International Day of People with Disabilities 2022

I have only just found out about this, but today is International Day of People with Disabilities 2022. This first began in 1992, so it is something of a surprise that I hadn’t heard of it. The theme this year is, according to it’s website, “Transformative solutions for inclusive development: the role of innovation in fuelling an accessible and equitable world“. This looks at innovation, technology and good practices to reduce inequality and further inclusion in society for those with disabilities.

I have recently been working on some research which shows that individuals with Duchenne Muscular Dystrophy such as myself, do struggle with inclusion and in finding employment, so the idea of exploring how new innovation and technology can help people with disabilities is a very good one.

Assistive technology helps me immensely in my day to day living, so even further development of such solutions can only be positive for creating a more equal society.

Community Dentist – UK

This post is about getting access to a dentist. If you suffer from a neuromuscular condition and have trouble getting to a dentist, it is possible to see one in the community. After I had a traumatic experience at the dentist, I did not go again for a long time, around 10 years all told. My family and I were not given information about the community dentist so I wanted to make sure that people know that the service is available from the NHS.

Over the years, we did ask a number of times about what to do with regard to accessing a dentist but we had limited response from health professionals that dealt with me. With hindsight it is easy to say that we should have pushed harder to find out what we could have done, but as often happens as a disabled person you can be made to feel like you are demanding too much or do not want to make a fuss. As I am reliant on other people to brush my teeth, it was worrying not being seen by a dentist to monitor my hygiene.

It is possible to go to a specialist dental hospital where people in wheelchairs can be accommodated, but in my case it was simply a house call. A dentist and an assistant came in, checked my teeth and were finished in about 15 minutes. They prescribed a stronger toothpaste for me to use to make sure my teeth remain in good health. I feel that I should have been seen sooner and had this information sooner but I felt forgotten by the dentist I used to see.

Blood gasses tests

An important part of care for people with Duchenne involves monitoring blood gas levels, particularly oxygen and carbon dioxide. I had mine tested recently and I thought it would be useful to talk about the process. Blood is taken from my earlobe from a small cut made on it, and placed in a small machine that analyses the sample. This can be a slightly painful experience and does leave a bit of bruising but nothing serious. The machine analyses the level of Carbon dioxide in the blood. The test also determines the oxygen saturation and pH of the blood.

CO2 can build up in the blood as a result of weakened respiratory action so must be monitored to avoid side effects. These include headaches and drowsiness, but could develop into more serious problems if not treated and kept stable. My CO2 levels are kept a low by my bi-pap machines which I use regularly, more and more so over time. My recent test showed an increase in CO2, so the pressure of my bi-pap machines was increased to compensate and has fortunately come back down since.

Commonwealth Games 2022

This years Games in Birmingham has been very positive for disability and para-sports. The event has again integrated para-sports into the competition and tallied the medals into a single table. It makes history as the largest para-sports programme with most number of para-sports medals up for grabs. This is a great step for raising the profile of para-athletics and demonstrates that disabled athletes are just as significant in competition. This Games has a record 42 para events, including powerlifting and 3X3 basketball, up significantly from previous meets which displays the growth and acceptance of disability sport.

The added exposure of showing disabled athletes competing is a positive for disability in society more generally. It has been pleasant to see disabled athletes performing alongside fellow able-bodied competitors in front of full stadiums and bigger crowds, rather than a separate competition, giving a more inclusive feel. Integrating the events has felt completely natural and has provided excellent stories such as that of Micky Yule. Hopefully, the positivity created by the Games will continue to drive change and highlight disability on a global scale.

Routines

I have quite a rigorous daily routine which has both its benefits and its downsides. As a profoundly disabled person, your daily routine makes life easier and allows you to make sure that you are managing things like your health properly. For example, I take my tablets when I get up and I use my cough assist machine three times a day. It allows me to plan around my day and have a nice structure in place.

However, my routine can make me quite inflexible some times and this may not always be obvious to other people. It can take a long time to get out of bed, and to get ready, and things like when I use the toilet can make my routine quite rigid. This can mean a lack of spontaneity when it comes to going out. It also can make appointments difficult to arrange in the early mornings as an example.

It does feel like there can be a lack of understanding when it comes to this for people with disabilities. I have found this recently with appointments, sometimes it is difficult if an appointment is changed without warning. A couple of weeks ago, one of my appointments was made two hours later with very little notice, and this was very disruptive.

Bloating and stomach pain

This can be a problem for me and I have had some experiences of really painful cramping and trapped wind, potentially from sitting down for most of the day but we have never found a definitive reason as to the cause. It does not happen often, but when it does it has knocked me out of kilter for a couple of days.

The first time I had severe bloating it caused lots of pain, my stomach was distended and hard, I couldn’t eat and the gp even suggested hospitalisation because of it. Fortunately, the problem went away on its own but it is important to manage as the problem can be very acute. We have since found out and come up with strategies to reduce the problem.

