The simple act of breathing can be a daily struggle for adults living with Duchenne.
NHS England & NICE have recently announced that the process for approval of new drugs is about to change. These proposals – set to be implemented on 1st April – will impose significant constraints on the way that new drugs like Raxone are assessed and funded in England.
During my early 20s, I had multiple chest infections, these episodes affected my lung function so I required overnight ventilation. Growing accustomed to overnight ventilation was frustrating because of pressure sores from wearing the ventilator mask, finding the machine too noisy to fall asleep and also changing positions would mean having to adjust the mask.
Part of living with Duchenne means having to accept using the ventilator in the daytime which can be tough to use in public as it cannot be hidden or disguised. I lost confidence in myself as I didn’t recognise the person in the mirror.
My voice is quiet & I can easily get short of breath without the ventilator so I use it when have to speak for long periods. This dilemma is the toughest to overcome as there is no alternative to using respiratory support. At the time I wished there was a magic pill or medication to improve respiratory function. Initially, I restricted myself from leaving the house whilst using my ventilator but that made me feel angry, frustrated and isolated. I realised I had to change my perspective regarding ventilation. I could not shut myself away any longer because I am an outgoing person who enjoys socialising and leading a purposeful life.
I’m extremely interested in any drug such as Raxone that can improve or prolong respiratory function with some relevance concerning adults living with Duchenne. I strongly feel that the worst part of living with Duchenne is having breathing difficulties and restricted communication.
I urge NHS England to review the guidelines as these new proposals will adversely affect patient access to treatments for rare diseases. This is a shame as research into DMD treatments is moving extremely fast since the approval of Translarna.
It has been awhile since my last blog post but I feel that now is the perfect time to discuss the subject of wheelchair provision.
As of 8th March 2018, the Government announced new measures to ensure the safety of wheelchair users when accessing wheelchair spaces on buses. This is a brilliant initiative for inclusive public transport however, it is only useful if a wheelchair user has a wheelchair in the first place.
A wheelchair is unquestionably a fundamental extension of my body and capabilities, allowing me to keep mobile & stay connected to society. It’s not a luxury item. Living with Duchenne Muscular Dystrophy means that I’m totally reliant on my wheelchair for mobility, comfort & postural support.
I can never imagine a future without an electric wheelchair, in fact I would not have one.
At the moment I’m on the daunting mission to try to fund a new wheelchair through various ways:
- Charity funding
- Organising a local music fundraiser
- Approaching my CCG for part-funding
- Investigate the voucher scheme the Specialist Wheelchair Services offer.
My wheelchair gives me the freedom to have an active & purposeful life, without it I’d be isolated & stuck in bed. I’m proud of how my life has turned out, working with charities, attending meetings or travelling to see friends. Nevertheless, my independence would never happen without a wheelchair.
I have experienced being stuck in bed about 13 years ago when I was unable to sit comfortably in the electric wheelchair provided by the NHS wheelchair services. So, I had to wait a year until Caudwell Children’s Charity confirmed that they would fund my current Balder wheelchair.
My Balder wheelchair has been my faithful friend for 13 years, it has adapted extremely well to my changing abilities.
My current wheelchair doesn’t have suspension so whilst travelling in my Motability vehicle or driving outside, the slightest bump or pothole causes me pain & discomfort as my muscles no longer adequately support my neck. Driving my wheelchair outside is an intense & stressful activity as I’m constantly observing the road/footpath surface ahead just to find the route with the least bumps. I always have to think about safety as I have a bleeding condition (Haemophilia), this makes me more anxious to venture outdoors.
The new EVO Lectus wheelchair has a 4-wheel suspension system for a smooth driving experience & an adjustable seating/support system. The power backrest recline, tilt & power leg rest adjustment will help me to stay comfortable all day. I will need a new headrest, sensitive mini-joystick to compensate for my weak hand strength, inflatable lumbar support & a vehicle clamp down system.
Funding for the wheelchair has involved writing multiple letters or filling in forms for charity grant application forms, letters explaining the reasons why my CCG should fund my new EVO Lectus wheelchair. I received an assessment letter from the Specialist Wheelchair Services in Leicester stating that they could not provide a wheelchair that would meet my requirements & only offer a voucher scheme for manual wheelchairs.
