try to use a disabled toilet after a mum has just changed her child, you best have a cloths peg for your nose.  Even if the mum has managed to put the used nappy and wipes in the bin, and you'd be amazed how often these are left on the floor, the smell can be over powering.

 

So before people start designing disable toilets, why don't they try talking to disabled people to see what we want and need.  And I don't mean talk to the disabled guy who can walk in to the toilet, I mean talk to people with a range of disabilities.  Don't assume everyone in a wheelchair will be accompanied - we do like to independent as well.  Don't assume that everyone in a wheelchair has full use of their arms and can reach for things.

 

10 Things That Annoy Me.

 

1.  I have a name.  It is not "Love" "Darling" "Dearie" "Sweetie" or "Duckie."  Just because I am in a wheelchair does not give people the right to patronise me.  I have a name, so use it.  If you don't know it, ask me what it is.  But do not assume that I your Love, Dear or Duck.

 

2.  Smokers.  Now its not smoking - that would be hypocritical, being an ex-smoker.  Its when people, such as carers, come to get me up and the first thing you're confronted with, is the smell of the last cigarette they had to have before coming into the house.  Eau de Fag Butt is not what I want to wake up to in the morning.

 

3.  People being late.  When I was working , people who were late for meetings used to just wind me up.  These were the people who were invariably late in, in the mornings but very punctual in going home in the evenings.  Much the same applies now.  People seem to assume that as you are disabled, it doesn't matter if they are late to appointments with me.  I can't possibly have anything better to do.

 

4.  Being late also applies to carers when they are getting me up in the morning.  I like a 7.00 am call, or earlier.  But that does not mean you can turn up at 7.30, or later, as suits you, because that means you are taking control of my day, and I'm losing part of my day.

 

5.  People who start to shake your hand, and then try to back out.  When I was at work, you naturally shook hands with a lot of people, and a good firm hand shake, to me was a good sign about a person, whereas a limp hand shake also told me volumes.  Now I'm in a wheelchair, I find it difficult to raise my arm and hand.  Also the fingers on my hands are bent and don't straighten properly.  But there is nothing worse than a person offering their hand to shake, and then seeing the difficulty I'm having and instead of being patient, grabbing hold of my wrist and shaking my arm. 

6.  People who ask how I am.  These fall into two categories.

Firstly, we have the people who ask, but who have absolutely no interest in the answer.  They ask the question but wouldn't be interested  even if I started to tell them.  You can see it in their eyes as they ask the question, "Please just say your fine." 

Secondly, we have the people who ask but only as a segue way for them to tell me how sick they are.  Again they are not interested in my answer, but are only to willing to tell me how close they are to deaths door with their cold.  Well guess what, buster.  I can trump almost anything you have, but your just not interested to hear it.

7.  People who think I can't be ill, and laugh.  I am a very positive person - despite all this moaning here - and will always try to see the funny side of most things.  I often say to people that if they walk in and I can't have a laugh with them, then they know something is very wrong.  But being sick doesn't mean I'm not able to have a laugh or see the funny side of life.  In fact, I think its an essential part of life.

8.  People who ignore me simply because I'm in a wheelchair.  (This is slightly ahead of people who patronise me because I'm in a wheelchair.)  People seem to take the view that because you're in a wheelchair, there must be something wrong with you - well they are partly right.  What I have wrong with me is physical.  I still have a perfectly active and functioning brain.  This means I am perfectly capable of engaging in an intelligent conversation.  If you talk to me I am not going to start screaming and causing a scene.  If however you approach me and ask, "Are you alright, lovey?" as if you are talking to a 5 year old, I may just reduce you to tears.

9.  People who are sick - and the irony of this isn't lost on me.  I have very little patience with people who are sick - never have done.  When I was working - up until the point where my conditions really started to take over - I very rarely took time off due to sickness.  I seem to remember that over a 10 year period I had one day off sick.  But then you get other people who seem to have days off at the drop of a hat.  They seem to think its a "right" to take time off and that they are "due" a certain number of days off each year.  And then they come back top work and have to tell everyone how ill they have been.

10.  People who sniff rather than blow their nose.  This is just revolting.  I had a carer who about every 10 seconds would sniff, and then in between these about once a minute would do a really disgusting deep snotty sniff.  I just wanted to shout, "Blow your nose!!" whilst throwing the box of tissues at her.

A visit to the IBM Research Clinic

On Friday of last week I had my annual appointment at the IBM Research Clinic at the Centre for Neuromuscular Diseases, at Queens Square London.

 

As usual when I have a appointment at a hospital, the day started early, with Margaret my carer coming at 6.30 am to get me up, showered and dressed ready for the day. 

 

My appointment was at 10.00 am, and I had been told to be ready for collection by the hospital transport two and a half hours before my appointment.  The transport from this hospital is always late, but ever the optimist, I'm ready by 7.30 am, as requested.

 

The transport arrives only 45 minutes late, but this still gives us plenty of time to be at Queens Square on time for my appointment.  After I'm strapped in, we set off, but have to pick up another patient, just a bit off our direct route.

 

The traffic isn't to bad and we arrive at the other patients.  The driver goes and knocks on the door and waits for an answer.  After a couple of minutes a lady comes down the road, walks past the driver, opens the door to the house, goes inside and shuts the door.  A couple of minutes later the patient emerges from the house and starts to walk towards the ambulance.  As he gets almost to the ambulance he remembers that he has left something behind, and has to go back indoors, shutting to front door, before coming out 5 minutes later.  Despite always being told to be ready, so as not to delay the transport, this has taken over 15 minutes.  The patient appears to be a regular on trips to the hospital, as he is known to the driver.

 

We finally get going, and the traffic has now built up quite a bit and it soon becomes apparent that we are going to be late for my appointment.  One of my pet hates is being late for appointments - I'd rather be 20 minutes early than 20 seconds late.  I wait until about 9.40 am, so that I can judge how much further we have to go, and then ring the clinic to say, I'm on my way but will be about 30 minutes late.  They are very understanding, and tell me that its OK.

 

We eventually get to Queens Square about 25 minutes after my appointment time, and to save the driver trying to find a proper parking space, I tell him to drop me any where and I can then make my way to the clinic.  He finds a space, right by a drop kerb, just round the corner from Queens Square - in the same street as Great Ormond Street Hospital.  He gets the straps off my chair and I am ready to go.

