Well I'm new to this so treat me kindly. I'm not going to be a regular blogger but just when I think I've got something to say. Please feel free to comment on anything I write.
When I was diagnosed with Dermatomyositis (DM) in 1983, there was very little information available to be able to find out what this actually was and what it actually meant for me long-term. Home computers, the Internet and online support groups weren't even a twinkle in some geeks eye.
Back then, consultants and doctors weren't quite so forthcoming with information, and only seemed to be able to communicate using long winded medical terms. They certainly hadn't developed useful leaflets that might help you understand your condition - even a little.
To be fair, I was only 17, and after having the doctor write the name of the condition, my two other questions were probably:
1. Will I get better than I am now?
2. Will I be able to play sport?
The answer to question 1 was "Yes", but the answer to question 2 was a bit more vague and uncertain.
Anyway, to cut a long story short, I did get a lot better, although it took a long time, and I did get to play sport - Rugby.
And whilst I was feeling well, and able to do things, I never really worried about finding out more about my condition and what might happen in the future. In the back of my mind, I knew that I was only having a respite from the DM, so I tried to live my life as fully as possible. I played sport, I travelled to places round the world, I pursued a reasonable career, I enjoyed a lot of socialising, I belonged to an Adventure Activity club. I wasn't actively trying to cram as much into a few years as possible but I was always aware that tomorrow might be very different to today.
The one thing I did neglect, and I regret now, is any sort of personal relationship - but that's a tale for another day - moving on quickly.
In the late 90's, I started to find things becoming more difficult again. I was referred to a new consultant and a new set of doctors, and spent time in and out of hospital, having tests to check my original diagnosis. Whilst in hospital I found that there was a new openness to information about my condition. Doctors were more open to discussing things in layman's terms, and occasionally I'd find myself in a ward with another DM sufferer and we could compare notes.
In 2000, I was diagnosed as having Inclusion Body Myositis (IBM). This caused great excitement in the hospital. Doctors from all over the hospital came to see me, as they had never seen a case of IBM in the flesh. Student doctors would regularly be sent to talk to me, to see if they could diagnose me, and at one time I was used as an exam question for final year doctors - only one came close to a correct diagnosis.
But from all this attention I started to collect snippets of information about my conditions, and little bits of information started to tie together with my experiences, to start giving me a better picture of my illness's. As far as the DM was concerned, I was pretty comfortable with what I knew and what the future held.
But the IBM, was something new and this time I wanted to know more. The doctor I was seeing in my consultants team, confessed that no one there had any real experience of IBM, but that she would put me in touch with a Neurologist who might be able to give me some answers.
So one afternoon, late in 2000 I had my first trip to the National Hospital for Neurology and Neurosurgery in Queens Sq, London. I was seeing Prof. Anthony Schapira, who had been one of the doctors to look at my muscle biopsies and confirm the diagnosis of IBM. So he knew a bit of my background.
He did an examination of my muscle strength and asked me a little about doing everyday tasks and how difficult these were. He then talked a bit in general terms about IBM and how it affects you, and what I could expect. He pulled no punches in telling me that my strength would continue to deteriorate, that I could expect falls, difficulty getting out of chairs, etc, etc.
It was exactly what I had wanted to hear - not in terms of what I it meant for the future - but in terms of, I now knew what to expect.
And then at the end he said that within the next 5 years I'd be in a wheelchair.
I laughed at this and said there was no way that would be happening. We discussed it a bit and he admitted that he could not be completely sure that this would happen but based on where my strength was now, this is what he would expect. I then offered him a bet, that in 5 years time I'd comeback and see him and walk into his consulting room.
He took the bet, and agreed to see me again in 5 years, or before if I needed to.
I saw Prof. Schapira, a few time about in other hospitals, and he always took the time to stop and talk to me, and ask how my walking was and whether I'd got my wheelchair yet.
Well in 2005, I was glad to go back to see Prof. Schapira at NHNN, and to walk into his consulting room. He said he had never been more pleased to lose a bet. He examined me again, and was surprised how much strength I still had, although he did say that definitely in the next 10 years I'd be in a wheelchair. By this time, my walking was getting quite bad, and although I accused him of stacking any new bet in his favour with a 10 year timescale, I was pretty sure he was going to be right this time. We didn't renew our bet.
I actually became wheelchair bound in 2008.
There is so much information available today to help patients, not just with Myositis conditions, but with all conditions. Consultants and doctors are much more ready to talk to patients, in terms they can understand, and answer patients questions. The internet gives us access to a mass of accumulated information, that sometimes its difficult to know where to look first.
But one of the best innovations of the past few years has been support groups, and particularly the online support groups. These give each of us access to a whole library of first hand experience, that we can tap into 24/7. We can talk to people from all over the world, share in their highs and lows, hold their hands when they need our support and jump for joy - metaphorically - at their triumphs and successes.
If I was being diagnosed today, at 17, I'm not sure if I'd have accessed these support groups, but certainly having some much information, so ready available, would have helped me better understand what was wrong with me, what treatments were available and that I wasn't alone.
Equipment
Following on from my previous blogs about equipment, this isn't necessarily a piece of equipment that I use to help because of my medical conditions, but it is something that makes life easier, and better.
Before becoming to weak, I used to make my own bread. It was very satisfying, quite therapeutic and my bread was always a lot better than any I could buy in the shops.
When I lost too much strength in my arms, I could no longer kneed the dough, and so stopped making it. Since coming out of hospital in a wheelchair, I have purchased a bread machine. All you do is put the ingredients in, in the right order, set the programme and press start. And about 3 hours later, out comes a perfect, fresh loaf of bread.
