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.

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.

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.

Attending hospital appointments in Covid times

I went for an in-person hospital appointment a couple of weeks back for the first time in about 18 months. It was a slightly strange experience after spending such a long time shielding and staying at home because of Covid, and it went without a hitch. It was a cardiology appointment which I was glad to have because I had been feeling some anxiety about my heart rate and having not been seen face to face for an extended period. I was a bit apprehensive going into a hospital but it was no problem at all. I wore a mask, followed the one-way system and the place was very quiet so I felt at ease. I felt only one moment of slight unease when five people entered the tiny room to look at my echo scan but that was still okay. All of the tests were fine and I was reassured by chatting with the consultant and the nurses.

Despite not going to a hospital, I have still been attending virtual appointments over the last two years and seeing respiratory nurses and others at home occasionally. Having telephone consultations and video calls have been very useful during the pandemic for people with neuromuscular and muscle wasting conditions to access some services but face to face meetings remain vitally important when it comes to medical care. A recent report undertaken by Muscular Dystrophy UK (linked below) has highlighted this point, as difficulty in getting appointments has been shown to be detrimental to the physical and mental health of people with neuromuscular disabilities.

https://www.musculardystrophyuk.org/static/s3fs-public/2021-11/POL14%20-%20WalesVersion-Impact%20of%20COVID%20report.v4.pdf?VersionId=5OjOr0ezmTJQ3AEL8C7xVdn725MAojfG

Importance of comfortable seating

Making sure that your wheelchair cushion is comfortable and supportive is very important, especially when you sit for most hours of the day. Having the correct seating is good for my posture and balance, but I can be thrown out of position by very small alterations to my seat. Often when I have had discomfort it has been related back to the seat and how supported I am feeling. When the gel-pack my cushion leaked recently, I had to have a new one and it changed my height in the chair. This had knock-on effects onto my legs and head position. A change of just 1 or 2 inches meant that I had to put things under my feet to lift them up to stop my legs feeling painful.

The cushion is not the only thing that keeps me comfortable. In conjunction with my lateral support and chest strap, I am held in a relatively stable position that has kept me seated well for a number of years. Sitting all day and wanting to be in a good position has implications for normal activities, and being comfortable is especially necessary. Fortunately, over the years I have worked well with some great seating and wheelchair healthcare professionals to keep me in a good position and they have provided lots of input. This service is definitely an important one for people with wheelchairs, so it really should be seen as an essential part of adult healthcare.

One good thing we have found to prevent discomfort is occasionally giving the gel pack a bit of a beating to push the gel around and spread it back out properly. If I am uncomfortable it does seem to help as the gel tends to settle in one spot after a while. I currently have a JAY J2 cushion on my chair.

Anxiety about future medical issues

A couple of weeks ago, I had an annual check-up with some of the medical team I am under the care of. During the meeting, the subject of the future and advanced care planning was brought up. I was given some information about medical procedures that I may want to consider undergoing in the future, and it caused me to feel anxiety and stress. They started to give me details of advanced care planning, which entailed a discussion of topics such as feeding tubes, tracheostomy and resuscitation. All of these subjects were scary to broach and as I have not often been someone who looks forward too far, being faced with potential future problems was slightly upsetting, more so than I thought it would be.

As Duchenne muscular dystrophy is a progressive disease, issues that come with it are inevitable so the described ideas and procedures were not much of a surprise to me, but they were still very worrying nonetheless. Because I had gone into the meeting not expecting the conversation, it probably hit harder considering just how significant having these medical procedures can be to your life. Perhaps the biggest source of anxiety is thinking about the choices. Making decisions about what to put your body through is a really big thing, especially when you are healthy currently. The ball is put firmly in your court and you must make the ultimate decision. Also, there is no definite timeframe for problems to arise, so ‘when’ becomes another factor as there is no way to predict the future. Thinking about “what ifs” and “when shoulds” can be a lot more difficult than one would think. I would not usually consider myself as an anxious person, and even though there was no pressure on me to make any decisions there and then, it certainly gave me a sinking feeling and it was still slightly hard to hear having not thought too far ahead as a usual matter of course.

The discussion was to give me more information about my future. Having that information is useful in order to make informed decisions and I definitely do see the benefit of talking about future issues in good time, before they become a problem. Also, making sure your wishes are set out properly in case they are needed is important too, for myself and others. Having said this, I think it is very important to approach certain subjects with a large amount of sensitivity and it is also important not to make people feel like they have been ambushed in anyway.

Food I miss

Food has become more difficult for me to eat and the vast majority of my meals are now blended and put through a sieve to make it easier. Losing weight is a big concern for someone with DMD and has to be maintained. Not being able to eat whatever I want is a challenge, it’s not just the concerns about weight or choking but also that it can get me down mentally. However, we always try different dishes to see if they can be liquidised or made in a way that I can manage. It isn’t quite the same as eating something whole but it can still work.  I generally have a positive attitude towards this part of my routine but there are certainly foods that I miss eating, and I want to share some of them with you.

Rice – This may seem like quite a boring one but I did used to enjoy eating rice-based dishes like fried rice with vegetables or chicken and rice. It does not go through a blender very well and likely would not make something with the right consistency for me. Carbs like rice and pasta cause this problem so I steer clear from them.

Sausages – They were one of my favourite things to eat. It could be on the BBQ, a fry up, in the oven, sausage and mash, toad in the hole, these are all great things that I really enjoyed. I definitely crave a sausage sandwich with ketchup on occasion. However, I do still eat sausages as part of my diet albeit in blended form as it works well in soups or casserole.

Fish – This is a more difficult thing blend and is much less enjoyable after so we tend to eat it less. We used to eat fish a lot and I would normally pick it when we went to restaurants. I really miss fish and chips as well. But again, this doesn’t mean that I can’t eat it at all in different ways. I have had fish in different sauces and also as a mousse so it can work even though it isn’t quite the same.