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!

Halloween… 🎃🕸🍁👻🔥

With less than a fortnight until All Hallows’ Eve, here I bring you a few book and movie suggestions to get you in the spirit (you see what I did there – spirit!? Oh, never mind…)

*To check out my top picks from last year, click here.*

Film recommendation: 

IT: Chapter One (2017) Dir. Andy Muschietti

IT: Chapter One is definitely my movie choice this Halloween. If you haven’t already seen it, why not check out a late night screening at your local cinema?

I went to see it with my two older brothers and I’ll be honest, I wasn’t expecting much from this remake based on the novel by Stephen King. But, in my opinion, it’s well made and the casting is spot on. There’s just the right mix of thrills, fright, gore and even humour.

I’m not a fan of horror films in general, simply because I’ve never found one that has scared me. I must say though, this one impressed me!


Family film: 

Hotel Transylvania (2012) Dir. Genndy Tartakovsky

This animated fantasy film, along with it’s sequel, will entertain younger kids and grown-ups alike. Fast-paced and fun-filled, there’s plenty to keep a younger audience engaged, while quirky gags and more mature references will amuse adults.

Hotel Transylvania is essentially about family and the universal theme of a parent reluctantly letting go of their grown child.

Count Dracula, voiced by Adam Sandler, is throwing a 118th birthday party at his hotel, for daughter Mavis. The hotel is a place where monsters can gather and feel safe from the threat of humans, whom they fear. But, trouble starts when 21 year-old Jonathan (Andy Samberg) loses his way and finds himself at what he thinks is an extravagant fancy-dress party. Jonathan, a human, soon locks eyes with vampire Mavis – the only child of Count Dracula – and the pair fall in love.

The story is predictable, but it’s aimed at children and so this is to be expected. However, if you’re looking for a film to occupy the whole family this Halloween, I would recommend this one!


Recommended reading:

Dracula by Bram Stoker

Following on from Hotel Transylvania, it seems appropriate that I select Dracula, written in 1897, as my top pick – though obviously this one is not for the kids!

A gothic horror, the novel is written in epistolary format (a series of documents) and tells the story of Dracula who travels from Transylvania to England in order to feast on fresh blood and spread the undead curse.

He boards a Russian ship, the Demeter, which reaches the northeast shores of Whitby, (where I recently visited).

While there, Dracula becomes obsessed with a young woman named Lucy and begins to stalk her. Lucy soon begins to waste away and is diagnosed with acute blood-loss, though Dr Abraham Van Helsing cannot understand how or why. Eventually Lucy dies, but not before Van Helsing identifies the puncture wounds on her neck. Failing to prevent her from converting into a vampire, he along with three other men, kills her by staking her heart and beheading her.

A team of vampire hunters, led by Van Helsing, then pursure Dracula himself, which leads them to London. In retaliation, Dracula places a curse on Mina, the wife of one of his pursuers.

Through hypnotising Mina, the group are able to track Dracula, who has returned to his castle in Transylvania…

The Signalman by Charles Dickens

If you’re looking for a quick read, this classic short story is the perfect choice. A haunting and spooky tale, it will stay with you long after reaching the shocking conclusion.

Written in 1866, it tells the tale of a railway signalman, troubled by phantom appearances and supernatural goings-on. Over two nights, the signalman meets with the narrator, whom he invites into his gloomy cabin to share his worries and premonitions.

At first reluctant to tell his story, the signalman soon confides that these ghostly visions precede tragic and fatal events on the line. The first being a collision of two trains in the dark tunnel involving many casualties. The second incident saw a young woman lose her life on a passing train.

Convinced these premonitions are all a figment of his imagination, the narrator urges the signalman to see a doctor. However, it may already be too late…


I hope you all enjoy Halloween, whatever you get up to!

If you enjoyed this post, please let me know in the comments below, and don’t forget to share ~ Thank you!

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 NationShe’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 ChaseAnne 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 WorldAction 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.

Jonnie Peacock and Strictly Come Dancing

Here is my latest article for Disability Horizons!


A move forward for disability representation within the media!

As a die-hard Strictly Come Dancing fan, and being disabled myself, admittedly I was pretty excited to hear that Paralympian Jonnie Peacock MBE would be competing in the 15th series.

In a landmark move forward for disability representation in the media, the 24 year-old sprinter is the first physically disabled contestant to appear on the main, primetime show.

Jonnie has taken on the ‘glitterball’ challenge in the hope that it will break down peoples’ views and “change some of the stigmas” around disability.

He added, “some people have preconceived notions of what people can and cannot do based on looking at them, but I think sometimes it’s just a case of not judging a book by its cover.”

Jonnie’s right leg was amputated below the knee after contracting meningitis, aged five. Clearly though, this has not held him back. He competed at the London 2012 and Rio 2016 Paralympics, winning gold medals in both games, and breaking a record for the fastest 100m T44 time in the process.

Partnered with professional dancer and last year’s runner-up Oti Mabuse, he quipped that if voted through to week three, he will ‘glitter up’ his prosthetic leg.

Having made a smooth debut with a charming and technically adept waltz, Jonnie opted to dance with a brand new blade in week two. A decision that paid off!

An energetic jive to Chuck Berry’s Johnny B. Goode caught the attention of the judges and public alike. Earning 29 points put him fourth on Saturday night’s leader-board. His combined score placed him sixth overall. It’s only after celebrities have danced twice: one ballroom and one Latin routine, that they face the public vote.

Since the jive is such a fast-paced dance that requires a lot of bounce action, the blade was a wise move. Despite being highly praised by all four judges for his “outstanding kicks and flicks”, Jonnie later commented that it was “tough” dancing with a blade which is much longer than his usual prosthetic limb.