Bread Machine
You can make all different sorts of bread, different size loaves, pizza dough and cakes. In some you can even make jams. You can also set a timer so that it will begin making the bread, so that its ready when you need it. Trust me there is nothing better than getting up in the morning to the smell of freshly baked bread, and having warm bread for breakfast.
Since having this for the past 4 years, I might have bought a couple of loaves from the baker, but every other loaf is homemade.
These three words are the tag line from a 2005 film called "Murderball". Not some horrific slasher movie, as the name might suggest, but a documentary about how some severely disabled guys overcome their limitations to take part in Paralympic sport. Below is the write up on the movie taken verbatum from Amazon:
"More than merely a sports documentary or an inspirational profile of triumph
over adversity, Murderball offers a refreshing and progressive attitude
toward disability while telling unforgettable stories about uniquely admirable
people. It's ostensibly a film about quadriplegic rugby (or "Murderball", as it
was formerly known), in which players with at least some loss of physical
function in all four limbs navigate modified wheelchairs in a hardcore,
full-contact sport that takes them all the way to the Paralympic Games in
Athens, Greece, in 2004. But as we get to know paralyzed or amputee players on
Team USA like Andy Cohn, Scott Hogsett, Bob Lujano and charismatic team
spokesman Mark Zupan, we come to understand that quad rugby is a saving grace
for these determined competitors, who battle Team Canada coach (and former Team
USA superstar) Joe Soares en route to the climactic contest in Athens. Simply
put, Murderball is the best film to date about living with a severe disability,
but codirectors Henry Alex Rubin and Dana Adam Shapiro avoid the sappy,
inspirational sentiment that hampers nearly all mainstream films involving
disability. By the time this blazing 85-minute film reaches its emotional
conclusion, the issue of disability is almost irrelevant; these guys are as
normal as anyone, and their life stories led to Murderball becoming the
most critically acclaimed documentary of 2005. --Jeff Shannon, Amazon.com
"
I purchased the DVD of this movie during last summers Paralympics, here in London. I haven't got round to watching it yet, but I'm assured its a great film, and am really looking forward to it. I'll let you know if it's worth seeing.
But it's those three words that really strike me everytime I look at the box, and its those words that give me the drive and hope in some of the things I do.
One of my early blogs, "A Truly Sensational Tuesday (Part 2)" - told of my visit to the National Hospital for Neurology and Neurosurgery (NHNN), and of my first attempt to stand, in a standing frame, for almost 4 years.
When I came out of hospital on 2nd September 2008, I was in a wheelchair and having had 2 months of intensive physio input, and gym sessions, whilst in the Wolfson Rehabilitation Centre in Wimbledon, I had reached a point where they could no longer keep me without me blocking any new patients that might need treatment. I understood this and agreed that any progress I might make was going to be longer term, so was passed over to the Physiotherapy department at my local hospital.
I saw the physio's for 6 weekly sessions and made a small amount of progress. Normally after 6 sessions they would stop seeing a patient, but pass them to the community physio team, but as I was making some progress they agreed to another 6 sessions. After these extra sessions came to an end they advised that they could no longer see me but they would pass me to the community physio team.
I was seen by the community physio team at home, and the conclusion of the lady who assessed me was that they could not help me, and if they tried, I would end up being a negative result on their statistics. Those weren't her exact words but that was the gist of what she was saying.
I argued and insisted on seeing someone more senior, and was eventually seen by one of the doctors, attached to the community physio's. His assessment, after no of physical examination, was that I would not be able to stand or walk, and therefore they could not use resource on me, that could be better used on other people, with a better long-term outlook.
It was now about March 2009 and I was banging my head against a brick wall.
I then turned to social services to see if they would supply a standing frame for me to use at home. At first the signs were hopeful. They seemed to be making all the right noises, and looking at various options. Then I suspect that they started to realised the cost involved, and became less keen on the idea.
Eventually in May 2010, Social Services set up a meeting at the Physiotherapy department in the local hospital. I was put into a standing frame, and expected to stand. This was make or break.
I had had no physio input for over a year, and had just been sat in my wheelchair. Not surprisingly I couldn't stand.
This gave Social Services the excuse then to say I couldn't stand, and therefore they could not afford to spend money in supplying a standing frame that I could not use. They also indicated that if I had a standing frame at home I would be a health and safety risk.
I argued that it wasn't a fair test. That I needed to build up to standing. That if I had 6 sessions of physio input, I'd be able to stand.
No one listened. I was written off as never being able to stand. Confined to a wheelchair for life!
But I always kept the dream alive, that I could and would stand at some point. I dreamed, sometimes literally having dreams about being able to stand, that it was possible.
I also believed in myself. Believed that I could do it. I just needed the opportunity and for someone else to believe that it was possible.
So when I meet up with Liz Dewar, at the Neuromuscular Centre, in Queens Square in December 2012, and she offered to help provide some physio input and the use of a standing frame, I hoped that finally I might have meet someone who would share my dream, and believed I could stand.
In March 2013, I had an inital assessment and was given some exercises to take home and do, to build up some strength in my lower back and in the core muscles, to help with any future standing.
In my previous blog, I talked about the first attempt, and stand in almost 4 years. This also included a video of my standing.
On Friday, I went again to NHNN.
I was picked up at about 8.00 am (3 dregrees in May) and driven round the outskirts of Croydon, up through Thornton Heath, Streatham and Brixton, and then along the South Bank of the Thames, passed Lambeth Palace and St Thomas's Hospital, and then across the river at Waterloo bridge. I always think this view down the Thames is one of the best, in either direction, but yesterday was a horrible wet day, so sadly the view wasn't at its best. At the end of Waterloo Bridge we went into the Strand Tunnel, which cuts out going round Aldwych, and brings you out part way up Kingsway. From there its only a short ride to Queens Square.
We arrived at NHNN at about 9.30 am, and after a quick dash out of the rain, and then another quick dash to the toilet, I reported to reception, ready for my 10.00 am appointment.
