Category: Uncategorized

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.

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.

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.