Taking #FocusOnPhysio to Parliament

Muscular Dystrophy UK’s new campaign and report ‘Overstretched’ is aiming to improve Physiotherapy provisions, they held an APPG (All Party Parliamentary Group) in Parliament on 19th July to take the fight to Governmental level.

There were 21 MPs in attendance and medical professionals, Mary Glindon MP (Vice Chair of the All Party Parliamentary Group), Dr Gina Radford (Deputy Chief Medical Officer), Dr Gita Ramdharry (Specialist Neuromuscular Physiotherapist & Associate Professor of Rehabilitation Sciences), Dr Anna Mayhew (Consultant Research Physiotherapist, Newcastle University) & Dr William Van’t Hoff (Clinical Director for NHS Engagement, National Institute for Health Research, Clinical Research Trust). I was in awe of following these talented speakers but I provided a patient’s perspective to connect the audience emotionally with the broader issue.

Mary Glindon, Vivek

Me with Mary Glindon MP

In the report there are various statistics complied from members of the MDUK Trailblazers network but the stat that unfortunately stood out for me was that 60% of people are unable to access appropriate physiotherapy.

The supposed aims of physiotherapy for muscle-wasting conditions are as follows:

  • Optimize or maintain muscle function
  • Anticipate, minimize or reduce risk of secondary physical complications
  • Reduce risk of contractures and loss of movement
  • Reduce likelihood of chest infections
  • Reduce pain or discomfort

The main issue with physiotherapy is that it operates under the rehabilitation model in which any output has to either be a cure or visible improvement within a 6-week block. This model falls apart when faced with a progressive muscle-wasting disease with no chance of improving, however, appropriate physiotherapy is an important aspect of living with Muscular Dystrophy (MD).

In childhood, the developing body and the progression of the condition means that physiotherapy optimises function and minimises preventable complications like scoliosis, contractures or respiratory difficulties. Regular access to the right therapies will definitely help maintain independence for as long as possible.

This is all well and good but in reality many Community Physiotherapists have limited experience working with MD, resulting in aggressive exercises that are inappropriate or in fact damaging muscle tissue. Community Physiotherapy is often goal oriented or priority given to patients who are expected to show marked improvement. Goals for MD should be aimed at maintaining function and independence but this is not always recognised in referral criteria at community level.

With MD, it’s not like you can go to the gym and just get stronger. If you get too much exercise, the condition can go downhill. Due to my misdiagnosis I was given a vigorous physiotherapy regime and not allowed to use a wheelchair, this caused me to stop walking earlier then usual and left me with severe leg pains. It’s a balance act, so it’s important that you get the right kind of Physiotherapy in the right way.

Vivek speaking & MDUK banner

Right before my Speech

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 sit on. I then had a 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.

Respiratory Physiotherapy (RP) is also vital for MD, being proactive by having access to a cough assist machine is essential to prevent unnecessary hospital admissions or loss of life however the NHS does not understand the importance. At 18 I was an emergency admission to hospital 3 times due to severe pneumonia – since found out to be due to aspiration of food – without the wonderful help of Glenfield hospital Respiratory Physiotherapists and a cough assist machine I would not be alive today. A cough assist machine saves lives along with specially trained RPs, my friend Tom Parker died as he went to a hospital with only generally trained RPs.

In conclusion, Physiotherapy provisions for rare neuromuscular conditions (NM) are severely lacking and drastic improvements are necessary, either by up skilling Physiotherapists to specialise in NM conditions or unlocking the necessary funds for equipment.

ONWARDS & UPWARDS

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About UncannyVivek

Welcome to the Wonderful World of Vivek behind the Uncanny


Name: Vivek Gohil

Type of Muscular Dystrophy: Duchenne

Describe yourself using 3 words: Calm + Witty + Determined


Why did you choose the username UncannyVivek?

To be honest it was a simple decision: the first Comic Book I ever read was Uncanny X-Men + technically I’m also a mutant.

