3rd September 1982

In one of my previous blogs, I mentioned that there were quite a few milestones in my life that occurred during the month of September.

 

Well the 3rd September 1982 is one of those dates.

 

In 1982, I was 16 years old.  I knew that I didn't have much interest in staying on at school and had decided sometime ago to look for a job in engineering, where I could do something practical but also have to use my mind.

 

Over the previous 12 months I had applied for many jobs and been to loads of interviews, but the career that really interested me was as an Artificer Apprentice in the Royal Navy.

 

Initially I had a standard recruitment interview.  This was followed by an aptitude test, which was similar to tests I'd seen at companies, when being interviewed.

 

About 6 weeks later I was called to have a medical in an office in London.

 

Then there was a long wait, before being called for a formal interview.  It was in front of a panel of 3 officers, who were very stern faced.  It was a very intimidating experience, but it all went OK.

 

Then finally I was called to take an entrance examination.  I went to a local recruiting office and was locked in a room, with an exam paper.  It was by far the hardest exam I had ever taken, and I had no idea how well I had done, but just knew that if I failed this, I wouldn't be joining up.

 

Well months past, and I took my o'level exams at school, and did pretty well.  I was offered a couple of the other jobs I had applied for, but didn't need to make any decision until September.

 

Then one morning in early August a letter dropped on the doormat, clearly marked from the Royal Navy.  I opened the letter and with huge relief, read that I had passed my entrance exam and was being offered a place at HMS Fisgard, in Torpoint, Cornwall, as an Artificer Apprentice.  There was a mixture of pride and relief at my achievement.

 

And so on the 3rd September 1983, I boarded a train from Paddington Station, London, bound for Plymouth, and then on to HMS Fisgard.  I had worked long and hard to get here and I was going to make the best of the opportunity that was being given to me.

 

The front gate at HMS Fisgard

 



On arriving at the ship - yes it was a land base but still called a ship - I was assigned to Bennett 1 Division, and prepared to start 4 weeks basic training.  My fellow recruits and me were under the supervision and command of Chief Donaldson, and his task was to mould us into a team, who could work and support each other, and also to identify any recruits who wouldn't make the grade.

 

Bennett 1 Division - I'm 2nd row, 2nd in from the right

 

D197553N Wood

It was a tough adjustment to a military life, but we were all in it together.  The 4 weeks consisted of lots of physical activity, lots of parade work, general military training, but the thing that stood out most was that for those 4 weeks we never stood still.

 

A typical mess on HMS Fisgard

 

We would be up at 5.30 am, and out for a run.  Back to the mess, showered and dressed and off to breakfast for 7.00 am, and then out again by 8.30 am.  We could be doing anything from drills on the parade ground, running an assault course, to having a lecture, regarding life in the military.  After lunch, it was more of the same.  About 4.30 pm, it was back to the mess and changed for dinner, before having to go out for another run, or swim.

 

Even in our "free time" we had to play sport.

 

Although some people did drop out, a hard core developed, carrying the others with us.  There were lots of hard times, but also many more laughs.

 

I had my first experience of firing a gun, with live ammo - and it was safe to say I couldn't hit a barn door. 

 

We tested gas masks in a bunker filled with tear gas, and when the instructors were happy that our masks fitted well, we were told to take them off, to experience what a gas attack might be like.  I vividly remember running round the parade ground, arms stretched out wide, gas mask in one hand, tears streaming down my face - from the gas - eyes itching like hell, and laughing about how ridiculous it all was.

 

We had lecturer's on military ranks, Morse code, STD's, you name it.  We were even given an instruction manual to military life.

 

We spent 3 days camping at an old fort near the ship, and engaging in more running, jumping, assault courses, abseiling, and being attacked by a bunch of Royal Marine's who stormed the fort early one morning, firing there guns next to our tents, before collapsing them and setting off a load of flash grenades.