 

I arrive just over 30 minutes late at the reception.

 

I am seeing one of the Clinical Research Fellows, called Dr Pedro Machado.  Many of the people who see Pedro, particularly the ladies, refer to him as the "lovely" Pedro.  This is actually very apt.  He is a very nice Doctor, who is very enthusiastic about his work and he is always really interested in the patients he sees, and you get the real feeling that he really does care and want to help.  Nothing is too much trouble for him.

 

Even though I am late and apologise, he says not to worry and we make our way through a labyrinth of corridors in the building to a consulting room.

 

When I was at the clinic last year, Liz Dewar from the Physiotherapy Department, sat in with us and she offered to see me, regarding the possibility of trying to stand.  Pedro asked me about this and what had happened.  I told him that we had had some success with the standing frame at the hospital, but that I had now purchased a standing up powered wheelchair, which I use every day at home to stand for between 15 and 20 minutes.  He was really interested in this and how it worked, but when I started to tell him about the physical benefits I thought that standing on a daily basis was having, he was really delighted.  I told him about the video that I had done of me standing in the chair, and that Liz had a copy of this, and he said that he would see her and get a copy.

 



 

We spoke briefly about how I was generally, and how I felt I am compared to last year when I had been at the clinic.  One of the primary objectives of the clinic is to look at the progression of IBM over a long term, in a variety of patients, to try to build up a picture of how the condition progresses.  Part of this is that each year we do a very extensive number of tests on the muscles to determine and measure the strength in the muscles.  These are the normal tests that most myositis sufferers are familiar with, where a Doctor will, for example, ask you to raise your arm, and then push against you, to measure your resistance.  However, the number of tests done by Pedro, are far more than those done by any other doctor.

 

The results from this years tests, are very similar to last years, which shows that my condition is pretty much stable.  This is what I had thought, and hoped, and is a very good sign.  I think this in part is down to the regular physiotherapy sessions I have about every 2 weeks at home, and to the standing.

 

Following this Pedro gives me an update on the drug trials, in connection with IBM.  I have already posted about this on Facebook, but have included this details at the bottom of this blog, for anyone who has missed them.

 

Just before 11.30 am, we finish up, as Pedro has another patient coming in.  We have had a very interesting and constructive hour.

 

As I am leaving, I meet John Robertson, a fellow IBM'er. who I have corresponded with for sometime through emails, Facebook, on the TMA forums, but this is first time we have meet.  We have a nice chat before John is called in for his appointment.

 

I then make my way across Queens Square and into the National Hospital for Neurology and Neurosurgery, and firstly find a toilet, and then book in for the transport to take me home.  After a wait of almost 2 hours, a lady finally comes an collects me.  She drives one of the small vans, that they sometimes use to transport patients.  Although the vehicle is clearly to small - my head is on the ceiling of the van, so I know I'll be banging my head every time we go over a pot hole or speed bump - by this time I just want to get home.

 

I finally get home about 3.45 pm, and I am exhausted.

 

Arimoclomol

A new funding grant application has just been presented to the FDA and it is hoped that they will have an answer on this in Mar/Apr 2014. If this is successful then the trial will still have some bureaucratic hurdles to get over and is therefore unlikely to start until late 2014.

The company that originally held the rights for this drug has sold these to a company in Denmark. This new company was looking to develop Arimoclomol for another condition, even rarer than IBM, and it was only when the team from UCLH went and did a presentation about the first part trial, that the company became aware of its potential application in the treatment of IBM.

This Danish company is a small pharmaceutical company. It does not have the budget/funds to be able to fund the drug trial itself. However, Pedro understands that the Board of this company are currently in discussions, to consider if they can approach their financial backers, with a view to them raising the funds required, if the FDA turns down the funding application.

The next part of the trial will involve about 200 patients. These will be split between the USA and UK, but there are discussions about other countries being involved. The criteria for the new trial, has not yet been set.

Novartis Bimagrumab/BYM338

The original trial was to test the safety of this drug, in humans. It was successfully shown to be safe, but there were also some encouraging results. Of the patients receiving the drug - and this was a single dose - under MRI, there was found to be on average an 7-8% increase in muscle. This doesn’t necessarily mean an increase in strength of function, but just an increase in muscle. However, one of the criteria for this trial was that the patient should be ambulatory and complete a 6 minute walk test. Of those patients who received the drug on the trial, there was an up to 10% improvement in the results of this test – this could have been the time to cover the same distance, or that they completed a further distance in the time.

In the UK, Pedro stated that they had been hoping to start the trial in January 2014, but there will be a delay whilst some further regulatory requirements are meet, but he is hopeful that the trial will now start in Apr/May 2014. He anticipates that the trial here in the UK will involve 30 patients, and that these will be split between 3 or 4 regional centres. One will be UCLH in London, and the others will be between Newcastle, Southampton and Manchester. He could not say what the numerical split of patients would be.

He thinks that patients for the trial will be randomly selected from the database of patients at each of these centres, and from any research patients. The patients must have a confirmed diagnosis of IBM, with a muscle biopsy that fully confirms this. To explain this a bit more, I have been diagnosed with IBM, and have a muscle biopsy that shows all the signs of IBM, but the biopsy isn’t in itself conclusive. Therefore it is possible that I might have another condition, very similar to IBM – which I have had DNA testing for – but they are unable to confirm another diagnosis. Therefore, I have a diagnosis of IBM, as they have nothing else to call it – in very simple terms.

Patients will also have to be taking less than 10 mg of Prednisolone daily, and some other immunosuppressant drugs will exclude patients, as these may interact with the BYM338 and affect results.

Patients will also need to be ambulatory, but can use any walking aids.

There may be other criteria beyond these but these will be the main ones.

The drug will be given over a 12 month period – one infusion each month. However if patient A receives their first infusion in May 2014, and the last patient doesn’t join the trial until Nov 2014, patient A will continue to receive the drug until the last recruited patient has had their full 12 months of treatment.

If a patient joins the trial and drops out at any point after the first infusion, for whatever reason, their results will still be included in the trial, and they will not be replaced.

There will be 4 levels with the trial. 25% of patients will receive a placebo, 25% will receive a low dose, 25% will receive an intermediate dose and 25% a high dose. It is not known at which level the drug will be most effective and it could be the case that at the low dose that there is no effect on the patient. Likewise, it could be that with the high dose, that there is an increased risk of side effects.

