My Late 2015 Review

Welcome to the first blog of 2016!

2015 was the year of wonderfully crafted narratives, flawed characters and binge watching. These wonderful television series were on my radar:

  • Breaking Bad
  • Game of Thrones
  • Daredevil
  • Jessica Jones

I have already written at length about how incredible the characters, storyline and the depth of analysis possible on Breaking Bad in a previous blog. What made it even more mind-blowing was how Walter White seemed like a logical continuation of the character Hal from Malcolm in the Middle.

All these series questioned the idea of morality, especially Game of Thrones with ‘good’ characters that do morally questionable actions for the ‘right’ reasons. Surprisingly physical and mental disability was represented in all shows maturely without falling back on the typical disability tropes. (Disability representation will be discussed in more detail in the next blog)

Marvel with the help of Netflix have filled in the gap of mature, thought-provoking superhero shows with Daredevil and Jessica Jones even though the recent saturation of superhero shows/movies. Personally, both series are a metaphor for the different coping mechanisms people have when dealing with disabilities like blindness or PTSD (post-traumatic stress disorder).

In Daredevil Matt Murdock (played by Charlie Cox), uses being taught by his master stick how to defend himself as a way to cope with losing his sight without ending up bitter. Even though the show has some violent fight scenes where Matt gets beaten up badly, there are positive undercurrents that present different of ways of coping with adversity and seeing it as a way to achieve something greater. Both Matt and his enemy Wilson Fisk (played by Vincent D’Onofrio) display matching coping mechanisms that have made them stronger but cleverly the writers went further with this idea by bringing morality into the equation and asking but at what cost?

Jessica Jones started fairly slow but ended on a high. The character herself (played by Krysten Ritter) had a destructive way of coping with PTSD inflicted by Kilgrave (played by David Tennant) with alcohol and a thorny personality. Kilgrave seems like a physical manifestation of a lack of acceptance or letting your mind grow bitter over a bad situation. His power is mind control, during my younger days depression seemed like my mind was being controlled without any way to stop it. The ending of season 1 was a brilliant way of illustrating Jessica finally ending the vicious circle of bitterness or depression, showing brilliant growth in her character arc.

For Christmas, I got the graphic novel The Planetary Omnibus all 27 issues of writer Warren Ellis and artist John Cassaday’s epic deconstruction of the superhero genre and storytelling techniques. It has made me aware to look deeper into everything I read, watch or play. The written word is powerful and has the amazing ability to blur the line drawn between stories and reality. Reality is a creation in our minds just as stories are; maybe we get these ideas by accessing a parallel universe? Existentialism is such a difficult concept to communicate visually but Warren Ellis does a wonderful job of making it entertaining.

These video games of 2015 have left a mark for 2 very different reasons:

  • The Witcher 3 has amazing immersive world-building, brilliantly constructed characters, beautiful graphics and interesting storyline/side-quests.
  • Batman Arkham Knight. Batman is my favourite superhero so I was excited about this game, it was a great game but also disappointing. There was so much wasted potential in the use of the Batman universe by the uninspiring disability representation of Barbara Gordon/Oracle, too much emphasis on the Batmobile, boring boss battles and no built-in story sections where you could control Robin, Nightwing, Batgirl, Spoiler, red robin, Oracle, Azrael or red hood. Such a shame as the previous games was faultless. My main issue is with how the character Barbara Gordon/Oracle was handled; It would have been better if she had more of an active role and maybe in parts of the story you could have controlled her wheelchair as so her role was not just a damsel in distress.

I will explore disability representation in comic books in my next post using characters such as Barbara Gordon/Oracle, Professor X and Daredevil

Hydrotherapy Report Launch

This blog is in response to attending the MDUK launch event of the new Access to Hydrotherapy report. The event was held in Committee room 3 at the grand (& dusty) House of Lords.

Chairing the event was the dedicated Baroness Thomas of Winchester (Trustee & VP of MDUK) who attended in spite of breaking her right leg and sporting a plaster cast. The panel was Gill Storey the specialist neuromuscular (NM) physiotherapist at NMC Winsford & Kay White the specialist paediatric NM physiotherapist at Sheffield teaching hospital.

