Throughout my 28 years, I have on many occasions had to call on the Emergency Care services.
I live with the progressive condition, Ullrich congenital muscular dystrophy. Consequently, I have contractures of the joints, a severe ‘S’ shaped scoliosis, and respiratory decline. I lost the ability to weight-bear at the age of 10, and now use an electric wheelchair to get around. I live with my parents and employ a part-time carer as I require support with daily activities including personal care.
My primary medical concern is respiratory related. Ambulances, A&E and hospital wards are all too familiar to me, having endured several bouts of acute pneumonia, a collapsed lung and pleurisy.
Although general knowledge of my disability is limited within all areas of Emergency Care, on the whole my treatment has always been thorough and adequate, if a little clueless at times!
I have found that whenever muscular dystrophy is mentioned, medics immediately assume it is the Duchenne form. This can be incredibly frustrating as it clearly indicates a lack of education and awareness.
There are many different variations of MD, the effects of which are wide ranging. I do feel that comprehension of these various forms needs to be increased throughout the Emergency Care services.
Each time I have called for an ambulance or been admitted to hospital, I need to relay every detail of my disability and how it affects me. This becomes unnecessarily repetitive and extremely tiresome.
Worryingly, there does seem to be a large gap in the most basic knowledge of muscular dystrophy.
I cannot complain about the care and conscientiousness shown towards me by paramedics, nurses and doctors. However, I am concerned about being in a position where I’m unable to answer their questions regarding my condition.
For instance, it can be dangerous to give those with Ullrich congenital muscular dystrophy supplementary oxygen as we retain carbon dioxide. It is therefore preferable to support breathing with non-invasive ventilation such as a Bi-pap machine. Failure to communicate this vital information can be literally life threatening.
Furthermore, the fact that I require the presence of a carer whilst an inpatient can be problematic. This again, has to be explained again and again, thus demonstrating a complete lack of awareness.
Zenka is a Hungarian pole-dancer with a dark past.
When cranky London mob boss, Jack Murray, saves her life she vows to become his guardian angel – whether he likes it or not. Happily, she now has easy access to pistols, knuckle-dusters, and shotguns.
Jack learns he has a son, Nicholas, a community nurse with a heart of gold. Problem is, Nicholas is a wimp.
Zenka takes charge. Using her feminine wiles and gangland contacts, she aims to turn Nicholas into a son any self-respecting crime boss would be proud of. And she succeeds!
Nicholas transforms from pussycat to mad dog, falls in love with Zenka, and finds out where the bodies are buried – because he buries them. He’s learning fast that sometimes you have to kill or be killed.
As his life becomes more terrifying, questions have to be asked:
How do you tell a crime boss you don’t want to be his son?
And is Zenka really who she says she is?
I confess, I would not ordinarily be drawn to ZENKA based on the front cover. However, I am so thankful I was offered the opportunity to read this latest offering from the brilliant Alison Brodie.
There really is something for everyone in this fast-paced, action-packed novel. It is a rollercoaster of intrigue and excitement. One minute you will be laughing hysterically at the dark comedy, which suits my sense of humour completely. In the next moment the mystery and tension will have you gripped with suspense.
The eclectic characters are fully formed, endearing and creatively written. Zenka herself, with her amusingly unique dialect, is a force to be reckoned with. Hell, I’d love to spend a day with her – it would be an adventure to remember!
With twists and turns aplenty, an unpredictable plot and even an appropriate injection of romance, ZENKA is a must read.
It is unique, cleverly crafted and refreshing, with a thoroughly entertaining blend of elements. Personally I would love to see this cinematic story adapted for the big screen!
I’d like to thank the lovely Alison Brodie for providing me with a copy of ZENKA in exchange for an honest review.
Are you lacking in confidence and social skills? Do you suffer from low self-esteem, struggle to form meaningful relationships or find dating too nerve-wracking a prospect?
Well, if you haven’t already heard of him, allow me to introduce Amin Lakhani, the Dating Coach on Wheels. With hints, tips, and tailor-made “no bullshit” advice, he could be just the answer you’ve been searching for.
Amin, from Bellevue, Washington, has a progressive form of Muscular Dystrophy called Charcot Marie Tooth Syndrome, which presents in overall weakness, particularly the hands and legs. Now 29 years old, he has been a wheelchair user since the age of 15.
He excelled academically, achieving two Ivy League University degrees within four years, progressing onto a successful career at Microsoft. Nevertheless, the Self-confessed “nerd with poor social skills” felt lonely and insecure, with only a few friends and no dating experience.
Finally, at the age of 23, Amin hired a dating coach whom he worked with for around four years. This enabled him to totally transform himself, his relationships and his life.
