Muscular Dystrophy | A Guide for Parents

About Me

– Disability blogger from the UK
– I have a rare, progressive condition: Ullrich congenital muscular dystrophy
– Born in 1988, with ‘floppiness’ and dislocated hips
– Slow rate of progression: I didn’t start to walk until 19 months of age. Prior to that, I ‘bum-shuffled’
– Able to walk very short distances, wearing custom-made leg splints, until age 10
– Fell over a lot as a child
– Never able to walk up or down steps or stairs
– I am now completely non-ambulant and use a powered wheelchair
– Contractures in all joints (knees, hips, elbows, wrists)
– Severe ‘S’ shaped scoliosis (curvature of the spine), which has not been surgically corrected
– Education: I attended mainstream school, then continued onto college (A-Levels) and later university, completing a degree in Art & English Literature

Diagnosis

Learning your child has a neuromuscular condition can, of course, be distressing and concerning.

In some cases, there may be a family history of the condition, whereas for others, like me, it could appear completely ‘out of the blue’.

I am the only member of my family with any form of muscle-wasting condition.

So, when I was diagnosed with congenital muscular dystrophy, aged 4, following a muscle biopsy, my parents were venturing into the unknown.

It was 1992. There was no Internet, no Google, and no one to relate to.

For us, muscular dystrophy was new and unheard of.

How and When to Tell Your Child

It may be beneficial to talk to other parents of children with a similar condition. If this is something you think might be helpful, ask your care advisor or neuromuscular consultant.

There is no right or wrong answer! Only you can decide what is best for your child.

It is important to consider siblings, as they should be included in any discussions you have as a family. However, I would strongly advise against telling siblings more about the condition than the affected child. Any information you choose to share with your children should (in my opinion) be fair and equal, regardless of age gaps.

When deciding if, when and how to tell your child of their diagnosis, consider:

– Their age
– Their own awareness of their disability – Emotional maturity
– Your ability to fully answer any questions they might have

From my personal perspective, I recommend an open and honest policy from the very beginning.

I received a diagnosis of congenital muscular dystrophy at age 4. This was specified as Ullrich CMD many years later.

I was always aware of my disability and limitations. I recognised that I was different from my peers – unable to walk, run and climb steps. I also looked different – I was very thin as a child, had joint contractures and scoliosis, causing asymmetry of the torso.

My parents told my siblings and I of the term muscular dystrophy, meaning that my muscles are much weaker than those of other children. At that stage, this was all the information I needed.

For many years, when other children would ask the inevitable question, “what’s wrong with you?”
I would simply answer, “I’ve got muscular dystrophy, so I can’t walk like you”.

Infancy

– Do your research: These days, there are many reliable resources of information. Ask medical professionals including consultants, physiotherapists and occupational therapists. I also recommend reaching out to those directly affected, such as other parents and adults with muscle-wasting conditions. Try social media and search for groups to join.
– Always trust your instincts! Aware of my delayed progression as a baby, my mother sought medical help and was told she was an “over-reactive mother”. Thankfully, she persisted and met with a neuromuscular specialist, who almost immediately identified my condition.

Starting School

– Starting school can be daunting for any child. But for a child with muscular dystrophy, this transition can be even more challenging.
– There is no reason why a child with a muscle-wasting condition shouldn’t attend mainstream school. However, you must consider your child as an individual and decide whether or not you feel this would be best for them. Indeed, your child may have a preference. Some may elect to attend a school for special educational needs.
– I suggest making several visits to shortlisted nurseries or schools. Check all areas for accessibility. Meet with staff and the SEN team.
– It is essential to ensure staff are fully aware of your child’s needs and abilities. Meet with the special educational needs co-ordinator (SENCo) well in advance. If possible, meet and introduce your child to teachers and support assistants. This will help them feel more at ease when their first day of school arrives.
– Ask your child’s physiotherapist and/or occupational therapist to visit the school and meet with staff to share their knowledge and expertise.
– Be positive, be optimistic, be encouraging. BUT don’t make promises you can’t keep: As your child grows and interacts with other children, they will become increasingly aware of their differences. They may ask why they can’t stand, walk or run like their friends. Furthermore, if your child has a progressive form of muscular dystrophy, they may wonder if their symptoms will get worse as they get older.

I was able to walk short distances until the age of 10. We were never given any information or guidance. We weren’t advised if or when my ability to walk would come to an end. I would therefore often ask my parents, “will I always be able to walk or will I have to use a wheelchair?”

I appreciate why many parents may be reluctant to overshare and reveal what the future may hold, for fear of scaring their child. However, I feel it is important to be open and honest. If you’re unable to answer their queries, say so.

Knowledge and preparation is power!