The drug is new and is being developed, and there is a potential risk to be included in the trial. Pedro reiterated some of the points raised by Dr Greenberg in his presentation to the TMA Annual Conference about the potential risk to the cardiac muscle.

My feeling is that Pedro is cautiously optimistic about both of these trials. He certainly gave me the impression that he is excited about these trials and the potential for both drugs.

A Long Day Out

On Wednesday last week, I was back at the Royal Free Hospital, in Hampstead, for my 6 weekly infusion of Methylprednisolone.

 

Normally we get up at 6.00 am to be ready for the transport to pick me up at 7.00 am, but this morning we all overslept.  Mum hadn't put her alarm on - her excuse being that she always wakes up before it goes off.  I'm usually well awake before 6.00 am, but was still fast asleep when Mum came in.  And Margaret my carer also overslept.

 

I eventually started getting up at 6.15 am, and was just sitting on the side of the bed when Margaret came.  She quickly got me showed and dressed, and as she pulled back the curtains about 6.40 am, the ambulance was just arriving.

 

I quickly had my tablets and a slice of toast, and then went out to the transport.

 

Those of you who read my blog last week will recall the horror journey I had had the previous Friday on my way to have my Lung Function Test.  This morning I have a regular driver, so I know I'm in safe hands.  I tell him about my journey the previous week, and he gives me the name of the transport manager, and says I must complain to him.

 

Anyway, we get strapped in and are underway.  The journey is uneventful, and we pick up another passenger on the way, and are at the hospital just before 9.00 am.

 

I made a quick dash to the toilet - something I need to do after 2 hours sat in the ambulance - before making my way to the ward for my treatment.

 

Usually, the nurses work very efficiently to try to keep patients there for the shortest amount of time.  They try to ensure that drugs have been prescribed the night before, and ordered from the pharmacy, so these are ready on arrival.  They get cannula's in quickly, and make sure you have everything you need, so that treatment's can start early.

 

Normally on these days at the hospital I can usually expect to arrive about 9.00 am and be finished by 11.30 am, and ready to go home.

 

Well today was one of those days when things weren't going to happen quickly.

 

I was seen by one of the nurses, and checked in.  She was then occupied with a couple of patients who had come in earlier and seemed to need quite a lot of input, mainly because they were at the start of treatments that required regular observations.

 

I have been coming to the Royal Free Hospital for about 15 years and have seen mostly the same nurses, for this time.  They are more like friends than nurses, and we get on very well.  I know how they work, and they treat me very well.  So I don't push them if things take a long time, as I realise that there is usually a very good reason, and they will get to me as soon as they possibly can.

 

Sadly today the ward is short of 2 nurses.

 

Steph, the nurse looking after my room then attempts to put a cannula in my arm.  Like many of us who have regular treatments, and have poor circulation, my veins are very hard to locate and get a needle in.  Steph has never attempted to put a cannula in my arm before and soon regrets trying.  After two attempts she gives up and rings for one of the cannulation team to come and help.

 

Two other patients come in.  One is a young guy of about 16 who is with his father.  It is obvious that this is the first time that the boy has been in for his treatment as they have lots of questions about what is going to happen. 

 

The other patient is obviously a very demanding man, and wants everything done NOW!  He seems to be oblivious to the fact that there are other patients there and to the fact that the ward is short of staff.  If something isn't done, then he runs off to find a nurse to chase them up.  He even interrupts the nurse whilst she is taking another patients observations.

 

About 10.30 am the guy comes up to put my cannula in.  He needs to take some blood as well, so intends to use the same needle.  He gets the cannula in easily enough, but can't get any blood out, so he has to put another needle in for this. 

 

So that's 4 needles in my arm in the space of an hour and half.

 

At about 11.30 am, Steph comes over with my drugs - they had lost my drug chart, and although we all know what treatment I'm having they cannot dispense the drugs without the signed drug chart.

 

It only takes at hour for the drugs to go in, and then a further 10 minutes just to flush the line.  So by 12.45 pm, I'm all finished, and have even had a bit of lunch.

 

Steph, comes and takes the needle out, and not having been able to get blood out of it earlier, it now bleeds all over the place, despite her putting pressure on the site of the needle.  It eventually stops and she makes sure that the dressing on the site of the needle is very secure.

 

I was due to see my respiratory physio, but she is busy this morning, so I have arranged to see her next time I am in.  She will look at my Lung Function Test results and show these to the Professor, and will call me if there is any areas for concern.

 

So after getting help to put my fleece back on, I make my way down to the transport lounge.  After checking in, I see the transport manager, and he is very concerned by what I tell him.  He types up a statement from what I have told him, and I sign this, and this will form the basis of a disciplinary warning for the driver from Friday.

 

I have to wait about 90 minutes before my driver comes and gets me.  We have another patient to take home, which is a bit off our normal route.

 

We leave just before 3.00 pm - which is normally about the time I'd hope to be getting home.  The traffic isn't to bad getting across London, but by the time we have dropped off the other passenger in Wimbledon, the traffic has built up quite a lot.

 

I eventually get home about 5.15 pm, and I'm exhausted.  After pie and chips for dinner, I get in my armchair to watch football, and struggle to keep my eyes open.  I see the end of the game - just - and then go to bed.

 

Its been a long and exhausting day, which will take a couple of days to recover from.

An "interesting" journey to have Lung Function Tests.

On Friday this week I had an appointment at the Royal Free Hospital, in Hampstead, to have my annual Lung Function Tests.

 

As my appointment was at 10.15 am, and I needed to be ready to be picked up by the hospital transport 2 hours before hand, my carer came nice and early to get me up, showered and dressed.  After taking my pills and having breakfast I was ready to go by 8.00 am.

 

Sadly the transport didn't turn up until 9.00 am.  There is no explanation why I need to be ready 2 hours before my appointment time, and then the transport can turn up so late, its just something that I have to accept.  However as I know that the journey will take between 1.5 and 2 hours I already know that I'll be late.

 

Then the fun started.

 

The vehicle that they had sent was a small van, just big enough to accommodate my wheelchair.  The problem with these is that being tall, my head is on the ceiling, which means every bump in the road means I bang my head.