He’s popular, makes friends easily, has been on over 40 first dates, enjoyed sex and fallen in love. Now the Dating Coach on Wheels, image consultant and motivational speaker is returning the favour.
You became a wheelchair-user at the tough age of fifteen. How did this affect your sense of self and your personal relationships?
I didn’t mind so much at first because I have a huge family and a lot of support. In fact, it was pretty cool because I had this brand new wheelchair and I no longer felt exhausted all the time. Up until that point I could walk a little but I always used elevators and I sort of grabbed hold of the walls and furniture so that I didn’t fall.
But as soon as I started High School I felt different from my peers. I didn’t know anyone else who used a wheelchair, so the fact that I stood-out from the crowd made me really self-conscious. I was lonely, alienated and my relationships became strained because I wanted the impossible: I wanted to get rid of my wheelchair and be the same as everyone else. But of course, that could never happen.
I did have a few school friends but I never had a girlfriend, and was left out of all the usual teen dating etiquette. No girl ever wrote on my locker.
I felt unattractive and thought I had nothing to offer a girl, so I shut myself down. If ever a member of my family asked why I wasn’t dating, I would use the excuse that I was too busy for all that.
Where did you get the idea to seek assistance from a dating coach, and why did you choose that route?
I had tried online dating – the likes of ‘OK Cupid’ and ‘Plenty of Fish’. I was really thorough with my research and looked up what I should and shouldn’t be doing. I was enthusiastic and did everything right according to my research. I was, on paper, a catch. Or so I thought. I was a grade-A student, a high-achiever academically, I had a great job at Microsoft. But it just wasn’t working out for me and that made me feel hopeless. I think my downfall was the fact that I tried to hide my disability from my online dating profiles. I never showed pictures of my wheelchair and never mentioned it. I basically listed my achievements but failed to inject any personality or humour. Had I done this I think I would have been met with a more emotional response. Any response.
I look back now and cringe, but there’s nothing wrong with that. Ultimately it led me to search online forums which is where I found the guy who would become my dating coach. I was 23 at the time and he was doing a workshop called, “Conversation Secrets”. It was then that I decided to get his advice.
You say a turning point for you was being told, by your dating coach, that you will never blend in but that’s okay; rather you should make yourself stand-out from the crowd. Why did this realisation have such an impact on you, and why do you feel disabled people should aim to stand-out rather than fit in?
Yeah, that really did make an impression on me. I learnt that if you don’t like something you should change it. And, if you can’t change it, you should change your opinion of it. It’s true, disabled people are memorable because of their disability. It does make us stand out. But that isn’t a negative thing.
I do think disabled people should embrace their individuality and dress to grab positive attention. People are going to look at you anyway. By nature, humans are curious and we all check each other out – disabled or not. So, make people look at you and remember you for the right reasons. Make them remember your outfit or your style. If you put the effort into your self-image, you look good and feel good about yourself, people wont pity or feel sorry for you because they wont be focused on your disability.
I also learnt, from my dating coach, that being in a wheelchair gives me free rein to talk to any girl in the world. No one is going to slap, punch or snub a guy in a wheelchair, right? So effectively, I could approach any girl I like and just start talking because even if she’s with a guy, he’s unlikely to feel threatened by me. It’s all good practice!
You clearly pay a great deal of attention to your appearance – the signature bow tie, a pop of colour and an overall minimalist, classy aesthetic. How did you develop your personal sense of style and why do you feel this is so important?
I believe you attract what you project. So, if you want to attract a punky type of person, it’s probably a good idea to shape your image around that look. I now look completely different from how I used to. I changed how I dress and style myself according to the type of girls I’m attracted to. We all need to embrace our individuality, consider what we wear and how we wear it. If we don’t feel good about our own appearance, it affects our confidence.
Much emphasis is placed on sex, and for some disabled people this can be a cause for concern. How then would you coach someone whose disability prevents them from participating in the physical act of sex?
Okay, first of all, sex isn’t everything, it’s just a small part of what a relationship is. It’s more important to talk, flirt, connect and feel comfortable in each others company.
With regards to sex itself, I have clients explain their difficulties, circumstances and challenges to me. It’s all about individuality. Every disability is different therefore it’s important to consider everyone’s specific situation.
I have two main points:
Firstly, I ask what the client wants. Do they want someone to support them to participate in sex? Or do they want their partner to support them in the act? Either way, it’s essential to do your research and maybe find out from others with the same physical limitations how they approach sex.
Secondly, you’ve got to make it sound fun and exciting for your partner. Tell them what you want in a flirtatious way and make it sound hot and kinky rather than practical. Remember, you’re giving a gift to this person – to your partner. It’s a hugely intimate thing you’re asking and you’re entrusting your body to them.