Gill Storey from NMC Winsford explained their excellent practices regarding free access to physio or hydro, which needs to be praised and maybe copied around the country. I have visited the NMC Winsford in Cheshire twice now and I do remember that they use a hydrotherapy pool in the school next door. I was extremely impressed by the ability of the NMC to deliver a viable business whilst being able to provide opportunities for people with neuromuscular conditions to do a graphic design course and then work as graphic designers and receiving incredible physio & hydrotherapy input.

I was slightly was puzzled as to why Kay White was there as she works in the paediatric department so she could not provide information on adult services, which was a shame, but I do thank her for her time.

In the meeting, we discussed personal experiences on hydrotherapy and it was unanimous how it is an important treatment. Martyn Blekman illustrated the rollercoaster ride access to hydrotherapy is around the UK and how necessary it is to fight for your care and what you are entitled to in regards the NHS. Proactive not reactive. We know what works for our body so we need to express this fact to health professionals and make sure we are in control of the choices available to us.

In the report Baroness Thomas of Winchester explained her shocking personal experience and brought up important points on the limitations of the NHS assessment method and necessary outcome criteria, Where NHS-funded hydrotherapy is available, it is often restricted to patients whose improvements can be demonstrably measured… because people with muscle-wasting conditions fail to meet the ‘cured’ criteria

Shockingly in the report, Muscular Dystrophy UK undertook extensive research that found in the UK the provision of hydrotherapy pools is far greater for animals (362). This is compared to 179 pools that are suitable for people with muscle-wasting conditions. There are over 70,000 people in the UK living with a muscle-wasting condition. In the current situation, this means there is one hydrotherapy pool available for every 395. By contrast, if the hydrotherapy pools solely for the use of animals were also available to people, it would mean one hydrotherapy pool available for every 131.

The key findings are pretty damning evidence that there needs to be a complete rethink on access to hydrotherapy for people with neuromuscular conditions and their families:

  • Families are told that hydrotherapy is only used for rehabilitation cases
  • Families are being told to show measurable change when using hydrotherapy pools
  • 30% of hydrotherapy pools are too expensive to access (some families forced to pay over £75 per visit)
  • 90% consider hydrotherapy to be a crucial part of managing their muscle-wasting condition, yet almost half say they access it very rarely
  • Almost 20% of respondents say they travel between 20 and 100 miles for their nearest accessible hydrotherapy pool which is not sustainable
  • Many hydrotherapy pools do not have hoists or accessible changing facilities.
  • Many hydro pools are based in schools so only open term time
  • In some areas of the UK, one hydrotherapy pool available per 1,300 people.

These findings all reflect an unacceptable situation. MDUK believe that all people living with muscle-wasting conditions should be able to enjoy the opportunity to access hydrotherapy, regardless of where in the country they live or how rich they are.

<

p style=”text-align:justify;”>Interestingly in some countries (e.g. Germany), hydrotherapy is seen
as vital treatment
and patients are reimbursed by the health
insurance companies. However, in the UK, hydrotherapy is not
seen as a routine service for managing a
long-term mobility problem. The NHS should acknowledge that anyone with a neuromuscular condition should be able to access hydrotherapy, some EU countries have always provided more for their disabled population.

We need to now move away from the focus on physical outcomes or quantitative practices to acknowledge how hydrotherapy impacts psychologically on quality of life (which could be used as a measurable change outcome) or pain reduction. Socially hydrotherapy can help families, siblings or friends to participate in social activities with similar ability levels as someone with a muscle-wasting condition. It may decrease the number of physiotherapy appointments necessary so can save the NHS money in the long run.

This blog is in support of Muscular Dystrophy UK’s new report being launched at the House of Lords on the 3rd December regarding access to vital hydrotherapy treatment and highlighting the issues that people with neuromuscular conditions face when trying to access it. I feel that Physiotherapy & Hydrotherapy is an important aspect in the treatment of Duchenne Muscular Dystrophy (DMD). I want to start by explaining how DMD affects muscles and then the beneficial aspects of physio & hydrotherapy.

As you know DMD is a severe muscle wasting disease. Duchenne muscle wastage is due to a mutated Dystrophin gene that prevents the enzyme Dystrophin being present in muscles thus causing muscle degeneration. At an early age the consequences of muscular deterioration are adhesions (fibrous bands) & Oedema (swellings), this causes inflammation, which impedes muscular growth and repair functions so muscles fibrous or ultimately waste away.

I would like to explore the last paragraph in a little more detail.