We used a different therapy gym on the 2nd floor of the hospital, where the standing frame was being kept. I was helped by Becca, Liz and Kevin, all of whom can be seen in the video below. During the session I managed 2 stands of approximately 4 minutes each. This compares with 2 stands previously of about 4 and 1 minute. Both stands felt easier and better than before.
The video below, shows both stands in their entirety. You can see the help I needed in straightening my chest and shoulders, provided by Becca, and the help provided by Liz in ensuring my legs remained in a good position, with my kness and hips getting straight. Liz also did the camera-work, moving this to show my feet and head, which would otherwise have been cut-off - probably no bad thing with my head. Kevin kept control of the standing frame, ensuring that I was raised up and down, gracefully.
The room as very busy, so space was limited to video, and also there is a lot of background noise. I have increased the volume on the sound so you can hear some of what we are saying - and I'll apologise now if there's any bad language. I've had a problem attaching the video as I normally do, but the link below will take you to the video.
It was a huge success, again, and I'm amazed at the improvement over the last visit.
I have been given some details of standing frames, and also of Stand Up Wheelchairs, to consider for home use, and also details of some possible help with funding these. So there is quite a bit to think about and look into. If any of you have used a Stand Up Wheelchair, I'd appreciate your feedback and experience on these, and what models you might have used.
In the afternnon, I had a session with Claire from the Occupational Therapy team. I have seen Claire on a couple of occasions before and she has provided me with splints for my hands - which I will blog about sometime - and also the Fatigue Management document, which I have put onto Facebook.
We discussed where we are with things and agreed that unless anything changes or if I need anything else, that we don't need to meet anymore. My file will be left open for about 3 months and then closed off.
Claire has been very nice, really easy to talk to and has provded me with some things that have been veryful. She has asked for my blog details so she can see what I am writing about - so I have to be especially nice about her.
I got home about 3.30 pm, after an ambulance journey the opposite way round to that described above.
It was a very good day. I feel I've made good progress with my standing, and need to keep up the exercises, and look forward to my next appointment in 4 weeks. I slept especially well Friday night.
So going back to my original theme.
I had the dream of standing, and despite what I was being told by just about every professional, I believed it would happen. Meeting Liz in December, she believed in me and in my ability to be be able to do it. Thanks to Liz, Becca and Kevin, I've started to achieve that dream of standing. They have given me the opportunity I needed, and that's all I ever wanted to be able to make it happen.
Dream, Believe,, Achieve.
Three simple words, but they can take you a hell of a long way.
There has been a lot written over the last couple of years about the declining interest in politics, and the falling numbers of people turning out to vote in elections. Reasons are looked for and answers are sought but no one seems able to find why people are becoming increasing disaffected by the political process and by politicians themselves.
A number of things stand out to me, that might point to why people seem to be less and less interested in politics.
All politicians basically look and sound the same. Increasingly we have MP's who seem to have come out of the same mould. Take for example the three leaders of the main political parties. They are all smart, well presented 40-something men, from well off families, who have received a good education at some of the best schools and universities in the country.
The messages they try to present are very much the same and a product of their upbringing and education. No longer do we hear senior politicians expressing views that might be controversial, or represent the real political ideology of their party. Today's politician is too concerned with popularity, voter numbers and opinion polls, to actually be able to say what they might really think, and what might actually be best. The differences between the Conservative, Labour and LibDem parties is now so slight, that its difficult to see the distinction.
No wonder young people look at politics and think what's the point, because there's nothing there for them to get passionate about or to believe in.
I grew up through the 70's and 80's and remember politicians and leaders like Harold Wilson, Ted Heath, Jim Callaghan and Margaret Thatcher. These were politicians who believed in something, who stood for something real, and whether you liked them or not, they engaged your attention. Politicians stood at the dispatch box and traded insults like boxers in a ring, slugging it out over harsh political realities. Politics at this time was about convictions in your political ideal. You stood for one party or other and there was no middle ground.
Even at school, the political lines were drawn. We were interested in politics well before we were old enough to vote, because politics was exciting, interesting, and politicians believed in what they were saying, and saying what they believed. They spoke to us in a way that today's politicians just don't seem to. There was passion, and conviction. You believed and trusted them. But most of all you could see what each one stood for.
Politics today, seems to me, to have become a blame-game. You'll never see a politicians get up and say they were wrong, or the policy wasn't working, they will always have a scapegoat, always be able to blame someone else.
A great example of this was yesterday when the Heath Secretary, Jeremy Hunt, got up in the House of Commons, to talk about the crisis in A&E units in many of the UK's hospitals. He outlined a number of measures to try to alleviate the crisis, but then went to great lengths to lay the fault for the problem, at the door of the previous Labour government.
And he isn't the first minister to do this, and won't be the last.
Frankly, as someone who has to make regular use of the NHS, I'm not hugely concerned whose fault a problem is. What I want to know is, how are you going to fix it, and will that fix work. By trying to lay the blame elsewhere it seems to me, you're trying to deflect attention away from your policy.
And how long do you have to be in government before you take responsibility for what's happening?
To constantly point the finger at previous governments and administrations, is weak politics. Get up say what the problem is and then tell me how you're going to fix it,. Don't point the finger at someone else in an effort to try to undermine them in the eyes of the electorate.
And its not just national politicians that have adopted this tactic. Yesterday I had the local LibDem leaflet put through the door, about the local council. I live in the borough of Croydon, a Tory lead council. The leaflet was full of bits about what isn't working, what needs fixing, aren't the council a disgrace and what they are wasting money on. There was nothing in any of the pieces to say what the LibDem's would actually do, or what they stood for - apart from their coffee morning. It was just "negative" politics.
