A short history of wheelchairs

As a wheelchair user, I started to wonder how my life might have been had I been born 100 years ago, 500 years ago or 1000 years ago and (assuming I actually survived) this would be very dependant on the types of wheelchairs that were available.  With this in mind, I ventured into the history of wheelchairs.

Early images of wheelchairs are found in stone carvings in China and on a Greek vase.  The former showing a wheeled transport device and the latter a wheeled bed for a child.  But despite these early records, the first known dedicated wheelchair was invented in 1595.  It was made for Phillip II of Spain and had small wheels at the end of the chair’s legs, a platform for his legs and an adjustable backrest.  It wasn’t self propelled but then again he was a king so was probably surrounded by servants anyway!

Sixty years later, Stephen Farffler made a self propelling chair which was mounted on a three wheel chassis and had handles on the front wheel which allowed the user to move without assistance.  The handles operated a bit like a hand bike…

Possibly the best known early wheelchair is the Bath chair, named after the city, not the washing facility.  It was created by John Dawson and had two large wheels and one small.  It was steered using a stiff handle but was very heavy and had to be pushed or pulled.  This version of the wheelchair outsold others in the early 19th century but it wasn’t comfortable and so adjustments and improvements were made over time.

In 1869 we have a patent for the first wheelchair with rear push wheels and small front casters, something we would easily recognise today.  Again, this model needed improving and a few years later, hollow rubber wheels were used, pushrims for self propelling were invented in 1881 and in 1900 we find the first spoked wheels.

Injured soldiers returning home from World War Two were more likely to survive certain injuries because of the discovery of antibiotics.  This meant that there was a sudden influx of people who had spinal injuries etc that would previously have killed them.  In turn, this meant an increased need for wheelchairs.  Depending on their injury, some of these veterans would have been unable to self propel and, having previously been active, would have found themselves dependant on others.

It was one of these soldiers, who was frustrated with his situation, who advocated for a better wheelchair.  This combined with Canada’s commitment to veteran support, resulted in a request to George Klein to build a brand new type of wheelchair.  After Canadian vets had been given their electrically powered chairs, an effort was made to engage manufacturers.  One of which was Everest & Jennings.

Harry Jennings built the first folding, tubular steel wheelchair in 1932 for his friend Herbert Everest.  They then joined forces to set up Everest & Jennings who monopolised the wheelchair market for years.  In 1956 they were the first to mass produce electric wheelchairs.  These were fairly rudimentary, had only two speeds and were very bulky but still, they paved the way for the plethora of electric wheelchairs we have today.

Whilst slightly off topic, it’s worth noting that 1952 saw the beginning of wheelchair sports and by 1960, the first Paralympic games were being held.  The increased visibility of people with wheelchairs alongside the more specialised uses for them, almost certainly aided the refinement and variety of chairs that we are now lucky to have.

Moving forward, in the second half of the twentieth century, developments to the wheelchair happened quickly.  Motors were added to standard wheelchairs, then lightweight aluminium was used and the availability of plastic inevitably led to further innovations. Further, as computer technology boomed in the last fifty or so years, we have seen these enhance and improve the available powerchair technology.

Today we have wheelchairs that can be used in sports, that are very lightweight, that can raise the user up so that we can sit at bars, that can be controlled in different ways and which ultimately allow many more people control over their movement.  Wheelchairs, powered or not, are highly customisable and although I haven’t sat in a pre-20th century one, I can imagine, are significantly more comfortable and allow for a better quality of life.

Aside, please don’t use the term wheelchair bound.  A lot of wheelchair users can walk or stand, and even those who can’t, aren’t tied to their chairs.  It also makes it seem like wheelchairs are a terrible burden and whilst they aren’t perfect, they are amazing and significantly improve people’s lives.

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A short history of prosthetics

Prosthetics have both a practical purpose and an emotional one, with some people feeling that they help to make them whole.  In ancient Egypt, there is evidence of a woman with a prosthetic toe that is made from wood and leather and some people say wouldn’t have affected her ability to walk.  Those people hypothesise that because they were a sandal wearing culture, she had felt it important to her identity to have the prosthetic.  Others believe that it will have contributed to her ability to walk.  Either way, I think it’s pretty amazing that we have evidence of prosthetics that old, especially given the materials they were generally made with.  In Egypt they were made from fibre and wood and echoed the importance they placed on wholeness.