  • Inflammation when triggered in DMD damages muscle, so it is then either substituted by non-functional fibrotic tissue or fat.
  • Oedema, adhesions or inflammation are more apparent in younger boys with DMD before muscle tissue has completely wasted away.
  • Fibrosis has 2 major consequences for potential treatment of DMD; firstly, it impairs muscle function but also reduces the amount of muscle available for therapy.
  • Fibrotic cells (fibrocytes) are necessary during muscle growth or repair as they provide a structure for new tissue but excessive deposits are harmful.

Preventive physiotherapy is crucial at an early age due to the non-reversible nature of fibrosis and chronic tissue contractures (hardening of muscles or tendons) throughout the body. Vigorous exercise can have damaging effects on muscles but moderate exercise can be beneficial in DMD patients to maintain muscle functions especially in hand or fingers.

Physiotherapy is concerned with enabling us to reach our maximum physical potential through: exercises to minimize the development of contractures or deformity, splinting to maintain our range-of-movement using ankle-foot splints (AFOs) or back braces and providing proper seating or postural support to prevent spinal curvature as severe scoliosis is common in DMD.

The physiotherapists at London Hammersmith hospital where I was correctly diagnosed were brilliant in organizing my care. I was provided with a much-needed wheelchair, examined to find out my range of movement and flexibility, given appropriate exercises to maintain movement at home, they used plaster castes to stretch my Achilles tendons and gave me KAFOs (knee-ankle-foot splints) that aided my walking.

Posture and positioning is paramount in DMD to prevent spinal curvature and improve respiratory function later on. Adequate wheelchair provision with a tilt-in-space function and thoracic supports is necessary. Inactivity such as bed rest can speed-up muscle wastage; I was bed-bound for nearly 2 years because I could not find a comfortable NHS wheelchair so I had to go through a charity to purchase the right wheelchair.

I would like to enlighten you on how I viewed physiotherapy in the past. I used to find wearing a back brace uncomfortable, ankle splints were a pain in my neck as it was hard finding shoes that fit over them or constantly being nagged to sit straight. Physiotherapists were not one of my favourite people but I knew what they were suggesting was important. I now encourage taking responsibility of your DMD, the exercises and splinting has now helped my hands to maintain muscle strength, flexibility, and function so it has improved my quality of life now.

Hydrotherapy is also an essential and integral part of DMD treatment, something that is not just a luxury but also a necessity; it should be made available to all patients however there are many problems in gaining access. The issues faced by fellow MDUK ambassadors reported in the hydrotherapy report are regarding hydrotherapy pools not being accessible, lack of pools in the UK or people having to pay large amounts of money to access this treatment.

The water in hydrotherapy pools supports the body weight and the warmth relaxes the muscles, so it provides an environment in which rarely used muscles in your legs can be activated. Personally, it has let me experience walking again but hydrotherapy pools are not easily accessible in Leicester or in adult services. Anecdotally, the hydro pool in Leicester General hospital does not have accessible changing facilities with a hoist, the one in Ashfield School needs to be paid for but there would not be a necessary physiotherapist present.

Treatments such as physiotherapy & hydrotherapy are vital medical interventions but most importantly, it improves quality of life. Quality of life should be regarded as something more highly than money. It seems to me that when you reach adult services they think your disease changes to one that does not deteriorate or need physiotherapy or hydrotherapy interaction. The needs of people with DMD or other neuromuscular conditions do not decrease but increases over time. The report published by MDUK is a brilliant first step to start a dialogue with the people in power to make access to important treatments for adults with neuromuscular conditions easier.

 

Ventilation

I decided to write this blog after speaking at a respiratory physiotherapist conference in September where I provided health professionals with a patient experience on using a ventilator or how these issues fit into or around my life.

I thought that before I start I wanted to express my gratitude for the wonderful care and respect that I’ve been shown by my respiratory consultant Professor Morgan, respiratory physiotherapist Jo Smith and the whole wonderful department. Thank you for improving the quality of my life.

As you know Duchenne Muscular Dystrophy (DMD) is a muscle wasting condition so it has slowly deteriorated my lung function along with my heart but definitely not my brain. Over the years I’ve tried (or Mum insisted) to maintain optimum lung function and (mostly) listen to doctors suggestions. At the age of 12, I had a back operation in order to prevent my scoliosis from crushing my lungs any further by using rods and screws to hold my spine straight. This operation was painful and took a year for me to recover fully but it dramatically increased my lung capacity and I also grew a few more inches. This spinal operation is meant to increase life expectancy for DMD patients by about 10 years so (in my opinion) it is an important but necessary decision to consider having it done.