As I said earlier, each of the leaders of the main political parties are in their 40's. Each of the them has been educated at good schools, and they have gone to the best universities. Having left university they have either had a short "career" lasting only 5 or 6 years before going into politics. In the case of David Cameron, he left university and went straight in politics.
If you contrast this with the 4 leaders I mentioned earlier, each of these were well educated both at school and university, but each had careers before joining the political establishment at Westminster, at about the age of 40. Harold Wilson became PM at age 48 but all the others were well over 50 before becoming PM.
This gave them the advantage of real life experience, working along side other "real" people. It gave them the opportunity to experience the hardships of having real jobs, the hardships of living real lives, and raising families. They could have a connection with the voting public, because they had lived lives along side them.
Contrast this with our career politicians today, who have never been in real jobs for years, struggled on a real salary, and never had to really make ends meet. How can they really connect with today's voters.
Both David Cameron and Nick Clegg are millionaires, and although Ed Milliband isn't reported to be in that league financially, he certainly isn't hard-up. And then people wonder why they can't connect with the electorate.
Politics at Westminster has become like "Stepford" where everyone looks the same, says pretty much the same, and everyone is afraid of stepping out of line, in case they upset the voters or affect the opinion polls.
It's bland, it's boring, and in all honesty, it's a turn off.
Before I go any further, I have reached the milestone of over 1.000 hits on my blog. I am amazed that people have taken the time to read my blog, and presumably keep returning to it.
Thank you, but haven't you got anything better to do!
In all seriousness I hope that you enjoy what I write and that you find at least some of it useful. I am certainly enjoying writing it, and reading you comments.
You will probably notice that I have changed the background illustration, which I intend to do on a regular basis.
As I predicted in my previous blog, "Equipment," as soon as I posted it I found a load of things I should have included but had forgotten about. So here's a few more things that I use to hopefully make my life a bit easier.
John Robertson, mentioned in a comment to me about his leg lifter, which reminded me that I had one to. This aid enables the leg to be lifted on or off a wheelchair or
bed by fitting the large loop over the foot, and pulling the handle loop. It has a wired frame inside to keep the leg
lifter straight and allows you to be able to move and lift the leg with minimal power needed.
I actually use mine to loop over my toes and then pull back towards me, thereby stretching my calf muscles.
Leg Stretcher - not modelled by me
I find this a very simple and easy to bit of equipment.
Sticking with the legs, I'm sure many of you struggle getting your socks on. To help with this I have a sock aid. This is again simple and easy to use. You put the sock over the large plastic bit, with the sole of the sock under this plastic bit. It then bends round with the sock so that you can then slide your foot into the sock. Then holding the ribbons, you simply pull, and the sock is pulled round your heel and up your leg,
Sock Aid
There is a similar device called Actiglide, which can be used to help put compression stockings on. Sadly I couldn't find a picture of this but if you "Google" Actiglide, this will take you to it. When the District Nurses come out to me, regarding my compression stockings, they always use this device, and it seems to make getting them on very easily, with little effort.
Mind you, having said that, my carer, Margaret, has been putting them on people for years, and has developed her own technique. She can get them on properly very quickly, and usually faster than the nurses using the Actiglide, but she is very strong.
To help take socks off, and to help with putting shirts and t-shirts on, I have a Dressing Stick. This is basically a stick with a hook at the end, and can be used to push up your shirts and hold them to enable you to get your arms in, as well as hooking into the top of your socks, to enable you to push them down.
Dressing Stick
To be honest with you, I do not find this to be particularly helpful. Very often I would use more effort using this, than not, and do not find it of much help. This maybe because having carers they help me with dressing, and putting my clothes on and off, so I don't get much practice with it. I was given this when I was in rehab, and always found that having used it to dress, I needed a rest, as I'd used so much energy, fiddling with the stick. Personally, I wouldn't recommend it, but I'd be interested to hear from anybody else who might use one and epecially if you feel it is of some benefit.
I also have a personal care alarm, which is supplied by Careline. I have a pendant, which I wear round my neck - you can get ones to wear on your wrists - and if I fall or get into any sort of difficulty when I'm on my own, I can push the button on the pendant, and the system then connects me to a telephone operator. The operator will ask me what the problem is, and assess if I need someone to help me up off the floor, or other help. If I have hurt myself they will call an ambulance, but otherwise they will send out two people to help. The operator will usually stay on the line with you, whilst you are waiting for assistance to arrive, which can be helpful, especially at night or if you have hurt yourself.
I have a "Key Safe" outside, which requires a combination to be able to open it. This is securely fitted to the wall outside, and you would need to know where it was, and the combination, to be able to get into it. Having this allows people attending in an emergency, to be able to open my door, and allows my carers to be able to come in, if I can't get to the door.
Key Safe
The people attending, will have been trained in moving and handling people, and will have equipment to help them. If for any reason they cannot help, they will call the operator and ask for help from ambulance or fire crews, as appropriate.
I haven't had to use the care alarm very often, but it is there for peace of mind, so I know that if something happens and I can't get to the phone, I can still contact someone for help. It also means that mum can go out, without having to worry about me.
Of course, the other piece of equipment I use all the time is my powered wheelchair. How could I forget that - d'oh!
I have a Viper S - yes, that's S for Sports model - which was supplied by the local wheelchair services. This is a reasonably compact model which can be used inside and out. It has a top speed to 10 kph and a range of 20 km, when fully charged, and weighs approx 102 kg. It can be adjusted to fit the user. This is really important, in making sure it is comfortable to sit in and doesn't cause sores by rubbing on the legs.
The position of the seat can be changed using the controller, as can the angle of the back rest. This allows me to be able to regularly change my sitting position, which is important in preventing pressure sores.