 

The driver then wasn't going to strap my wheelchair down.  If you have ever watched films of the NASA "vomit comet" flights, where they take trainee astronauts up in a plane and dive steeply to simulate a zero gravity environment, you will have an idea of how a wheelchair moves around in a vehicle, unless it is tied down.  As the vehicle corners the chair just slides, until it hits sometime solid to stop its progress.  You have no control over your movement or how you are going to stop.

 

Having convinced him that I needed to be strapped down, and ensuring that he had done so properly, I then had to tell him to put a seat belt on me.

 

All this had taken about 15 minutes before we got going.

 

The driver, who I had never seen before, then proceeded to drive whilst trying to set his sat-nav.

 

I could see the sat-nav and watch the planned journey, but I could also see that this showed the current speed restriction on the road we were travelling on, and the actual speed we were travelling at.  Almost consistently we were travelling at between 10 to 15 mph above the speed limit - even in areas with speed cameras.

 

Even with the driver's speeding, it was clear we were going to be late, so I rang the department and told them that I would be at least 30 minutes late for my appointment.

 

When we were half way down Brixton Hill, a bus pulled out in front of us, causing the driver to have to slow down rather quickly.  Buses do this all the time.  Its just a fact of driving in a major city, that there are going to be buses and that they will pull out into traffic.  In fairness, in London, they are very big and red, you can't really miss them, and should therefore be able to anticipate that this might happen.

 

However for the next mile or so, the driver of my transport, followed the bus making hand gestures out of the window, directed at the bus driver.  I'm sure that the bus driver wouldn't have even noticed but certainly wouldn't have cared.

 

Then as we got further into London, the driver stopped across a pedestrian crossing.  I'm pretty sure that he could have avoided doing it, but he sat there sniggering at the pedestrians as the had to cross the road and walk round his vehicle.

 

A bit further on we came to a give-way, and instead of stopping, he just pulled straight out in front of a van.  It was only because of the driving skill of white van man - and its not often you can say that - that there wasn't an accident.

 

Then as we were getting near the hospital, a lady had just started crossing the road, on a zebra crossing.  She hadn't just put one foot on the crossing but had both feet firmly on the crossing and was walking confidently across.  The driver, didn't even attempt to stop or slow down, but just went straight over the crossing.  If the lady had been just slightly further over, she would have been cleaned out.

 

I was relieved to finally arrive at the hospital - not just alive - but only 30 minutes late.

 

The driver then had 3 - yes that is three - attempts to park his vehicle close enough to the pavement for the ramp to reach on to the kerb.

 

I made my way to the Lung Function Department and after checking in, was seen almost straight away.

 

The tests sound fairly straight forward.  You have to breath into a machine and inhale and exhale as instructed, to test various parts of your breathing and lung function.  Some breath's are long inhalations and long exhalations, whilst others involve quick, rapid breath's.  There are others which require combinations of quick and long inhalations and exhalations.  Each test is usually repeated a number of times to ensure that they get the best result.

 

I find these test to be quite tiring and often feel very worn out after having had them.

 

The whole process took about an hour, and the results will be passed to my consultant, and hopefully be ready when I go again on Wednesday. 

 

I then make my way to the transport department to wait for a driver to take me home.  Quite quickly a driver comes to get me, and I'm relieved that it is someone I know, and not the driver from this morning.

 

We have a very uneventful journey home and I am back indoors shortly after 2.00 pm.  After a cup of tea and a sandwich, I get into my armchair for a sleep and a rest.

Routines

I expect that most of us who have myositis, or any other chronic condition, tend to live our lives by a set routine.  This is especially so as you become more affected by the condition, and this then places limitations on what you can do, and the amount of assistance you require.

 

If like me you have carers come to you - I have carers come three times a day - this pretty much sets your routine for the day.  You know that the carers will arrive at a certain time in the day, and therefore you ensure that you are ready for when they arrive.

 

Also if you have a condition which results in you suffering from fatigue, you tend to manage what you do, to ensure that you don't run out of energy - or spoons (if you don't know the "Spoons Theory", I can tell you about this some other time) - too early in the day.  You spread tasks out over the course of the day, or over a couple of days, so that they don't completely wear you out. 

 

If you know you're doing something unusual on a certain day, you tend to prepare for this by not doing as much before hand, to try to save up some energy - or spoons.  But you know that a day outside of a normal routine, will really take it out of you, and you'll spend days recovering.

 

Most days are pretty much like any other.  It makes me laugh when people ask if I'm doing anything special for Christmas.  Actually my Christmas will be pretty much like any other day - partly because I'm not a very Christmassy person - bah humbug - but mainly because if we do too much then I'll just be asleep by mid-afternoon, having worn myself out (much like the rest of the population).

 

However much you try to stick to a routine, there are always going to be the occasional days when you need to do something outside of this normal routine.  Visits to the hospital, visits by or to friends.  Although these are everyday events for most people, these changes to our routines can have a huge impact on us.

 

Occasionally there will be a week when everything comes all together.  When every day seems to be busy, and your normal routine goes out the window.

 

Well this week is one of those weeks.

 

On Monday morning I had a 10.00 am meeting with the Area Co-ordinator from the Care Agency, to conduct my annual review.  This is where we get to look at any problems I might have with my carers, and my care package, and see if there is any more services I require.

 

As any of you who are regular readers of my blog will know, over the last month or so there have been a few problems, which have resulted in me writing a letter of complaint to the Agency, and including Social Services and the Care Quality Commission.  So it was going to be an interesting meeting.

 

Now things started off badly with the lady turning up late.  This is one of my pet hates.  You agree a time for an appointment - so you should be able to turn up on time.  If you're running late, you can easily use a mobile phone to say, you're going to be late.  But there does seem to be an assumption that if you're disabled, then you've got nothing better to do than wait in, so it doesn't matter if they turn up late.

 

At least you should have the courtesy to apologise for being late - but she didn't even acknowledge the fact.

 

We then went through my care package, which is fine and doesn't need any changes.  I'm quite happy with the carers who come to me, the majority of the time, so there are no issues that need to be dealt with.

 

However, when we talked about the overall service I receive and how satisfied I am with this, she didn't seem to think that the poor service from the office - which is what my complaint was based on - needed to be documented on the forms.

 

She then had to do a "risk assessment" to see if there was any greater chance of me being a danger to myself or others, because of changes to my condition, or environment.  This hasn't changed from last year.