You have talked candidly about sex and your own personal experiences. Why do you feel it is important to share this in order to help others?
Yeah I think it’s helpful for me to talk about my own experiences with my clients. It enables us to relate to each other. I’ve been through the same struggles myself and so I can identify in a way that an able-bodied dating coach couldn’t.
I offer advice that is sometimes unconventional. For example, I tell people it’s okay to feel like shit when you get rejected or things don’t go to plan. But you’ve then got to keep going, get out there and try again. All experience is beneficial.
It’s fair to say your target demographic is men. Why is this? Do you think men struggle more than women with confidence and making themselves attractive to others?
Obviously as a guy myself, I can relate more to men, although I have had more female clients recently. I have a wealth of dating and relationship experience that allows me to relate and identify with male clients especially.
There is definitely a gap for guys. They just don’t know how to get in the drivers seat. Women want them to take control but in order to get their guy to that place, they themselves have to take control. So a lot of the time I’m trying to help guys take charge.
Can you please explain your working methods to Disability Horizons readers?
As a dating coach I help people build their skills to make themselves more attractive to others. It’s not just about sex and dating, but also forming meaningful relationships and friendships, too.
For the most part I communicate with clients through video calls and we also Email in between. The length of time I spend with a client depends very much on what they want me to help with, and how hard they are willing to work to achieve their goal. I spent up to a year working with one particular guy who is actually able-bodied. He was incredibly reserved in social settings due to a lack of self confidence, and was looking for more than just a few pointers.
What is the one question you are asked most frequently, and what advice do you give in response?
Men want to know how to ask a girl out and how they can tell if she likes him. I tell them there’s no way to really know for sure if a girl likes you back. You’ve just got to rip off the band aid and go for it.
Women mostly ask how to find a guy who’s interested in more than just sex. My response is to learn to say no! Take your time and make a guy work for it. Don’t give it up on the first date as it leaves a bad impression. Inevitably the guy would assume you give it up to all guys just as easily, and that’s not what men want ultimately. We love the chase and value what we’ve worked hard for.
What are your top dating tips for those who are particularly nervous or lacking in confidence?
It’s okay and totally natural to be nervous. I still get nervous going on a date for the first time. It takes courage and courage leads to nervousness; everyone feels it. You’ve just got to do it. No matter what, you have to try. We all have to go through awkward stages and you will probably look back and cringe at yourself and your failed dates – I know I have. But again, that’s okay.
I also recommend bringing up your disability early on, but in a humorous way. Don’t try to hide it, but at the same time, don’t disclose everything in great detail. You don’t need to be 100% emotionally okay with your own disability. We’re all a little insecure about something. Just put your best foot/wheel forward so you can find the people who prioritise things other than their partners physical abilities. These people are a rare breed, so it will take work (and inevitable heartbreak) to find them.
In terms of date conversation: Pauses, I think, are actually a good, powerful thing. They can be sexual and flirtatious, allowing you to lock eyes and check each other out. I am consciously quiet for extended periods when I go on a date. During these pauses I look my date up and down and make it known that I’m checking her out. This lets her know I like her and will probably make her giggle and flirt in return.
Remember not to talk too much and don’t attempt to fill the silences. It can be exhausting as it’s impossible to process all that verbal information quickly.
Do ask questions, but not just typical introductory questions. Become interested in your date and respond to their answers. If they answer a question very briefly, realise that perhaps they don’t want to talk about that particular topic. Dig deeper into what they do want to talk about and tap into their interests.
Do you think there’s a limit to who you’re able to coach, and have you found any of your clients to be especially challenging?
Oh yeah absolutely. It’s all about motivation. If a client isn’t motivated or willing to do what it takes and work hard for it, they won’t get results. At the end of the day, they need to trust me and do what I tell them, no questions asked. I can’t do the hard work for them.
Where do you see your career taking you and what more do you hope to achieve?
I’m kind of happy where I am right now. I really just want to help more people.
I enjoy writing but mostly I love making videos, talking and being myself on camera. So, ideally I’d like to be more active on Youtube. There’s something about being recorded that’s more effective than someone reading something I have written. In a video, you’re hearing my voice, seeing my mannerisms and humour. You’re receiving the information exactly how I want you to. You just don’t get that through writing.
I feel like I was born to do the work I do. All of my personal struggles have been for a reason. I now have a sense of purpose and can make an impact in a way that I couldn’t if I were able-bodied. In that way, my disability is beneficial.
I’d like to thank Amin for taking the time to talk with me.