Another early example is an artificial leg that dates back to about 300 BC.  It was found in Italy and was made of bronze and iron with a wooden core.  It’s thought this was held in place by a leather belt.

Whilst we tend to think of a prosthesis as replacing a limb, they are used to replace other body parts including eyes, breasts and teeth.  And when it comes to teeth we find a lot more literature.  Did you know, for example, that at one time hippo ivory was used to make false teeth as it was stronger than alternative ivory and didn’t yellow so quickly.

Etruscan false teeth from between 8th and 3rd century BCE have been discovered as have sets of false teeth which were made from animal teeth or even human teeth and were connected to intact teeth with a metal band.  Anyway, I don’t like the dentist and all this talk about teeth is too much for me….

Hook hands, peg legs and iron hands were used from roman times to the end of the middle ages with little advancement in technology.  In the 16th century, a hinged arm and a locking leg were invented.  The heavy iron was replaced by a mix of leather, paper and glue tanks for a French locksmith of all people.  We also have to thank watchmakers for contributing to the development of prosthetics as gears and springs were used and needed a careful approach for the intricate parts.

The history of prosthetics is about the history of the prosthetics of the wealthy, or lucky, as is often the case today.  Knights may have been fitted with them because of their status but possibly also because the history of prosthetics has always been intertwined with the history of wars and the soldiers that fight in them.  We know of a roman general that lost his hand and couldn’t fight, but with the aid of an iron prosthetic that could hold his shield, he was able to retain his identity as a general and presumably return to war…

Around 1800, a breakthrough was made in the mechanics of prosthetic limbs by James Potts.  His ‘Anglesey’ leg had articulated parts and used cat-gut tendons to hinge the knee and ankle, creating a walking motion when the toe was lifted.  This design was further developed by adding a heel spring.

The American Civil War saw many many limbs amputated and the US government supplied these soldiers with prosthetics, allowing them to return to work…. So kind!  This vastly increased demand and presumably there were tweaks to design at the same time.  Midway through the war, a new way of attaching the prosthesis was developed that used suction rather than straps.  Another prosthetic that came from the war was a rubber hand which had fingers and was able to connect to an array of attachments.

World War One also saw an increased demand for prosthetics but poor designs and poor fitting led to many going unused.  Common complaints included pain related to friction between prosthesis and the amputated limb and the weight of the prosthetic.

Throughout most of history, prosthetic limbs were wood or metal although I read about one that was made from plaster and animal glue and another that was iron with a wooden core.  More recently, lighter options have become available.  Lightweight aluminium combined with the suction attachment made for more practical and more affordable options and more recently plastics and electronics have followed.  Another big change is around the look of them.  Historically, prosthetic limbs have been designed to replicate the limb and to make other people feel comfortable but in recent decades, there has been a noticeable move towards function over appearance.

In the 1960s, children affected by thalidomide were born with malformed limbs and technological solutions to medical issues were sought.  These came in the form of personalised prosthetics which sped up the advancement of this area.  Gas powered prosthetics were invented to help children and whilst they may have sounded great, and certainly I’m sure some kids found them helpful, others found them difficult and cumbersome.  They required a lot of time away from home to fit them and teach the children how to use them and this obviously had to be repeated as the child grew.  Further, as the child grew up, they wanted to be able to do more with their prosthesis such as feed themselves, write and go to the toilet by themselves.  To be able to do these tasks would make mainstream school accessible.

Gas had been chosen as a power source because batteries at that point were impractical.  As time went on, other ideas were considered and someone thought that a more modular system might work and by this point technology had shrunk making batteries more practical.

In the 1990s, knees that used computer chips were introduced.  The chip controlled the speed and swing of the knee joint and sensors provided feedback.  In 1998 the first electric arm was fitted.  The i-limb was the first prosthetic to have individually powered fingers and gave the user more control and more feedback.  As well as limbs that allow for walking, we have seen limbs that are designed for running and other sports.

Today we are seeing a more personalised approach to prosthetics including the alternative limb project which seeks to go beyond the replacement of a limb and creates imaginative and personalised options.