 

The one thing we had to do during basic training was to pass a swimming test.  This involved jumping into a 50 metre pool in overalls, swimming 2 lengths and then treading water for 3 minutes.  I wasn't a strong swimmer and failed the first time, but noticed that when you jump in your overalls immediately fill up with air.  So I taped up the wrists and ankles of the overalls, trapping the air inside, and passed the test with ease second time round.

 

On the first Saturday of October, we had our passing in parade, where family and friends could come to the ship and watch us march on the parade ground, and finally become full serving members of the Royal Navy.

 

After this the pace of life suddenly changed.  It was more like being at a boarding school, attending lessons, doing workshop tasks, and less physical activity.  We could even have nights out off the ship and enjoy the local hostelries.

 

But it was at this point that I started to find myself having a problem.  During basic training, I had never had a problem with keeping up, and had usually been up front leading the way, but suddenly now I was struggling to do things.

 

I remember one night during basic training, we had been taken for a run, in overalls and boots, down to the river Tamar, and we had to run across the mud flats, which were left exposed by the low tide.  We had run about 3 miles to get there.  We then had to run out across the mudflats and back again, a distance of about 500 metres.  The mud was deep, and just seemed to suck you in.  If you stopped for a moment, you started to sink, and there was every chance of losing your boot.  Stand still at your peril.

 

Once back on dry land, we were soaked, muddy and worn out, but we still had a 3 mile run back to ship.

 

A Geordie lad called Paul "Cookie" Cook, suggested that to raise spirits and keep people going, that we start some running songs, for a laugh.  You know the sort of thing:

 

One, two three, four,

Chief Donaldson is the one we're for.

Five, six, seven, eight,

Running in mud is just great.

 

So we just made up words and verses, and as more people got into it, they added their own bits and it kept everyone going.  As we were running back, if anyone started to fall behind, we'd all run on the spot, whilst Cookie and I would run back, collect the straggler and bring them to the front to run with us.

 

When we got to the front gates at the ship, we were all running strong, singing loud and everyone looked at us in awe.  People commented on it for days afterwards.

 

However, only 6 or 7 weeks after this, I found I was struggling to do a basic 5 mile run.  I'd be the one at the back, needing to be supported.  And once we had finished, all I could do was sit down exhausted.

 

Playing sport, something which I had done with ease all my life, suddenly became really hard and I just couldn't cope.

 

Even standing on the parade ground started to become hard work.  Every Saturday we would have a parade, called Divisions, where all the divisions on the ship would parade their colours to an inspecting officer.  At first I just used to find that the standing still for the hour or so of the parade, made my legs and feet hurt, but eventually I'd faint and need to be carried off the parade ground.

 

The problems I was having physically, started to impact on my school work, and I started to fail course work exams - something I had never done before.

 

And so it all seemed to spiral from there.  The more I tried to do physically, the harder it became.  Because of the effort of trying to keep up physically, I was to tired to be able to concentrate on my course work, and this started to suffer.  So this just added more pressure on me, which just made everything worse.

 

I was seen by some of the medical staff, and of course, they couldn't find anything wrong.  How could they, even I couldn't really say what was wrong, other than the fact I was struggling.

 

Eventually, it became obvious that my instructors and officers thought I was putting it all on, and although no one actually said it, it was pretty clear that they were starting to think I was just being lazy and needed to pull my finger out.

 

After a short break at home over Christmas and the new year, thinks were no better, and just continued to get worse.

 

Eventually, towards the end of January, I realised that if things continued the way they were, I would end up being thrown out.  I made the difficult decision to leave.

 

On the 2nd February 1983, I was officially discharged from service in the Royal Navy.  Something I had worked so hard for, and had such high hopes for, had become a bit of a nightmare.

 

I was sad to have left something I had really enjoyed, when it had been going well, but was pleased to get home, where I would not have the same pressures on me, and could hopefully find out what was really wrong.

A Few Days Out.

The last few days have been pretty busy, with two hospital appointments and volunteering.

 

On Monday I had an appointment at the National Hospital for Neurology and Neurosurgery in Queens Square, London, to see the Physiotherapy team.