Viper S Powered Wheelchair
I use this wheelchair all of the time, so its important that it is comfortable and reliable. I've had it for about 4 and a half years and in that time, it has broken down twice, once when it lost all power and the batteries needed replacing, and once when it developed a fault and needed a major overhaul. Fortunately, there is a good service and maintenance contract in place, which means each of these issues where dealt with quickly. On the last occasion, they needed to take the wheelchair away to overhaul it, and I was without it for 2 days. That was a real nightmare, as I am so reliant on it.
I do have a manual wheelchair - which I hate. I find it uncomfortable, particularly because it doesn't support my back properly, and also I cannot move myself round in it, as I do not have enough strength in my upper body to be able to propel myself. I only use it on occasions where my powered wheelchair has been taken away, for maintenance, or to go to one particular hospital, where the transport company won't take me in my powered wheelchair.
My "horrible" Manual Wheelchair
One of the big issues I find with wheelchairs, whether manual or powered, is that there is no consistency in their design. Everyone seems to have a different mechanism for releasing the foot plates, or arms. On some the backs can be folded down for easy storage, but the mechanism to do this differs between models, and some are difficult to operate and to secure the back properly when its in the upright position. This makes it difficult for users, and particularly medical staff, to know how to operate them.
But the main issue to me is with the design of manual wheelchairs, and the fact that they are not designed to help maintain a proper posture for the person sitting in them. How often have you seen someone sat in a wheelchair, slumped forward? This is because little or no thought has gone into the design to ensure that the user can maintain a proper posture. Unlike a powered wheelchair, where you can have a number of moving parts, operated by the user from their controller, with a manual wheelchair, it is in a fixed position and takes little account of the needs of the individual sat in it. Often the reason someone is in a wheelchair is that they have a weakness in their body, or a medical condition that makes mobilising themselves diificult or dangerous. If they are then put in a wheelchair, where it is difficult for them to maintain their posture, and they become slouched. This will only exacerbate the problem, and could easily lead to greater core weakness, and breathing difficulties from the position the wheelchair encourages them to assume.
Getting fitted for a wheelchair, whether manual or powered, is vital. Not only for comfort, but to ensure that it fits you properly. You really need to be "measured" much like you would be if you were buying a new suit, to ensure it is the right height, width and depth, for you to be in. To low, and your knees are up round your ears when the foot plates are in. To high, and your legs dangle down, and you can't reach the floor with your feet. To narrow, and the sides rub on your legs causing sores. To wide, and you won't be able to fit through doors, etc. To deep, and you won't be able to get right back in the seat. Not deep enough, and you'll feel like you're tipping out.
If you only use a wheelchair occasionally, then you may be able to get by without this, but if you sit in a wheelchair all the time, this is essential. I had a really uncomfortable wheelchair when I first came out of hospital, and it was only when I got moved into a wheelchair that had been measured and set up specifically for me, that I realised how uncomfortable the original one was.
The other thing that's important is a decent cushion to sit on in your wheelchair. Each of us are different in what we require in a cushion, but if you're sat down all day its important to have a comfortable cushion, that will help you prevent pressure soires. I tried 2 or 3 different cushions before I found one I really liked. Mine is made of very solid foam, and has been likened to sitting on a brick by other people, but it works for me. You can also get lumber cushions, which can help support your back and maintain posture.
That's enough about wheelchairs.
To help me get in and out of my wheelchairs, whether to my armchair, bed or commode, I use a transfer board. These are also called sliding boards and banana boards. They are made of either plastic resin or wood, and are designed to be placed between one surface and another, with the end nearest to the user slightly underneath them, so they can easily slide/transfer across to the other surface. The alternative to this for me would mean I would need to be hoisted, which is not something I want. By using the transfer board, I can use my legs and upper body to help me move - therefore giving me a bit of exercise - and I have more independence using this.
Transfer Board - similar to mine
If you are using a transfer board, it is important to try to ensure that the surfaces you are going to and from, are of similar height. Transferring "uphill" is difficult, and tiring. By transferring "downhill" the transfer is easier and uses up less energy.
I will do a video of me transferring, in the not to distant future, to give you an idea of what's involved, and also so I can compare this to a previous video I did to see if my transfers have become more difficult.
There are also sliding sheets available that can be used with the transfer boards, which can make the transfer easier, but I find that they make everything too "slippery" and I do not have as much control over my movements. I have used them if someone else is there to help me move, at a time when I may be very tired and just need to make the transfer easier. There are transfer boards available, with sliding sheets attached to them.
Sliding Sheets
There are also large sliding sheets available, which can be used to help you move when in bed. You may well have seen one if you have been in hospital, where they are used to move patients who have slipped down in bed. The sliding sheet is put underneath the patient, and then the sheet can be pulled, and the patient is easily moved up the bed. I do have one of these but have never used it at home, but it is useful to have, just in case.
My shower chair, also doubles as my commode
My Shower Chair/Commode
I use this without the foot plates as I can the move myself about using my feet on the floor, rather than having to be pushed around.
So those are items of equipment that I have, but in addition to these, Val Foreman, suggested that I should also include my computer. This is a vital link to the outside world, especially during periods when it is difficult to get out of the house. It allows me to stay in touch with family and friends, and to interact with various support groups, through Facebook. It is also a vital source of information.
A piece of equipment I no longer have, but is worth mentioning is the Mountway Solo Toilet Lift. Before I was in a wheelchair I used to have great difficulty getting up from the toilet. I had used Toilet Seat Risers and even a rail round the toilet, and although these did help for some time, I would still find myself getting stuck on the toilet.
Toilet Seat Riser
Toilet Rail
Eventually, I got the Mountway Solo Toilet Lift. This is a battery powered seat that sits over and round the toilet, and lifts the user to a standing position.
Mountway Solo Toilet Lift
This is very easy to use, and very effective.