I feel that it is unfair for the wheelchair services to expect that electric wheelchair users cannot benefit from the voucher scheme. Owning a private wheelchair has saved the NHS wheelchair service considerable money over the 13 years as I have paid for all the maintenance costs & upkeep of my wheelchair.
The Leicester CCG provide funding for my Personal Health Care Budget & have been wonderful in supporting me. However, as the first person in Leicester to approach them about funding a wheelchair, there is no clear pathway in place.
I’m now awaiting responses from every charity application, meanwhile, I have created a GoFundMe page – https://www.gofundme.com/vivekgohil kickstarting it off with £1000.
I appreciate every wonderful donation & support. You all provide me with hope to carry on so thank you.
The concept of authenticity is connected to creativity, the impetus to action must arise from our inner world not imposed by the outer world.
Detecting authenticity influences how I steer my ship through life, from every thought, decision, role or interaction.
“Authenticity means erasing the gap between what you firmly believe inside and what you reveal to the outside world” – Adam Grant
The Muscle Help Foundation (MHF) recently welcomed me as their 3rd Muscle ambassador. The role of a Muscle Ambassador is to grow the Muscle Warrior tribe, spread awareness through social media to keep the wonderful Muscle Dreams experiences alive.
Muscle Help Foundation’s CEO Michael McGrath was listed in 2015/2016 as one of the UK’s most influential disabled people. He comments that role models “have a really important responsibility to not only inspire tomorrow’s young people and lead by example but also make a commitment in helping others travel their own journey to achieve success.”
Michael McGrath is not only influential in terms of making wishes a reality, challenging the impossible or breaking down barriers but also in changing hearts and minds.
The philosophy of helping others to reach their full potential resonates with me. In fact, attending the 2012 Games Inspired Muscle Dreams event was the catalyst for me to realise my latent potential.
Michael McGrath’s energy and leadership, motivate you to be better, do better and hopefully a little bit of that magic lands on you to inspire the future. That is what authenticity is, construction blocks for a better future.
Our aim is simple: Deliver 657 Muscle Dreams for children and young people with Muscular Dystrophy – That’s one life-changing experience for every muscle in the human body.
Find out about the Muscle Help Foundation’s impact and discover how you can help us change lives and give hope … as we say, that’s the #powerof657.
Spoiler Alert: I discuss plot points from the movie Logan
Writing a review about 2017 has been a very tough task for me, I’ve been delaying putting the finger to keyboard. The death of my best friend David Mayes on 9th October has profoundly affected me. He was such a great guy, loved by everyone and always with tips regarding new gadgets that would make life easier. RIP David Mayes.
With the overlying absurdity of Donald Trump throughout 2017, society seems to be reminiscing about the ‘good old days’ and motivated to disrupt this present paradigm to create a healthier future. It’s a time of change and endings.
I’ve been forced outside my comfort zone when the technology I have always relied upon to interact with the world failed. I decided to challenge an impossibility and transition from using a MacBook trackpad to using a regular mouse. Amazingly, after finding the right mouse and on-screen keyboard I’m now able to be much more productive and less fatigued. The Logitech G502 Proteus Spectrum mouse (what a mouthful) has 11 programmable buttons, an adjustable hyperfast scroll-wheel, advanced sensitivity options and customisable profiles when gaming. Perfect!
The best part of 2017 was the opportunity to work with Microsoft UK (alongside MDUK) and meet some incredible experts in the technology industry. Assistive Technology is extremely necessary for disabled people so my goal in 2018 is to either spread awareness or improve the options available.
The rebirth of old movie franchises such as Alien Covenant or Star Wars: The Last Jedi (which I’ve yet to see) highlights how stagnant the movie industry has become since the superhero shared universe explosion. However, Spiderman: Homecoming was a brilliant movie.
