Leicester Physiotherapy Review

DISCLAIMER: All views expressed are entirely my own

Physiotherapy is a major part of living with Duchenne MD from childhood to adulthood. With DMD, it’s not like you can go to the gym and just get stronger. It’s a balance act, so it’s important that you get the right kind of Physiotherapy in the right way. The needs of people with DMD do not decrease but increases over time.

Physiotherapy is concerned with enabling us to reach our maximum physical potential through: exercises to minimise the development of contractures, splinting to maintain range-of-movement, providing proper postural support to prevent severe scoliosis & respiratory physiotherapy.

Preventive physiotherapy is crucial at an early age not just from the medical aspect but also from the quality of life aspect. I encourage taking responsibility of your DMD care, building a relationship with your consultants. Yes you may have some tough decisions to make in the future progress of your condition but the medical professionals are giving valuable expertise. I’ve noticed that when DMD boys start showing signs of needing respiratory support through CPAP ventilation they are reluctant to use it, I hated having to use it but it improves energy levels and quality of life.

Leicester has quite poor physiotherapy support in adult services. When I was growing up I received regular physiotherapy & hydrotherapy at my special-needs school by specialist neuromuscular physiotherapists. So before I reached adult services the school Physiotherapist Sheila Hardy made sure I had a back operation to correct my scoliosis and an Achilles tendon release operation. With her expertise I can now reap the rewards of a straight back and correct posture.

However my experience with adult services has been ad hoc, the first session of my 6-week block I discovered the physiotherapy department did not have a hoist or a comfortable couch for me to lay on. I then had community physiotherapy visit my house but it was just to teach my Mum stretches to do regularly, with no follow-up appointments as the department were short staffed.

Since then I have actively searched for physiotherapy so I was referred to NMC Coventry, it was brilliant to access a trained physiotherapist and osteopath that I could discuss specific issues I have like hand contractures. These exercises are still part of my current morning physiotherapy exercise regime, with tweaks when necessary.

Positively, Leicester has an excellent respiratory physiotherapy department & consultants. They are proactive in their support by accessing cough assist machines to prevent unnecessary hospital admissions. At 18 I was an emergency admission to hospital 3 times due to severe pneumonia – without the wonderful help of Glenfield hospital Respiratory Physiotherapists and a cough assist machine I would not be alive today. Unfortunately, the senior Physiotherapist Jo has left so the junior Physiotherapists have taken over but the support hasn’t seemed to be effected.

Finally, physiotherapy is necessary from Day 1 in order to life with DMD in the best way possible.

ONWARDS and UPWARDS!

 

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Who is Superhuman? Channel 4’s Paralympic Adverts

 

DISCLAIMER: The opinions expressed in this blog are entirely my own

As an individual with a disability I feel it’s my duty to share my perspective on the Channel 4 (C4) Rio Paralympic adverts and ‘Yes, I Can’ campaign.

I initially decided not to blog about the C4 adverts but after the bombardment of watching them 100s of times it was necessary for me to express myself.

The Paralympic adverts and series of short videos focusing on various GB Paralympian’s or disabled people featured in the advert on the Channel 4 website revolving around the #hashtag-able buzz word SUPERHUMAN. After methodically inspecting all the short videos, here are the problems I find in the ‘Yes, I Can’ campaign.

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The word Superhuman is unrealistic and suggests that C4 presents disability through the skewed eyes of non-disabled people. In front of the camera there are only people with disabilities but how many were behind the camera editing or producing? Maybe then the adverts could have communicated disability awareness more effectively. Instead of SUPERHUMAN C4 should use the word PARALYMPIAN to highlight just how good these Paralympic athletes are and really raise the profile of what’s achievable.

All of us collectively… has risen above so much challenge. That’s not disability or handicap, that’s Superhuman

– Alvin Law (Singer in Adverts)

The version of disability displayed is an extremely idealised or naïve one. How can overcoming a challenge make you superhuman? Having a disability does make life more difficult but personally it’s made me much more mentally strong, however many disabled people do not want emotional validation or a disability misconception to persist. The athletes & disabled people are living life like everybody else, without needing pity or the patronising ‘Great for them, they’re doing something with their lives.’

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The word disability got taken out of my vocabulary when I was very young”

– Jody Cundy (Cyclist)

The black-and-white view of either having a disability or no disability is not that simple, just saying ‘Yes, I Can’ or removing a word from your world. This doesn’t change your condition physically but mentally it could provide some motivation however there is a difference between having willpower to achieve your dreams or blind denial.

No matter what kind of disability you have, when there’s a will, there’s a way

– Rachel Starritt (Blind Pianist)

Rachel expresses herself in a much more natural way or without the naiveté, there are certain things that I could do if I put my mind or willpower to it but it wouldn’t include anything physical because it would be impossible. Realistic living is important, setting obtainable goals is part of life and happiness.

I think I’ve just got a disability but I’m very able… but you’ve just got to be positive and find something that you believe in strongly, that you want to achieve” 

– David Weir (Wheelchair Racing)

This mindset is brilliant inspiration for everybody and ultimately isn’t that what sport is about? The Paralympics is a platform to change perceptions of disability all over the world so getting the advert right is crucial.

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My last blog was about Ableism in society but after C4’s adverts I’ve come up with the concept of DISABLEISM. It’s the idea that disabled people are better than able-bodied people. Bear with me here, describing the Paralympic athletes as SUPERHUMAN creates an unnecessary division as every athlete should be treated equally whether Paralympian or Olympian.

The assumption by Channel 4 (& majority of the public) about disabled people is that we need a self-esteem boost by praise or a certain word. Trust me, disabled people are not fragile or weak. The word disabled is just a describing word that doesn’t describe the numerous differences in conditions. Words such as disabled should not halt the amount of words that can describe yourself with but it does usually become your general category, completely ignoring you as an individual with a personality or humour.

Finally, I want to end on a positive note and welcome the efforts Channel 4 have done to improve disability awareness or even having disabled journalists in non-disability related programming.

Good Luck #TeamGB