Working full time is the goal for most of us – to earn our own money, pay the bills, put our skills and knowledge to good use, in addition to contributing to society. But for those who deal with chronic pain each and every day, this is not so easy to achieve.
Living with chronic pain can be debilitating, difficult to manage, incredibly stressful and for some it is sadly all-consuming. It is hard to focus on anything other than how you feel, thereby potentially affecting your personal and professional life, as well as your mental health and wellbeing.
No one wants to be out of work due to ill health. Aside from the obvious financial gain; work provides a purpose, opportunities to socialise, integrate with peers and further your own personal development.
Whether you commute or work from home, it’s important to find the method of pain management that suits you. Chronic pain can manifest in many ways, and as such there are several forms of treatment including medication, heat pads and even CBD oil.
Begin your day with strength and positivity: Try listening to motivational podcasts before bed or first thing in the morning. This will aid your mental health and encourage determination and perseverance to help you make it through the day.
Set the alarm: Seems obvious, right? But in all seriousness, this is an important step. An alarm will provide that extra nudge to get you out of bed. Position the alarm out of reach so that you’re unable to hit the snooze button or knock it over in frustration.
The earlier you start the day, the more time you have to prepare yourself physically and mentally. Rushing around will only add extra stress and inevitably exacerbate your chronic condition.
Learn to stretch: You might stretching is a bad idea for anyone living with chronic pain. However, in consultation with doctors and specialists, it can be of great benefit to devise a plan to stretch and exercise each day.
Stay as mobile and active as possible, but be sure to reserve energy and rest when necessary. Don’t force yourself to work through unbearable pain. This is counter-productive.
Comfort: Pay attention to your working environment – introduce furnishings and features for optimum comfort. Think about seating, cushions, footrests/stools and massagers.
Consider consulting an occupational therapist who will help to make your working life as easy as possible. If that means adding eight cushions of varying
firmness to your office chair, then do it!
Planning and preparation will result in good performance at work, despite constant chronic pain. Of course, it is sadly the case that many sufferers will never be completely rid of pain. But in order to work, and to work to the best of your ability, you need to formulate an individually tailored method of management. There is no ‘one fits all’ solution.
It’s fair to say that most of us dream of buying our own home, right? That first step on the property ladder is an exciting milestone in our lives. It is representative of independence, responsibility and yes, becoming a ‘real’ adult!
However, for many it can be a lengthy and stressful process. Finding a suitable property in the right location, and at an affordable price is not easy, particularly for today’s generation.
For those of us with a disability, the task is far greater. To some, being able to live independently in your own home, whether renting or buying, feels like an unreachable goal. If and when you’re able to find a property to suit your requirements, you then face the inevitable task of adapting it to ensure it’s fully accessible.
While this can be daunting and even off-putting, if you choose to take a positive perspective, it could be considered a fun, and thoroughly rewarding project. Remember, you don’t necessarily need to wait for an accessible property to become available. Alternatively, why not find the home you love and adapt it so that it’s perfect for you.
1. Taking Your Time
Perhaps most importantly, don’t rush the process (tempting though this may be). Of course, we’re all impatient to leave the family nest and move into our own place. This is major undertaking (particularly for disabled people) and a great expense, therefore it needs to be done right. It may take months, it may take years! Believe me, I know how disheartening the waiting game can be. But is really is essential to take your time.
2. Consulting A Contractor
Once you have found a suitable property, where applicable, the next step is to consult contractors (ie. builders). If structural work is necessary, seek advice and obtain quotes from at least three builders. I would also advise checking out a range of accessible homes. This will provide information and inspiration, thereby enabling you to plan your new home effectively.
3. Estimating The Budget
Obviously, there is no point obtaining quotes and making calculations if you are unaware of your overall personal budget. It is imperative, from the start, that you establish an estimated budget, and that you stick to it. You could fund the adaptations using savings, your original house buying budget, or you may choose to investigate the option of long term loans. Either way, ensure you have a genuine estimated budget.