My favourite movie this year Logan was a beautiful celebration of the superhero genre: I’d say as powerful as the Dark Knight. Hugh Jackman’s final portrayal of Wolverine was a gritty, violent but surprisingly thoughtful action film. Logan was a metaphor to highlight the necessity of change and passing the responsibilities onto the next generation.
The theme of Logan was family which has always been threaded throughout the last 10 Xmen movies. We have witnessed the characters Wolverine and Prof X emotionally broken down, exhausted and fearing the future for mutantkind. Wolverine fighting his younger clone and X23 killing the younger clone is a 4th Wall break asking us to forgive the previous terrible movies and have faith in the future of the Xmen franchise.
The Netflix TV series Stranger Things was incredible, it took a 2month chunk of my year. The 80s E.T Twin Peaks vibe was unique and seemed fresh. Every actor was perfect for their role as a character with believable performances.
My favourite game of 2017 was definitely Divinity Original Sin 2 but closely followed by What Remains of Edith Finch. I’ve yet to finish Divinity Original Sin 2 even after 50+ hours but the story is unexpectedly compelling, characters with great humour, difficult combat with 100+ abilities you can experiment with and strange but funny touches such as the ability to speak to animals. What Remains of Edith Finch was a masterpiece in exploring difficult themes, leading you to celebrate life by exploring the Finch family’s life and death. I recommend everybody to experience this game.
2017 ended with an amazing scientific breakthrough regarding individuals (like myself) living with the bleeding disorder Haemophilia A, there are around 2000 people living with haemophilia A in the UK. Haemophilia A is a hereditary condition in which a genetic defect prevents the production of the necessary protein involved in the blood clotting process called Factor VIII. As of yet, there is no cure, the current treatment involves intravenous injections of Factor VIII alternate days or more frequently if required.
The most worrying time for me growing up with Haemophilia was during the stage where my teeth fell out, it was extremely terrifying as every morning my pillow would be saturated with blood.
In 2017, clinical researchers at Bart’s Health NHS Trust and Queen Mary University of London conducted pioneering gene therapy on 13 patients with Haemophilia A. Patients were injected with a copy of the missing gene, delivering genetic instructions to produce the missing clotting factor. A virus was used to deliver genetic instructions to the liver to create Factor VIII. After measuring the amount of blood clotting proteins in the bloodstream of patients, it was found that 11 patients in the trial now have normal or near-normal levels of the previously missing factor and all thirteen patients have been able to stop their previously regular treatment.
What is truly remarkable about this revolutionary new gene therapy is the profound life-changing effects it offers patients with haemophilia A like myself. I never imagined in my wildest dreams that a cure for one of my genetic conditions would ever be found. I’m very appreciative of the difficult and pain-staking work these clinical researchers and scientists did to find this ground-breaking cure.
It’s an amazing way to end 2017 by celebrating the supposedly impossible finally becoming possible.
Who else is ready for 2018?
As an adult with Duchenne Muscular Dystrophy assistive technology is a vital element of living an independent lifestyle alongside physiotherapy support. With the recent explosion in voice assistants like the Amazon Echo into the mainstream, it seems viable for technology giants to innovate in the assistive technology sector. Working from the top down is the best way to make industry wide changes so that improvements can benefit people with disabilities. Assistive Technology is the future for progressive conditions as it can adapt to our changing abilities or enhance our independent lifestyle.
I was approached by Nic Bungay (Muscular Dystrophy UK’s Director of Campaigns, Care and Information) to join MDUK at Microsoft HQ in Reading to pitch an idea to incentivise physiotherapy through gaming whilst collecting data regarding upper-body movement in non-ambulant people with MD. Physiotherapy can seem time-consuming and boring however it is very important to maintain upper-body muscle strength for the future so that you can continue accessing the advancements in technology. Current physiotherapy thinking focuses primarily on keeping us walking for as long as possible however due to the increased number of adults living with MD awareness is beginning to shift to a focus on arm, hand and finger physiotherapy.
The Microsoft Hackathon on the 4th and 5th of December was another chance for Microsoft to meet someone living with a muscle-wasting condition to gain an insight into the daily challenges so that we could work together to find a solution to the problem of how to incentivise physiotherapy through gaming.