Teen Years

– For most children with muscular dystrophy, the biggest changes occur during puberty.
– Growth puts extra strain on weakening muscles.
– If able to weight-bear, your child could lose this ability resulting in the need for a wheelchair.
– It is likely your child will accept and embrace mobility aids and equipment more than you. Children are very adaptable. For me personally, using a wheelchair was a great relief. A wheelchair offers mobility and freedom.
– Growth also leads to contractures. Regular physiotherapy helps to maintain flexibility and movement.
– If untreated, spinal curvature (scoliosis) will progress, resulting in asymmetry of the torso, a tilted pelvis, pressure sores and discomfort.
– Scoliosis, along with muscle deterioration, impacts on respiratory function. If your child feels overly tired, naps during the day, or experiences regular headaches, particularly on first waking, you must see a specialist respiratory consultant. It might be necessary to introduce nocturnal noninvasive ventilation.
– Noninvasive ventilation (NIV) comes in the form of either a CPAP or BiPAP machine (usually the latter).
– Bilevel positive airway pressure (BiPAP): a face mask is worn, and air is delivered from a machine through a tube to support breathing.
– Other respiratory equipment your teenager may benefit from, especially when ill: Nebuliser and cough assist machine (seek advice and information from your respiratory consultant and respiratory physiotherapist).

Other Family Members

Some forms of muscular dystrophy are inherited. This can obviously be a concern if relatives are planning families of their own.

A few years ago, my brother and his wife decided they wanted to have children. Because of my condition, they sought genetic counselling, taking with them a copy of my medical record.

It was determined that my brother is highly likely to be a carrier, while his wife is highly unlikely. Once pregnant, they were offered a test which involved inserting a needle into the developing embryo to ascertain if the baby would be born with muscular dystrophy. They decided against this due to the invasive nature of the procedure.

They now have two children. Neither have muscular dystrophy.

Accepting and Adapting

As a parent, it is natural for you to focus all your energy into your children. Raising a child with muscular dystrophy brings with it many more challenges. This can impact on your health and relationships. It is therefore crucial to take good care of yourself too.

Remember, it is okay to cry, scream and shout! I’m sorry to say, battles are never ending and you will need to fight for your child throughout their life.

It’s good to talk: whether you choose to confide in relatives, friends, fellow parents of disabled children, or healthcare professionals – don’t bottle up your feelings, concerns and frustrations. This will negatively affect the wellbeing of you and your family.

Make time for yourself:

“what time?!”, I hear you say.

I fully appreciate that caring for a disabled child is a full-time job. But you must seek some form of relief. Even if it is just meeting with friends once a week for coffee. You need space. Your child needs space too.

*Disclaimer* The purpose of this post is to offer support and advice from my personal perspective, having lived with Ullrich congenital muscular dystrophy for over 3 decades.

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My First Ceiling Hoist

As some of you may know, my very first ceiling track hoist was *finally* fitted on Monday 11th December.

I now have a straight track in my bedroom and a separate H-frame in my ensuite bathroom.

Why I need a ceiling hoist

I am 29 and completely non-ambulant due to Ullrich congenital muscular dystrophy. Being rather petite, I have always been manually transferred (yes, lifted by family and carers) rather than hoisted. This method has always been preferable since it’s much quicker and frankly less faff. But, we’re all getting older and more frail.

I live with my parents who are both in their 60s. They are my primary source of support, though I do employ a carer part-time. My mother underwent a full knee replacement in August 2017, and is therefore limited in how much she is able to help me. Consequently, we have reached a stage where a ceiling hoist is a necessity.

A long and frustrating process!

Back in October 2016, Mom was told she needed a full knee replacement. The following Spring, my only carer announced she would be leaving within the next few months to pursue a career as a paramedic. With this in mind, I contacted my local community occupatinal therapy team to request an assessment. I was told they’re vastly understaffed and, with an extensive waiting list, I would need to be in a terminal condition in order to be seen. I appreciate their predicament, I really do, but I was unwilling to be fobbed off so easily.

I was instructed, over the phone by an OT I had never met, to “camp out”, meaning I should wash, dress and be toileted on my bed. Yes, for a prolonged and indefinite period of time, I should go without a shower and simply not wash my hair. (Due to my physical limitations and my wheelchair, there’s no way I could wash my hair over the sink).

Disgusted at her casual disregard, I asked my neuromuscular consultant to issue a letter of support. On receipt of this, an OT suddenly found time to visit me in my home for an assessment. Following this, representatives from Prism Medical and TPG DisableAids attended separately to advise, measure up and draw plans. Both rep’s then submitted quotes to the purse holder at County Council who, of course, approved the cheapest option.

NB: A portable hoist was trialled but proved unusable with the layout of my room and the type of bath in situ.