4. Making It Your Own
When modifications are required to make a home accessible, it will affect the physicality and aesthetic of the property. For example; ramps, wider doors, level access, hand rails, lifts, lowered units and ceiling track hoists – these are all very visible features. You may feel like you are having to forego style and character in favour of practicality – and it’s okay to feel that way. But regardless of the extent of the adaptations, you can always make your mark. With a little planning and creativity, you really can make an accessible property your own. Have fun with furnishing and decorating your new home.
5. Making Room For Your Things
Whilst working with professionals (occupational therapists, builders etc) who will help to adapt the property to your specific needs, you’ll also want to make sure there is room for your personal items and equipment. Make a list of everything you will need to store – from wheelchairs to hoists.
At the end of the day, thorough planning is key! Prepare, plan and be patient…
My good friend Lucy recently graduated from Canterbury Christ Church University with a First class honours degree. Like me, 24 year-old Lucy who lives with her family in Kent, has a progressive form of muscular dystrophy.
Now that she’s free from study, I thought I’d grab her for a chat and ask a few questions about her university experience from the perspective of being a physically disabled student.
Perhaps the insight, information and advice offered here might be helpful to anyone out there with a disability who is applying to university or considering higher education.
1. Hi Lucy, can you please describe your disability and how it affects you.
Hey! Right, so…I have Congenital Muscular Dystrophy – Merosin Deficient, meaning I lack the merosin needed to knit the layers of my muscles together. Because of this, I get progressively weaker over time due to my muscles being unable to properly repair themselves.
This weakness means I can’t really do anything for myself without support from other people. It also makes daily habits difficult as I lack the strength to hold things and do things. A few examples might be that I find it difficult to feed myself as I find certain cutlery too heavy to lift, I can no longer read books unless they’re digital as I cannot hold them or turn pages, and I need regular hoisting for transfers and the bathroom.
Being a muscle defect, my organs and my lungs in particular are affected, meaning I have regular medication and ventilator intervention to aid my breathing. Lying down helps with this, as well as only being able to write/type lying down, which means I lie down most of the time.
2. Did your disability put off going to university? And what, if any, concerns did you have prior to applying for university?
I knew it would be difficult to apply to university but I wouldn’t say my disability ever “put me off” of applying. I’ve been very lucky with my education in that my parents have always pushed for inclusion and for me to receive education befitting my abilities. I went to a mainstream primary school, a grammar school for my secondary education, and college after that. So applying for university, whilst scary, was the logical next step for me.
That’s not to say I didn’t have any concerns regarding how I would be able to access higher education with my disability. One of my main worries was that Uni is a very different environment from school in that the campus is a lot bigger! Having hoists and a portable bed so I can lie down is all well and good when it’s accessible but, what if I was timetabled for lectures in a different building to my equipment? It wouldn’t be possible to transfer every 5 minutes, so it took a while to negotiate a timetable solely in one place – it was tough but doable.
3. Could you please explain the application process and any challenges you faced?
After applying and being accepted, I began having regular meetings with the disability officer who would be supporting me during my time at Uni. The disability department at my university in particular was split into different fields: physical disabilities, learning disabilities, and mental health.
We discussed suitable timetabling, storage for my hoists and bed, even suitable places for my carers to chill out whilst I was in lectures. It was all sorted over the summer months before term was due to start.
I chose to live at home with my family throughout the duration of my course (2015-18) rather than on campus, so that was one less thing to organise.
4. What support did you receive and was it difficult to get this support in place?
I have my own team of personal carers, provided by an agency, who supported me whilst a student. In my case, this wasn’t something the university or disability officer organised or supported with.
The DSA I used mainly to pay for transport. I paid for a wheelchair-accessible taxi to take me to Uni or the library each day. The finance was also used to supply me with a MacBook and accompanying software such as Dragon Naturally Speaking and Claroread, as well as a printer and allowances for things like ink cartridges and paper.