 

I was got up at  6.00 am by Augusta, my carer.  After getting me out of bed, to the toilet, showered, dried and dressed, she was on her way.  I then had my pills and breakfast, and then got ready for going out.  Augusta and mum kept telling me it was cold outside, so against my better judgement I had mum help me on with a thin fleece jacket.  By the time I got to London I was boiling hot, and cursing the jacket.

 

Anyway, the transport ambulance arrived a bit early at 7.30 am, and I get myself out there and the crew get me strapped in.  There is already an old couple on board and we are due to pick up two other people on the way.  The ambulance is being crewed by Mr Grumpy and Mr Moany this morning, as they are already complaining about how many people they have to pick up and that they don't have enough time.

 

We get going, and despite having a Sat-Nav, they are using their own navigation system, which seems to be based on pot-luck.  They take a strange route right through the middle of Croydon, to get them to Thornton Heath to collect the next person.  Once she is on board, we are heading up to Clapham, to collect the next person.  It is clear that neither driver knows where the next pick up is, but they still don't consult either the Sat-Nav or a map.

 

We get to Clapham fine, but then proceed to drive down random streets looking for the address.  One of the patients asks for the address and we are told it is a nursing home, so we all start looking out for it.  After 15 minutes of going round in circles, the cry goes out that the home has been spotted.

 

When we get there the driver discovers that the lady we are collecting is in a wheelchair - this fact would be on his work sheet, as these show the patients mobility.  However he explains, that he already has a "very large" electric wheelchair on board and therefore can't take her.  I would point out that my powered wheelchair is actually smaller than most manual wheelchairs, and that if they had put me on board the ambulance better there would be plenty of room, but this doesn't seem like it would be very helpful at this point.

 

So after calling the transport office to say they can't take the lady, we get on our way again, listening to Grumpy and Moany, on how difficult their job is, how they are going to be late, etc.

 

They proceed by a very strange route into London and across the river.  We go to UCLH first and drop off one of the patients, who is now late for her appointment.  We then head down towards Queen Square, and stop at one of the small hospitals to drop off the old couple.  Normally, with a reasonable crew on the ambulance, I would offer to get out here and go round the corner on my own, but as they are such a miserable crew, I decide they can take me to the front door.

 

I am dropped off at about 10.00 am, but still have 45 minutes before my appointment.  I go off to find a toilet, and on the way find a man wandering round looking for the MRI Department.  He is obviously finding it difficult to walk, so I tell him to stay where he is, and go and find out where he needs to go.  Fortunately it is only a short walk down the corridor from where he is, so he holds the back of my chair and I go very slowly, and take him into the department.  I'm also able to point out where he can get a cup of coffee when he comes out.  So he is happy, and I've done my good deed for the day.

 

After I've been to the toilet, I go and check in at the Physio Department reception.  No sooner am I checked in than Mark, my physio, comes through.  His 10.00 am appointment  hasn't shown up, so he will see me early.

 

We review a couple of exercises we did last time, and see how I am getting on with them.  He also does some work on my calf muscles to loosen these.  He advises that the tilt table, he had wanted to show me wasn't available. 

 

I then told him about the fact that I have a stand up wheelchair on order, and we talk through that.  He is really pleased by this news, as he know that I want to stand more regularly and can see that this is probably the best solution.

 

We discuss a few more things and then he suggests that we don't make another appointment for the time being, and see how I get on with the new chair and standing in that.  If I have anything I want their help with I can ring and make an appointment, but if I haven't been in contact in the next 3 months they will discharge me.  That seems fine with me.

 

I advise him that I will be videoing me standing in the chair to share on here, and offer top send these to him, so that they could use these for other patients, so they could see how they work.  I also offered to be available to speak to patients about the chairs, as I had found myself that it was difficult getting user feedback, when I was looking into these chairs.  We exchanged details.

 

After leaving and checking in for transport home, I was in the back of an ambulance and on my way home, about 11.10 am.  After an uneventful journey home, and a happy driver, I was home about 12.30 pm, which was actually the time my appointment should have ended if we had done everything that we had intended to.  By the time I was home, I was sweltering in my jacket.