And lastly, in my last blog, "Equipment," I mentioned the Tefal Express Boil, which I use to make hot drinks. Frank Smith tried to purchase one on Sunday, but was unable to find it. Sadly other people have told me the same thing, and although it still appears on the Tefal website, as well as some other retailers, it maybe that this is no longer available. Frank instead purchased a Morphy Richards Meno One Cup, which is the same sort of thing as the Tefal.
Morphy Richards Meno One Cup
Frank, is very happy with his purchase, as you will see from his blog. Hopefully the link below will take you straight to Frank's blog. Always a good read.
I thought it might be useful if I did a blog, about the equipment I use to help me in my everyday life. I hope some of the things I use will be helpful to others, and will help people to see what options there are available.
The biggest piece of equipment, and here I'm using the term in its loosest form, is where I live.
In 2005, I was living in a two bedroom terraced house on the outskirts of Croydon. I had bought the house cheaply, as it needed quite a lot of work doing to it, some I could do myself as it was mostly cosmetic. But the big draw back with the house was the stairs. These were very steep and climbing them was a bit like scaling the north face of the Eiger, especially at the end of the day, and coming down, once gravity got to work, was a bit like going down the Cresta Run.
Well one Sunday morning I got up to go to the bathroom, which was downstairs at the back of the house, and I lost my footing on one of the top steps and fell all the way down. I wasn't hurt and was able to reach a phone and called a friend to come and help me up, but as I lay there I started to think about how easily I'd gone down and what a struggle the stairs were, and decided I needed to sell up and get somewhere on one floor.
I had also been told on many occasions that I was heading for a wheelchair - that's a story for another time - so my current house was also completely impractical if that were to happen.
I was lucky to sell the house for almost double what I had bought it for, and this allowed me to buy a bungalow in a nice area. I moved in on 19th December 2005.
Front of the bungalow - hiden by the bushes
Back of the bungalow
The bungalow needed some work, but it gave me a chance to live in it and take my time to adapt it to my needs. One of the first thing I did was get the back garden, dug up and replaced with paving with raised beds, and generally make it more wheelchair friendly.
One year after
A rare photo of me, stood up, and displaying my Pred/Guinness gut. Now you can see why I don't have many picture's of myself!
I then went to work on the front garden, getting all the bushes covering the windows dug out, and then removing all the grass, which was basically the foxes playground. I then had a new wall built at the front, with a flower bed behind, and then put in hard standing for a car, and paved the driveway properly.
The front of the house revealed
I had grab rails placed outside both the front and back doors to help me get in and out of the doors. Along the side of the bungalow, social services fitted a bar from the front corner to the front door, to provide support walking to the door. The irony is, that they fitted this whilst I was in hospital, and when I came out I could no longer walk, so I've never used it.
Once I had sorted the exterior out, I started to look into what needed doing inside. The bathroom is small, but was very cramped as whoever had designed its layout before had tried to cram one of everything in. Again, thinking ahead to a potential wheelchair and the access needed, I decided to look into getting a wet-room fitted.
The cost of this wasn't actually as high as I had anticipated, and with good design, I managed to maximise the space, as well as making it a functional area for a wheelchair user.
One thing I did spend a lot on was the shower. Having a nice hot shower first thing in the morning is one of lifes great pleasures - for me anyway - so having a good, reliable shower is important to me. I purchased an Aqualisa shower. These were recommended to me as being one of the best showers arround, and it has certainly proved to be money well spent. It has a processing box in the loft, which the water is feed through and mixed so that when it comes out of the shower head, its at exactly the temperatiure you require, and once at that temperature, it stays there.
It also has a remote control. This means that I can turn the shower on, without sitting underneath it, and let it get to the required temperature, before going under. Now having to use a mobile shower chair, under normal circumstances my carer would put me in the shower and turn it on, and I'd have the cold water go over me. With this I can sit to one side and then wait until the water is going through at my required temperature and then move underneath it.
I also have a tap that activates with a sensor when you put your hands underneath. This saves me having to reach for a tap lever to turn on/off. It has a battery unit in the cabinet underneath, which powers it, and uses 4 x AA batteries. It is a mixer tap and you can pre-set the maximum temperature, so that it doesn't run too hot.
Sensor Tap
Unfortunately, as my bathroom is fairly small, its difficult to photograph, but there are some pictures of it, along with the remote control for the shower, on the video I've done to accompany this blog.
To help me shower, I use long handle sponges, which can be bent so that you can reach all your bits!. Using these I can pretty much shower myself without my carer having to help me, except for washing my hair.
Long handle sponge
I also have a shower chair/commode, which I use to showr on, and which we also use to push me over the toilet if I need to open my bowels.
If, like me, you have difficulty in reaching to clean yourself after opening your bowels, then you might find a "Bottom Wiper" useful. When I was in rehab, about 5 years ago, the OT looking after me, suggested that I use one. She described it as,"A metal bar, with a spikey bit at the end for wiping your bottom." Ouch!!!
Well, its not very much like that, as you can see from the picture below.
Bottom wiper
Basically, you wrap toilet paper round the end - in the pictire its the end at the bottom of the picture - and then holding the other end you can reach under and wipe yourself. Its great - easy to use, hygienic, gets the job done - and saves any embarrassment if you need help, and you can keep your dignity. They also come in a folding travel versions, which can be discreetly carried with you. I'm always surprised that me carers have never seen one, as it would save them needing to clean people, and give people more independence.
The floor in the bathroom is a non-slip flooring, which covers the whole floor, and even when wet it is completely non-slip.
I also have two grab rails either side of the shower which I used for stability in the shower when I used to be able to stand, and which now, mum finds useful.
Shortly after having had the bathroom done, I was the hospitalised, and when I came out I was in the wheelchair.