 

Finally, as she thought we had finished I asked here about my complaint and what was happening with it.  She said that it was being dealt with and I should hear shortly.  I pointed out that the companies own complaints procedure states that any written complaint will be acknowledged in writing 2 days after receipt, and that within 14 days a full written account of the investigation into the complaint, along with the actions and measures taken, would be sent to me.  Neither of these had been done, and accordingly the company was in breach of its own complaints procedure.  She assured me that this was an oversight and that I would get a letter by the end of this week.  (I'm not going to be holding my breath),

 

So this took about an hour.

 

In the afternoon I then had an appointment at the Diabetic Clinic at my local medical centre.  This is only 15 minutes away down the road, and I go there in my powered wheelchair.  However, Monday was a wet and miserable day, and this meant that I needed to put on extra layers to keep out the cold and rain.  I have a waterproof cover, which goes over both me and the wheelchair, and keeps both dry.  But its impossible for me to get on and off on my own, so Mum has to come down with me.

 

I am early for my appointment, but as usual the clinic is running late, so I have to wait for about 20 minutes before I'm called in.

 

About 2 weeks before my clinic appointment, I had a fasting blood test, and gave a urine sample, so they have all the results ready for the clinic.  Everything looks very good, with my long term blood sugars and fats being where they should be, and my cholesterol levels are within the right area.

 

So there is nothing much to discuss, as the tablets I am taking seem to be keeping my diabetes stable, and we make another appointment for 6 months time.

 

After a wet trip home, I'm able to get into my armchair for a bit of a rest.

 

Tuesday is my day to go to the local community centre - the Douglas Brunton Centre - where I volunteer teaching members how to use computers.  Its good fun, as the people are usually quite interesting to talk to, and its something a bit different one morning a week.

 

I get picked up about 9.00 am and get home just before 2.00 pm.

 

Usually I'd get in my armchair in the afternoon, and recover from the morning, but today Mum isn't feeling great, so I give her a break.

 

Wednesday morning I have an appointment with the Eye Clinic ay Croydon University Hospital.  I have ordered a taxi to take me - I can travel in my wheelchair in London black cabs, as they have rammed access, and as a disabled person I am entitled to a reduced fare, through a scheme called TaxiCard.

 

The taxi picks me up just after 9.30 am and we arrive at the hospital in plenty of time.  I make my way to the clinic and book in and then expect a long wait to me seen.

 

The Eye Clinic is always packed with patients and everyone always has to wait for a very long time.  I cannot ever remember being seen on time.  But it does seem to be badly organised, and a bit chaotic.

 

When I book in, the clerk has to look through all the files to find mine.  They don't appear to be in any sort of order, either alphabetical or numerical. 

 

I have been attending the Eye Clinic for about 4 years.  I have a Macular Scar on my right eye, and they are monitoring this to ensure that it doesn't get any worse.

 

An hour after my appointment time, I am called in by one of the nurses, who gives me a short eye test.  He then has to go and find a more senior nurse to come and put some eye drops in, which will dilate my pupils, before I have a scan of my eyes.

 

The other nurse comes and warns me that the drops will sting - which they don't - and puts them in.

 

I then have to wait to be called for the scan.

 

After about 15 minutes, I am called in and given the scan.  Its only a matter of sitting in a dark room with my head on a frame looking into a camera and a blue light, whilst they look at my eye.  It takes about 10 minutes to do both eyes.

 

I then have to wait to see a doctor.

 

This takes about 15 minutes before I'm called in.  The doctor reads my notes, and looks at the comments from the scan.  Then he has a little look into my eyes.  The Macular Scar is unchanged.

 

However, he says I have the early signs of a cataract in my right eye - thank you Myositis and Prednisolone - but it isn't something to be concerned about at the moment. 

 

He advises that he'll see me in a years time.

 

I leave the clinic and make my way down to the front of the hospital.  I ring for a cab to collect me and take me home.  I'm expecting a long wait, so don't rush to get outside.  I just get out of the door and the cab pulls up.

 

I get home about 12.30 pm, which is much earlier than I expected.  My vision is blurry, I have a headache and I'm knackered, so I get in my armchair and fall asleep for the afternoon.

 

This morning my carer overslept which meant she was 45 minutes late getting here.  I really appreciated that extra 45 minutes in bed.

 

Today I have nothing on, so its very much a day to recover and rest.

 

Tomorrow I have an electrician coming at about 8.30 am to put up some new light fittings, so that will be another disruption to my normal routine, with having to organise the work, talk through what needs to be done and where, and make any decisions.

 

Weeks like this aren't the norm, and usually I'd try to spread out these sort of appointments so they don't all come together, but this week has been unavoidable.  At least at the end of this week I'll know that all these things are out of the way, and I can spend a quiet weekend recovering.

Joost Van der Westhuizen

Some time ago I did a blog about Joost Van der Westhuizen and wrote about my admiration for his great rugby ability, and now his fight against Motor Neuron Disease.

Below is a link to an interview he has given recently, whilst on a trip to Wales to watch South Africa beat the Welsh at the Millenium Stadium. on Saturday.

http://www.bbc.co.uk/sport/0/rugby-union/24890861

For a man who was such a great athlete, and embodied the South African rugby spirit, to see him reduced to this is very sad.

It makes me feel very lucky.

Some more about standing and the long awaited video - Yipee!

It's been a while since I've written about my standing using the new Levo C3 stand up powered wheelchair, and at the end of last week I finally managed to get a video of me using it, so I thought I'd update you on how things are going.

 

Remarkably it's now 7 weeks today, since I took delivery of the wheelchair, and I really feel that I'm starting to make good progress and feeling the benefit of using it almost every day.

 

Levo C3 Stand Up Wheelchair - sitting

 

Levo C3 Stand Up Wheelchair - standing

 



Unless I am going out, when I use my Viper S powered wheelchair, I get my carer to assist me getting into the Levo wheelchair, after I have got up, showered, and dressed in the morning.  I then have breakfast, after which Mum helps me by putting on my trainers - which give me good support in my ankles and heels as I stand - and the puts in place the knee/leg supports and then puts the chest strap round me.

Viper S Powered Wheelchair

 



I then go and stand looking out the front window, watching the world go by.  I am usually standing somewhere between 10 and 15 minutes, but on a very good day I have stood for as long as 20 minutes.  It isn't actually hard work, standing in the chair.  I had expected that it would be hard on the muscles in the legs and that these would hurt, but actually this isn't the case.  When I first started standing the legs did feel weak and after 10 minutes standing, would feel a bit shaky, but this has now gone.