I personally found the process of co-ordinating with my disability officer really straightforward at the beginning. She really listened to what my needs were and to the best of her abilities made sure everything was in place before I started my course. However, it was once I had enrolled that her involvement became less proactive. I think a major learning experience for me would be that I should have been more proactive myself in maintaining regular contact with her.
There are undoubtedly going to be a number of disabled students on the system at whichever university you attend. Therefore, I would say if you feel you need help or advice, don’t hesitate to ask! Because, when I did ask, she generally followed through. I only wish I’d asked for her help a lot more than I did.
5. How would you rate your university experience from a disability/inclusivity perspective?
Looking back on my experience as a disabled student, I’d rate my experience quite highly to be honest. There were certain things I found more difficult but generally I was included really well. I was able to lie down in lectures and participate fully, timetabling was set so I remained in one classroom for the entire day (something which my peers were VERY appreciative of, and made it known to me regularly). My equipment both on campus and at the library was easily accessible and staff were very helpful in its safe storage. All members of staff – from lecturers to security and housekeeping were continuously supportive and understanding of my needs.
6. In your opinion, what improvements need to be made to make higher education more accessible to disabled people?
As previously mentioned, I’ve been lucky in having the family support and confidence to access university, but I know how difficult it can be to have that confidence. I think one of the main reasons for this is because the process isn’t made clear or obvious. I mean, I had to work out my own process moving forward after my application. Whilst every process for establishing individual needs at Uni is going to be different, I think it’s important that the availability of such a step is highlighted.
I think UCAS and all university websites should, as a minimum, have a clear disability section outlining key contacts of enquiry. It’s far easier to make confident decisions if you’re fully informed and know that there’s going to be the support you need behind you.
I won’t rose tint – accessing higher education as a disabled student can be like having to find your own way in the dark! By no means is it a clear, easy-to-follow process.
7. What advice would you offer other disabled people considering university?
Having now completed university, I guess I’d advise others to try their best not to get anxious about the process. Yes, it’s daunting. Yes, it’s tough. But ultimately it is worth it.
As long as you’re clear and assertive about your needs, there will always be people around to support you. If you need support with campus or timetabling issues, ask the Uni. If you need help in class, ask your lecturers. If you need a pen, ask one of your peers! It all sounds really obvious and stupid but I can’t stress enough how important it is to just ask for help. But most importantly, be confident in yourself and just be yourself!
8. As a physically disabled individual, what do you consider to be the potential challenges around the social aspect of university life?
I think the social aspects of life in any context can be difficult for disabled people but at Uni it can be especially hard for some. I think one of the most important things to remember is that, actually, it’s not just you and it’s definitely not just disabled people that have this issue.
Many students relocate for university, sometimes half way across the country, sometimes half way across the world. So you’re all going to be in the same boat in that respect.
However, I’m not dismissing the fact that disabled people have it tougher than most. I think the most important thing is, once again, confidence. Many people lack the confidence to introduce themselves to disabled people for a multitude of different reasons – they don’t know what to say, they don’t know if you can respond, they don’t know if you want to be spoken to. All of these things can seriously put people off because they don’t want to embarrass themselves, or you for that matter, so it’s up to us to have the confidence that they lack.
Introduce yourself to people at Freshers’ Fayre, be an active member of your class and, if possible, join a society or two. Be the best version of yourself and people will be drawn to you.
*All images courtesy of Lucy Hudson.
I’d like to thank the lovely Lucy for putting up with my interrogation!
She is in fact a brilliant poet, having co-authored the poetry anthology ‘Wheels of Motion’ which can be purchased here!
Daniel Baker is a first time actor who landed the role of a man with Duchenne muscular dystrophy, in the primetime BBC1 drama, Requiem. Most notably, Daniel himself has the condition.