Please do connect with the Dating Coach on Wheels on social media:
The dark nights are drawing in and the weather is turning increasingly colder. The harshness of winter fills many disabled people, myself included, with dread. So how can we best prepare ourselves for the months ahead?
We are 80% more likely to catch a cold during winter. Bearing that in mind, here are my top tips to stay well and defend yourself against those nasty winter viruses.
Click here to check out ‘Part 1’, in which I offer my tips to keep warm.
1. Stock up on supplies: Medication –
• It’s always advisable to keep a stock of essential supplies in your home. Several factors, including adverse weather, can prevent you from getting hold of medicines at short notice.
• All my medications are on repeat prescription so that I don’t have the bother of getting hold of a GP every time I need something.
• As someone with Ullrich congenital muscular dystrophy, a common cold for me can develop scarily quickly, and so I ensure there’s always a reserve of antibiotics at home should I need them.
• It’s important to go and get your Flu jab annually and, where relevant, the pneumonia vaccination. Don’t leave it too late to protect yourself from influenza – it takes two weeks from the time you’re injected for your body to build up an immunity.
• It’s good practice to have a List of contacts in case of an emergency. Include medical professionals (e.g. doctors, consultants, physiotherapists and hospital ward/department direct lines) so that you or your next if kin can contact them quickly should you become ill. Keep your list somewhere easy to find, such as on the fridge, and make copies!
• I choose to take supplements including a daily multivitamin and probiotics, in order to boost my immunity. Supplements come in various forms: tablet, capsule, liquid and powder. So if you struggle to swallow pills, there’s always another option out there for you.
• I’m not a fan of water so I drink a lot of herbal teas, such as lemon and ginger, to keep me hydrated and flush out toxins. Both ingredients are naturally antibacterial while ginger also helps ease migraines, inflammation and nausea (the latter being a common side effect of antibiotics). Add some honey for sweetness and to soothe a sore throat.
• I find smoothies and soups are an easy way to get your recommended allowance of vitamins and minerals. It’s really important to eat healthily to aid your bodies defence against all those coughs and colds circulating throughout the winter months. Remember: you are what you eat!
• Top foods: lemon, ginger, garlic, onion, kale, cinnamon, turmeric, honey, apple cider vinegar, grapes, natural yoghurt and chicken soup.
• I keep a little bottle of antibacterial hand gel in my bag (you can buy them really cheaply from most shops nowadays). I use it particularly when out and about or using public transport. It’s a simple way to prevent the spread of germs from surface to surface and person to person.
• It’s stating the obvious but do wash hands with soapy water and maintain clean surfaces within the home. It’s often difficult to prevent all members of a household becoming ill when one gets sick. But simple precautions such as this could make all the difference.
• Grab yourself a few packets of antibacterial wipes and remember to clean phones, remote controls, computer keyboards and door handles regularly. You’d be amazed how much bacteria harbours there.
• Be considerate and try to cough and sneeze into a tissue rather than the air. It’s a good idea to keep plenty of tissues in stock. Please don’t do what my Dad does and carry a snotty cotton handkerchief around with you all day – bleurgh!
• Finally, don’t forget to replace your toothbrush after you have fully recovered from an illness.
• It’s beneficial to stay as active as physically possible, particularly throughout winter as immobility makes us more vulnerable to infection.
• I am completely non-ambulant and so this is a major issue for me. Immobility results in muscle decline and poor circulation, which in itself leads to further complications.
• Although I cannot exercise in a conventional fashion, I basically wriggle and move about as much as I can. For example, I flex my feet & wiggle my toes, lean back and forth and side to side in my chair. Don’t be afraid to put some music on, loosen up and just MOVE however you can, for as long as you can.
• If you are able, go swimming as this is the best exercise for those with physical disabilities.
• Remember to pay attention to your lungs! Deep breathing exercises are an essential daily requirement for me. Following the Active Cycle of Breathing Techniques (ACBT) helps to keep me as strong as I can be.
5. Avoid germs:
• I am particularly susceptible to respiratory viruses. If I go anywhere near someone with a cold, 9/10 I will catch it. As a common cold for me can quickly progress into a much more serious condition, I do my best to limit exposure to infected people.
• I avoid overcrowded spaces and public transport when I’m feeling run-down, whilst taking and shortly after a course of antibiotics as this is when my defences are the lowest.
• At times when coughs/colds are prevalent within the local community, I try to stay away from enclosed public places e.g. trains, buses, cinema, supermarket/stores, pubs, clubs etc.
• If you must go out, remain in the fresh, open air (but wrap up warm).