 

What actually limits the amount of time I can stand is the discomfort in the soles of my feet.  I wasn't expecting that, but suspect that not having stood for 5 years, the soles of my feet need toughening up to get them used to having weight put through them.

 

After having stood, I then tend to transfer back to my Viper S wheelchair, as this is more comfortable to sit in - or I'm more used to this chair and it feels more comfortable - and it is easier to manoeuvre round the house.

 

You might be wondering if its worth having if I'm only using for this short time every day. 

 

As I can build up more tolerance to standing, I will be able to stand for longer, and eventually if I can get to a point where I can do a couple of stands of reasonable length, each morning, that will have even more benefit.

 

Below is a video of me standing using the Levo C3 stand up powered wheelchair.  Sorry that the lighting isn't the best, and the cupboard behind me doesn't allow you the best view of the chair actually raising up and down, but hopefully you'll get a good idea of how it works.

 

I have also muted the background noise - as the washing machine had just reached it's spin cycle and all you could hear was this whizzing round - and have therefore put on a song by Saint Etienne - Who Do You Think You Are - which I hope you'll enjoy.

 

 



You will note that when I am standing I am not getting up completely straight.  Part of this is to ease the pressure on my feet, and therefore extend the length of time I am standing.  Also I need to stretch the tendons in my legs to get them used to standing straighter - which is something they won't be used to from all the sitting down in the wheelchair.  I try to get a little straighter each time I stand.

 

The final reason is one of confidence.  As I get more upright, I feel as if I am on the edge of tipping forward.  Although I have the chest strap which will prevent this from happening, and that the chair itself is extremely stable, I still need to build up my confidence in this regard.  I'm sure you'll appreciate that tipping over feeling, and wanting to avoid doing something that might end in setting back my progress.

 

So what benefits have I found from standing?

 

Even in the relatively short time I've had the stand up wheelchair, I've started to notice little benefits.

 

I've written previously about being able to see the world from a different perspective, literally, and the difference that this can make.  Just simply the joy of being able to stand, is a real tangible benefit after having spent 5 years sat down.

 

Physically, I can see a difference in my legs.  They aren't swelling up as much as they used to and the skin on my legs appears to be in slightly better condition.  I've even got hairs growing back on my lower legs - which might not sound like much - but that's quite a big thing.

 

I am also feeling a bit of an improvement in my core strength - which is one of the areas that is really hard to achieve any improvement.  We are only talking about a very small improvement to my stability when I am sitting on the side of the bed first thing in the morning, but its definitely an improvement.

 

One of the issues many wheelchair users find is that their bowel movements become very irregular and constipation is often a big problem.  Although I would say that this has never been a great problem for me, there has definitely been an improvement in this direction.

 

Also it has helped to lessen the occurrence of sores on my bottom.

 

But the most noticeable benefit has been with my toes and feet.  I have Raynaud's and have always suffered with cold hands and feet.  Since being in the wheelchair, my feet have almost constantly been cold, and the changes in skin colour had become quite pronounced.  Earlier this year a friends wife was shocked to see that I had purple toes - and even more shocked when I laughed it off as being normal for me.

 

Well over the last few weeks I've really noticed that these changes in skin colour have almost completely disappeared.  I won't say my feet aren't cold but they certainly aren't as cold as they were before I started standing.

 

So that's where I am currently with standing and using my new chair.  It was quite a lot of money, but it was worth it, and I can see that the more I can use it the better the benefits will feel.

 

I'd just like to finish this blog by saying a thank you.  It was in December of last year that I saw Liz Dewar, one of the senior Physiotherapists at the National Hospital for Neurology and Neurosurgery, in Queens Square, London, during an appointment at one of the IBM research clinics.  She saw the potential benefits to me and offered me the opportunity to attend appointments with her team to explore the options to getting me standing.  After almost 4 years of being told I couldn't stand it was a breath of fresh air.

 

Liz and her team, where brilliant.  Patient, encouraging and supportive, they deserve a great deal of credit for giving me the opportunity, and for working so hard to help me achieve my goal of standing.

 

Thank you to them all!

  

Disability, In Praise of Carers and a Stormy Night

It is now just over a year since the London Paralympics finished and it is interesting to see a piece in this mornings news about how this event has changed peoples perception of disabilities and the disabled.

 

The Paralympics were a great show case to present to the world what disabled people can achieve.  It wasn't about the negative - what I can't do - but rather about the positive - what I can do.  We watched great sporting endeavours from athletes who daily have to overcome huge hurdles just to live a normal life.

 

But was it a fair representation of disability and disabled people.

 

Of course it showed off the undoubted talents for people who have worked very hard to overcome their disabilities to compete in sport at the very highest level.  But not all disabled people are able to achieve, and participate in sport.  There isn't the facilities at most sports clubs to accommodate disabled people, let alone the equipment to enable them to participate.

 

Only 17% of disabled people are born with their disability, and if like me you come to be disabled later on in life, then the adjustment to be able to live independently takes a great deal of time and effort.  Being able to participate in sport is a non-starter.

 

The public's perception of disabled sport and disabled athletes is at an all time high.  People like Jonny Peacock, Hannah Cockcroft, Dave Weir and Ellie Simmons are now spoken of in the same terms as abled body athletes and their achievements are recognised as being on the same level as their abled bodied counterparts.

 

And all of that is great and very positive.

 

However, very little has changed for the ordinary disabled person.  I've had this conversation with able bodied friends, and they seem surprised when I say the Paralympics made very little difference to how I, or other disabled people are seen.

 

If you try to use public transport as a disabled person, you find that seats which should be there for the use of disabled people are occupied, and people simply won't move. 

 

Try catching a  bus in a wheelchair and invariably you'll find the space for parking your chair is occupied by pushchairs, or by people simply standing in the space. 

 

And similarly on a train, the space for a wheelchair, is used by passengers for storing cases and pushchairs.

 

How often do you try to park in a disabled parking space only to find this is occupied by someone without a "blue badge".

 

Or try to use a disabled toilet, and find that an able bodied person is using it, because they couldn't be bothered to find and use the able bodied facilities.

 

And that's all without commenting on the difficulties of accessing public transport and buildings, because they aren't wheelchair friendly.