Muscular Dystrophy UK contacted Daniel after the production team specifically set out to cast someone with the disability. He appears in the psychological thriller, alongside Brendan Coyle, best known as John Bates from Downton Abbey.
The newcomer, from Cheltenham, is one of the few men with Duchenne muscular dystrophy to reach his forties. Here, he talks openly about life with a muscle-wasting condition, tells all about his debut acting experience, and shares his views on able-bodied actors portraying disabled characters.
1. Could you please tell us a little about yourself and your disability?
I am a 43 year-old man with Duchenne muscular dystrophy. I had a fairly normal childhood until the final years of primary school, when I could no longer walk and had to start using a wheelchair. I attended mainstream schools, followed by university. After university my condition worsened and I was given a ventilator to help me breathe. Due to this and some medication which caused negative side effects such as panic attacks, I ended up being bed bound for nearly ten years. However, I eventually managed to control my anxiety. Then, after raising the funds for a new powered wheelchair, I faced the outside world again.
Duchenne is a condition where muscles get progressively weaker over time. We usually end up in a wheelchair by our early teens and require ventilation in our twenties. Although things have progressed medically, life expectancy is still in the 20’s. Some of us are living far longer than this, but sadly it’s still rare.
I try to live as normal a life as possible, and although there are always going to be limitations, I push myself and use technology to find ways around them. I manage to get out most days to either explore my hobby of photography or just walk my dogs. The dogs have their leads attached to my wheelchair so I can actually walk them myself. I still need someone with a pooper-scooper following me though as I can’t reach to do that job!
2. You achieved a BSc(Hons) in Applied Physics from Oxford Brookes University. How was your university experience in terms of inclusivity and disability awareness?
I attended university and got a government grant to pay for everything. I also received another grant called the Snowdon Award, which paid for travelling and a carer to help me. Nowadays things look much harder for anyone wanting to attend university and I doubt I would have been able to afford it myself.
I decided to commute each day as living on campus and finding accessible accommodation would have been very difficult for me. The journey varied between an hour and two hours each way, and though this was very tiring, it gave me chance to read text books and revise while in the car.
One consequence of not living closer was that I missed out on the social aspect of university life. I wasn’t overly bothered at the time as I’ve always liked my own company and was really there just to learn. But now when I look back, I think more socialising may have done me good.
The university itself was fairly accessible. There was one lift that was tiny and would break down on occasion, necessitating me being carried down stairs in my wheelchair- not a pleasant experience!
As I studied physics, I did need help performing the experiments, though luckily most lab work was done in groups so it wasn’t a big issue. The staff were always helpful and treated me like any other student. I can’t really complain about the inclusiveness and accessibility at all. Yes, some things could have been better, like having more accessible toilets. But overall it was a good experience and I’m grateful to have had that opportunity.
3. You recently featured in 2 episodes of Requiem (congratulations!) How was this experience and what challenges did you face as a disabled actor?
Appearing in Requiem was an amazing experience! I had never acted in any fashion before, other than primary school plays where I usually hid in the background. So the whole experience was something new to me and pushed my boundaries – something I try to do as much as possible these days.
I think the casting process was likely a lot easier due to my disability. They were looking for someone with my specific condition and there aren’t that many of us around. I sent a few headshots and pictures of myself, then chatted with the production team over email. I was offered the part within a couple of days.
As for difficulties, I think they probably aren’t the things people would expect or think about. As soon as the offer of a role came up, I had to check that my personal assistant would be available and flexible to take me. I had to think about transport and did some research to find which trains had the best accessible carriages without any changes. I even did a test run the week before filming just to make sure everything would go smoothly. I had long chats with the production team to ensure the correct equipment, like a portable hoist, would be available on the day. They were very thorough and wanted to make sure I was safe and comfortable. This is something most actors wouldn’t need to even think or worry about.
I was extremely lucky to be working with a great team on Requiem. They ensured I had my own room on set, organised taxis and sent a runner to meet me at the train station. They also had a medic check my needs on set in case of emergency, and made sure the set itself was accessible.