I was introduced to the Nippy ventilator and the LVR (lung volume recruitment) bag when I was 19 at my annual respiratory appointment as my lung function was beginning to show signs of deterioration. I was initially reluctant to the idea of using the Nippy during the night as I saw no benefit but only an unnecessary nuisance. Funnily enough at the next respiratory appointment, I lied to the consultant about using it at night but he found out anyway as the ventilator records the hours it has been used so he told me off. The following issues I had with the ventilator initially appeared to be impossible to cope or deal with:

  • The machine was noisy so I couldn’t fall asleep
  • The mask was uncomfortable around my nose causing red marks
  • I felt claustrophobic with the mask covering my nose
  • It was scary to rely on a machine to breathe for me
  • The mask was challenging to wear due to only being able to sleep on my left side
  • Having to accept tangible evidence of my DMD / symptoms encroaching on my quality of life, my denial over the years had to finally be acknowledged overcome. (This issue was not apparent at the time only now I can look back as an adult)

The respiratory appointments are really vital to managing your DMD, I did not realise how vital the check-ups were until I understood the reasoning behind the nagging insistence to use a Nippy BiPAP (Bilevel Positive Air Pressure). Blood gas samples are taken so that CO2 levels can be analyzed as high CO2 levels demonstrates type 2 respiratory failure, other symptoms of gradual failing ventilatory capacity are:

  • Shortness of breath
  • Awareness that extra effort is needed to take breaths
  • Breathless when you lay on your back but not when sitting (Orthopnoea)
  • Daytime dizziness or sleep disturbance
  • Morning headaches and confusion
  • Waking up not feeling refreshed
  • Irritation all through the day
  • Tiredness during the afternoon

The symptoms caused by high CO2 levels in your bloodstream can be assisted by the use of long-term BiPAP ventilation as it fully inflates the lungs thus decreasing high CO2 levels as DMD patients normally shallow breathe.

The time came at age 20 during my A-level year when I was hospitalized for a chest infection that I came to appreciate my nippy ventilator. Without the support of the respiratory department teaching me how to use a cough assist machine, providing chest physio and the realization that I was aspirating on food so I was then given a feeding tube (gastrostomy) which saved my life.

The Nippy ventilator improved my quality of life, I woke up refreshed and at the time able to concentrate on college work. I only saw the improvements once I used night-time ventilation for a few weeks, perseverance is important as initially my chest muscles were stiff from lack of exercise and it was a bit painful. Now it has become an essential part of my daily routine, nighttime ventilation has now become about 3 hours in the daytime, it was difficult to let it intrude into my day but it prolongs my energy to do the things I want to. For example, I wear it at the cinema, the car & at MDUK meetings. My main tip is to use a nasal prong mask rather than a full nose mask, the nasal prongs are less likely to cause pressure sores or red marks, less claustrophobic and more importantly looks much better.

I was also given an LVR (Lung Volume Recruitment) bag, a manual way to exercise your lungs or take deep breaths. I was taught by the physiotherapist to breath-stack using it, it’s a way to hold multiple breaths so you have a boost so you can carry on talking or just enjoying yourself. I wish I used the LVR bag earlier as it is easy to use and effective in improving quality of life and getting you used to respiratory assistance.

Ventilation has helped me medically but also emotionally & mentally. I’ve become more confident to speak because now I can concentrate on the conversation rather than worrying that I’m out of breath. I’ve become a calmer person, less irritable or angry as I have fewer headaches or I’ve become more aware when I need my ventilator so it is a good idea to take more responsibility of your own DMD.

I was worried that having a ventilator would ruin my life, restrict me, or somehow admitting I needed respiratory help meant I failed but it has improved every aspect of my life so I’ll be open to using it as much as possible. I hope this blog has been helped many DMD guys battling with the idea of ventilators.

Diagnosis

Recently a fellow Trailblazer Laura Bizzey wrote a poignant open letter on her diagnosis, so I thought I should enlighten you on my diagnosis journey. However, before that I wanted to provide a summary of the problems my family has faced regarding diagnosis: Misdiagnosis, acceptance, divorce, lack of family support & cultural issues. I have Duchenne Muscular Dystrophy (DMD), which is further complicated by Haemophilia a genetic blood clotting disease.