• I always wear a scarf when out and about. When necessary, I can use it almost like a mask, pulling it up over my face. This prevents me from inhaling and contracting airborne viruses.
• Why not add a few drops of Olbas Oil (eucalyptus) to your scarf. That way, when you do need to pull it up over your nose and mouth, you can breathe in the fresh scent and it won’t feel stuffy.
I really hope this was helpful! If so, please share this blog post so that others can benefit too.
I’d love to hear from you – what do you do to stay well throughout winter?
Admittedly I was unaware of the pioneering disability advocate Robin Cavendish prior to the release of Breathe, a much anticipated biopic starring Andrew Garfield. Thankfully, this important figure’s story is sympathetically portrayed with charm, decency and humour in Andy Serkis’s directorial debut.
The film brings to attention the life and achievements of one of Britain’s longest-lived responauts – Robin Cavendish (Garfield) who, at the age of 28, became paralysed from the neck down after contracting polio. Unable to breathe for himself, he was kept alive for almost forty years by a mechanical respirator.
We are first introduced to the handsome, sporty and awfully posh tea-broker in late 1950s England, where he meets and falls in love with the equally posh Diana, affectingly played by Claire Foy. The blissfully happy couple marry and relocate to Nairobi where Diana announces she is pregnant. Life was good and seemingly limitless.
Struck down only a year into their marriage, Robin and Diana are told curtly by doctors that he will survive no more than a few months. Confined to his hospital bed, Robin wished for death, mouthing to brothers-in-law the words ‘let me die’. Depressed and resentful, he spits in the face of a hospital chaplain who suggests his suffering is part of God’s plan.
A helplessly devoted Diana asks what she can do, to which her husband responds, “Get me out of here”. Choosing to courageously risk death rather than submit to merely exist, hidden away as a patient for the remainder of his days, Robin was the first to pave the way for all other incarcerated disabled individuals. He determinedly pursued life, freedom, social integration and acceptance.
Opposing contemporary medical convention, the Cavendishes defiantly leave the hospital constraints in a blaze of glory, ignoring a disgruntled doctor who calls after them, “You’ll be dead in two weeks!”
Upon their exit they pass by two women who comment that it’s “not right” and “cruel” even, for “them” to be out and seen in public. This brief dialogue epitomizes the narrow-minded medical and social prejudice towards the severely disabled population, at the time.
The remainder of the film chronicles Robin’s fight to challenge such perceptions, whilst also pushing the boundaries of possibility. Not only does he succeed in changing attitudes, he was instrumental in making revolutionary practical advancements, thus effectively changing the lives of thousands of disabled people worldwide.
With the assistance of Oxford professor and inventor Teddy Hall (Hugh Bonneville), Robin develops a wheelchair that incorporates a ventilator, allowing him the freedom to venture beyond four walls, which he does with gusto.
A particularly funny episode involves a family holiday to Spain, during which Robin’s electrical respirator blows up, leaving him, Diana, their son and Diana’s brother stranded on a dusty layby. Not so funny, you might think. But the interaction that follows adds much needed light-relief.
While wife and son keep a jovial Robin breathing with the aid of a bag respirator, Tom Hollander’s character goes in search of a phone to call Teddy Hall back in England. The group then set up camp and attract a local crowd who party with them until Teddy makes a comical arrival on the scene.
As in life, there are moments of heart-breaking despair adding shade to the sunny optimism and whimsical jollity throughout. In one such scene, Diana presents photos of their former life in Nairobi to young son Jonathan who asks, “Can we go to Africa, Daddy?”
Unable to explain his plight to the youngster, he stifles tears of anguish as a watery-eyed Diana can say only, “I’m so sorry”. “So am I”, Robin softly replies.
Some years later, Robin teams up with Doctor Clement Aitken and together they tour Europe, demonstrating the custom made wheelchair. Particularly shocking is their visit to a German hospital where disabled patients are maintained in what looks like a futuristic, white-washed morgue. If you didn’t know this is a true story, you wouldn’t believe it.
The film, which on the whole is a little too rose-tinted, benefits from stark, impactful reminders of the ways disabled people were viewed, treated and constricted. However, it lacks detail and grit, failing to depict the daily grind of real life, the mental strain and tensions within relationships.
While the central performances are commendable, they fail to achieve the same conviction and reaction as those of Eddie Redmayne and Felicity Jones in the comparable The Theory of Everything (2014).
Nevertheless, Breathe no doubt remains an inspiring tribute to the highly influential innovator Robin Cavendish and his triumph over adversity. His story has been realised with love, affection and sincerity, quite literally since the producer, Jonathan Cavendish, is his son.
*This article can also be found on the Muscular Dystrophy Trailblazers website.*