 

After lunch, and checking my emails and Facebook, I rested up in my armchair for the rest of the afternoon.

 

On Tuesday, I had morning volunteering, teaching people how to use computers at a local community day centre, the Douglas Brunton Centre.

 

My regular 10.00 am guy came along, and after going over a few bits on his emails, he wanted to know about the costs of travelling to Sunderland.  So I talked him through looking up rail and coach fares.  It is sometime until he wants to travel, but he is pleased to see how it is dome.

 

At 11.00 am I have a new person.  She is 90 and has never used a computer, but keeps being told she should learn, so she has come along to see what all the fuss is about.  She can't think why she wants to use a computer but at least she is giving it a try.  I spend about an hour talking to her and showing some things she might fine useful, and after the hour, she agrees to come back next week, and says that perhaps there is something to using the computer, but she still not convinced its for her.

 

You have to admire someone in their 90's trying out something completely new, and as I said if after a couple of weeks she doesn't want to continue at least she has tried and hasn't lost anything.  But I'm pretty sure we can get her interested in using a computer, if only a little bit.

 

My normal 12.00 pm is away this week, so instead of waiting for the Dial-a-Ride bus to take me home, as its a nice day, I head off in my chair.  Its about 2 miles home and takes about 30 minutes, and is quite a pleasant ride across Coulsdon Common.

 

In the afternoon, I do a few bits on my computer before resting up for another busy day tomorrow.

 

Wednesday starts at 6.00 am, sharp, as Augusta gets me up and ready for the day.  After breakfast, I get ready for the transport ambulance to take me up to the Royal Free Hospital in Hampstead, North London.

 

The ambulance arrives at 7.15 pm.  It isn't my normal driver, but a guy called Marcel.  He's a great character, so I know I'm going to have a fun time getting to the hospital. 

 

He hasn't got one of the big mini-bus size ambulances, but a smaller van, which can carry wheelchair passengers.  This has a number of disadvantages.  In heavy traffic, they can't use bus lanes as the larger ambulances can.  People don't treat them the same as the larger ambulances, by letting them out at junctions.

 

For me, they do not have much leg room.  Also being tall, my head is touching the ceiling in the van, which means every time we hit a pothole or speed hump, my head bangs against the ceiling.  Being sat so high I cannot see out of the windows as these are low in the vehicles body.

 

Marcel is a good laugh, and we chat all the way to the hospital and arrive just after 9.00 am.

 

I make my way to the ward and check in.  The ward has been extended to include some newly refurbished rooms.  These all look very nice, but as one of the nurses explains, they don't have the staff to be able to use these new facilities.

 

The system of getting a cannula put in has changed.  Instead of going and queuing up at a room the person doing the cannulation, will now come to you.

 

They are short of the regular staff today, so have drafted in a couple of extra staff from other wards to help out.  The nurse who comes to complete my admission is one of the staff drafted in.  She has some of my notes - I'm currently up to 5 files - but she doesn't have any of the up to date files.  I offer to fill in the admissions form for her, something I regularly do for the regular staff, but she says she has to do it herself.

 

I don't often criticise nurses, as I think they do a very difficult job under very difficult circumstances, but to me this was just a reason for her to sit down for 20 minutes going through a form.  She wasn't a healthcare assistant, but a fully qualified nurse, and surely she could be better employed than filling in a form.

 

However when it came to the form maybe she was actually over employed.

 

She asked my date of birth, and then advised that I was born a couple of days after her.  She then said that made me 46 years old!  I pointed out that no I would be the same age as her, 47.

 

She then asked my gender.

 

She asked my marital status, to which I replied "single".  A minute later she asked for details of my next of kin.  I said, "My mother, Mrs Rhoda Wood".  To which she wrote on the form, my mothers name and then the word "Wife".  I again had to point out her mistake.

 

When we had finished this, my respiratory physio, Christine, arrived and reviewed how I was doing with my BiPap machine.  Christine, brought along a new style of mask for me to try out.  Currently I have one with small "pillows" that fit into your nostrils, and the air is blown directly up the nostril.  I find this very easy to fit, and a lot less intrusive than other masks I have used previously.