The expert physiotherapy knowledge from Gita Ramhdarry and Sunitha Narayanan from MDUK was extremely vital to get the perspective on the challenges they face when giving out exercises to carry on at home. From the information gathered we made a framework to create a wearable device which will collect vital data on heart-rate, respiratory rate and movement. This is a more exciting way for the user to do their physiotherapy exercises at home whilst having fun, so it doesn’t feel like a chore. It is empowering to take control of your exercises in this way so that you can fit important health activities around your life.
I was glad to be part of the MDUK team with Nic Bungay during such an incredible opportunity, as recently my focus has been on improving assistive technology. It is wonderful news that MDUK initiated dialogue with a tech giant like Microsoft with their vast Azure cloud to support charities by making technology that really matters to people with muscle-wasting conditions.
The whole Microsoft Hackathon experience was remarkable, Eve Joseph and Claire Ashton Tate organized everything perfectly from locating empty rooms, leading us on the 500-metre trek from one building to the other and looking after us well. The Hackathon Microsoft team led by Christos Matskas were extremely welcoming, knowledgeable and focused even working tirelessly overnight to complete our device. Without their incredible work, MDUK would never have had the chance to bring our proof-of-concept to life, especially to the stage where we can deliver this device into an internal pilot study.
Hector Minto Senior Technology Evangelist for Accessibility at Microsoft allowed me to test out the new Tobii 4C eye-tracker. The Tobii 4C does not rely on your eyes having to both move the mouse pointer and click instead you click by focusing on a mouse drop-down menu. This makes the device intuitive so that unwanted clicks during use are decreased. The Tobii 4C eye-tracker has the potential to be an excellent product after some final bugs are ironed-out.
The future of Assistive Technology looks exciting, disabled people are no longer the forgotten population of computer users.
Hello, (as many of you know) I’m Vivek Gohil, 27 years old living with Duchenne Muscular Dystrophy and Haemophilia but I am still leading a full active life. This post is a quick overview of my past/current care package and how receiving Personal Health Budgets has improved my life.
Throughout college and university, I received care via various care agencies to help me with personal and social care. This situation was adequately fulfilling my needs during that phase of life. Things really changed with my care after I ended up in hospital with Pneumonia, I needed a PEG feeding tube operation, so my carers required more medical skills training.
As of 2013, I received full care funding from the East Leicestershire & Rutland CCGs since my requirements were becoming more complex. Since 2014 my condition has progressed considerably, as I require CPAP ventilation throughout the night and 5 hours in the day. I need help with every task in the day, like setting up my computer with assistive technology so I can still stay connected to friends and involved with various charities. I am very passionate about understanding my disease, so I can be responsible for my health. Working together with charities like Muscular Dystrophy UK, DMD Pathfinders and Action Duchenne has given me the confidence and opportunity to voice my concerns about the care provided by the NHS.
About 3 years ago I started to become frustrated with how care agencies provided my care. I was continually training new carers which was making me and my Mum tired. My life revolved around the times the care agency was able to provide my care. This organization of my care needs didn’t work for me any longer as I didn’t feel in control of my daily life.
Mariyam Sidik suggested that I would be a good candidate to apply for Personal Health Budgets, which would allow me to be in control of my own care so more personalised to my lifestyle. I was successful and received the Personal Health Budget, however I was a little nervous with finding my own carers and becoming an employer. I decided to use Mosaic to look after the funding, payroll, recruiting and training of my Personal Assistants (PAs).
During the 3 years there have been many tricky situations to overcome but those experiences have taught me important lessons about confidence and moving forward positively. It has been a steep learning curve but a good one as now I can articulate my needs effectively which has made me more independent and assertive. This has enabled me to finally take control of my life.
Recently I took my PAs to attend conferences in London and Birmingham staying in a hotel over 2 nights. Personal Health Budgets has given me the freedom to live my life without worrying about care. I’m very grateful for the ongoing support and encouragement I received from Mariyam Sidik, as I now lead a fulfilling and busy life supporting others with a Muscle-wasting condition. I am very passionate about understanding my disease, so I can be responsible for my health. Working together with various charities like Muscular Dystrophy UK, DMD Pathfinders and Action Duchenne has given me the confidence and opportunity to voice my concerns about the care provided by the NHS.