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Opioid addiction and chronic pain: How to tell when someone is addicted

Because of the legitimate pain and need for pain relief, identifying when a chronic pain patient is addicted is a very difficult area.  It is common for someone taking opioids to become physically dependant and tolerant of them over time but this isn’t the same as an addiction.  For addiction to be present, you’d expect behavioural changes in addition to the dependence.

The behavioural changes in a person addicted to necessary prescription medication tend to be harder to spot than those in a person addicted to unprescribed substances.  As they have a legitimate need, it’s easier to cover up or explain away possible signs of addiction and some of the sings of addiction are also explained by the chronic pain itself.  However, a cluster of signs can indicate the need for concern and to explore the possibility of someone being addicted.  These signs include:

  • Frequent contact with doctors, whether that’s visits or phone calls
  • Having appointments about a different issue and asking for a prescription at the end of the appointment
  • Doctor shopping – contacting or visiting different doctors so there is less continuity and the person can play the doctors off each other a bit to try and get more opiates.
  • Manipulating care providers
  • Frequently complaining about medical conditions which justify the need for the drug use and which also justify the need for increasing dosages.
  • Complaining about new medical conditions and pain.
  • Reporting certain drug allergies and lack of therapeutic effect of alternative drugs which mean that the opioid is the only option for pain relief.
  • Frequent reports of losing medication and prescriptions.
  • Declining work or school performance
  • Relationship dysfunction
  • Decreased interest in other pain relieving options such as regular physiotherapy and other ‘health’ work needed to improve quality of life
  • Defensiveness when talking about prescriptions.
  • Increased irritability and anxiousness especially about the availability of the drug, when the next dose is etc
  • Overwhelming concern about the amount of medication etc
  • Mood swings, irritability, anxiety etc
  • Concern from friends, family and other observers
  • Insisting on managing own medication, especially in hospital settings
  • Increasing side effects and lack on concern about them
  • Signs of withdrawal

The physical side effects of opiates can also be a warning sign, especially if they seem to be getting worse.  When it comes to opiates, there is a sedative effect which can be seen in confusion, poor judgement, poor memory, drowsiness and unsteadiness.

If the person is open to a discussion, it can be much easier to get an idea about addiction however the caginess that comes with addiction can make this very difficult.  Unless a person is very open with you, these are probably questions best asked by medical professional, or dropped into conversation more as thinking points.  Avoid making it seem like an attack as anyone attacked about any part of themselves is likely to just get defensive.

  • Quantity: Does the person take more medication than needed? Are they taking more than they used to? Are they taking it more frequently?
  • Attitude: Do they want to cut down or stop taking the medication? Are they using the meds despite knowing they are having dangerous effects on their body?
  • Time: Do they spend a lot of time thinking about the drugs and when the next dose can be taken? Do they spend a lot of time getting and using the drug?
  • Social effects: Are they able to manage their responsibilities? Is drug use affecting any of their relationships?  Are they socialising as much as they used to?  Are they withdrawing from activities?  Has their circle of friends changed?
  • Do they get cravings and urges to use the drug?

Again, I want to reiterate that this is a grey area and it’s hard to identify when legitimate use for chronic pain turns into and problem.  It happens slowly and insidiously.

If you or someone you know is addicted to any kind of drug, please seek help and advice.  If you or someone you know is in immediate danger, ring the emergency services.

Opioid addiction and chronic pain: Long term effects

There are a number of common side effects of opiate use including feelings of euphoria, feeling spaced out and ‘high’, and drowsiness.  According to the RCOA, between 50% and 80% of patients in clinical trials experience at least one side effect from opioid therapy.

“Evidence shows that chronic opioid therapy is associated with constipation, sleep-disordered breathing, fractures, hypothalamic-pituitary-adrenal dysregulation, and overdose… Opioid-related adverse effects can cause significant declines in health-related quality of life and increased health care costs.”
A Review of Potential Adverse Effects of Long-Term Opioid Therapy: A Practitioner’s Guide

To understand the effects of long term use, you need to know that opiates work by depressing everything, including the pain, but also natural bodily functions such as breathing, blood pressure, heart rate and alertness.