The day itself was perfect. Everyone (cast and crew) welcomed me into their family and I felt right at home. I didn’t feel nervous at all and the scenes were all shot in one take, which I think really impressed them. I felt just like any other actor – I was treated as one of the team and not “special”.
4. As a disabled actor yourself, how do you feel about able-bodied actors portraying disabled characters on stage and on screen?
I think it depends on context and certain circumstances. Sometimes it is probably necessary, especially when the condition being portrayed is progressive, and when a good actor who has done plenty of research plays the part it can work well.
In general though, I think disabled actors playing the parts of disabled characters is a lot more authentic and should be done as much as possible. We have skills and knowledge that could be invaluable to the production team.
There is also the aspect of showing disability to society so we are more accepted and understood. This can’t really be achieved unless the actor is disabled themselves. The more we (disabled people) are on screen and included in mainstream media the better.
5. What advice would you give to others like yourself, who are living with a muscle-wasting condition?
I would use the old cliché, ‘live every day to the fullest’, because you never know what is going to happen tomorrow. I take risks everyday. For example, if my ventilator stops working while out, I’m in big trouble!
But we need to just get on with life and not worry about every possible risk, otherwise we would be stuck inside doing nothing. This can and does lead to depression, which I have experienced myself.
Having said that, I do believe that people in a similar position as me should embrace and be proud of their internal strength and determination. Yes, we face an uncertain future, most without hope for a cure and declining health. But this gives us an advantage over able-bodied people – we are used to overcoming adversity and major obstacles in life.
Life with Duchenne muscular dystrophy isn’t easy! Maintaining happiness and finding enjoyment in things is an every day struggle. It can be incredibly frustrating too.
There are days I wish I could get myself up, washed and dressed. I would drive my van to the woods, venture to where it would be impossible for a wheelchair to go, and just be alone, listening to nature.
For people like me with a muscle-wasting condition, it isn’t a simple life. There are many things we won’t experience, so I would advise you make the most of what you can do and take advantage of every opportunity.
Some things I have done, like appearing on a primetime BBC drama, most ‘normal’ people will never get to experience.
Daniel features in episodes 4 and 6 of the BBC drama Requiem. The whole series can now be found on the BBC iPlayer.
“Petworth has changed my life greatly…he has given me a reason to get up every morning.”
I recently had the pleasure of chatting with the lovely Harriet Butler about life with her beloved assistance dog, Petworth.
Harriet, 26 from Worcestershire, studied media and cultural studies at University and currently volunteers at KEMP hospice. Like me, she has a form of muscular dystrophy.
Here she explains all about the application process and why she wouldn’t be without her canine partner…
1. What is your disability and how does it affect you?
I have Duchenne muscular dystrophy. This form of muscular dystrophy predominately affects boys but in rare cases females like me can have the condition. Duchenne is a progressive muscle-wasting condition that affects every muscle in the body. I was diagnosed at the age of nine. When I was younger I was able to run and jump around but over time things became more difficult and eventually impossible. When I was twenty-two, I broke my ankle and now I am unable to weight-bear and so I rely on a wheelchair to get around.
2. What made you decide to get an assistance dog and what did the process involve?
Several years ago I visited the dog show ‘Crufts’ at the Birmingham NEC. Whilst I was there, I watched an assistance dog demonstration. I was blown away by what the dogs could do.
In June 2014, I had a spectacular fall and broke my ankle. Before my accident I could still walk short distances on the flat. I had surgery in which pins and plates were inserted. I had hoped I would be able to regain my mobility but it became apparent that this would be impossible. Once home and in a difficult place in my life, I applied to Canine Partners. They are a brilliant charity that provides assistance dogs to those with physical disabilities.