Prism Medical

We were expecting Prism to arrive at 9am on 24th October 2017, as arranged. Having waited over an over with no sign of anyone, I called only to be told they weren’t coming because of a “technical issue”.

To cut a long story short, Prism claimed they couldn’t connect the track from my bedroom to that in my ensuite bathroom. This is despite consulting with occupational therapists and agreeing to do the job. Prism also claim they left telephone messages for both myself and the OT’s, on the previous Friday, to inform us that they wouldn’t be attending. Neither I, nor the community OT’s received any messages. I call bullshit!

Dad even removed the partition above the bathroom door in preparation.

Later, I learnt that Prism have similarly disappointed several others, resulting in formal complaints being issued against them. So when the purse holder at County Council told me she would renegotiate with Prism rather than approve funding for TPG to carry out the work, I insisted otherwise.

Having to fight for your rights and basic needs is, unfortunately, very much part and parcel of having a disability. ‘Tell, don’t ask!’ This is my motto. In my experience, if you are not clued-up and assertive, those in authority simply fob you off.

TPG DisableAids

Thankfully, Funding was approved after a different OT, accompanied by the rep from TPG, visited to discuss and re-evaluate the situation.

Rather than trying to connect the single rail in the bedroom to the H-frame in the ensuite bathroom, it was decided that two separate hoists would be best.

My carer had by then handed in her notice and would be leaving at the end of the month. I was seriously starting to worry the hoist would not be in place before Christmas.

But much to my relief, TPG (who, compared to Prism, were infinitely more professional and efficient throughout) booked in for the 4th December.

Then, just my luck, we were hit by the worst snow in 7 years! It was like flipping Narnia.

I tried to remain optimistic though in reality I knew there was no way TPG would be able to make the journey from Hereford. And they didn’t.

So, it was third time lucky, on the following Monday that the long-awaited ceiling hoist was installed. I no longer need to worry about hiring new carers as lifting is not an issue. Furthermore, the pressure is off Mom – literally! And, the thing I am perhaps the most happy about – my dealings with community OTs and the County Council are over.

For now at least…

(Apologies for the poor quality of the images. All were taken by myself on a Samsung S5!)

20 Questions with…

Rebecca who has cerebral palsy

I recently got chatting with a lovely lady called Rebecca, who contacted me after reading my blog.

Rebecca, who has cerebral palsy, is high-achieving, ambitious and incredibly interesting to talk to.

Consequently, I thought it would be beneficial for you guys to learn more about Rebecca, her views and how she manages life with a physical disability…

1. What is your disability and how does it affect you?

I have Ataxic Cerebral Palsy, which affects my four limbs and means that I use an electric wheelchair for getting around both inside the house and for outside activities in my day-to-day life. I also have a visual impairment called Nystagmus, which prevents me from going out unaccompanied as I sometimes struggle to see steps and kerbs in the street. My disability affects my life as I require 24 hour care.

2. What is the worst thing about living with your disability?

The worst thing is the stigma and negative attitudes that still surround disability. For example, strangers often make assumptions about my mental capabilities and underestimate my intelligence. However, I am learning to become resilient through my experience of this, and have developed coping mechanisms.

3. What, if any, are the positives to having a disability?

The free carer ticket to gigs/festivals/theatre/talks is a bonus! I also value my electric chair and the feeling of acceleration when I drive fast. On a more serious note, I view the fact that I feel I have a unique perspective on the world as a result of my disability as a positive. I have a greater tolerance of difference due to the empathy and understanding that my disability has taught me.

4. How do you feel about the term ‘disability’? Do you refer to yourself as having a disability or do you prefer another term, such as differently abled?

I used to physically jump at the word ‘disability’ as well as ‘wheelchair’ and ‘handicap’. This was because hearing myself being described as disabled hit home the fact that other people viewed and labeled me in this way. It made me feel as if my disability was my main or only attribute. This all changed when I attended counseling sessions in my early 20’s, where I was encouraged to unpack the meaning of these words and confront why they prompted a physical reaction from me. It is still the case that disability will never be my favourite word, but I’m now comfortable enough to describe myself in that way to others.

5. Do you feel under-represented in the media? If so, what changes would you like to see?

I can understand why some people would feel under-represented, and I agree changes do need to be made. But in my opinion, these changes reside in discussion, ideas and inclusion rather than purely exposure.

6. Are you a leader or a follower?

I used to be a follower, afraid to voice my opinions. Now I am comfortable taking the role of the leader in certain social situations, i.e. with less confident friends I am able to guide the conversation to allow people to be heard. As well as this, I hope to lead with my ideas surrounding disability ethics and the research I am doing in this particular area.

7. Optimist, pessimist, realist or idealist?

I live in the most realistic way possible so that I am most connected with reality and grounded in my thoughts. To be too pessimistic can prevent us from progressing, whereas being overly optimistic can also be counterproductive to personal growth.