Growing up I was always slow to reach critical milestones as a child so I was crawling around a lot longer than usual. When I began to walk, I prone to constantly falling on my toys and always having bruises and internal joint / muscle bleeds in any part of my body. Initially, we thought these bruises were obviously symptoms of Haemophilia but after happening over numerous occasions the Haemophilia consultant Dr Mitchell suggested the falling may be due to muscular problems so aged 3 ½ I was referred to a neuromuscular consultant.

The neuromuscular consultant we were referred to was Dr Andrew Holton, the beginning of my 6-year misdiagnosis. So a muscle biopsy was done showing elevated CK (Creatine Kinase) levels that are connected to muscle breakdown or weakness seen in Muscular Dystrophy (MD). However, my diagnosis was interpreted as Polymyositis a chronic inflammation of the muscles. The regime prescribed was high doses of steroids and intensive physiotherapy to gradually strengthen muscles and prevent tightened tendons as I walked on tiptoes. This exercise meant that I was not given a wheelchair as I was told to walk. We were following Dr Holton’s expertise as a neuromuscular consultant, at this time we never knew life would turn out completely differently. Now that I can look back as an adult, as a child I never realized how hard it was for my Mum & sister because I never really understood what was happening to me at the time.

Age 4 I was started on 15mg of steroids (5 mg tablets) to combat the ‘inflammation’ in my muscles. Each outpatient appointment there was no sign of improvement so the dose was increased. He increased it to 35mg when I was about 5 due to no improvements occurring, adversely I began to experience the side effects of steroids such as weight gain, anger and facial, arms and back hair growth so I was very distraught. I began to be teased at school due to my increasing hair growth, I felt ashamed of my ‘problem’ as I was being called a monkey.

As the steroid regime was not showing any improvements Mum requested for a second opinion from a doctor in Nottingham who backed doctor Holton’s diagnosis and treatments however later on we found out they happened to be friends. After the second opinion Doctor Holton suggested we try an intravenous infusion of immunoglobulin (IVIGs) as a new treatment alongside steroids. At age 5 I did not understand why I had to have this medical intervention, it meant that I was away from school twice a week for 4 hours or more. I hated having to go to Ward 27a in Leicester Royal Infirmary even though the nurses and play specialist were really helpful at making me forget being a patient. We slowly started to get a lack of information on the reasons for steroid dosage or IVIGs from Doctor Holton.

During these medical appointments and phone calls Dr Holton was starting to be quite rude to my Mum. For example, my Mum told him ‘Vivek is not improving, he has stopped walking…’ I was unable to climb the stairs at school (I had to be carried around), carry my bag or change into my trunks for swimming but he dismissed it by telling my Mum she should come into school to help me. I was starting to feel tired or in pain to walk everywhere. Holton turned around to his registrar ‘hospitalize him under my care for 2 weeks’ I was crying as I did not want to stay in hospital with an angry doctor,

Even the physiotherapist was questioning my diagnosis suggesting I could have some form of Muscular Dystrophy but that idea was rejected. MD boys walk on tiptoes and  when standing up from the ground us the method of climbing up our legs, I exhibited these actions throughout my diagnosis. The nurses at Ward 27a supported and encouraged my Mum to complain about his behaviour as he was horrible to other patients and nurses.

His façade crumbled when Mum completely refused to give me any more steroids when he increased the steroids to 45mg (more than the adult dosage) when I was about 7 years old. He was on holiday when Mum rang so the receptionist took a message he was angry and said to my Mum ‘Don’t you realise your son is very sick, if you were a good mother you would carry on with steroids’

A lot more happened after this outburst but cut to age 8 ½, we managed to get a third opinion from the Hammersmith hospital in London. I was scared to meet the new doctor as I thought he would shout too. I met Professor Muntoni, he was very friendly and talked to me like a person, he actually listened to my Mum and me, and he restored my faith in doctors. I was asked to stand up off the floor and walk, we were then asked to wait outside and then he said he is sure 80% I had some form of MD. This took about 20 minutes. It was devastating hearing the news about the future but we were glad to finally know what was wrong with me. I was now able to get a wheelchair, stop the unnecessary treatments and have plaster castes to stretch my tendons in my calves that were tightened by me walking on tiptoes. The physiotherapists and the whole team in London were excellent.