 

The new mask has similar, easy to fit straps but the actual mask fits over the end of the nose covering both nostrils.  The air is blown in towards the nose rather than directly up the nose.  I'll see how I get along with it, but always have the old mask if I don't like the new one.

 

Christine hasn't booked the Lung Function Tests but this isn't critical, so we will do that when I come in again in 6 weeks time.  I email Christine when I am coming in, so that she can arrange things round the other appointments, and it saves me making extra visits.  She does want to check my blood gases but we agree that I'll call her once my treatment has finished, and we can do it then.

 

By now it is almost 10.30 am and still there is no sign of the cannulation team.  I ask the nurse and she says they have left the ward so she has to go off and find out what is happening.  Another male nurse appears and offers to put in the cannula, which he does really well.  I have very difficult veins, due to years of having cannula's put in, and usually even the experienced cannulation team struggle to get a needle in first time.

 

Just after 11.00 am they get me started on my treatment of 250 mg of Methylprednisolone.  This only takes one hour, plus a 10 minute saline flush.  I settle down to read my book.

 

After the drugs have finished, and the saline has flushed the tubes through, I am disconnected from the drip.  The nurse doesn't seem to know if she can take my cannula out, and after a bit of encouragement I persuade her to go and ask.  She comes back, and rather than take the cannula out carefully, she yanks it out, and lets it bleed everywhere, before putting a dressing on it.   Fortunately I manage to avoid bleeding on my cloths, but do make a nice puddle for her clean up from the floor.

 

I ring Christine, and she is busy at the time - I ask if its with lunch, to which she laughs - and we agree to leave the blood gases until next time.  My oxygen reading in my blood was 98% when they did my observations, so there's no problem at the moment.

 

On my way out I make an appointment for my next treatment in 6 weeks, and go down to wait in the transport department.  Its about 12.30 pm when I get down there and a little before 1.30 pm before I get called.

 

I am going home in one of the small vans again, so I will need to have a word with the transport people to try to ensure that I don't get these again otherwise I'm going to get a sore head, or they will get dents in the top of all of their vans.

 

We have two people to drop off near the hospital, and then its straight home.  It is very hot in the van, and I find out the other draw back to these.  They don't have air-conditioning, or many opening windows.

 

We get home around 4.00 pm, and I am exhausted, and sticky in my sweaty cloths.

 

It has been a long few days, but the up side is that I now have only one hospital appointment in the next month.

It's a small world!

In my blog earlier in the week, I mentioned about my volunteer work on a Tuesday morning at the Douglas Brunton Centre, where I help teach some of the members how to use computers.

 

I usually do three, 1 hour lessons, giving one-to-one tuition on how to use the internet, how to send emails, and anything else people want to know.  The Centre is for over 55's, so most of the members have never used computers before.

 

Anyway, following my blog, I was contacted by John, in Chester, who asked if the Douglas Brunton Centre is in Caterham - which it is - as his sister has been having lessons on a Thursday morning - with a lady tutor.

 

Well it just goes to show what a small world we live in.

 

Today is the 1st of September and this month has had quite a few significant milestones in my life happen during it.  I will be telling you about these over the coming weeks. 

 

However, on Monday I am back at the National Hospital for Neurology and Neurosurgery to see the Physiotherapists.  On Tuesday I am a the Douglas Brunton Centre in the morning and then resting, ready for Wednesday, when I'm at the Royal Free Hospital for my regular treatment, and possibly for Lung Function Tests. 

 

This means I won't be able to tell you about some of these landmarks on the dates these events happened but I will tell you about them.

 

The good news from Friday, is that the wound on my toe has cleared up.  It has only taken 4 weeks and 7 appointments to have it dressed by the nurse - which is actually quicker than these things normally take to clear up.

 

I'm off now to enjoy an afternoon of football, and to try and store up enough energy to help me through the next 3 days.

I have nothing particular to say - but I'm going to say it anyway!