Lying down and using a hot water bottle were two things that have provided some relief when an episode occurs. Taking a medicine called Mebeverine has proved to be very effective for me on the last two episodes of bloating. It was recommended and prescribed by my gp so it may be worth asking about it if you have problems. Also, I did alter my diet to have more beans and legumes but it is difficult to know how effective it is.

Smartphones and accessibility

Using my smartphone on the weekend got me thinking about their accessibility for people with disabilities. It got me thinking how difficult it would be to use my phone without technologies like bluetooth. I have a bluetooth module connected to my wheelchair that allows me to connect the joystick to the phone. This is a great thing for me as it lets me use all of the features as intended which increases my independence. Without options for easier access, disabled people could be unable to benefit from our world of great technology.

With the newest iterations of phones, it seems like accessibility is improving for people who have difficulties in using their arms or hands. The standard accessibility features have increased over time with features such as AssistiveTouch or TalkBack. However, it still feels like more is needed to improve the accessibility of smartphones to everyone, with specific apps made for people with mobility issues. For example, the app I currently use is now unavailable so if I upgrade models I would have to look for an alternative.

I would love to see many more apps created that aim specifically to help people who struggle to use phones in the usual way. But it isn’t just apps that can be prohibitive. The cost of arms, clamps and smartphone holders can be very expensive if you want to attach your phone to a wheelchair in a safe and secure fashion. Some of the accessories can cost hundreds of pounds which will be a limiting factor for people. I currently have a small phone mount that sits on my desk but also a flexible arm from Manfrotto that can attach to my wheelchair for going out.

There are a number of websites that can be useful such as Manfrotto, aacmounts, rammount or merushop, and they sell various mounting options that can help create the best set-up for your device.

Dealing with anxiety

I have been feeling increased levels of anxiousness recently, probably increased over the last two year by problems like the pandemic and my own health. Being concerned about my health and possible difficulties in the future has brought with it some worry and fear about the future. To counteract these negative feelings, I have been using mindfulness for the first time. I have been trying meditation to help turn negative thoughts and feelings around. It has only been three weeks so far, but I do think it can definitely help me going forward. Accepting that negative thoughts are just thoughts and nothing more, and having a sense of calm and letting go has been good for me. Short periods of meditation also don’t take too long and still provide the benefits which is another good thing.

Welsh cross-party meeting on Muscular Dystrophy

I recently attended a Senedd meeting on Zoom about Muscular Dystrophy, which focused on how Covid had affected people with neuromuscular and muscle wasting conditions in Wales with regard to their medical care. It was attended by politicians, doctors, patients and other clinicians who discussed various issues that have affected the levels of treatment afforded to those with muscle wasting conditions both throughout the pandemic and prior to it. A prominent politician present was Member of the Senedd Rhun ap Iorwerth, who intended to help lobby Welsh government for more action.

Those present spoke of the negative impact of Covid shielding on the care of neuromuscular patients, which caused lack of access to care, disruption to services and delays in receiving treatment. Over the pandemic, Muscular Dystrophy UK carried out a survey of people with muscle wasting conditions across Britain which showed the problems caused by the pandemic. However, some of the problems highlighted were present even before 2020. These included lack of funding, not enough specialist staff and a reliance on the goodwill and efforts of individual health staff who end up burnt out and leave their roles. The pandemic meant that people with muscle wasting conditions missed out on appointments and treatment, and were left isolated from society whilst shielding. I was interested to hear the thoughts and feelings of other people with forms of Muscular Dystrophy, and those in charge of their care as many of the things spoken about are issues that I have dealt with personally and have seen for myself. As such, it was good to have confirmation that it is a common experience and that things do need to be done.

In the meeting, Muscular Dystrophy UK went through the findings of this survey and discussed five priority areas that were needed to ensure care for those with neuromuscular conditions continues and improves going forward.

1. more funding – the allocation of more money and more consistent funding directly for the care of neuromuscular patients

2. creation of a network manager role – this individual would help to push through directives and implement change with regard to patient care and the Wales Neuromuscular Network

3. more specialist staff – particularly psychology and mental health services, but also neuromuscular physiotherapists, nurses and neurologists etc

4. easy access to new market drugs – providing better and timelier introduction of specialist drugs to those with neuromuscular conditions

5. more staff in the community – introduce more trained neuromuscular staff who can work in the community to bridge gaps within the system.

The importance of improving the services for people with neuromuscular conditions cannot be overstated. People with muscle wasting conditions have complex needs which require complex long-term care from multi-disciplinary care teams. Not having adequate care can reduce the quality of life of those with neuromuscular conditions and potentially reduce life-expectancy, so making sure improvements are made to care services is vital. Increasing funding and awareness are therefore paramount to making meaningful change in this area.