Once I had applied, I was invited to an assessment day at their centre in West Sussex. I met some incredible dogs and did some task work to see how a potential assistance dog could help me. I also had an Occupational Therapist come out to visit my home. She checked that my garden and home environment were suitable. I was then added to the waiting list and Canine Partners would start the process of finding me a suitable dog. They try to find a dog that fits in with your lifestyle and the tasks you need help with. For instance I required a tall dog to pass me items because I am quite high up in my electric wheelchair.
Eventually I got the much-anticipated call from advanced trainer Chrissie to say they had found me a potential dog. I was invited to meet Petworth and it really was love at first sight. We seemed to click straight away and I really liked how unusual he looked. Petworth is a curly coated retriever Labrador cross. He has extremely long legs and a lovely curly coat. We discussed the tasks I would like him to do. The following day, Chrissie phoned to check that I wanted to go ahead with Petworth. Of course, I said yes.
The final stage involved going on a two-week training course and learning how to work with Petworth. I have now had Petworth for over two years and I couldn’t be happier.
3. How does Petworth assist you and how has he changed your life?
Petworth can assist me in so many ways, providing me with a degree of independence away from carers. He picks things up when I drop them (I do this very often due to my reduced dexterity). He gets help when I need it; he goes and finds my Mum. He brings the post to me when it arrives. He opens and closes doors around the house and also pushes automatic door buttons when I’m out. He turns on and off the lights in my room and bathroom. He assists me with taking my coat/jumper off and shoes and socks. He fetches my phone for me if I leave it in a different room. He is able to open and close cupboards so at feeding time he fetches his bowl for me. He also helps me tidy up by putting his toys away in a box. When we go shopping he can help getting items off the shelf. Once we are finished shopping, Petworth can help me pay and gives my purse to the cashier.
Having just written down the things Petworth does for me, I’m quite amazed. He really loves to help me but it isn’t all about work, he still gets time to be a normal dog. We both enjoy going to the park or going on a long walk. One of my favourite things is teaching Petworth a new task; he is a very quick learner. As my condition is progressive I can train Petworth to do more tasks that will benefit me in the future.
Petworth has changed my life greatly. In many ways he has flipped it upside down. Before I had him I was too scared to leave my house. I was always worried I would drop my phone or keys. I always felt like all eyes were on my wheelchair and me. I didn’t have a social life and I became very isolated. Now I feel like a different person as Petworth gives me so much confidence. People are more interested in Petworth than my chair. He is a fab talking point and people love to ask me questions. I don’t have to rely so heavily on carers. Most importantly he has given me a reason to get up every morning. He looks after me and I look after him.
4. What, If any, are the challenges of having an assistance dog?
This probably sounds cheesy but I don’t think it is a challenge. Petworth really has enhanced my life and opened up many doors…literally!
The main hurdle we face is good old British weather – come rain or shine Petworth needs a walk. This means wrapping up warm, getting my waterproofs on and embracing whatever Mother Nature has to throw at us.
I was initially worried that I would struggle looking after a dog due to fatigue, but in reality Petworth gives me more energy by completing his tasks. I am responsible for exercising, grooming, feeding and playing. This has helped me maintain some muscle strength and it has given me a purpose and a sense of achievement.
5. What would be your advice for others who are considering getting an assistance dog?
Go for it! Having Petworth has completely changed my life and an assistance dog could do the same for you. I know some people think I’m too disabled or I’m not disabled enough but I still recommend applying. I would try to speak to somebody who already has an assistance dog to see what is involved and if it’s for you. The best advice I can give is be patient. It is not a quick process and the charity waiting lists are long at the moment, but it really is worth the wait.
*All images courtesy of Harriet Butler
I would like to thank Harriet for taking the time to answer my questions so thoroughly.
The Undateables is a Channel 4 TV show featuring people with a variety of disabilities, all of whom are looking for love.
Steve Carruthers, who has Crouzon syndrome (a genetic condition affecting the shape of the face and head), was a participant on series two, back in 2013. Though romance did not blossom with his date, the experience gave him much needed confidence.