After my blog earlier in the week - "Standing up solutions" - I've had an incredible response from people wishing me well with the new wheelchair, and especially from people eager to see a video of me using it.

 

Hopefully, I'll get the new wheelchair sometime in the middle of September and I'll post video's shortly afterwards.

 

I've not done much this week.  Monday was a bank holiday here in the UK - as someone gleefully reminded me, "the last one before Christmas" - so there wasn't much going on.

 

On Tuesday, I went to the Douglas Brunton Centre in the morning and spent 3 hours teaching people how to use the computers.  One of the ladies who has been coming to me for sometime, finished this week.  Its always a shame when someone finishes, but satisfying that I've been able to help them, to the point that they have the confidence to go off and use the computers on their own.  The good thing is that I'll have a new person come along next week, to start teaching.

 

When I got home in the afternoon, I was completely shattered and just got in my armchair and went to sleep.

 

On Wednesday, I had an appointment to see the nurse to dress my big toe.  About 4 weeks ago when my carer came to get me out of bed in the morning, she noticed that I had blood on the big toe of my left foot.  Since then I have been going to have the toe dressed by the nurse at my GP's practice.

 

Having Raynauds, Dermatomyosiitis with Scleraderma overlap, Inclusion Body Myositis, Diabetes, Lymphodema, Lipodermatosclerosis - among others -  and being in a wheelchair means that my circulation is very bad and this means that even relatively minor cuts on my feet are a source for concern, and take ages to clear up.  Although its a bit of a pain to keep having to go down the surgery to get it dressed, it really is much better than leaving it to my carers to look after, and hopefully if it gets infected, the nurses will pick it up very much quicker.

 

The nurses have a new dressing to go directly onto the wound, which looks a little like mustard powder when its sprinkled on, but forms a protective gel over the cut on the toe and should help speed up the healing process.  The nurse uses this and then gets a bit enthusiastic with the bandages, which means that my toes looks far worse now than it actually is.

My heavily bandaged toe! Yes that is only one toe bandaged.

 

Hopefully, when I get the new wheelchair and can stand up on a more regular basis, this will help to improve my circulation, and therefore reduce the time that small wounds like this take to heal.

 

Thursday, I had my physio come for our regular bi-weekly appointment.  This involves her moving my legs and arms, and exercising my joints, and stretching my muscles.  This helps to maintain the range of movement I have, and also helps keep my condition from deteriorating.

 

After an hour of being pulled about, I am worn out.

 

Today I have another appointment to have my toe dressed again.  I wasn't expecting to go but received a text reminder from the practice of an appointment.  I know there is another David Wood who is a patient at the practice, so I just hope it isn't his appointment and I end up having some horrible procedure performed on me!

 

I between times I have been working on something here which at present I don't want to say to much about for now.  However, in doing this work I have been in contact with quite a few fellow Myositis friends here in the UK.  It has been great to get to video talk, on Skype, with people who up to now I have only corresponded with on Facebook.  It has been particularly exciting to have picked the phone up this week and firstly to find myself chatting with Joy Walker, and then only this morning, to chat with Frank Smith.

 

I have also been inspired by the recent posts by Lesley Coleby, about her son, Tom's, bicycle ride from John O'Groats to Lands End.  It is a fantastic effort by a young man showing support for his mother in raising funds for a Charity here in the UK.  Not only is he putting in a massive physical effort but he has already raised a fantastic sum of money. 

 

Lesley, you should be very proud of your son, and Tom, thank you for your incredible effort.

 

This has got me thinking, what could I do to raise money?  Being in a wheelchair, and not having great movement or strength, I'm struggling to come up with any ideas, but wonder if any of you could think of something that I might be able to do to raise funds.

 

Before any comedians suggest pie eating - that would obviously be too easy and perhaps not ideal given my already expanding waste line.

 

So there you are.  I said I had nothing particular to say, but seemed to be able to string it out quite a bit.

 

I'm out at various appointments Monday, Tuesday and Wednesday next week, so I doubt that I'll be blogging again until the end of next week.  So in the meantime look after yourselves.