Breathing

In terms of breathing, there are a number of ways that opiates affect this vital function.  They slow down your breathing, they are associated with central sleep apnea, atiaxic breathing hypoxemia and carbon dioxide retention.

Let’s bring in some definitions to help explain what these terms actually mean for the patient:

  • Central Sleep Apnea: pauses in breathing while asleep during which the body does not attempt to breathe. A certain number of pauses in sleep are normal but with CSA, the pauses are longer and more frequent and are the result of the brain not sending the right signals to the muscles related to breathing.
  • Ataxic Breathing: an irregular, uncoordinated breathing pattern.
  • Hypoxemia: Low blood oxygen which can cause low oxygen levels in your tissues.
  • Carbon Dioxide Retention: abnormally high levels of carbon dioxide in the blood.

Essentially, breathing is no longer an automatic reflex.  All of these can lead to additional health issues, for example if you aren’t getting enough oxygen there is a risk of brain damage as well as damage to other vital organs.  Deprived of oxygen over a period of time can result in organs shutting down and for some patients, their breathing is so depressed that they fail to wake when they don’t breathe.  It is this, and organ failure, that is behind many opioid overdoses and deaths.

For patients on around the clock opiates for at least six months, sleep disordered breathing issues were found to be as high as 75%, as opposed to 3-20% in the general population.  These effects appear to be related to the dose strength, with ataxic breathing observed in 92% of people taking a morphine equivalent dose of 200mg, 61% of people taking under 200mg and 5% of people not taking opioids.

We will see the effects on the brains performance when we consider the mental effects of long term use.

Gastrointestinal

Just as the breathing system is slowed down, so too is the gastrointestinal system.  The urge to pass stools reduces causing constipation and even impacted bowels.  Opiate use can also cause vomiting, cramping and bloating.

Hormones

One of the things that shocked me when I was looking into the effects of opiates was the impact on the hormonal system.

When you think hormones you tend to think sex so I’m going to start there.  Opiate use can decrease your sex drive, can cause infertility, can cause erectile dysfunction and can cause issues with menstruation.  Fatigue and hot flashes, inappropriate milk production can also occur.

Hormones are also involved in other bodily functions and can affect bone density causing osteoporosis and impaired healing.  Growth hormones, thyroid stimulating hormones and many others are also affected.

Mental

As an organ, your brain is affected and thus your mental wellbeing and functions are impaired.  Opiate use can cause confusion, lack of concentration, drowsiness, depressed alertness, depression and other mental illness.

As the person’s judgement is affected, they can make decisions that they wouldn’t otherwise.  There are impulse control issues as well as impaired insight and issues with reasoning.  Demotivation and apathy can lead to social withdrawal and the persons world can become smaller and smaller.  Moodswings, hostility, increased secrecy and a change in personality can all come about because of opioid use.

Due to the reduced oxygen levels, the brain struggles to perform even basic tasks (such as breathing) and the person can experience agitation and disorientation. Impaired memory is another common effect.

Muscular skeletal

The combination of the confusion and the bone density issues, muscular skeletal issues are common.  Impaired coordination can lead to an increased fall risk, as can dizziness and a sedative effect.  When falls occur, fractures are more likely.

Hyperalgesia

Possibly one of the most counterintuitive effects of long term opioid use is hyperalgesia, that is a heightened sensitivity to pain.  This feels like the most insidious of the effects as it likely leads to more opiate use and makes the whole situation worse…

Pain associated with hyperalgesia tends to be more diffuse than the pre-existing pain and less defined.

Other

Other effects include a reduced immune system responsive, slurred and slow speech, falling asleep mid conversation and not realising it, blackouts and forgetfulness.  Increased sensitivity to sights, sounds and emotions may also be present.  Dry mouth that can cause tooth decay is yet another possible effect as is a suppressed cough reflex.

Whilst one person is unlikely to experience all of these effects, in general the risk increases as the dose increases. Please do not let this put you off taking pain medication that you need, but monitor your use and your mental state and discuss any concerns you have with your doctor.

If you or someone you know is addicted to any kind of drug, please seek help and advice.  If you or someone you know is in immediate danger, ring the emergency services.