I don’t want to say that Personal Health Budgets is the perfect solution to receiving care or plain sailing as you must manage everything however PHBs ideally works for me and I would not look back.
The gaming industry has finally realising that making gaming accessible to every type of gamer is a vital component of any hardware or game. This is good news for disabled gamers however, as accessibility is in its infancy there is huge scope for improvement. The most important part of making a difference is changing industry thinking so dialogue between disabled gamers and the industry can ultimately improve the game experience for everybody. Just answer this question: Do you really want to lose $$$ and alienate gamers due to inaccessibility?
The XboxOne has the Co-pilot feature, which combines the input from 2 controllers to become 1 input so that 2 people can play as one. Co-pilot would really help me during gaming, as I always have a carer around so it would make it easier for me to direct them rather them having to reposition my arm after a button is pressed.
Microsoft seem to have more commitment to accessible gaming (compared to Sony) as they recently announced at #G4E Gaming & Disability Community Leads Tara Voelker (@LadieAuPair) & Brannon Zahand (@BrannonZ).
Gaming accessibility features that are innovative and Inclusive like co-pilot shouldn’t be console exclusive but a standard accessibility option across the board. In monetary terms, I am sure you’ll earn more $$$ from gamers with disabilities or parents who want to introduce their young child to gaming.
To see what is happening in the gaming industry regarding gaming accessibility The Develop Conference in Brighton on the 11-13 July is the right place. The heavyweights in the gaming industry Bryce Johnson (Xbox), Henry Hoffman (Fiddlesticks), Ian Hamilton (Accessibility Specialist) & Mark Friend (Sony) are on the panel speaking about current accessibility and discuss future practices from developer level though to broader industry initiatives.
Okay today I’m (finally) answering Carrie’s 20 Questions! Click here to visit her wonderful website Life On The Slow Lane!
1. Morning or evening person?
I’m a morning person, I’ve always liked to start my day early as I have the most energy.
2. Night in or night out?
Night in or night out depending on which friend I’m with.
3. Lots of friends or a few close friends?
A few close friends, I like meaningful friendships with longevity. Besides, it’s time consuming! Haha.
4. Time to yourself or time spent with others?
I enjoy time to myself, as a child I’ve always been able to entertain myself. I relax by reading comic books or gaming so I like the quiet. However, I do enjoy spending time talking to people & having fun.
5. Holiday at home or abroad?
I’m more of a day-out person so I prefer organising activities.
6. Countryside, seaside or city?
Countryside! I know this sounds childish but I love driving past farmland
7. Hot climate or cold climate?
Neither, they both have their downfalls for me.
8. Books or films?
I’m a big reader, I always have a novel or comic on the go. I do watch series like Game of Thrones but I’m very picky on what to watch as it is a huge time commitment. That’s why I watch 22 minute cartoons like Samurai Jack or Star Wars Rebels.
9. Rice or pasta?
10. Tea or coffee or..?
Coffee, I need a cup every morning!
11. Cook, takeaway or eat out?
Option 4: None as I don’t eat meals!
12. Formal or casual?
13. Dogs or cats?
14. Play it safe or be daring?
I am an adventurous person but I do understand my limits, it’s all about balance for me. Everybody is daring in some capacity.
15. Idealist or realist?
Realist, but idealism is such a great personal motivator. Without idealism Martin Luther King or Nelson Mandela would not have had the power to change the ‘real’ world. Idealism is from the heart and Realism is from your mind, we need to join the two.
16. Lead or follow?
I have never really been a follower but I used to find it difficult to direct people. However through maturity I’ve learnt that being confidence in yourself and your needs makes it easier to create the life that you want.
17. Work or play?
18. Lennon or McCartney?
Lennon only due to the song Imagine.
19. Love or money?
Love, no doubt. Money is ultimately a man-made creation but love is priceless. Money is useful though, without it I wouldn’t have a wheelchair so thank you man-made creation!