Standing up solutions

If you have been a regular reader of my blog - and I'm still amazed by the number of people reading this - you will be familiar with my trips to the National Hospital for Neurology and Neurosurgery (NHNN), to see the physiotherapists and their efforts to get me standing.

 

My last trip up there wasn't very successful, as for some reason I didn't seem able to stand very well, and the changes I asked to be made to how we used the standing frame only highlighted the fact that using this piece of equipment at home wasn't going to be an option.

 

At NHNN they had suggested that we try using a tilt table to see how I would get along with this.  After doing some research on the internet I'm not sure that this is going to be the solution.

 

It seems that with both the standing frame and the tilt table, I would need some input from at least one other person to help me use them.  As I only have Mum with me here full-time, I ideally I want a solution where I can use a piece of equipment with as little input from anyone else.

 

You may remember sometime back that I had a demonstration of a stand up powered wheelchair called a Levo C3.  This had gone really well.  Standing it had been easy.  It was comfortable as a wheelchair, and apart from the transfer in and out of the chair, which I would need help with anyway, I could use it on my own.

 

Levo C3 stand up powered wheelchair

 



There were however two problems with this chair. 

 

Firstly, the cost.  I was quoted a price in excess of £14,000 for a new wheelchair, like the one demonstrated to me.  Although I could have spread this cost interest free over 5 years, it still seems an excessive amount.

 

The other problem was that after looking into the Levo C3 on the internet, there were questions raised about its reliability.  One guy had said that after purchasing a new Levo C3 he had needed to return this 9 times in the first 12 months to sort out problems.  There was a suggestion from one supplier of wheelchairs, that the stand up wheelchairs were best used only indoors, as the vibrations of running them over uneven ground could lead to bits becoming loose and the chair not working.

 

It sounded like buying an expensive car, but not being able to use it on the road.

 

After having thought about things for a bit, I started to look at alternative to the Levo C3, to see if there was a cheaper option that could do the same thing. 

 

I found one called The Genie, which is made by a company called EasyCare Products Ltd.  This looked promising, in that it did much the same as the Levo C3, but the retail price started at £6,500.  I tried calling the telephone number shown on the website, but it just rang and rang. 

 

Eventually I found out that the company was a one man band, who made each chair specifically to order, but that he had recently been taken seriously ill and the company was in liquidation.  So if you are thinking of buying a wheelchair from this company or a second hand chair from them, I would strongly advise against it, as parts will not be available should things go wrong.

 

Any other alternative makes of stand up wheelchairs, had a starting price about the same as the Levo C3.

 

So I then started to look at the possibility of a second hand chair.  Straightaway I found a Levo C3 about 5 years old being sold on eBay for a little under £2,000.  However, the seller was located quite some distance away, and so getting to see it, let alone collecting it, was going to be a problem.

 

I then started ringing round locally to suppliers of wheelchairs to see if they would collect the chair for me, and then service it and refurbish any bits that needed replacing.   Alternatively, I asked if the ever had any second hand stand up wheelchairs for sale.  In every case, they would happily collect it but the could not service or refurbish it as they didn't deal withstand up wheelchair models.  Most of them said they simply could not get the parts.

 

Eventually I rang up Gerald Simonds Healthcare Ltd, the company who had demonstrated the Levo C3 to me, to ask if they had access to any second hand chairs, or if they could refurbish and service a second hand chair for me.  The person who answered the phone advised that they did not deal with second hand chairs.

 

I seemed to be hitting a brick wall every way I turned.  Then about 30 minutes after getting off the phone from Gerald Simonds Healthcare Ltd, Sean, who had come out to demonstrate the Levo C3 to me called back.

 

He asked if I would be interested in buying the chair which had been demonstrated to me.  He advised that it had a few scuff marks on the paint work, but it was only a couple of years old and had actually only done about 20 miles in all that time.  He agreed that before supplying the chair to me they would give it a full service, and the chair would come with a 6 month warranty.  They would also do annual services - but at a cost.

 

We discussed the cost, and after a bit of haggling, agreed on a price of £5,500.  On Friday, I paid a deposit, and Sean, thinks that I should get the chair about the 3rd week of September.