8. Are you easy going or high-maintenance? Would those who know you best agree?

I would say that I am easy going because I have learnt how to balance my own well-being so as not to allow myself to become too stressed out. Those who know me best would probably agree, but I imagine they would claim that I’m more high-maintenance when I have an important deadline to meet!

9. Are you more of an introvert or an extrovert?

This really depends on whom I am with. In my professional career as a counsellor it is my responsibility to be the facilitator who steers the conversation, and this doesn’t allow for me to be introverted. However I can still become shy around people that I struggle to connect with on a deeper level.

10. Are you more creative or logical?

I am more creative in my thoughts and my writing and in the way I can construct an argument in a debate.

11. You are currently studying Philosophy at Cambridge University – why did you choose that subject in particular?

I have been fascinated by the world around me from a young age with my intuitive questioning of values and beliefs. This then developed when I embarked on a short course to find out more about the subject, which then inspired me to study philosophy at a higher level. What I like about philosophy most is that it’s a never-ending endeavour; there is always more to question, learn and explore. Philosophy can help to find new ways to think about old problems and with considering things from different perspectives, to overcome many of the hurdles that we encounter in our everyday lives.

12. What difficulties have you faced whilst at University, resulting from your disability?

Having to deliver presentations has been difficult for me, but luckily the University allowed me adapt my assessments, and have been really accommodating. One of my personal assistants delivered this presentation and I was able to answer class questions afterwards. I also require a personal assistant to write down my thoughts, and this can sometimes take a long time because conversations can be misinterpreted. For this reason, I always request the option of extra time because it can take longer for me than for an able-bodied student to formally express my thoughts in an assignment.

13. What do you hope to do following completion of your degree?

I am hoping to continue studying and develop my qualifications, embarking on a postgraduate course that combines philosophy and mental health.

14. Are you the type of person who always knew, from an early age, what job you wanted to pursue?

Yes, from about the age of 10 I remember hearing of people’s difficulties and wanting to help them by giving them advice at the time! This then developed into aspiring to become a qualified counsellor.

15. What is your ultimate ambition in life?

To gain as much knowledge and wisdom as possible to discuss new ideas and create meaningful change.

16. Bucket list: Can you list your top 5 goals?

I took some time to contemplate this question because I’ve never had a bucket list as such, but I’ve managed to come up with 5 things that are important to me:

1. Experience something daring in nature – i.e. wheelchair tree-top climbing

2. Using my counseling skills to change someone’s life for the better

3. Learn more about the psychiatry side to mental health

4. Finish reading a book in its entirety!

5. Finish my dissertation

17. If you won the Euromillions, what would you do with the money?

I would first of all build my own custom-made cabin in the forest. I would also double my betting stakes. (I do now and again enjoy a little flutter on the horses and football!) Although overall I am pretty content with my life how it is now.

18. Where is your favourite place in the world?

I really love spending time by the weeping willows in Newnham, Cambridge. These trees overlook the River Cam which makes it a very tranquil spot, where I feel safe and at peace.

19. Do you believe in ghosts, spirits and the like?

I have heard many stories about spirits and the afterlife that have led me to believe, or at least be open to the idea.

20. If a pill existed that could completely cure you of your disability, would you choose to take it, and why?

No, simply because I wouldn’t be me any more. And I wouldn’t have experienced the same things if I had been able-bodied. The only thing I would perhaps alter is the fact that I don’t get to spend much time on my own.

I’d like to thank Rebecca Sherwood for taking the time to answer my questions.

What do YOU think of Rebecca’s responses? how would YOU answer these questions? Leave and comment and let me know!

If you found this blog post interesting, please do share so that others can see it too – thank you!

Interview | Amin Lakhani: The Dating Coach on Wheels

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.

1. 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.

2. 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.

2. 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!

4. 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.

5. 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.

6. 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.

7. 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.

8. Can you please explain your working methods?

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.

9. 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.

10. 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.

11. 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.

12. 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.

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*This article can also be found on the Disability Horizons website.

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The Winter Edit: Part 2

5 Tips to Stay Well through Winter

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.

How can we best prepare ourselves for winter?

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 for Part 1 ~ Top Tips to Keep Warm through Winter!

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.

Contacts –

• 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 of kin can contact, should you become ill. Keep your list somewhere easy to find, such as on the fridge, and make copies!

2. Nutrition:

• 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. 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.

3. Cleanliness:

• 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 when out and about or using public transport. It’s a simple way to prevent the spread of germs from surfaces and person to person.
• It’s stating the obvious but 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!
• Replace your toothbrush after you have fully recovered from an illness.

4. Physiotherapy:

• 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. For me, a common cold 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).
• 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! Please SHARE this blog post so that others may benefit.

