January: Nutrition

Welcome to January,

The month of insipid dieting adverts, Goji Berries or Joe Wick clones on Youtube. Receiving the right nutrition through a healthy balanced diet is an essential part of caring for your body. Nutrition is not only related to eating but also with the mechanical processes involved.

maxresdefaultCurrently I’m confronted with an unexpected problem with jaw contractures, which prevent me from correctly opening, chewing or closing my mouth (Temporomandibular Joint). I can barely fit my electric toothbrush into my mouth, funnily at Christmas my Mum had to firstly squash a mini Bounty chocolate with a hammer.

This jaw issue began about 8 years ago after I had my PEG feed inserted into my stomach and just receiving all my nutrients through that, however this meant I also stopped exercising my jaw through chewing.

superfood-is-bad-for-the-environmentPsychologically, the PEG feed did solve my major difficulty with food by removing the fear before mealtimes. I began to hate food as it took me 30 minutes to finish a slice of toast or a bowl of cereal for breakfast. Receiving a continuous amount of food from my feed has increased my daily productivity, mood and most of all energy levels.

However, the lack of active chewing or jaw exercises since my PEG was fitted has been detrimental to me by misaligning my bottom mandible, mouth and general facial stiffness. I wish either my nutritionist or speech and language therapist informed me about this possible risk due to jaw inactivity.

eatrightMy Care Adviser Yvonne Julien was excellent as I received a quick referral letter for a physiotherapist appointment; initially I was unsure that the physiotherapist would be capable of improving my jaw flexibility.

The physiotherapist was knowledgeable about MD; his assessment was that the majority of my stiffness was due to my bottom mandible was positioned too far forward. I was given a list of passive facial exercises: I had to open my mouth as wide as possible 3times a day, with assistance I have to push my lower jaw back into alignment with my top jaw, lightly massage my cheek or jaw muscles & chew a big ball of chewing gum.

In the future many adults with DMD may face this tricky issue, so it’s important to increase awareness on such an unforeseen difficulty. Once you have a contracture it is difficult to reverse so having access to regular neuromuscular physiotherapy support is extremely essential for managing your DMD or quality of life.

Advertisements

2017 – Beyond the Resolution

Let’s BEGIN with the ENDING of 2016

2016 felt like a conclusion to a seemingly blissful golden era with the loss of many seemingly immortal legends: from Muhammad Ali, David Bowie, George Michael, Carrie Fisher, Freddie Mercury, Peter Vaughan & (personally) Lord John Walton the Co-founder of Muscular Dystrophy UK.

10-muhammad-ali-quotes-1I’ve arrived in 2017 considering the usual conundrum: What is my New Year’s resolution? Honestly I never make one, as I’d rather improve myself everyday or dodge the guilt after breaking it due to weak willpower. Alternatively I have hopes that I think are possible or the wonderful unexpected surprises.

In 2017 the creation of fascinating new universes or re-visiting established universes is widespread throughout movies, TV series or games.

The prevalence of superhero movies is as a result of society’s consciousness, wanting to bring their own brand of justice to an evil or corrupt society. Which is mirrored in real-life events especially since Brexit, President Trump, NHS structure breakdown or terrorism. My hope for 2017 is that the solo Wonder Woman movie manages to portray her as a positive role model.

dc_rebirthIronically in 2016 both MARVEL & DC decided to destroy their universes in the Secret Wars event & DC Rebirth. Why is this important? Well similarly to the recent losses of legendary celebrities it means passing the baton onto the next generation or providing a drastic attitude change for some characters (e.g. like Dr Doom’s reformation).

55df04fa17355Most superheroes heroes now have a legacy character: from Iron-Man, Thor, Hulk, Hawkeye, Spiderman, Batman, Superman, Green Lantern to Flash all now have radically changed lives or new replacements. If you think about it, our society has been negatively altered in 2016 especially for people with a disability.

2017 looks like a resurgence of re-visiting established universes, the fascination with connecting with the past as an adult. I’m speaking about the Star Wars revitalization, Ridley Scott finally directing Alien: Covenant/Bladerunner 2049, War of the Planet of the Apes & Westworld. The fear I have is if the movies don’t live up to my expectations, like they say you should never meet your idol.

Let’s END at the BEGINNING of 2017

The Uncanny #review of 2016

Looking back over 2016, it has been a year of unexpected personal evolution even though it began similarly to 2015. I’ve witnessed the development of my confidence levels & focus resembling a secondary mutation. 2016 would not have been legendary without all my amazing friends or the wonderful new ones I’ve made. So thank you 🙂

2016 also exposed me to many wonderful new opportunities that have altered my beliefs regarding my future. I’m grateful to have worked alongside incredible organisations like Muscular Dystrophy UK, Limitless Travel, Muscle Owl & DMD Pathfinders this year.  These are some of my yearly highlights:

img_3854

  • Working at MDUK’s London HQ in April taught me that I possess employable skills & to create a good CV profile for future employment
  • MDUK‘s invitation to attend St James’s Palace to commemorate the 50th anniversary of the Duke of Edinburgh’s patronage. Having to be measured for a tuxedo was another highlight.
  • Working with the Muscle Owl team on their video content (& Peter Duffy’s infectious enthusiasm) forced me to face my fear of public speaking and also to feel proud of my experiences
  • Meeting Angus Drummond & being part of the Limitless Travel team has really changed my life, it’s given me more independence and purpose. I finally feel that I’ve reached Adulthood since attending an office Christmas party
  • Attending the Action Duchenne conference was a profound experience being in the presence of so many DMDer’s & learning from Jon Hastie & Mark Chapman from DMD Pathfinders

There was some sad news in 2016 when MDUK’s founder Lord John Walton passed away, his dedication to muscular dystrophy can never be forgotten and thank you does not really express my gratitude. – RIP Lord John Walton (16 Sept 1922 – 21 April 2016)

Due to my regular blog writing, I’ve had to improve my productivity through using accessibility equipment like dictation, on-screen keyboard or controlling my iPhone with a Switch for use during my long car journeys.

The Olympics & Paralympics dominated much of the summer with varying degrees of positive disability awareness, the issues were surrounded the C4 adverts and the use of the #hashtag-able buzz word SUPERHUMAN. Well done to #TeamGB. You cannot review 2016 without mentioning the Brexit debacle, David Cameron ruining England or Donald Trump winning the US Presidential election. I can’t imagine what the future of England or America is going to look like?

2017 will be the year where I focus on accessibility products & hopefully finding some sort of employment.

Thank you to all the awesome people who made my 2016 memorable.