 

Although its still quite a cost, it seems like the best deal that I'm going to get.  I know I can use this chair with the minimum of help from another person, and if I only use this indoors, and keep my other chair for going out, its much more justifiable at this sort of cost.

 

Standing up is important to me.  Not just because of the benefits to my health, but also because I just feel better being able to stand.  Having been given the opportunity to stand at NHNN, it would seem a waste to stop once I can no longer go there.  By buying the Levo C3, although its still quite an expense, it allows me to be able to continue to stand on a more regular basis.

 

I can't wait to get it, and watch out for my next video of me standing up in it.

Joost van der Westhuizen

For those of you who aren't rugby fans, you probably don't recognise the name, Joost van der Westhuizen.  If you're a South African, you certainly will.

 

In November 1993, van der Westhuizen made his debut as a Springbok, playing at scrum-half, in Buenos Aires, when South Africa took on Argentina, and the international career of one of Rugby's greatest ever players began.

 

In 1995, he was part of the South African team that won the Rugby World Cup playing on home soil.   In a thrilling final against New Zealand, played in front of President Nelson Mandela, van der Westhuizen made a try saving tackle on the All Blacks juggernaut that was Jonah Lomu, after he had bulldozed his way through most of the Springboks team.  People still talk to him about "that tackle".

 

In 1997, he was a member of the South African team beaten by the British and Irish Lions, and was one of the players who fell for an outrageous dummy, by Matt Dawson, the Lions scrum-half, who then went over in the corner to score a crucial try and seal the series.

 

In 1999, van der Westhuizen, was the captain of the Springboks at the Rugby World Cup, where they narrowly lost the final to Australia.

 

When he eventually played his final game in Melbourne,  in 2003, against New Zealand, he had done everything, and won virtually everything, in the game.  He had 89 international caps for South Africa, a record for a South African player that still stands, and had scored a record 38 international tries.

 

He had speed, strength, skill and an incredible will to win.  He was the sort of player you would pay good money to see, but hated seeing rip through your team.

 

In a country that is Rugby mad, van der Westhuizen, was second only to God - but only just.

 

In 2008, he noticed some weakness in his left arm, and assumed it was an old Rugby injury.  Later that year it was obvious, it was more that that, and after seeing his personal doctor, was diagnosed, in 2011, with amyotrophic lateral sclerosis, one of the most common forms of motor neurone disease.

 

Also, in 2008, he suffered a suspected heart attack, and was then involved in a sex and drugs scandal, that cost him his job as a TV sports pundit, and his marriage.  Living a high-speed life as a reaction to his deteriorating health, actually gave him the insight to see what was important and what really mattered.

 

On diagnosis, he was given between two and five years to live.  His body, once his greatest asset, is now failing him.  His speech is slurred and his body is disobedient.  He is now confined to a wheelchair.  But his mind is still as sharp as ever.

 

Joost van der Westhuizen - as a Springbok, and as he is today

 



He now spends his time with his two children, and raising awareness of Motor Neurone disease, through his J9 Foundation. 

 

He has great memories of his career and acknowledges that he receives great support from the Rugby community, with many international team mates and opponents.  Later this year he hopes to travel to the UK, to watch the Springboks take on Wales and Scotland, in the autumn internationals.

 

This is a man I greatly admired for his ability on a Rugby pitch.  It is sad to read about someone who has been so active, so skillful, so brilliant, who is then brought down by the frailties of his own body, the one thing that he probably thought he could always rely on.

 

He admits to many highs and many lows, but having come through these he's is able to see life in a different light, and to focus on what's important - his children, his faith and his work with his foundation.

 

He is now 42. 

My Week - Part 2

Just for Simon, who complained that my blog yesterday was to long and should have been snappier, and to show that I'll take on board your comments about my blog, here's a Twitter style version.

 

"Got up. Did stuff. Went to bed.

 

Repeat as necessary."

 

Hope you like that better, Mr Marr, but can't help feeling that its missing that personal feel to it.