I’d love to hear from you – what do you do to stay well throughout winter?

Breathe | Film Review

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.

The real Robin Cavendish with son Jonathan

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 his 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.*

You might also be interested to read:

My Interview with disabled actor Daniel Baker, who has Duchenne Muscular Dystrophy

My Interview with Emmerdale Actor James Moore, who has cerebral palsy

Life Update: Part 2

Carers and my first ceiling track hoist

Hey everyone, hope you’re all well.

As promised, here are the developments following on from my previous life update…

Care

Having re-advertised for a part-time carer to replace my current PCA, I interviewed seven applicants, plus one who’s interested in ad-hoc cover. All were enthusiastic, though as any employer will know, things often change in the days that follow.

There was only one no-show which actually isn’t bad at all compared to my previous attempts to recruit new carers.

One of the seven ladies later asked to be a backup as she decided she couldn’t do every weekday. From the six remaining, I invited three to shadow, knowing that at least one would change their mind. I was right; they did.

The first was a no-show (yes, another)! After I contacted her to ask if she was going to attend, she simply replied, “I forgot”. Needless to say she was scrubbed from the list.

Number two messaged me a few days before shadowing, to say she had reconsidered and felt there weren’t enough hours. This left me with one applicant.

Thankfully she did show up. Seemingly reliable and keen to take on the role, I offered her the job on a trial basis from Monday 30th October.

My current PCA is leaving in December to pursue a career as a paramedic. So, fingers crossed all goes well with the newbie…

Ceiling track hoist

To my surprise, I was contacted a couple of weeks ago by Prism Medical to arrange a date for installation. Finally, after waiting for so long and constantly pushing the matter, I would get the much needed ceiling hoist on Tuesday 24th October.

In preparation, my Dad had to remove the glass intersection above my bathroom door to allow through-access.

Before:

After:

When the day arrived, we cleared the room and waited for the workmen to arrive, as expected, at 9am. An hour later and still no sign. Becoming impatient, I called Prism Medical but was told they wouldn’t be coming due to a technical issue.

What?! What technical issue?

Prism Medical claim they left a voice message, on the previous Friday, explaining they couldn’t connect the single rail going from my bed to the bathroom door, with the H-frame in the bathroom. We received no voice message. They also claim to have contacted the Community OT’s. They too have had no calls or messages from Prism.

A rep from Prism previously visited my home to take measurements, draw up plans and provide quotes. They then corresponded with a Community OT (or so I’m told) and agreed to install the ceiling track hoist. Yet despite all this, they have suddenly decided they’re unable to carry out the work. Excuse my language, but what the actual fuck?!

As you might expect, the remainder of Tuesday was spent on the phone: trying to get hold of an occupational therapist, complaining to and about Prism Medical, and negotiating with County Council Equipment Services.

I’m hoping to get funding approval for TPG to do the work, as they too had sent out a rep to provide a quote.

Naturally the County Council opted for the cheaper quote from Prism. That’s worked out really well, hasn’t it!

Final Thoughts

Today is Thursday 26th October. There has been no notable progress since Tuesday. Essentially, I am back to square one – harassing the OT’s daily to ensure my case is not ignored. Unless you constantly pursue the issue yourself, frankly nothing happens.

I am so angry and disappointed with the whole cock-up, though sadly not overly surprised. In my experience, unless you’re prepared to self-fund, this is the service (or lack thereof) you can expect!

I will be putting in a formal complaint and am seriously considering writing to my local MP. If we allow companies and organisations to get away with such failures and blatant disregard, nothing will change.

So, once again the saga continues. I will keep you updated – *Keep an eye on Twitter and my Facebook page*

Thank you so much to each and every one of you who has offered advice and support!

My Top 10 Disabled Celebs | The Girls

The Girls:

My latest article for Disability Horizons showcases my pick of the top 10 disabled FEMALE celebrities. Because, in the wise words of Beyonce, girls run the world!

*Last year, Disability Horizons compiled their top 10 disabled celeb’s, including both men and women. To avoid repetition, I have not included any of the women from that previous article.

There is a great deal of ongoing discussion and debate around the inclusion and representation of disabled people within the media. Put simply, there is not enough diversity. Still, in 2017, the vast majority of British ‘celebrities’ are able-bodied.

However, we are seeing the emergence of more and more disabled people on our television screens and in the public eye. But, how many can you name? When contemplating this very question, I realised that most of those who immediately came to mind were male – Stephen Hawking, Warwick Davies, Alex Brooker, Adam Hills, Ade Adepitan and Jonnie Peacock, to name a few.

So what about the ladies?…

Hannah Cockroft MBE

Hannah, who has cerebral palsy, suffered two cardiac arrests within 48 hours of birth, which affected two parts of her brain. She was left with balance, mobility and fine motor impairment.