We did receive an informal letter of apology from Doctor Holton so we had evidence that he accepted some fault but his excuse was that he was under qualified and ‘spread thinly’ as he put it. After a few years we saw a story about his suspension on the news, he had misdiagnosed hundreds of patient’s who suffered from epilepsy and unnecessarily medicating them. Mum found the courage to file for a medical negligence case, It was discovered through us that Dr Holton misdiagnosed / mistreated muscular dystrophy patients too. He made us feel worthless and making a fuss but now we had the chance to finally be heard. It took us a further 10 years to receive compensation for our traumas.

The start of my diagnosis seems hopeless but the problems have made me the man I am today. I do admit that it has been difficult to accept my disease or my future but accepting it has been the best thing for me to have ever done to accept myself 100% by bringing together my fragmented past. I could put myself my feelings, thoughts and my body together again. I now see it is a positive attribute, as without it I would never be writing this blog or meeting my friends at Muscular Dystrophy UK.

The representation of disability in the media, through TV shows, movies, comics, video games has always interested me. This blog will be an examination of the disabled characters in media recently or throughout my life. These characters I feel are influential for me as a disabled person.

Recently I finally watched all 5 seasons of Breaking Bad. The story arcs of each character were incredibly detailed and the world building was brilliant.

The way Walter White (played by Bryan Cranston) evolved from a family man (ironically like a follow-on to his character Hal in Malcolm In The Middle) into a psychopath was superb, the change was slow so I felt somehow I was changing or sympathizing with him. However, Walter ultimately still remained a family man as he performed every bad act to provide financial security for them, this subverted the family man stereotype brilliantly. Where does the line start or end? How far can you go for your family? All the family answered these questions differently so Walter’s family thought he crossed the line but he thought it was acceptable so showing that perspective is subjective. The way his cancer was handled was great, it demonstrated the difficulties of chemo but strangely, I am glad his cancer did not remiss fully, it would have ruined the tone and end of the show.

Jesse (played by Aaron Paul) grew as a person; his character was in juxtaposition to Walter, illustrating how people can be redeemed after bad decisions. The show seems to show the binary good vs. bad but in my opinion, it demonstrates that life is lived in the grey.

The character Walter White Jr (played by RJ Mitte) was a revelation, having a disabled teenager who has cerebral palsy with speech problems and crutches was something I have never seen before on TV. I was quite cynical at first, thinking the writers would use his character in a ‘being disabled is a negative’ way but he was portrayed naturally, still doing ‘normal’ activities. RJ Mitte has become an actor who happens to be disabled rather than just a ‘disabled actor’. Breaking Bad is progressive in the representation of disability in the media and we need more shows like this on TV, to make the public aware that people can live happily with a disability.

(Spoilers for the ending) The ending with Jesse deciding against shooting Walter and then driving away was emotional and leaving it open guaranteed Jesse a second chance at life. Ending with Walter dying due to his bad decisions rather than through his cancer was a masterstroke, all his decisions in the show were in order to escape accepting his cancer and ultimately he did escape it. Maybe the show was ultimately a metaphor for breaking the bad stereotypes around disability/acceptance, through Walter White Jr and through the evolution of Jesse as a character who slowly started to accept his bad decisions/depression in order to live positively and finally deal with his issues.

Next, I wanted to explore season 1 of the Netflix series Daredevil (based on the Marvel superhero of the same name). Background of the show: As a child, Matt Murdock (played by Charlie Cox) was blinded by a chemical spill in a freak accident. Instead of limiting him, it gave him superhuman senses. Now he uses these powers to deliver justice, not only as a lawyer in his own law firm but also as the vigilante Daredevil, the man without fear. His blind mentor Stick taught him to fight as a way to stop Matt becoming bitter over the accident.

Charlie Cox worked with blind consultant Joe Strechy in order to authentically portray being blind. This suggests that the producers find Daredevil’s blindness an important part of his character, rather than just a gimmick putting Charlie in glasses or just using a cane. The show does illustrate his blindness and how it affects him practically through filming him reading braille, using a cane, being disoriented by loud sounds, his apartment is always dark with lack of furniture. His colleagues Foggy Nelson (played by Elden Henson) & Karen Page (played by Deborah Ann Woll) treat Matt like anybody else, they argue with him but also help him to navigate new areas or find doors when necessary.