 

On social media there are often comments directed at disabled people, that make uncomfortable reading.  Examples like:

• "If she was my kid, I'd have her walking by now,"
• "I'd do anything to be sick like you and thin."
• "Is your child normal?"
• "Disabled people don't have to pay bills, do they."
• "People like you should be in a home, its not fair that the rest of us have to deal with your problems."

I've been shouted at and abused in the street, often when I've asked an able bodied person to move their car, when its parked over a drop kerb, where I need to cross the road.

 

For all the good that the Paralympics could have done, sadly it was followed by a campaign by the current government aimed at reducing the welfare bill.  One of the main targets for this was benefits which are specifically for disabled people, and the governments intention to reduce the welfare bill.  In trying to justify their policy they have labelled disabled people as work shy, scroungers, who are happy to sit at home, and take hand outs from hardworking tax payers.

 

This distorted view of the disabled has ignored the fact that disabled benefits have less than 0.5%fraud, and that many disable people have worked and paid their taxes, etc, prior to their disability impacting on their ability to work.

 

But it has helped to foster a public perception of disabled people that is very negative.

 

A great quote that I think sums up attitudes to disability comes from the sculptor, Tony Heaton, who created the giant wheelchair sculpture that adorned the Channel 4 building in London during the Paralympics.  He says:

 

"It's amazing that in 1969 we as a society managed to put a man on the moon and yet we still can't get a wheelchair user from one railway station to another nearly 50 years later… You have to come to the conclusion that it is a lack of will to create a more accessible world, not lack of technology or design skills."

 

Last night, here in the UK, we had one of the worst storms that has hit the south of the country since the hurricane of 1987.  There has been loss of life, extensive property damage, homes left without electricity and major disruption to the public transport and roads network.

 

In my area it all started to kick off as it was getting dark, round about 5.00pm last night.  You could hear the wind and rain battering the house.  Early in the evening I had a call from my carer to say she would come to me late to put me to bed.  She arrived at about 11.20pm - which is fine by me.  She was soaking wet, from running from her car to the homes of the people she was visiting, and looked worn out.  But she could still laugh about the weather.

 

She put me to bed and as normal, I dropped off almost as soon as my head hit the pillow.  I slept right through the night, without disturbance from the wind and rain.

 

I expected my carer this morning to be late.  She has to come quite a long way, and I was anticipating that there would be debris from the storm on the roads, that would make her journey difficult.

 

However, at 6.00am, right on time, she let herself in.  Although she said the journey had taken longer than normal, she had left early to try to be with me on time.

 

What a fantastic effort by two lovely girls, and it just shows how great most of the carers actually are.  A big thank you to Margaret and Hildreth.

More on Carers and a day out.

Following my last blog I have had lots of messages saying how bad the experience was with the agency and the Carer last weekend, and many have said that they have experienced similar problems.

 

I would say that for me 95% of the time, my Carers are excellent.   They are friendly, hard working and are dedicated to doing a good job.  As with anything in life it only takes a few rotten apples to tarnish the reputation of a whole profession.

 

I am pleased to say that Social Services were in touch with me on Tuesday afternoon and will take the matter further.  Also I have been contacted by the Care Quality Commission and we are due to have a telephone conversation on Monday, in order that they can get a few more details before pursuing this further.  So I'm pleased to be able to say that my complaint is being taken seriously, and hopefully this will result in an improvement in the service provided by the agency.

 

One of my real concerns when I come across this sort of service from the agency and the sort of attitude shown by the Carer, is how it effects other people.  I am - at least in my mind - pretty competent and capable of coping with this sort of service and attitude, although obviously it did really annoy me last week.  However I am always concerned how this impacts on those people less able to cope than I am.  Those people who are older, more confused and have less support than I do.

 

Well on Monday evening my Carer came to me and started to tell me about a lady round the corner from me.  Now several Carers have mentioned her as she is a bit of a character.  She is 97 years old, and despite having dementia, lives on her own.  She is often confused but is always happy and has a good laugh with her Carers.  However on Monday she seemed very subdued and withdrawn.

 

Having sat and spent sometime talking to her it seems that on Sunday, the same Carer who had been to me had visited this old lady.  Quite what the Carer did is unclear as the old lady is a bit confused about it all, but she has been upset to the point where she has said she never wants that girl to go there again.  She doesn't feel she can complain, as she doesn't want her care to be affected.  She was clearly very upset, over 24 hours after the girl had left.

 

To have caused that level of distress to anyone you are going to offer care to, let alone someone as old and vulnerable as this lady, is despicable.  I have heard that the agency have stopped using the girl any more, which I sincerely hope they have, but I wonder what will happen if they find themselves in need of a Carer at short notice.  And sadly there is nothing to prevent this girl going to another agency and getting work, as Carers are in such short supply, that girls are often taken on without proper references being sought.

 

On Wednesday I had my regular 6 weekly trip to the Royal Free Hospital, in Hampstead, for my infusion of Methylprednisolone.

 

My Carer came at 5.50 am to get me up, showered, dried and dressed, and after breakfast and my pills I was ready for the transport when it arrived promptly at 7.00 am.

 

The driver was the regular guy who picks me up, Dave, so I knew I was in safe hands, and after he had strapped me in, we were on our way.  The weather forecast for Wednesday was for a really wet, horrible day, but as we were leaving it was fine, and the sun was just making an appearance.  As we got down in the valley, to the main road, looking east, there was the most amazing red/orange sky.  It really looked like the sky was on fire, or some sort of alien sky.

 

Anyway, about 30 minutes later it started to rain, and that was the end of the spectacular sky.

 

We headed north, round Croydon, past Thornton Heath, through Norbury, Streatham and Brixton.  We skirted round Vauxhall and crossed the Thames at Waterloo Bridge.  The weather was so bad that at this point you could barely see along the river.  Using the Strand Underpass we then went past Euston Station, on into Camden and past the market, and up to Hampstead and the hospital.

 

We were there just before 8.30 am, so had made excellent time.

 

I went to the ward and checked in.  The ward I go to is called PITU, which stands for Planned Investigation and Treatment Unit.  It is a ward that is specifically there for people who need only to be at the hospital for the day, either for treatment, like me, or for simple procedures or tests which do not normally require an overnight stay.  Over the past 12 months they have been doing lots of work, modernising the facilities and creating much more room, so that more patients can be treated in this way.  Sadly, although they now have these great new rooms and facilities, they don't have enough staff to be able to use this new space fully, so much of it now sits empty and unused.