But this has most certainly not held her back. She is a gold medal-winning Paralympic wheelchair racer and 10 times world champion. In 2012 she became the first Paralympian to break a world record in the London Olympic Stadium for the 100 metres T34.

In 2014 she won the Sport Relief edition of Strictly Come Dancing with professional dancer Pasha Kovalev. That same year she launched 17 Sports Management Limited, a company representing disabled athletes.

Hannah continued her reign of success at the 2016 Paralympics in Rio where she won three gold medals.

Katie Piper

The victim of a vicious acid attack in March 2008, Katie has endured more than 250 surgical procedures to date. She suffered full-thickness burns (where both layers of the skin are destroyed) and had to wear a face mask for 23 hours every day. She also swallowed some of the sulphuric acid, damaging her throat, and was blinded in her left eye.

In 2009, the former model shared her horrific ordeal in the Channel 4 documentary Katie: My Beautiful Face. She also established the Katie Piper Charitable Foundation, which supports those with severe burns and disfigurement injuries.

In addition, she is now a successful author, television presenter, magazine columnist and philanthropist. An inspiration to many, Katie married in 2015 and is currently expecting her second child.

Cerrie Burnell

Cerrie was born with no right forearm and is severely dyslexic. Since childhood, she has always refused to wear a prosthesis or hide her disability.

An all-round entertainer, Cerrie is an accomplished actress, singer, playwright, children’s author and TV presenter. Between 2002-2008, she appeared in Holby City, Eastenders, Grange Hill, The Bill and Comedy Lab. She then transitioned to presenting, working on The One Show, The Wright Stuff and CBeebies (Jan 2009 – April 2017).

But her first appearance on children’s television was met with controversy. Some claimed that the presence of someone with a physical disability like hers could scare young viewers. In response, Cerrie spoke candidly about her disability and how it’s important that children are exposed to differences, for which she was widely applauded.

She now regularly speaks out in favour of diversity and the inclusion of disabled people in the media. In fact, she recently took part in the Channel 4 documentary Diverse Nation. She’s since reached an even wider audience by presenting all the swimming events for the Channel 4 and the 2012 Paralympics.

Named by The Observer as one of the top 10 children’s presenters of all time, Cerrie has also been declared, by The Guardian, as one of Britain’s 100 most inspirational women.

A supporter of many charities including body-confidence organisation Body Gossip, Cerrie now wants to focus on writing more children’s books and acting.

Francesca Martinez

Critically-acclaimed stand-up comedian Francesca Martinez first became prominent playing Rachel Burns in Grange Hill (1994-8). Since, she has starred in BBC shows Holby City, Doctors and Extras.

But it’s not her acting that she’s most well known for, it’s her comedy. With a self-deprecating sense of humour, Francesca, who has cerebral palsy, describes herself as “wobbly”. In 2000 she became the first female to win the prestigious Daily Telegraph Open Mic Award at the Edinburgh Festival. She was also named one of the 50 funniest acts in British comedy by The Observer.

Also a campaigner and activist, Francesca has organised many charity shows and is a patron of several charities, including Evenbreak, which helps pair disabled people with inclusive employers. She’s also an outspoken opponent of government welfare reform, in 2012 launching the campaign War on Welfare (WOW), which called for an end to disability benefit cuts. She later secured the first parliamentary debate for disabled people by disabled people.

In 2013 she won the Public Affairs Achiever of the Year Award and the following year was named one of Britain’s most influential women.

Her recent sell-out comedy tour was followed by a best-selling book, both titled WHAT THE **** IS NORMAL?! She is currently working on a feature documentary of the same name.

Cherylee Houston

Screen and theatre actress Cherylee was diagnosed with Ehlers-Danlos Syndrome type III (EDS) at the age 23. She has appeared in Doctors, The Bill, Holby City, Emmerdale and Little Britain.

Her most recent role is that of Izzy in Coronation Street, which she has played since 2010, and is the soap’s first disabled character to be played by a disabled actor.

Aside from acting, Cherylee established the Manchester-based youth project TripleC, which aims to make drama accessible to all. She has spoken out about a number of political issues too, including the Conservative cuts to disability benefits and the representation of disability in the media. She also continues to raise awareness of EDS.

Anne Hegerty

Better known as The Governess in the award-winning ITV quiz show The Chase, Anne has a form of autism. In 2005, after watching a documentary about Asperger’s Syndrome and identifying with the symptoms, Anne told her doctors she believes she has the disability. It took two years for her to be officially diagnosed, during which time she lost her job as a proof-reader, due to her inability to multi-task.

