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Universal Credit – My experience

Recently, I started claiming for the Universal Credit benefits. Applying for Universal Credit was quite a saga for me and my family, and I want to share my thoughts and go through some of the parts of the process. The application can be difficult to navigate in places and there are several obstacles to overcome as someone with Duchenne before you can receive UC benefits. It took nine weeks from the time I applied to when I received my first payment. Fortunately, I was not in a situation where I desperately needed the money but this could certainly be a problem for other people if they had to pay for carers or other necessities.

In order to begin claiming you need to create an account. This seems straight forward, but I encountered an issue at the very beginning with proving my identity. I needed three items and there were limited choices of documents to use as proof on the UC website. I do not have a driver’s license or my own mobile phone contract for example, so someone had to come to my house in order to prove who I was. To further complicate matters, my father is authorised to act as my appointee (to help me with things like signing documents) so we also needed to prove this too.

After setting up an account, there are several forms to fill in and documents to send in order to get the ball rolling. One problem with the website is there is nowhere to select what specific benefits you are applying for which seems to unnecessarily complicate the claims process. Once I began the claim, I needed proof of my disability. It was necessary to provide a note from a doctor to prove what medical condition is preventing you from working. I then had to fill in the ‘work capability assessment’ form, a very long form detailing your everyday activities and what you can and cannot do, within a month.

Despite already going through the process for Personal Independence Payments, which entailed filling in a very similar form about day to day living, and having qualified for the higher rate, there is no way to show that my disability has already been verified by the Department of Work and Pensions. As Duchenne does not improve and has no ‘cure’ currently, it should not need to be assessed twice or more. Therefore, I think it would be good if the DWP could check your history and check medical conditions before asking for the same documentation multiple times.

I had to complete an interview over the phone as well to go through a further assessment. Completing the forms and sending the doctor’s note before this interview turned out to be very useful as I avoided having to repeat certain answers about how you are disabled and what problems you have. At the end you agree on certain commitments such as attending medical appointments, and then I began receiving payments.

Sometimes there is a need for a face to face interview, but my answers on the assessment form were sufficient to show that my condition qualifies for the benefit, meaning I was placed into the ‘limited capability to work’ group without having to be seen.

Hopefully this post gives people a better idea of the process. Please leave a comment if you liked it.

Using Mouth Piece Ventilation (MPV) – Non-Invasive Ventilation

I have been trying out MPV over the last week and I want to share my initial impressions.

Firstly, I should explain my usual use of ventilation during the day. Normally, I use a face mask connected to my NIV machine during the day when I need a bit of help with breathing. This is around 2 to 3 hours per day, mostly after meals when I feel a bit full and need a boost.

With MPV, I’m using a small straw to take in air instead. When I suck the straw, it activates the machine which pushes in more air and gives me a bigger breath. The small size of the straw helps to increase the pressure of the air going in, increasing the volume to give me a bigger breath. The NHS has provided me a Philips Respironics Trilogy, which is quite a new product.

So far, I have found MPV to be very good at giving me deeper breaths. It works better than the face mask even though it takes a little more effort to activate the NIV. It feels that I get just as much relief and comfort from the straw, and I have been able to adapt to using a mouth-piece very easily. Not having to wear a face mask is definitely a plus because I can keep talking without sounding muffled or quiet. Furthermore, it also made a positive impact in terms of my breathing. I had a blood gases test after four days using the MPV which showed a decrease in CO2 retention and very high oxygen saturation.

Additionally, there is an option to attach the machine to my wheelchair so it would be portable and I could get the benefits of the NIV when going out and about. Hopefully, there will be a practical solution because I think it would be great to have.

Assistive Tech & Environmental Controls – Possum

Assistive technology and environmental control systems help disabled people to use appliances within their homes. I have an environmental control system from a company called Possum, which provides various pieces of assistive technology. I was referred to Possum by an occupational therapist with the NHS, and the company came out to install a system. I have a Vivo which is akin to a smart speaker. It performs similar functions to smart speakers but it works via infrared rather than through the internet, and with a micro button (a clicker in my case) which is connected directly to the Vivo or to a wireless receiver box.

The Vivo is very useful as I can use a single button to perform multiple tasks at home fully independently. I can turn on lights, use the radio, answer an intercom, and phone people. It also allows me to call for assistance and help when I need it. Furthermore, it can be programmed based on your needs such as controlling a television or even opening curtains, or your front door should you want to get the tech installed. In addition to the Vivo, I have a hand-held pager as another way to communicate with my parents as I can ring it through the Vivo system.

Possum have been very helpful when it comes to support, and they come and service the product each year and deal with any problems. I have had it for about 2 years and I would really recommend checking it out if you are interested. It definitely gives me more independence and it is very simple to operate and maintain.

My thoughts on Battlefield V (BFV)

My thoughts on Battlefield V (BFV)

If you have been on the internet recently, you will have seen the controversy surrounding the release of Battlefield 5. Despite a large amount of negative publicity and some interesting responses from developers, I think that in general BFV is a decent game and I definitely enjoy playing it. There are plenty of good points to the game but there are also a lot of problems that often leave me frustrated.

I play BFV with my mouse alongside VoiceAttack which gives me the ability to use most commands if a little slower at times.

Good

Setting – The setting of WW2 is always been interesting to me (even if not completely accurate in BF5). I have studied it a lot and its depiction in games is definitely cool. Despite some of the strange aesthetics, the battles do have a sort of epic feel to them. It would be nice to get more maps and theatres but hopefully those will get added in time.

Guns – The guns are nice. It’s great to see more of the British guns in a WW2 game like the Bren gun, and obviously the classic German weapons (mp40, stg44 etc.) have a good feel. The sounds are nice too but I am definitely missing some of the iconic US guns. No Garand in a WW2 game?

Squad system – I quite like the squad system, I haven’t had a problem with it yet. I like giving the orders occasionally, and calling in a V1 was cool and it works consistently for me.

Bad

Quick deaths – You die so quickly. I don’t play Battlefield games at a fast pace, I try to play methodically but too much of this game is run forward, die, run forward, die, rinse repeat. This cycle can get tedious very quickly I sometimes I find myself thinking this is not fun at all.

Close-range snipes – Being one-shot from a sniper from 2 feet away is one of my biggest problems but maybe this is just me not being very good, but I feel if I am firing at them I shouldn’t be popped instantly from that close.

Maps – there needs to be some more maps because I think some are terrible, especially if you get some of the imbalanced matchmaking that can occur. Also, some Grand Operations maps feel ridiculously hard to attack and win like Halfaya or Twisted Steel.

Long loading times – the time it takes to get back to the main menu is too long. It takes longer to leave a game than to join one and a two minute black screen to back out of a game is just ridiculous and needs sorting out.

Hard to spot enemies – It can be difficult to spot or even see some players. I have a hard time spotting players and it feels bad when they suddenly kill you from somewhere I should have been able to see them.

Overall, I do like the game and hopefully it will keep getting improved and having more content added for free. There are many more points to talk about beyond the ones I have gone through such as the buggy bipod but I will leave it here for now.

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.