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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 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.

My Favourite RTS Games

I love the real time strategy game genre, and here are five of my all time favourites.

COH – This was an excellent game from 2006 based on WW2. It had a great soundtrack, solid graphics, fantastic atmosphere, alongside great detail and sound effects. It was the first in a series of games that are very popular, with the third game coming out next year. The environmental destruction in the game is still second to none and it really captured the imagination. The campaign missions were great but I really enjoyed playing against the AI in skirmish games.

Medieval 2: Total War – this is possibly my favourite game of the whole lot and is probably the one which I spent most time playing. I still enjoy playing any of the games in the Total War series but this is the most nostalgic. The campaign map, unit variety and overall aesthetic really sets it apart, and there are so many excellent mods that contributed to its success.

AOE2 – as I have written about previously, Age of Empires has so much going for it. It still has a excellent player base and it is still receiving continued development even after 20 years. This was one of my go to games throughout my teens. The longevity of AoE2 is partly due to its replay-ability, with the multiple maps and strategy choices.

BFME2 – this is another classic game that I used to play a lot when I was younger. As a massive fan of Lord of the Rings, a strategy game based in the world of Middle earth was great to have. It built on the original game by adding free building, more factions and hero creation, so was a more rounded product.

DoW2 – Dawn of War was a brilliant game but I did not play it very often compared to this game. The grim dark anaesthetic of the 40K universe was excellent, and the fact that it was made by Relic using similar ideas and mechanics from Company of Heroes probably elevated it in my mind.

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.

Withings ECG watch – my review

I was recommended by my doctor to buy a watch that could record and take an ECG if I needed. I got the Withings ECG and here is my short review of the product.

It cost a little over £100 which feels maybe a bit expensive but it can be used to record a number of different measurements. These include steps, tracking workouts, heart rate, and an echocardiogram. The watch is used alongside an app on your phone and that was fairly easy to set up and is very intuitive. The battery was dead when I tried to use it for the first time despite a supposed 12-month life, but that may have been caused by not using it for a number of months. The battery was easy to change after finding a YouTube tutorial.

The watch itself is very simple with a basic clock face and another dial which illustrates when the ECG is in progress. It is lightweight and very comfortable to wear all day. There is only 1 button to press to start an ECG and you can take readings on the go with or without your phone nearby. It uses Bluetooth and syncs to the app each time you open it. A big issue for me is that to take an ECG requires placing your other hand over it and touching the edge of the watch for 30 seconds. This means that I need help to use it but that would normally be the case for me regardless.

You able to watch the ECG in progress, view the results as a pdf and send them to your doctor from the app once you set up an email, although this part could have been made easier. It tells you whether your sinus rythym is normal and gives your heart rate. It would be useful if you were able to download each ECG when I log in on my computer to make the process easier unless I have missed an obvious option.  The watch and app can store a lot of information which is another plus point. Overall, it is a solid product and does the job as a smart ECG watch.

Paralympics

The Paralympics is on again and I have enjoyed watching the games so far. The Paralympics is an excellent platform that really shows off the incredible capabilities of people with disabilities. The athletes display an endeavour and strength that doesn’t fail to be inspirational to me as a disabled person, and I find it brilliant. Being able to watch so many people with such a diverse set of disabilities gives others a chance to see themselves within the games and say “that could be me” or make them want to try something new. It is a positive story about inclusion and how disability should be seen, not as a problem or a hindrance but as something to be made visible and celebrated. The games demonstrate that having a disability does not limit a person’s ability to achieve and strive, even if it may present additional challenges in their daily lives.

Despite all the great things that the Paralympics brings such as exposure, however, disabled people are still too often forgotten about or mistreated in society, or seen as second-class citizens, which has been highlighted further during the Covid pandemic. The Paralympics acts as an excellent reminder and a big positive for disability but it should not be the only thing that creates a discussion. It should not be the one time every four years that there is a focus on disability awareness, advocacy, and social change. Governments have to be the ones to act to reduce discrimination or increase funding, for example.

There are many different events but some of my favourites have been the wheelchair rugby, boccia, archery and swimming.  Watching swimmers with physical difficulties in the S10 category such as no limbs going so quickly is nothing short of remarkable in my eyes, and boccia allows competitors with a range of abilities to all compete using different equipment so is also fantastic.  Team GB have won numerous medals across many sports so far (80 and counting) and there have been some truly great moments for me. GB became the first ever European team to win gold in the wheelchair rugby, Hannah Cockroft won the T34 100m with a new world record, and Lee Pearson won yet another Equestrian medal, to name but a few. Additionally, I hope that David Smith will be able to win in his gold-medal Boccia match to become the most decorated British player tomorrow.