Unable to pay her bills, Anne was confronted by bailiffs on New Year’s Day in 2008. She later sought advice and assistance and is to this day in receipt of Disability Living Allowance. Around the same time, her social worker encouraged her to audition for The Chase and even paid her travel costs to get there.

She is now a highly successful television personality and professional quizzer, have participated in Mastermind, Fifteen to One and Brain of Britain. Anne also talks candidly about her life with Asperger’s Syndrome and how it affects her.

Jess Thom

Jess, a comedian and public speaker, was diagnosed with the neurological condition Tourette Syndrome in her early twenties, and also uses a wheelchair. She’s most widely recognised for her memorable appearance on Russell Howard’s Good News in October 2015. The interview garnered much attention and has subsequently been viewed more than 600,000 times on Youtube – you can check it out in our article on 10 awesome disability-related videos.

In 2010 she co-founded Touretteshero, a blog that documents what it’s like living with Tourettes, featuring articles and videos. Its first production, Backstage in Biscuit Land (2014), met with critical acclaim. It has since toured nationally and internationally.

She has appeared on various television and radio programs including The Late Late Show, This Morning and Fry’s Planet Word. In 2013 she also delivered a TED talk about the misconceptions of Tourette’s and the creative potential of tics. While admitting her Tourette’s presents challenges and has been met with discrimination, she prefers to “celebrate [its] creativity and humour.”

Jess is an outspoken advocate and campaigner for disabled people’s rights. Her work often draws attention to the environmental and social barriers that prevent inclusion. An opponent of the medical model of disability, Jess insists her Tourette’s is a source of creativity, her wheelchair allows her freedom, and she is disabled not by her body but by the inaccessible environment.

Libby Clegg

Libby is a Scottish Paralympic champion sprinter, having won gold and broken records. She has a deteriorating condition Stargardt’s macular dystrophy, leaving her with only slight peripheral vision in her left eye. She is registered blind and is an ambassador for the Royal Blind Charity.

She has represented Great Britain in the T12 100m and 200m races at the 2008 Summer Paralympics, and the T11 100m and 200m in 2016 at the Paralympic Games in Rio. She is also the 2012 IPC European Champion and 2013 IPC World Champion.

As if she isn’t busy enough, Libby is also a course tutor and ambassador for Ability Training (ability-training.com), offering accredited disability specific awareness courses for sports coaches and fitness professionals.

Along with her beloved guide dog Hattie, she is helping to educate dog owners on the importance of nutrition and health. Libby raises awareness of the essential part guide dogs play in the lives of those with visual impairment.

She was recently honoured in the 2017 New Year’s honours service when she was appointed MBE for her contribution to sport.

Sarah Gordy

Award winner Sarah, who has Down’s Syndrome, is best known for her role as Lady Pamela Holland in the 2010 BBC TV series Upstairs Downstairs. She has also appeared in Holby City, Call the Midwife and Doctors, as well as various short films, radio dramas, commercials and many theatre productions.

She most recently portrayed Orlando Quine in the BBC series Strike: The Silkworm, based on the books by J.K. Rowling.

She is an ambassador for Mencap and patron of Circus Starr, a performance group that does shows for disabled children. When not acting, she volunteers at her local British Heart Foundation charity shop.

Genevieve Barr

Star of the latest Maltesers advert, Genevieve was born deaf. Having never learned sign language, she lip reads, and is, in fact, a professional lip-reader for different organisations.

She had a major role in the 2010 BBC drama The Silence, and the previous year played a deaf nurse in the Channel 4 comedy, The Amazing Dermot. Following her Bafta and International Emmy Award nominations for The Silence, she went on to act in the BBC3 drama series The Fades, and Shameless on Channel 4.

A freelance disability consultant and public speaker, Genevieve works with the charities Hear the World, Action on Hearing Loss and AFASIC – a charity for children with speech, language and communication difficulties. She also runs courses and workshops for disabled actors.

What do you think of my choices? Who would be in your top 10?

Please leave a comment and share this blog post if you enjoyed it.

Scoliosis | Why I Chose NOT To Have A Spinal Fusion

In my latest piece for Muscular Dystrophy Trailblazers, I explain how and why I chose NOT to have a spinal fusion.

My Experience

Aged four, I received a general diagnosis of congenital muscular dystrophy. Many years later, this was specified as Ullrich congenital muscular dystrophy.

Aged nine, I was offered corrective scoliosis surgery.

At the time, I had no idea why I was going to see this new doctor. To me, it was just another appointment.

There was no faffing around; this guy was straight to the point!

He firmly asserted that I needed an operation to prevent further decline of my spinal curvature.

I was horrified to hear of the graphic details, lengthy recovery period, and how it could even prove fatal.

Bear in mind, we’re going back more than 20 years – the whole procedure was very different to what it is today.