In fact, the only criticism he received was for his upper body, particularly the lack of focus and refinement in his arms. Both Jonnie and his partner Oti agreed, this is something he has found particularly challenging.

The improvement from the previous week was evident, with greater enthusiasm and commitment to the complex choreography, characterisation and story-telling.

Jonnie revealed his disappointment with the waltz which he felt could have gone better. In contrast, the action-packed jive suits his fun-loving personality much more. He gave it his all, shedding the nerves and demonstrating increased confidence and showmanship.

His memorable jive rivals those of former Strictly winners Ore Oduba, Jay McGuiness and Jill Halfpenny. What makes it all the more impressive is the fact that the jive is notoriously difficult to master, and this was only his second performance. Furthermore, unlike several fellow competitors, Jonnie has no dance experience whatsoever.

The couple’s latest dance, a Paso Doble to the Indiana Jones theme tune achieved a respectable 26 points, placing them eighth for movie week. The slight down-score can be attributed to Jonnie’s dislike of the Paso which demands a stern, serious expression. It also marked a return to his usual prosthesis.

The sportsman says of his choice of prosthetic, “when [the dance] is controlled, slow and not so much jumping around it will probably be my standard leg”. So, it seems the blade will make a reappearance for at least some future Latin routines.

Having captivated the nation with such an endearing and “inspiring” start, could Jonnie be headed for Strictly glory? He has the skill, stamina, drive and discipline, with the potential to go far in the competition. So, why not!

This however, is not the first time we’ve seen an amputee dance with a blade on Strictly. Lance Corporal Cassidy Little, a Royal Marine medic, performed a winning Paso Doble with pro-dancer Natalie Lowe on a one-off edition of The People’s Strictly for Comic Relief in March 2015.

Cassidy, a former comedian and avid tap-dancer, lost his right leg below the knee in 2011, when hit by an improvised explosive device (IED) while on tour in Afghanistan.

Following the loss of his lower leg, Cassidy who in fact studied ballet at University in Canada many years prior, thought his dancing days were over. But a perfect score of 40 for the dramatic and expertly executed Paso Doble proved that his disability need not impede on his natural ability for dance.

Producers invited the war veteran to return for a Christmas special that same year, since the impression he made on the viewing public was so evident. Partnered once again with Natalie Lowe, this time the couple danced an equally impressive, festive-themed jive and competed against able-bodied celebrities.

Earlier this year, Gold medal winning Paralympic sprinter Heinrich Popow dropped out of the German version of the show, Lets Dance, because of swelling to his stump – a concern for prosthesis wearers due to fit and friction. Heinrich, who incurred an injury in week two, pushed through to the semi-final. But, in the end he was unfortunately forced to concede defeat to prevent further damage.

British amputee and former model Heather Mills wowed audiences with her daring moves on the American version, Dancing with the Stars, in 2007. She approached the experience with determination and humour, joking candidly that her prosthetic limb could well fall off mid-dance! The undefeated disability advocate later appeared on the popular ITV show, Dancing on Ice.

Back here in the UK, a Sport Relief edition in 2014 featured four Paralympians: wheelchair racer Hannah Cockroft, blind footballer David Clarke, former World Champion javelin thrower Nathan Stephens and sitting volleyball player Maxine Wright. 10-time Paralympic Gold medalist Lee Pearson took the seat of regular judge Craig Revel Horwood to help select a winner.

Strictly Come Dancing, established in 2004, is now a mainstream television programme in British popular culture. Reaching viewing figures of over 11 million, it is a perfect platform for contestants to raise their profile.

The inclusion of Jonnie Peacock in this year’s lineup has already made a huge impact on the disabled community. It represents forward-thinking, equality and disability in the mainstream. Furthermore, we are encouraged and yes, inspired to focus on ability as opposed to disability and limitation.

Widespread visibility of disabled individuals, such as Jonnie, in the media, will naturally be met with curiosity and questions. But that’s okay, that is progress. Questions result in answers which in turn leads to familiarity, recognition and ‘normalisation’.


Have you been watching Jonnie perform each week on Strictly?

Are you pleased to see a Paralympian included on the show?

Leave a comment and let me know what you think.

If you liked this article, please share so that others can join the discussion.

Thanks!

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 as a child.


My experience

I was offered corrective scoliosis surgery at the age of nine. Back then I was able to walk short distances wearing leg splints and had a general diagnosis of congenital muscular dystrophy. Many years later this was specified as Ullrich congenital muscular dystrophy.

I had no idea why I was going to see a consultant orthopaedic spinal surgeon. I was nine! To me it was just another aimless, inconsequential appointment.

There was no faffing around; this doctor was straight to the point. I was told I needed imminent corrective surgery to prevent further decline. I was horrified to hear of the graphic details, the lengthy recovery and how it could even prove fatal.

Of course 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 unexpected news falling on my young shoulders.

How I made my decision

As a child I attended Birmingham Heartlands Hospital annually 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 – literally, hours – to see the doctor, and would leave knowing nothing more than we did before. I have in all honesty learnt infinitely more as an adult, through my own research, social media and from others with muscular dystrophy.

My point here is that my parents and I had nothing to base our decision on. It’s almost twenty 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 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 for me personally. 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 then was very different compared to today, and I was very young. 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 my life could have been improved if I’d undergone surgery, two decades ago.

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 infection; 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.

– Can you relate to my story?

– Have you too turned down corrective surgical intervention?

– Have you had a spinal fusion? If so, how has your life changed as a result?

Thanks so much for reading, and please leave a comment.

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.