This series portrays disability in an empowering way rather than using it as a gimmick (which could have certainly happened) as Matt has utilized his ‘blindness’ as a useful superpower, instead of limiting him his disability enables him to see the world in a unique way. Furthermore, the show demonstrates that disabled people can hold high-powered jobs like a lawyer or learn to defend themselves. I hope Marvel continues doing Daredevil justice in season 2!

Part 2 will be evaluating disability in comic books & videogames.

Acceptance

This post is for World Duchenne Day, which was on the 7th September (It’s the 8th September today but please bear with me).

I want to share the truth about how Duchenne Muscular Dystrophy (DMD) has allowed me to become the man I am today and increase awareness of DMD.

It was a difficult road for me to initially accept my DMD as a child/teenager; I lost a huge part of myself so the loss of walking completely changed the trajectory of my life. I felt my life was over and I was worthless, this depression was more crippling to me than my DMD. My Mum has always been very supportive and open to giving me the truth to all my questions along with discipline when I became jealous on my sister doing what I could not. I am glad this stopped me letting bitterness or anger consume my family’s life or mine. It was not fair for me to be angry on able-bodied people, as they cannot help being born that way.

The years between the ages 13-15 when I was bed ridden due to the lack of a comfortable wheelchair, this period was tough but also strangely good for me. I discovered comic books and videogames so I finally found an escape from the all-consuming disease. It opened me up to imagination, which has now given me the ability to solve problems or understand my behaviour and others. Around this time, my parents divorced so I ignored the problems with my disease and I learnt to cope quickly so that I could support my Mum and sister. This reminded me that everybody has issues to deal with in life, be it physically, mentally or emotionally. I am not suggesting it is wrong to be upset about DMD but I have discovered that it should not tie into my self-worth or body image.

The periods of being alone in my room forced me to look inwards to discover my inner strength, strength that everyone possesses and it also enabled me to stay calm and focused to let my inner compass to guide my outer life.

I think what helped me start accepting my DMD was during college, I realised that I have the same abilities as able-bodied people. To put things in context I went to a special needs school before college. Initially the school helped me to accept being a disabled person but towards the end, I lacked confidence and had a belief system that I was not as good as able-bodied people.

Joining Muscular Dystrophy UK & Trailblazers was the reason that I found my confidence and worth. Over the many campaigns, I have been part of: Cinemas, Transport, and Airlines. So, the faith MDUK had in others and me pushed me to use my voice and fight for my rights. The reason I become an Advocacy & Peer Support Ambassador was to honour my life experiences and realise that everything I’ve been through could help my peers cope or create awareness to improve the lives of disabled people.

I’ve finally found the secret, that self-image is not what people think about you but how you see yourself. Changing your thinking can change your life. You can turn the worst into the best by thinking of hurdles as opportunities to test how well you can adapt. It is in the darkest time that your power is illuminated.

The man I’ve evolved into now would not have happened without Duchenne Muscular Dystrophy, I can now finally say that it is a positive part of me and that I’m grateful for all my strength or abilities.

Thank you for allowing me the chance to reveal my inner self in a constructive way that increases awareness of Duchenne Muscular Dystrophy.

Gaming

One of my big passions in life is gaming.

The first game that hooked me was Super Mario World on the SNES, I played it for hours trying to complete everything and being amazed by the secret levels. Now that I look back, I realise the simple act of running & jumping allowed me the freedom of movement that was limited to me in the ‘real’ world.

Adventure games or RPGs are my favourite genres, anything sci-fi or with strong stories is important to me. The Mass Effect series is my number 1 game franchise, creating your own character, great story, brilliant squad members and immersing yourself in an incredible universe.

I’ve owned a variety of Game Boys, an Xbox, PS2, Xbox360, PS3, PS4. Over the years I’ve slowly had my Duchenne affect my gaming enjoyment. I’ve been unable to quickly press R3 or L3 buttons on my PS3 controller but I could press them if I held the controller in a twisted position or I just didn’t use those buttons so it was slightly limiting or made me a better gamer.  During my teenager phase this impact would have created anger & frustration but now I feel that it’s always a new challenge to find a workable solution. This epiphany was brought on by purchasing a PS4 and catalysed the disappointment I felt after holding the controller. The problems I observed were: Pressing the Options button, R3 & L3 buttons, the gap between the R1 & R2/L1 & L2 being too big to slide my finger quickly between them and the convex shape of the R1 & L1. It seemed liked a colossal task to face, I thought I wasted my money, (this feeling was echoed by friends).