Part one: Opioid addiction and chronic pain: Statistics

Opioid addiction and chronic pain: Statistics

There has been a lot in the news about opioid addiction over the last few years, especially in America and primarily about people who have had a legitimate prescription and need for painkillers.  The standard storyline is that someone has an acute injury, has been prescribed opioid painkillers, gets addicted and then takes them without a pain need.  Whilst this common tale is an important one, it can be hard for those of us who have a legitimate need for long term opiates because of chronic pain.  We can find ourselves having to justify our need for pain relief, having that need doubted and minimised, and in some cases have much needed medication stopped.

My position in this debate is a very complicated one.  I use opiates daily.  I can only function because of the pain relief they give me.  I can only write this because of the pain relief.  Even with constant pain relief, I still experience high levels of pain and very reduced function and ability to participate in normal daily tasks.  I strongly defend my use of opioids.  I don’t think I should have to justify my use of them repeatedly and I don’t think I should be treated in a degrading manner when I ask for them.

However.  And this is a big however.

Someone close to me, who has a legitimate need for pain relief, is almost certainly addicted.  And I’m having to watch this person essentially kill themselves.

What happens when someone who needs opioids on a long term basis, for a chronic pain condition, becomes addicted?  It is probably because it is so complicated that this isn’t a story we hear as often.  This story has many parts and I’m hoping to cover them in a few different posts, partly to educate myself about the effects of this addiction and to try and unpick how it happens and what can be done about it.  For confidentiality and privacy, this isn’t going to be the story of the person close to me.

Statistics and definitions

Before we can talk about addiction, we need to try and find a definition for addiction, which turns out to be harder than expected.  It seems that opioid addiction, especially in chronic pain patients, is something that science has yet to agree on a definition for.

What we do know is that physical dependence is not the same as addiction.  Physical dependence is a physiologic adaptation to the continuous presence of certain drugs in the body.  Physical dependence is an expected consequence of prolonged use.  Tolerance to opioids is another expected consequence of long term use and is not a sign of addiction.

Addiction is characterised by behaviours including being unable to control drug use, compulsive use, cravings and using the drug despite knowing it’s harming you.  It cannot be identified on the basis of one event, instead it is necessary to observe a number of behaviours across a period of time.  Where physical dependence and tolerance are expected, predictable responses that occur with persistent use of opioids, addiction is not.

When it comes to defining addiction in the context of patients with chronic pain who are taking opioids, R K Portenoy has suggested the following definition of addiction:

‘‘Addiction is a psychological and behavioural syndrome characterised by evidence of psychological dependence, and evidence of compulsive drug use, and/or evidence of other aberrant drug related behaviours’’

The American Society of Addiction Medicine defines addiction as “a primary, chronic disease of brain reward, motivation, memory and related circuitry.”  The psychological aspect and the compulsive nature are important in helping to figure out the grey area between appropriate use and addiction.  With the latter, there is an intense desire for the drug, loss of control over drug use and compulsive drug use, and continued use despite significant side effects.  As opioids impact the brain and can lead to a temporary feeling of intense pleasure, addiction can develop quickly.

It proved very difficult to identify statistics around addiction amongst people who have chronic pain in the UK so instead I took a look at statistics around opiates and drugs in England and Wales:

  • Around 1 in 12 (8.5%) adults aged 16 to 59 in England and Wales had taken an illicit drug in the year 2016/17
  • In 1993, there were 471 deaths from opioids but by 2017 there were 1985 deaths.
  • 279,793 individuals were in contact with drug and alcohol services in 2016/17, with a majority of them having used opiates.
  • In 2017, there were over 24 million prescriptions of opioids – an increase of 10 million since 2007.
  • Fatalities from the synthetic opioid fentanyl were up by almost 30 per cent in 2017 from the previous year.
  • In 1996, there was one death which mentioned tramadol use but by 2011 there were 154 deaths.

A 2014/15 survey for England and Wales looked at the effects of using prescription opioids which were not prescribed to the user.  Whilst this is something slightly different to my focus, it can show some of the impact of addiction.

  • Overall, 5.4 % of adults aged 16 to 59 years had misused a prescription-only painkiller not prescribed to them
  • People with a long-standing illness or disability were more likely to have misused prescription-only painkillers and to have used an illicit drug in the last year.
    • Among those with a long-standing illness, 8.5 per cent had misused prescription-only painkillers in the last year (compared with 4.8% without an illness) and 11.9 per cent had taken an illicit drug in the last year (compared with 8.1% without an illness).