20. Share your problems or keep them to yourself?
As a child I have always shared my problems with my Mum but I’m now slowly opening up to a few friends. Throughout my life Ive had long periods of being stuck in bed for months so I had plenty of time to work out my anger issues. That’s the reason I may appear a calm person.
I hope you enjoyed this post. Let me know what you think.
Yesterday, I (virtually) attended the first meeting of ThisAbility network in the creative industry, which was held at the D&AD studio in London.
ThisAbility (@ThisAbilityClub) is the invention of my good friend Sulaiman Khan @Kinectricity. Its purpose is to support #creatives who happen to have a disability, foster collaborations between influential people & importantly celebrate creative thinking.
It was great having the CEO of D&AD Tim Lindsay opening the session whilst supporting ThisAbility filling that niche of untapped potential in the Creative industry.
We had a large attendance of people like Michael McGrath (@MichaelMc_Grath) Founder of @MuscleWarrior, Caroline Pay & Mike Alhadeff from Grey, Laura Jordan-Bambach from Mr President and many other creative individuals that hopefully brings collaboration. A special thank you to Nadya Powell from Innovation Social (@NadsBads) for organising the virtual meeting without a hitch.
We discussed what the mission statement of ThisAbility should be:
- Inclusivity rather than diversity
- Change thinking practices as a community
- Persistence in the future
Clarity of purpose is important to ThisAbility, Michael McGrath succinctly put it “Let’s not boil the ocean”. Membership should not exclude any disability so it needs to be pan-disability.
When visiting Sulaiman last week, he mentioning Neuroplasticity: The brain’s ability to reorganise itself by forming new neural connections throughout life. That caused me to think of ThisAbility as a macro-neurone organizing the Creative Sector to form new connections with talented disabled creatives.
#Creativity #Inclusivity #Innovation is the #Future – ThisAbility is the #Route
PLEASE NOTE: I did not attend E3 2017 & all opinions are my own
The gaming industry recently had one of its biggest conferences: E3 2017. This year was full of positive surprises, new VR technology, disappointments & mind-blowing unveilings.
Nintendo unveiled the fantastic Mario Odyssey on the new console Nintendo Switch. Nintendo brought back the innovation it is known for whilst valuing the nostalgia of older gamers. Inclusivity is at the heart of Mario, as it allows free-form play, hidden secrets, interesting gameplay mechanics. The new character Cappy (Mario’s hat) enables you to transform into nearly anything in the game world by throwing him at it, thus subverting the idea of fighting enemies that we all grew up jumping on.
PlayStation presented incredible gameplay of Insomniac’s new Spiderman game. It has brought back the freedom of swinging around New York as a superhero webbing up the bad guys. The game has an original story so thankfully it will have a huge storytelling scope as it is not tied to MARVEL’s Spiderman: Homecoming.
Uncharted: the Lost Legacy was disappointing even though Naughty Dog chose diverse female protagonists Chloe Frazer and Nadine Wood. Yes, the story will be interesting as Chloe is after the mythological Tusk of Ganesh however; the gameplay lacks innovation. I love the Uncharted series but it is time to say goodbye.
I have campaigned for better disability representation in video games, especially in regards to playable disabled characters. I was expecting that this would occur in a narrative game, something like Life is Strange: Before the Storm or A Way Out or a VR game.
Unbelievably the new game Wolfenstein 2: the New Colossus a First-person shooter (FPS) in which you usually play as a Superhuman shrugging off bullets. However, in the first level the protagonist injured in the previous game B.J Blazkowicz needs to use a wheelchair to escape. He moves slowly, it takes him longer to put up his gun on his lap, uses conveyer belts to navigate obstacles or stairs.
Of course B.J Blazkowicz ultimately gains an exoskeleton, which inevitably gives him the ability to walk & become superhuman, this fits the negative SuperCrip stereotype of disability. However starting a level through the perspective of a disabled person in a wheelchair makes disability less of a plot device so through gameplay the player forms a deeper connection to disability.
As a disabled gamer I welcome more inclusivity and diversity in every part of the gaming industry!