What instrument can you play?

I can play the Piano but had to stop at age 7 due to difficulties moving my arms/hands + muscle fatigue that usually comes with Duchenne.

What are you scared of?

I know it will sound cliché but I’m scared of the dark. At my childhood house, there was a dark cubbyhole under the stairs that I always had to run past as apparently there was a ‘monster.’ It was made worse after watching the scary kitchen scene in Jurassic Park.

What are your hobbies?

  • Reading: Sci-fi novels, Fantasy novels, Comic books
  • Gaming (whenever I can)
  • Anything related to Superheroes + Star Wars
  • Building LEGO sets
  • Netflix, Cartoons, Nature/Science Documentaries
  • Meeting Friends

What annoys you?

–  Being stuck behind people who walk slowly and suddenly stop right in front of me

–  People that lie or don’t lie convincingly enough

– People who are constantly negative or attention-seeking

What would you not want to lose due to the progression of Duchenne?

I would hate to lose the ability to use my fingers or hands, to be disconnected from communicating with the outside world through my blogs or use social media to interact with friends. However, if this does ever happen I know in time I could accept it.

What Superpower would you want to possess & why?

Telekinesis would be my ideal superpower. This would enable me to have complete independence, never encounter accessibility issues, face disability discrimination, bad public transport provisions that disabled people encounter everyday + (most importantly) to fly. DMD is only a part of Vivek & I love my life the way it is now.


What/Who is your Favourite?

Colour: Blue

Animal: Elephant

Robot: R2D2

Sci-Fi Novel(s): The Void Trilogy by Peter F. Hamilton

Fantasy Author: George R. R. Martin for the A Song of Ice and Fire series

Superhero: Batman

Supervillain: Sinestro

Comic Book series: Invincible by Robert Kirkman

3 Childhood Cartoons: Samurai Jack + Batman Beyond + X-Men Evolution

Current Cartoon series: Teenage Mutant Ninja Turtles

Favourite Ninja Turtle: Leonardo

Boxset: Breaking Bad

Ongoing TV series: Game of Thrones

Series Ending Unfinished: Dark Angel

Sitcom: Friends 

Sport: Tennis

Movie: Terminator 2: Judgement Day

Band: Coldplay

Retro Videogame: Super Mario World

PS2 Game: Spiderman 2

Xbox: Halo 2

PS3 Game: Batman: Arkham City

XBOX 360: Mass Effect trilogy

PS4 Game: The Witcher 3

Questions from @bloonstuff

What place would you like to visit?

I’ve always wanted to visit Thailand to work in an Elephant/Tiger Sanctuary + ride an elephant (the main reason).

What tattoo would you like to get?

I would not be able to choose something permanent stuck as I would quickly get bored and will start picking faults with my choice.

What is your favourite trait in yourself?

It’s a tricky question to answer without sounding arrogant but my favourite trait of myself would be my courage. Courage has given me the tools to clearly voice my emotions or feelings clearly (a recent acquisition to be honest), analyse a situation quickly and the experiences to help other people in similar situation. I used to be passive and let the negative things I observed carry on. Cultural issues have always been an obstacle in my life, but standing up to my Father + extended family was the only way that I could conquer the issue and (re)discover the voice hidden inside me.

Question from @shonalouiseblog

If you could have any animal as a pet, what would you have?

I have always wanted to own a pet Bearded Dragon, I recently bought a male bearded dragon Zeus. It’ll take a couple of weeks for the tank to arrive then he’ll be featuring in most of my pictures!

Thank you for reading + feel free to ask more Q’s in the comments below!

 

Film Review: The Fundamentals of Caring

After watching the newly released Netflix movie “The Fundamentals of Caring” I wanted to explore my positive and negative aspects of the movie from the viewpoint of someone with Duchenne MD.