Of course, as an adult I now appreciate that with any surgical procedure, doctors are obliged to inform the patient of every potential risk and outcome, including death. But this was pretty shocking and unexpected news to take in at a young age.

How I Made My Decision

As a child, I attended annual outpatient appointments at Birmingham Heartlands Hospital, where I saw a paediatric neuromuscular Consultant.

My parents and I were never given a prognosis, nor any indication regarding if or how my condition might progress. Life expectancy was never discussed and no doctor could tell if I would, in time, come to rely on a wheelchair. We were very much in the dark, living day-to-day.

Frankly, these appointments frustrated and bored me to tears! We would wait hours to see the doctor, and leave knowing nothing more than we did before.

I have, in all honesty, learnt infinitely more as an adult through my own research and from others living with muscular dystrophy.

My point here is that my parents and I had nothing on which to base our decision. Or rather, my decision.

It is now more than 20 years since I was told I needed a spinal fusion. This was pre-Google and pre-social media.

We weren’t put in contact with anyone who had experienced the operation. So, other than a brief verbal overview from the Consultant, we had no other information or point of reference.

After leaving the appointment in a state of shock, my parents told me that ultimately the choice was mine. I decided I didn’t want to put myself through such an ordeal. I was, at that age, considerably more able than I am now, and none of us had any reason to think I would deteriorate as severely as I have.

Do I Regret My Decision?

At the time, it was, or at least seemed the right decision. I was able to weight-bear, finding clothes wasn’t an issue, I was pain-free, and did not require any inhalers, medication or respiratory support.

The procedure back then was much more invasive, and the recovery extremely lengthy compared to what it is today.

My condition was stable, I was happy and relatively able. Under those circumstances, the disadvantages outweighed the potential advantages.

However, I do often wonder how different my life, body and health might be had I said yes to a spinal fusion.

No one predicted that just a year after the offer was made, aged 10, I would become completely non-ambulant within a very short space of time. Had I any indication that this might occur, my decision may have been different.

Though my scoliosis was considerable, the ‘S’ shaped curve is now much greater. Consequently, my respiratory function is significantly affected and basic comfort is a distant memory.

On bad days, when I’m in pain and struggling for breath, or when I’m ill for months (yes, months) with respiratory infections; I do regret forgoing my one opportunity to correct my skeletal deformity.

But, what’s done is done, and cannot be undone. I’m stuck with me! I can’t change past decisions. I simply have to make the best of what I have and keep moving forward.

I’d love to hear about your experiences with scoliosis and spinal surgery.

– Have you turned down corrective surgery?

– Have you had a spinal fusion? If so, how has your life changed as a result? Is it better or worse?

1 Year Old Today! | Blogiversary

It’s now been one year since my blog, Life on the Slow Lane, was created. I finally bit the bullet on 5th October, with my first (proper!) post going live on 11th October.

As you can see from that first shabby entry, back then I lacked a specific objective. I just wanted to get going after contemplating blogging for many months prior.

Over time I have (I hope) managed to focus the aims and purpose of my blog.

I now concentrate primarily on disability issues, specifically those relating to muscular dystrophy. Here I share my thoughts and experiences, having lived my entire life with Ullrich congenital muscular dystrophy.

Blogging opportunities

Over the past twelve months, I have been extremely fortunate to write for other notable publications including Muscular Dystrophy Trailblazers, Disability Horizons and Limitless Travel.

Life on the Slow Lane has enabled me to interact with many other disability bloggers. The amazing Simply Emma generously invited me to guest-blog for her, which I did in May and July. Then more recently I collaborated with the lovely Gemma over at Wheelescapades.

My blogging highlight of the year

A particular highlight for me was the overwhelming response I received for the piece I wrote about my life with UCMD. The fact that it is an especially personal and exposing piece makes the positive feedback all the more touching. To date, this, my most popular blog-post has been viewed over 11,700 times.

Final thoughts

Admittedly, it’s been challenging and time-consuming. I have so many thoughts and ideas, yet not enough time to execute them all.

I often feel like I’m playing catch-up, mistakenly comparing myself to other much more established disability bloggers.

I’m not a big fan of computers and otherwise avoid them if at all possible. Initially, I had no clue how to even set up a blog, let alone edit and customise one.

I realise many of my peers are adept with design software, graphics and managing websites. But I’m just not. Computers are in no way of any interest to me. I’m old school! So this, along with social media, is something I have had to familiarise myself with.

Blogging goals for the next year

• Continue to upload regular posts
• Reach a wider audience and increase my readership
• Raise awareness of Ullrich congenital muscular dystrophy
• Meet other like-minded disability bloggers

Thanks to you

I’d like to thank each and every person out there who has read any of my articles. I truly appreciate your feedback and support!

As long as Life on the Slow Lane attracts an audience, however small, I will continue to write.