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Regular ‘Maintenance’ physiotherapy for Duchenne

I am of the opinion that having regular physiotherapy is an important part of managing muscle-wasting conditions like Duchenne. I have had physiotherapy for a number of years and I think it has done me a lot of good. I am a firm believer in its usefulness for Duchenne patients to maintain the condition of limbs, joints, and muscles. I have had physio regularly between the ages of 11 and 24.

It was provided especially when I was under paediatric care throughout primary and secondary school, and took place every week or so. When I was younger, physiotherapy wasn’t necessarily my main concern and it did seem like a drag. In primary school for example, I remember occasionally trying to avoid having physio by hiding with my friends or pretending I had forgotten what day it was.

But, I came to realise how important it was to keep me feeling comfortable in my wheelchair and keeping me flexible enough to be able continue to do everyday activities such as putting on clothes easily. However, the amount of physio I have had has decreased over time, and now I moved completely into adult care services I no longer have any at all. It was explained to me that the support for regular maintenance physio no longer exists. You are still able to see a physiotherapist if you have specific problems, but for the most part you have to do it yourself. Although this is manageable, it would be great to see more professional support for adults with Duchenne.

This again seems to come down to funding and availability. In my experience, child services are well funded and prioritised (and are excellent) whereas adult services drop off almost completely. It is baffling that services fall so dramatically for adults considering that conditions like Duchenne progressively worsen and need more help as you get older.

I have read articles on a number of websites that discuss the importance and benefits of physiotherapy for muscular dystrophy patients to prevent contractures or reduce pain. A quick search also reveals a lack of physio services for neuromuscular conditions across Britain. Having more services for adults with muscle-wasting conditions makes a lot of sense to me. Physiotherapists are very important in this regard, and I think that greater support for and also access to these services is necessary.

An unexpected holiday

At the end of September, I went on a short holiday with my family to a cottage close to where we live. Though it may seem unremarkable, it was probably the first time in 10 years we have been away from our house for an entire week, mainly due to the difficulties of going away as a disabled person. The holiday was unexpected in that we only found the location by chance. We had been looking for somewhere to stay which met all of our requirements for some time (mainly accessibility), but my sister happened to come across a place called Bramwood holiday home after some research on the internet. Despite not being very far from where I live, the change of scenery and easy access made it a great place for us all and we really enjoyed our time away.

Holidaying is definitely not an easy thing to do when you have complex needs, but the place where we stayed was fully wheelchair accessible and had a bedroom kitted out to accommodate a severely disabled person. The room I stayed in had a ceiling track hoist through into the bathroom, a profiling bed and plenty of space to move throughout it in my wheelchair. The rest of the cottage also had plenty of room to move around in and there was ramped access around the whole place. An added complication of going away is that we had to take all of my equipment like NIV and cough assist etc., but there were plenty of points to plug things in.

I found the overall experience to be excellent and I felt very comfortable within the environment. It was nice to be able to go somewhere where there was no fuss about bringing your own mobile hoist, or not having enough space, or worrying about whether it will be possible to use the toilet easily. It would be fantastic if more places were created which looked to accommodate and cater for all people with different disabilities. There are so many people who want to travel to different places but a lack of facilities is preventing them from doing so. More inclusivity and availability cannot be a negative, so addressing this problem would therefore be in everyone’s interest including disabled people, families and tourism industries.

 

A whole year of blogging

Unbelievably, it has been a whole year since I started writing this blog. It is amazing to think how quickly time goes, especially as I became 25 this year. I have very much enjoyed writing and posting about various things over the year and I hope some of the posts have been useful and provided some interesting points of view. I am so pleased with the number of views I have received so far and I am eager to increase that. The blog has nearly reached 1,000 views and my aim is to keep increasing this as much as possible.

I want to thank everyone who has taken the time to read any of my posts and to those who have liked the things I have written. I look forward to writing more about issues related to disability and continuing the discussion about Duchenne Muscular Dystrophy.

Adaptive Controller – Initial thoughts

About two weeks ago I received my new Microsoft Adaptive Controller for my birthday and I am pleased to say that it is a very good product so far. I have only played one game with it as of yet but it really has improved my gameplay experience. The controller is compatible with pc games so I fired up Star Wars Battlefront 2 to see how my setup would work, and it was great.

adaptive controller 1

Using the Adaptive controller alongside my mouse and headset gave me extra buttons to press allowing me to speed up my responses to enemies in game. I normally use right-click on my mouse to move forward, so to aim I connected a clicker into the left trigger input on the controller which gave me an easier way to do so, quicker than using voice controls and saying ‘aim’ into the microphone. You might not think it much difference but it definitely helped me zoom in faster. I was also using another clicker for right trigger as well in my left hand which produced a similar result, faster shooting resulting in more points.

adaptive controller 2

At first it was slightly confusing for me to get to grips with using so many different inputs at once (voice control, mouse clicks and controller buttons) but after 3 games I was adjusted to the additions and surprisingly was scoring more points and kills. Being more competitive definitely feels more fun as normally I’m can be just a little slower in reacting.

I am going to enjoy testing it further and pushing my limits on different games too. I am unsure if it will be compatible with all of my pc games but I imagine any game where you can use a controller will work. Adding more buttons and arranging them in good positions is my next challenge, but so far so good. Overall, I think it is a good addition to a gaming setup and hopefully more companies follow the lead in giving disabled gamers greater access to games.

Chest supports

This post is about having and using a chest support when sitting in a wheelchair. When I sit in my wheelchair I need to have a support across my chest to stop me falling forward because of limited trunk control. I am not very stable when sitting so the strap holds me in place and gives me extra support. This is totally normal to me but I have not always had to wear a chest support.