The Fundamentals of Caring stars Ben (Paul Rudd), a newly licensed professional caregiver seeking his first full-time client whilst trying to escape the loss of his son. Ben’s first client as a caregiver is Trevor (Craig Roberts), an 18-year-old guy with Duchenne muscular dystrophy.

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Do I recommend this movie? It positively portrays DMD and caring in comparison to “Me Before You,” however many themes are simplified or quickly skimmed over. At certain points it can turn saccharine and focus on cliché instead of character but Ben and Trevor have a great relationship with hilarious pranks and I enjoyed watching from the caregivers perspective. RECOMMEND

The movie starts in a classroom where the fundamental requirements of a caregiver are taught to Ben using the acronym ALOHA – Ask, Listen, Observe, Help, Ask Again. This acronym simplifies the caring profession too much, looking at it from a cold detached view without any empathy or compassion. If you cannot build an emotional connection or become part of your client’s whole life then maybe you wouldn’t have a long lasting career. The film implies that Trevor has had a high turnover of carers over the years so he cynically expects Ben to be temporary so he doesn’t get emotionally attached. It illustrates the problems of care agencies many disabled people face, high turnover, repetitive training and life intrusion. The information provided to Ben about DMD again highlights the terminal nature of the illness, saying Trevor has 7 to 10 years left and would be lucky to reach 30. This kind of explanation is damaging to positive awareness of DMD and perpetuates the stereotype that disabled people need to be pitied. Life expectancy isn’t as important as quality of life (in my opinion).

The Fundamentals of Caring tries to demonstrate how a Carer/patient relationship can naturally grow over time (albeit fairly quickly) and as Ben breaks Trevor out of his regular routine and to have courage to increase quality of life by going on a road-trip. The movie does have a habit of falling into the lonely disabled person stereotype who needs more then just physical help. However, throughout the film we see a reciprocal relationship develop, helping each other emotionally, without becoming a “teachable” moment. Ben talking about his son’s death illustrates this, “You thought you came here to fix me? You can’t fix me” an interesting flip on the ableist stereotype that disability needs to be ‘fixed.’

Now I want to explore the portrayal of Trevor by Craig Roberts, using an able-bodied actor instead of someone with DMD and was it realistic?

Trevor uses/needs realistic care (similar to me), CPAP at night, exercise routine, cough assist machine, medication, contractures in fingers, clearing secretions, disabled vehicle but bizarrely no hoist. During the road-trip they encounter accessibility issues as the giant cow ‘Rufus’ was on the second floor but Trevor was carried upstairs. Hoists are an important item in DMD care because lifting can be a backbreaking health-and-safety nightmare for caregivers. However in certain scenes Trevor seems overly able, sitting unsupported, lifts arms to air quote, has no head support especially in the car or choosing to not use CPAP at night. He is portrayed as a witty cynical teenager, without the usual depression that usually occurs in this role. Negatively Trevor doesn’t seem to have a life, does he go to college? Does he have friends? Disabled people can have busy social lives or gainful employment, which isn’t featured at all. Trevor is stuck at home with an over protective Mother so Ben encourages an apparently “impossible” road-trip due to the amount of care needed. Strangely, if the road-trip impossible why did his Mum agree to it but not come along?

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Queue in Selena Gomez as Dot the cliché “love interest”, a rebellious teenage hitchhiker there as a plot device to show Trevor’s character development or independence. Or as a way to clear up stereotypical questions viewers may have on disability like: Does it hurt? Does your brain work? Does your penis work? The movie acknowledges the subject of sex/relationships and disability, but the first date anxiety or nerves when talking to a girl are similar with any teenage boy. Shows DMD lives come with ‘normal’ ups and downs not just related to disability and that we are able to find love too.

Ending with Ben leaving his caregiver role but staying as a friend beautifully illustrates the relationship that can be formed with the right Carer, someone who assists you to carry on living as independent a life as possible.

I would RECOMMEND this movie but bear in mind many interesting themes around disability are not developed enough and slightly fragmented.