Who could adapt my PS4 controller? I searched the internet and found this page (www.instructables.com/id/PS4-Controller-Modified-for-a-Disabled-User). The amazing thing was that the adaptation was done by ReMap who have been an important part of my life as they have created many items such as a table that went over my bed or adapting my wheelchair over the years. I never realised that ReMap could adapt electrical equipment or game console controllers.

A ReMap engineer visited my house after I completed a referral form, he listened to all my issues and took the PS4 controller away for a week.

The pictures above illustrates the wonderful adaptations. The analog sticks are used as normal but the gold sticks I tap for R3 or L3 and the R1 & L1 are modelled concave using SuGru. I’ve now shared this with my friends or Muscular Dystrophy UK. ReMap have since adapted my friend David’s controller by moving the R1 & R2 underneath so now I’ve stolen the idea (Haha) and asked ReMap to do the same for me.

I want to praise the wonderful engineers at ReMap for improving my quality of life. I will never stop being a gamer!

Sharing

Welcome to Blog 2.

(It’s been difficult to write this week so I’m astonished that you have something interesting to read)

This week I was asked by the Muscular Dystrophy UK (MDUK) media department to write something regarding my work as an Advocacy and Peer-support Ambassador. I’ve been an Ambassador for over a year now and have different cases to handle, such as newly diagnosed MD parents, school SENCO’s wanting to provide pupils with MD as smooth as possible school experience or Occupational Therapists enquiring about wheelchairs.

Before I write more about what I do I need to emphasize how important MDUK has been in my growth as a man over the 5years I’ve been part of them. I’ve become more confident and determined to assist anyone through the faith they have had in my abilities.

Being an advocacy ambassador has grown my skills & knowledge through the wonderful support of MDUK, they hold ambassador days where you up skill to better understand the legal side of advocacy or how to create a social media presence. The best part of these days is to see fellow ambassadors and friends.

One case that stuck with me was a SENCO contacting me about a newly diagnosed primary school pupil with Duchenne Muscular Dystrophy (DMD). She was keen to give the pupil the smoothest school experience so she asked about issues I faced at school. My experiences were slightly more difficult in primary school since I was misdiagnosed until age 9; these are a few issues I had:

  • Raising my hand up was tiring so I used to shout out and was told off.
  • At break times, I used to stay inside as I felt tired running around but the good thing at my secondary school I was allowed to have friends inside too.
  • I couldn’t carry a briefcase or lunch tray.
  • Swimming lessons were difficult, as I couldn’t get changed myself so my Mum came in to help but the school liked us to be independent.

I was amazed with how much sharing my life experiences had helped her and highlighted issues that she never imagined were problems. The macro issues such as accessibility of the building are easily fixed but people with the disease only know the more important micro level, which needs exposing. It was great to see how some schools are proactive in helping school life to go smoothly when life gets difficult and how times have changed for disability awareness. I really felt lucky to be able to help this pupil to enjoy school and not let DMD affect this part of his life.

I’ve realised how sharing life experiences is important, not just for the people you help but also for yourself. Opening up to someone who is experiencing similar issues i’ve faced in the past are cathartic but initially it was difficult looking back at my past life. There has always been a disconnected view between my walking life and wheelchair life, I saw myself as 2 different people. Helping this boy was like helping myself as a child so the process of thinking back on my life has allowed me to fully accept myself and own my life walking or otherwise.

Thank you.

Identity

Vivek is the name, 25 is my age & Duchenne Muscular Dystrophy (DMD) & Haemophilia are the diseases I have. These defining factors could describe my identity but identity is transient and changes due to evolutionary life experiences.

My identity has grown over the years, this blog is only the beginning of my journey to explore it. I have found peace and contentment with my situation, the illnesses I live with have helped me to accept what I can do. I now do not feel disabled, I’ve found that if you change your mental world your physical world changes too.

I would like to think that my faith has helped me reach this stage. I am not a religious person in the traditional sense, but I’d say I’m a spiritual person. I believe that god is just the energy around us and everything has a reason.

My identity is tied in with Muscular Dystrophy UK as I am a Trailblazer fighting for disability rights and an Advocacy Ambassador who advises cases regarding MD.

My future posts will explore certain topics in more detail or to create awareness of DMD to show the day-to-day issues we face.

Thank you for following me on my journey!

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