Basically, in summary, opioid addiction is not rare, it can affect people who have a legitimate pain relief need and it can destroy lives.

In future posts I’m going to take a look at the effects of long term opiate use and abuse, how to tell if you or someone you know is addicted, how the risk of addiction could be managed and how someone who is addicted can be helped.

If you or someone you know is addicted to any kind of drug, please seek help and advice.  If you or someone you know is in immediate danger, ring the emergency services.

Guilty until proven disabled

Guilty until proven disabled

Perpetual fear

Neverending stress

Constant foreboding

And continual dread.

Fight and battle

Battle and fight

Repeat, repeat, repeat…

Misunderstanding.

Invalidating.

Minimising.

Erasing.

YOU. ARE. ABSOLUTELY. FINE.

Disrespected. Intimidated.

Manipulated. Humiliated.

Scrutinised. Patronised.

Head crashing

From the brick wall

You’re bashing against.

Prepare to feel guilty.

Prepare to feel paranoid.

Judged a fraud?

You’re a liar, undeserving.

Judged disabled?

You’re worthless, a burden.

And the trial doesn’t cease

If you pass the tests.

The walls have eyes

And the public are spies.

Perpetual fear

Never-ending stress.

Fight and battle.

Battle and fight.

Repeat

Repeat

Repeat…



Today I spoke at a seminar for International Day of Persons with a Disability.  The event was centred around the benefits system and the experiences of disabled people.  When I was asked to be involved, I started pulling together my thoughts about the benefits system and resulting blog post began to turn into the poem above.

A few snippets from the notes I made when listening to other people at the seminar:

The process and system exacerbates conditions.  It is ineffective.  Inappropriate.  And a waste of time and money.  It does not get disabled people into work and may even move them further away from the world of work.  It is unethical and inefficient.

Failures in the system are plunging people into debt, leaving them unable to buy food, making people reliant on friends and family and charities just so they can survive.

“It just smashes your self-worth.  You’ve got to lend money, you’ve got to beg to borrow… you don’t know when you’re going to get money to pay it back”
– Disabled woman, quoted in an ESRC report

Disabled people are under siege from the very system that should be supporting us.

The DWP are stealing dreams and hopes and futures.

My thoughts on disability benefits…

I’d like to start by saying I am incredibly grateful that I live in a country which does offer welfare benefits for those of us who are ill, disabled, of retirement age and so on.

However.

You must fight a system based on fear, on penalties and on paranoia.

You must face a system where the starting point seems to be that you are guilty of fraud until you prove otherwise.

You must battle a system which seems to be designed to reduce claimants as much as possible.

You must meet a rigid timetable set by the benefits system but don’t expect them to do the same.

You must repeat yourself over and over again to different people, on different forms and don’t you dare forget to say something because that could make or break your claim.

You must provide full and detailed information, you must alert them to any changes and yet, in return, you do not get a transparent system.

You must deal with staff whose sole purpose seems to be to misunderstand you, to invalidate you, you minimise or erase your health issues and to treat you like a liar.

Don’t be foolish enough to have co-existing illnesses or disabilities.  Don’t be foolish enough to have a complex multisystemic disorder that affects you in multiple ways.  Don’t be foolish enough to have a fluctuating or unpredictable condition.  They will intentionally fail to understand.

Expect to be treated disrespectfully.  Expect to be taken to task on every little thing you do.  Expect your words to be manipulated.  Expect to argue about pedantics.

Prepare for paranoia.  Prepare to be scrutinised.  Prepare to feel judged and worthless.  Prepare for your mental health to suffer, even if you had no mental ill health previously.  Prepare to feel like you’re banging your head against a brick wall.  Prepare for a system which is devoid of common sense and compassion.  Prepare for your assessment to state that you are absolutely fine.  Prepare for an appeal to declare otherwise.  Prepare for the stress that this long, drawn out process involves.  Prepare to feel guilty on good days.  Prepare to feel paranoid if leave your home.

Do not expect to be treated humanely.  Do not expect to be treated as a human.