One of the first jobs that needed doing was to make the kitchen accessible to me. When I moved in the kitchen was a very narrow, galley style kitchen, and I would not have been able to get in it, in my wheelchair. So we knocked out the wall between the kitchen and living room, and made it open plan, with one of the work surfaces in the kitchen, making the division between the two areas. This then allowed us to pinch some of the living room space to make the kitchen wider.
The worktop on the area which forms the division, is the normal height for a kitchen worktop, with the units being a standard size, and housing the fridge, freezer and a small dishwasher. On the other side of the kitchen, the worktop has been designed to be at a lower lever, with some lower units, and a gap between the units and under the sink, so that I can pull myself upto the work surface with my legs and wheelchair fitting underneath. This allows me to be able to work, on a work surface at a height, that suits me. You'll be able to see this in the video, when you see me making a cup of tea.
Instead of conventional cupboards below the worktops, I have draw units of various sizes. These are easier for me to open and reach into from my wheelchair, rather than having to bend and reach the shelves in cupboards. Both the fridge and freezer have pull out draws. All the draws and the upper cupboards, have soft closing mechanisms.
In the kitchen, I use a Tefal Express Boil, which you can see me use in the video. Basically you can put a cup under the spout, press a button and get a cupful of boiling water. You can set the cup size, so you only get enough water for whatever size cup you are using, and as it only boils the water you need, its more enegry efficient, and therefore better for the environment.
Tefal Express Boil
I also use an electric tin opener, which you just put on top of the can, press a button and it the works its way round cutting the top off the tin, and a jar opener, which gives you extra leverage on those difficult to open jars.
Electric tin opener
Jar opener
In the living room I have two pieces of equipment. The first is my riser/recliner armchair. This is a Doge armchair, and is basically a standard riser/recliner, with two adaptations. The arm on the right hand side pivots up and back, so that I can pull my wheelchair along side and transfer in and out using my transfer board. This arm is shown in the video. Also when it rises, rather than tipping forward as most of these armchairs do, this just rises vertically. This allows me to adjust the height of the seat to enable me to transfer safely, without changing the angle of the seat.
The cushion on the seat of the armchair is a water cell cushion, which effectively means that it is made up of small cells filled with water. This allows the seat to move to fit how you are sitting, to provide the most support and comfort, and, most importantly, to prevent pressure sores.
The other piece of equipment in the living room is an electronic door opener that is fitted to the patio doors. My front door is too narrow for me to be able to get through it in my wheelchair, and as we have a shared driveway between properties, it would be impractical to have a ram outside the front door.
Opening and closing doors is one of the most difficult things to do on my own from my wheelchair. It means leaning forward and reaching for a handle, which is often too high to reach, and then trying to pull the door, whilst manoeuvring the wheelchair, all without falling out of the chair and holding a door that's usually too heavy.
The patio door is fitted with an electronic door opener. I simply push a button on a key fob, a bit like a car remote, and the door is released and opens. I can go out and the press the fob again and the door closes, and locks behind me. This enables me to be able to go in and out as I want, when I want, and to be able to lock the door securely behind me. This is demonstrated on the video, but unfortunately the device isn't shown very clearly.
The patio door has a level threshold, with the floor inside, so there is no framework from the door to get over, and this leads onto my ramp, which was built for me by a friend.
In my bedroom I have an electric bed that works like a hospital bed, but doesn't look like one.
My bed
When I first bought the bed it was a double, as in the picture, but when I was in hospital, and it was apparent that I would need help from carers, and we needed more room in the bedroom. A friend, who is a carpenter, came and cut the bed in half, fitted extra feet, and then on the sides he had cut fitted leather to hide the cuts. This then gave me two electric single beds, and mum now uses the other.
On the side of the bed I have a bed lever, similar to the one shown in the picture below. The upright part of the bar can be lifted out, so that it isn't in the way when I'm getting into bed, but I can hold the bar and pull on this, as my carer helps me get upright and sat on the side of the bed in the mornings.
Bed lever
I also have my BiPap machine which I use during the night to help me breath properly. I have been using this for about 8 years and find that using it gives me a full nights sleep, usually without me snoring, and that I wake up refreshed in the mornings. There is a picture of this shown in the video.
At night I use a fleece neck support pillow. I have used this for about 2 years now. I started to find that in the morning my neck would be stiff and weak. I tried various different neck support pillows but found that this fleece one provides the right amount of support, still allows me to be able to move my head and neck, and also that the fleece keeps me neck warm, stopping any stiffness.
Fleece neck support pillow - not modelled by me
I also have an Oxycycle, which I can use to exercise my legs, with the help of an electric motor, which helps to maintain the movement in my legs. I don't use this as much as I should because it's exhausting to use, but mainly, as I need help getting my feet into the pedal straps, which means mum lifting my feet.
Oxycycle
I do find this is very useful, and although it is exhausting, it always feel nice to get my legs moving, and my heart pumping a bit more than normal. You could also use this to exercise your arms and shoulders, but its too heavy for mum or me to lift onto a table.
I have long handle grabbers in most rooms, in case I drop things, and I've become pretty adept in picking up most things, even my pills on the odd accasions I drop these.
Long handle grabber
I also have a system which was set up by a company called Possum, which is an electronic device that allows be to perform certain functions from an electronic box and screen. With this I can open and close the patio door, I can turn on and off lights, without using the switches on the wall, I can answer the phone or make calls without having to pick up the phone, I can control the TV and DVD player remotely. It also allows me to answer the door remotely, by activating an intercom so I can speak to the person at the door and the release the door if I want them to come in.
This system can be set up for a whole range of different options depending on the users needs. This was given to me by a charity so I only have a very basic package, but you could use it for a far wider range of options.