The best strategy game? – AoE2

Age of Empires 2 is possibly the best strategy game ever made. It is one of my favourite games and I have spent many hours playing it. I remember first playing it in the early 2000’s and I still have my original cd in its square case, with the 3 kings staring angrily outward. AoE2 remains a massively popular and beloved title today, and below are some reasons I think it is so great and has remained so.

  1. Single player features – The single player aspect of the game is excellent as there are numerous things to do. There are loads of campaigns that look at civilizations from many continents and eras, but El-Cid was probably my favourite campaign from the original. There are also historical battles and custom scenarios, or you can just skirmish versus ai which are also lots of fun.

2. Replayability – It is easy to play again and again because every map and scenario is different and the layout of resources and terrain always changes. For almost 20 years I have been able to keep playing without it feeling repetitive or boring, and this is testament to the quality of the game.

3. Multiplayer – The multiplayer community is still strong and it is always possible to find a match. There is also a great competitive scene which demonstrates the love that people still have for a more than 20 year old game. A recent tournament I watched topped 50k viewers on Twitch during the final match.

4. Support – Development support for the game is ongoing. New dlc, patches and tweaks still occur quite regularly and this keeps the game feeling fresh. The release of the Definitive Edition also gave the game even more depth, both graphically and game-play wise.

5. Unit variety – The number of troop types and unique civilisation units is fantastic spanning from the early medieval period to the Renaissance, from the Mongols to the Aztecs. Woad Raiders, Tuetonic Knights, Flaming Camels, Archers, Bombards to name but a few.

Overall, AoE2 is simply a fantastic game that has stood the test of time and keeps me thoroughly entertained every time I play it.

Hotels and Accommodation – Disability friendly rooms/ accessible / wheelchair friendly

In this post I am going to talk about how accommodation (hotels, guest houses, etc) advertised as accessible and disability friendly is not inclusive for all disabled people.

Oftentimes, accommodation is presented as accessible or ‘disability friendly’ when it is not. Many hotels, holiday homes and cottages are described as fully accessible when they lack certain facilities that are necessary for people with severe disabilities to use and be unrestricted. When searching for somewhere to stay in the UK, there are certain facilities and features that I need which are largely lacking. I find myself checking off criteria on numerous websites only to find a major problem. On the plus side, features such as ramped access, wide spaces, en-suite bathrooms and grab rails, are included, but for the most part two vital pieces of equipment are missing. The most important piece of equipment for many with physical disabilities is a hoist, and not enough places provide them. A powered bed is also a very important need but one I find secondary to the hoist as it is possible to cope without. Therefore, these places are not satisfying the needs of all disabled people so should not really claim to be accessible for all disabilities.

For many people with severe physical disabilities like myself, grab rails and ramps are not enough to make a room truly accessible. Because of my limited function, I require the hoist so I can use the toilet, wash, get dressed and go to bed, and far too many places don’t have this vital equipment. Either mobile or ceiling tracked, having a hoist is the make or break issue when trying to go away anywhere. Though mobile hoists are welcome, ceiling tracked hoists are so much more convenient and easier to use, but very few places install them. As a side note, mobile hoists can sometimes be restrictive due to the size and can be blocked if a bed is too low to the ground, but ceiling hoists avoid any such problems.

Hoists open up the accommodation to a much larger group and allow people with disabilities to travel and participate in ‘normal’ activities that everyone should have access too. Furthermore, the equipment does not break the bank in terms of cost, it can be locked when not in use, and doesn’t prevent anyone from staying.

I don’t think that it comes from a place of malice but one of lack of knowledge. If more people are made aware of the issues they can respond to them. Ideally, many more places would have at least some rooms with ceiling track hoists and electric powered beds. I think that there may be some benefit for people in charge of accommodation having more help and guidance, perhaps even from the government, to ensure everyone can indeed access such places.  

When I went holiday in 2018, it was so nice for me and my family to be able to go somewhere where my needs were fully taken care of. The owner had experience with a disabled family member so had installed a ceiling track hoist into a bathroom and an adjustable powered bed. It gave us so much freedom as there was no fear of not having somewhere to get changed or sleep comfortably.