 

I am helped off with my coat, and one of the nurses checks my blood pressure, heart rate, temperature and oxygen saturation of my blood.  These are all good, and just as we are finishing these, another nurse appears with a cup of nice strong tea, just the way I like it.  It's one of the advantages of coming to the same hospital, and seeing the same nurses for so many years, that they know me so well that they get me a cup of tea, made just how I like it, without having to ask.

 

The nurse then puts the cannula in my arm, which isn't easy with my veins.  We then just need to wait for the doctor to come down to prescribe the drugs.  Usually the doctors take their time coming down to do this, so usually the nurses try to get all the drugs prescribed the evening before to avoid any delays.  It really must be my lucky day, as a doctor turns up almost straight away, and after a quick chat, fills out the prescription.

 

Whilst I'm waiting for the drugs to be made up, a few more patients turn up.  As we are sitting there we hear a very posh sounding lady, in the corridor outside of the room ask one of the nurses, where the psychiatric ward is.  The nurse replied that it was in another building but asked why she needed the psychiatric ward. 

 

Now before I tell you the ladies reply, let me say that none of us in the room could see the lady, but based on the posh sounding voice that had originally asked the question, we had no warning of the reply that was given.

 

Still in a very posh voice she said, "I need some knickers.  I wasn't given any this morning."

 

Fortunately I didn't have a mouthful of tea, otherwise it could have been very messy.

 

The lady then went on to say that she needed to see a doctor, but only a white doctor.  She was most empathic on this point.

 

The conversation spiralled from there around the woman's need to find the psychiatric ward, some knickers and a white doctor.  But it was a good example of how we had all heard the initial enquiry, and based on the sound of the ladies voice, had jumped to a conclusion about her, which was instantly smashed by her need for some knickers.

 

I'm not sure how this ended, as my drugs turned up and I was then distracted by the nurse connecting me up.

 

I have known Lorna for at least 10 years and she has looked after me very well in all the time I have known her.  I think of her more as a friend than a nurse.  We get on very well, and she often shows me pictures of her young daughter, who she takes great pride in.  Well today it was my turn to show her some pictures on my mobile, of me standing in my new wheelchair.  She was very excited about this and grabbed the phone and went off to show the pictures to the other nurses, and to some of the other patients.

The infusion only takes an hour to run through, and after a saline flush of the IV line, I am disconnected, have the cannula out and my coat back on by 11.00 am. 

I need to see my respiratory physio, Christine, so I give her a call and she agrees to come up and see me on the ward.  Whilst I'm waiting I go and arrange the date for my next treatment.

Christine arrives about 11.45 am, and has brought one of her colleagues, Steve, with her.  We want to do a blood gases test, and also try to do a lung function test, so we head off to the new department.

The old lung function area was based on the ground floor, near the entrance of the hospital.  The department was based in a small room, where they had three testing stations, plus clerical areas, and it was a real obstacle course getting in and out in my wheelchair.  The new department is up near PITU ward, and has all been newly refurbished and equipped, and there is masses of space.  However, again they don't have the staff to use all the nice new facilities.

We grab a room and Steve smears my earlobe with Deep Heat cream, to warm up the lobe and to bring the blood vessels to the surface.  Whilst he is doing this, Christine goes off to see if there is anyone free to do the lung function tests.

The blood gases test is to see the make up of the gases in the blood, and the volume of each gas.  They use the earlobe as the blood here has come from the lungs, and it is the easiest place to get blood that has been freshly oxygenated.  After heating the ear to draw the blood vessels to the surface, they then nick the ear with a scalpel and collect the blood in a small tube, or straw.  This is then put into a machine and it analyses the blood, and the combination of gases and their volume.

As we wait for the earlobe to warm up, Christine, comes back to say that there is no one available to do the lung function test, but she will definitely arrange this and book it for the date of my next treatment. 

Christine has previously asked me about wheelchairs, and I show her the photos of me standing in my new chair.  She has asked me to email her the details so that she has them if any one ever asks her about stand up wheelchairs.

Steve, makes the nick on my earlobe and collects the blood.  He quickly gets a plaster on the lobe, as it does tend to bleed a lot after they have done this.  I can't take the plaster off for at least 24 hours or it is likely to bleed again.

After analysing the blood they are pleased to say that all the gases and the levels are as they should be, except for the oxygen.  This should be 11.00% but my result is 10.92%.  Christine isn't concerned by this as all the other results are normal.

I then make my way to the transport lounge and check in.  Its about 12.30 pm by this point, and one of the nurses gives me a cup of tea and a packet of "Bourbon" biscuits while I wait.

About 2.00 pm, Dave, comes in and says he will be taking me home.  Outside its really wet and miserable, so I get into the ambulance and we are on our way quickly.

Going home, there are lots of hold ups in central London, so we head off in a slightly different way, to coming.  We head off down past Lord's Cricket Ground, and then down to Baker Street.  I've been along Baker Street many times, but never really taken much notice of it.  Today the traffic is slow, so I get a good look at the Sherlock Holmes museum - which doubles as the café below the flat in the BBC series Sherlock - and see the number of tourists coming out of 221b Baker Street.  There is a section of pavement cordoned off, where a man dressed in a period police uniform stands ready to have his picture taken.  Really sad is the man stood next to him, dressed in a long tweed cloak/coat with a deer-stalker hat, trying to be Sherlock Holmes. I'm sure you can have your picture taken with him, for a reasonable fee, but I have to say he looks nothing like the Sherlock Holmes described in any of the books, seen in any of the films or TV adaptions.

From here we go down through Shepherds Bush and onto Hammersmith.  We cross Hammersmith Bridge, which is a old narrow bridge.  This has traffic restrictions on it because of how narrow it is and its age but the best thing about this bridge is that in the past when the soldiers from the nearby barracks used to march across the bridge, they had to break stride, otherwise the uniform beat of the left, right, left, right rhythm of their feet would cause the bridge to sway.

From here we head down through Putney, Roehampton and down the side of Richmond Park.  We then cut over and round Sutton, and then round Purley, and get home about 3.30 pm just as the cloud breaks and the sun comes out.

And that was the highlight of my week.