Possum control box
This box can be fitted to my chair, or to a bar on my bed, so that I can use it anywhere without having to carry it around in my hands.
I have had one small internal wall taken down, which just makes it easier getting from the bedrooms, and front door into the living room.
In addition to this I have a least one double electical socket in each room raised to a height where it is easy for me to reach, and all of the light switches have been lowered and fitted with large switches, making them easy to reach but also easy to turn on/off.
I only have one internal door in the bungalow, which is the door to my mums bedroom. This just makes it easier for me getting round in my wheelchair and lessens the chances of me chipping paintwork.
Shortly after being in a wheelchair I had all the carpets removed from the bungalow and replaced by wooden flooring. This flooring is used in small shop and office units, and can withstand a greater weight than most domestic flooring. This is important with the weigth of my powered wheelchair. Its amazing how much muck I bring in on the tyres of my wheelchair and having wooden floors just makes it easier to keep clean.
Inside with the wooden floor
I think that just about covers everything, but I'm sure as soon as I post this I'll remember something else. The video below just gives a brief view of some of the items shown above. Its not quite as good or clear as I had perhaps intended, but then again I'm no Steven Spielberg. I do not have a proper microphone so have put on a soundtrack to cover my various noises. The music is "A Design for Life" by Manic Street Preachers. The title just seems appropriate. I hope is gives you some idea.
I hope you have enjoyed what has become a rather longer than anticipated look at the things I have and use to make my life easier, and to help me live as independently as possible. If you have any questions about anything, please ask, or if you have equipment you use that you think may help me, then I'd be happy to hear from you.
Yesterday in the news here in the UK, there was talk from doctors leaders about the need to screen carers for signs of depression. It is thought that 1 in 20 patients registered with a GP practice is providing unpaid care, and in total an estimated 7 million people provide care for a sick or disabled child, or adult who could not otherwise live independently. Of those it is thought that about 40%, are at risk of depression or stress because of their caring role.
People caring for a relative or friend, very often do so without thought for themselves and their health. Carers neglect their own needs, instead concentrating on the requirements of those they look after, but it is only a matter of time before they, themselves become ill.
In most cases GP's are aware of a patients caring role, and it is suggested that if GP's were more active in there involvement with these carers they could help identify potential problems in the early stages, It is suggested that carers should have more routine appointments with their GP's, that there should be carers "champions"at GP practices, that GP's should have a register of carers, and that audits should be carried out to measure improvements to carer support.
With GP's already under a huge workload from recent changes to the NHS, and the ever increasing demands from the government, it is difficult to see how GP's will fit this extra work in without extra resource and money being made available.
Also many carers are afraid of "failing" in their role as a carer. Very often they cannot admit to the person they care for that they have a problem, for fear of the impact of this on that individual, and for fear that if they can't fulfil their role, what will happen to their relative or friend. This isolation, alongside the pressures, fears and anxieties of supporting an ill or disabled loved one, can take a serious toll on carers' mental health
The Department of Heath says that the government's care bill will help people find what support is available to them.
Currently it is estimated that unpaid carers save the public purse £119bn a year.
I remember reading an article called "Day in the Life" in the Sunday Times Magazine a few years ago, where an 8 year old girl, spoke about her daily routine, looking after her mother who has MS, and her younger sister, while still trying to attend school. She had to get her mother out of bed, washed and dressed, as well as her sister, before she went off to school and then spent the day worrying about what she would find when she returned home. Would her mother have fallen, and be on the floor, or would she have messed herself and need changing, or would she go home and find her mother fine. She just wouldn't know before she walked through the door. She talked about having no friends at school, because she couldn't go out to play, or to parties, because she needed to be with her mother. Neither the school or her GP were aware of the role she fulfilled, and the article was absolutely heart wrenching, to think her childhood was lost in all this responsibility and worry.
And the sad thing is, that there are probably hundreds like her.
Will the governments care bill make any difference? Sadly not. It will be a lot of fine words and good intentions, but there simply isn't the real political will, or the money, to really make a difference to social care and to support carers.
Local councils reported recently that over £800 million will be taken out of their budgets, and this is going to effect services. One of the areas this will hit, is social care, and who and what they can provide. So again this is going to put more of a burden on unpaid carers.
I'm lucky. I have carers who come to me 3 times a day, and my mother lives with me and helps with my care and meals, between these visits. She's 81, and is amazing. We can talk openly about the impact that being with me has on her and her health. I encourage her to get out and have time away from me, and when I'm out, she can relax and do what she wants. But even her role of as a "part-time" carer - and I don't think that's really an adequate term for it - is having an impact on her health.
I've often said that being ill is easy. I get all the attention and support from doctors, nurses, social workers, etc. but my mother doesn't get any support. She just has to be there, to help and support, and to watch me be ill. Now that can't be easy for any mother.
So what I am saying here. Well its simple really. The government and local councils need to do more to help and support carers. The care bill is a start but it doesn't go far enough. Unless there is a real commitment to fund social care properly, then there is a crisis waiting to happen. All party concensus needs to be reached to make this a non-political issue and sort it out properly once and for all.
Some one once said that you can judge a country by the way it treats it's children. With the ever increasing elderly population, and the growing numbers of disabled and vunerable people, this will soon become our new bench mark.
If you have someone who looks after you, then remember how special they are. It could be your husband or wife, your son or daughter, or your mum or dad, but they are special, and treat them as such. Try to sit down with them, and ask them how they are, how they're coping, and thank them for what they do.
And if you are looking after some one, then you are a special person. Take time for yourself, and remember that what you do is remarkable.
Its not Mothers Day here in the UK today - but I don't need to have a special day once a year to tell my mum how great she is. I hope I do that everyday, because that's how I feel. I have the best mum in the world - FACT!!!!!!!!!!!!!