The first time I was introduced to one was in secondary school and during that time I was completely against even trying it. The support was more akin to a racing car harness seat-belt that goes over your shoulders and clips on your chest but with a zip at the front. In school, I had much better torso control when sitting down and I would also lean down to the desks to write in my books, but the harness prevented me from moving forward at all.

At the time, it felt too restrictive and as a fiercely independent person it just seemed like it would limit my abilities. I also worried about what it would look like and what other kids might think, and it was enough to completely put me off chest supports for a while at least. I think I tried it for about 5 minutes and said ‘this isn’t going to work’. Whether it could have improved my posture or delayed my scoliosis who is to say, but as a younger person it just did not seem or feel in my interest.

Now I am older, I wear an elastic chest strap all the time in my chair and have been doing so for about 5 years now. Having an extra support is definitely a useful thing when it is needed. I see it as a positive thing for me even rather than a negative, even though it was initially something I was worried about. It holds me up which keeps me comfortable, maintains my sitting position and allows me to better use my arms for driving or using a mouse. Also, it is not completely rigid so I still retain some movement.

Adapted Controller

There are now many types of controller and methods of adapting controllers to help disabled gamers. I have a Mad Catz Xbox controller which I bought a few years ago after I had a home visit from the charity Special Effect. Afterwards, we concluded that it was a good option because you could swap the analogue sticks around to different locations and it was compatible with pc as well. In addition to the controller, I have two micro-switches attached to be able to use the trigger buttons which work using various pieces of software like cronusmax. Micro-switches and buttons are very useful for improving your gaming experience as they can be placed within easy reach so give you a more comfortable button layout. With Duchenne, it becomes too difficult to properly hold a controller, so anywhere a button can be adjusted or replaced with something easier to press makes your response quicker and your game better. How the controller is positioned is also a factor in adaptations. I use a clamp and a flexible arm to attach the controller to my wheelchair in a comfortable and easy to reach place just in front of my hands. Below is a picture of me set up with the controller.

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Furthermore, I am looking forward to trying out the new adaptive controller from Microsoft to see how useful it could be. It definitely looks like it has great potential to make gaming easier by creating a sort of hub for all the different controller inputs like buttons and triggers. It is good to see disabled gamers being considered and catered to more and more with new technology by companies and developers. There are now many emulators, button mappers and controller types to choose from to help disabled gamers, which is a very positive thing. Without these options, I would not be able to enjoy many of the games I love, and by providing these methods, game developers are improving the inclusiveness of gaming.

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VoiceAttack software

Where has this been all my life? I recently stumbled across this piece of software while looking for a new mouse. I went onto a website and saw someone using VoiceAttack to help them play some games, so I thought I’d give it a go myself. I would definitely recommend buying it as it is easy to use, requires very little training, and cost less than £10. VoiceAttack allows you to use voice and other actions to input commands. Using a microphone, for example, you can create a voice command to press a button or perform an action in game. I have used other similar software before for my console but not to play pc games, and VoiceAttack is a really great way to enhance your gaming experience. So far I have only played one game (Star Wars Battlefront 2) with VoiceAttack enabled, but it made it so much more fun. Rather than just using mouse clicks to move and fire, which is my normal method, I can use powerups, crouch and jump just by saying ‘jump’ or ‘aim’ for example. You can also create a number of profiles, which can be tailored for each game you play and changed very easily.

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Gaming

Gaming is something that I very much enjoy doing, both on pc and console. A lot of games are not the most user friendly for people with Duchenne given the lack of strength in our arms and hands, but increasingly disabled gamers are being considered by developers. There are now lots of other ways to improve your experience, such as with micro switches, adapted controllers, and voice commands, a number of which I have only just learned about. In this section I want to talk about games I like and the various methods to improve gaming experiences for disabled people.

 

Accessible Toilets Revisited

Last week, I visited a ‘changing places’ toilet which made me want to write about accessible toilets again. The only other time I have been to one was in a hospital, so this was the first time I have been to one in more usual circumstances. The experience was largely positive even though it was just to see what the facilities were like inside. It had everything you would hope for as a wheelchair user, a wider door, lots of space, a ceiling track hoist, changing bench, and all the other usual features you would expect in a toilet. Other than struggling to find the room and not having a key with me, which meant a lengthy wait and a slightly irritable worker, it was easy and meant I could use it if I needed to.

The importance of these toilets should not be understated as they open up a huge number of possibilities when it comes to leaving the house. It allows disabled people much more freedom when going out because they are no longer restricted by how long they can wait to go to the toilet. Usually, I have to go back home if I need the toilet which means cutting short journeys or carefully planning where I go just to avoid that situation. Removing such a big restriction allows people in wheelchairs or with other disabilities to take part in what are considered normal day to day things much more freely.

There are just over 1,000 ‘changing places’ toilets in Britain which is a great improvement over the last 10 years but more still needs to be done, as an estimated 250,000 people need them and could benefit from them. Recently, there have been some cases in the news about providing more appropriate changing spaces for disabled people which has increased the profile of this issue and led to calls to install more across the country. This is a question of fairness and equality, and also about the dignity of disabled people. Despite certain laws being already in place, the provision of adequate facilities for the disabled remains pretty woeful. The Changing Places Consortium has done excellent work on this and continues to do so, so do check out their website for more information.

Finally, if you have a disability remember to ask for a RADAR key from your local authorities to give you access to a large number of accessible toilets in Britain. This information does not seem to be spread too widely so I wanted you to know if you didn’t know about it already.

Links:

http://changing-places.org

https://bbc.co.uk/news/uk-england-essex-42703081

https://bbc.co.uk/news/education-44210683