Following his appearance, Steve – now 36, from Manchester – soon met the love of his life Vicky, through social media. Vicky had in fact seen Steve on the show and decided to contact him.
The Undateables screened Steve’s romantic proposal and the couple later married in 2015.
1. Steve, why did you apply to The Undateables and, what reservations did you have?
I initially applied for a different show called ‘Beauty and the Beast: The Ugly Face of Prejudice’. As a result, I was approached to appear on series one of ‘The Undateables’, but I declined as it had never been on TV and I didn’t get the gist of the show. After series one ended, I was approached again but this time it was by my good friend Adam Pearson, who worked with the team to find participants for the show. He convinced me to give it a chance as he said it would help me with my confidence and outlook as I had a negative outlook on life after the loss of two of my siblings. I was a bit reserved and concerned that after being on the show, more people would make fun of my appearance. But, in doing the show, my outlook changed to a positive one and allowed me to help other people in a similar position.
2. How were you treated throughout the production process?
The whole team was incredibly nice, supportive and understanding. Everything was treated with care and compassion.
3. What response have you received following your appearances?
Like all things with TV, there are negative people who see disability as something to mock and joke about. But the positives outweighed the negatives in a huge way. People are so kind and understanding. I found that it [the show] helped educate people about disability. It also helps with how we perceive ourselves and how society perceives us to.
4. The show has been accused of being insensitive and exploitative. The title in particular is widely criticised. What do you think?
The show itself really is everything you see (believe it or not). It is exactly how dates are in real life – you have moments of silence, awkwardness and moments of hope. The show’s titles show cupid shooting the [prefix] ‘Un’ off, leaving the word ‘dateables’. The point of this is to prove we are all dateable, and that we [disabled people] have the same experiences on dates as everyone else does.
5. What would you say to anyone who is considering applying to the show?
My advice to anyone applying for or appearing on the show is to go into it with an open mind. There will be those who will say [derogatory] things, but overall the positives more than outweigh the negatives. It is a life-changing experience. Embrace it! The positive message you’re putting out there helps others as well as yourself. The show has had a huge impact and gives so many people, like me, much needed confidence. Those who watch the show have gained so much more understanding of different disabilities too.
I’d like to thank Steve for taking the time to speak with me.
You can watch his original appearance on the show here.
*Disclaimer* Please be aware, this is in no way an official, definitive guide for parents of children with neuromuscular conditions. Here I offer support and advice along with my personal perspective, having lived with Ullrich congenital muscular dystrophy for 29 years.
– I am a UK based disability blogger
– I have Ullrich congenital muscular dystrophy
– Born in 1988, I am now 29 years old
– Born with ‘floppiness’ and dislocated hips
– Slow rate of progression: I didn’t start to walk until 19 months old and ‘bum-shuffled’ until then
– I was able to walk short distances, wearing custom-made leg splints, until age 10
– I would fall over a lot as a child
– I could never walk up or down steps or stairs
– I am now completely non-ambulant and use a powered wheelchair
– I have contractures in all joints
– I have a severe ‘S’ shaped scoliosis (curvature of the spine), which has not been surgically corrected
– Over the years, my condition has deteriorated
– As an adult, my primary concern is respiratory-related
– Education: I attended mainstream school, achieved A-Levels and a degree with Honours.
I would first like to say, a life with muscular dystrophy need not be an unfulfilled life! Many people with neuromuscular conditions lead full and active lives, whilst pursuing demanding careers.
Though severely disabling, muscular dystrophy is not synonymous with suffering or a poor quality of life.
It can, of course, be shocking and extremely distressing to learn your child has a muscle-wasting condition. In some cases there may be a family history, whereas for others like me it could be completely unexpected and unfamiliar.
I am the only member of my family with any form of muscle-wasting condition. So when I was initially diagnosed, aged 4, with congenital muscular dystrophy following a muscle biopsy, my parents were venturing into the unknown.
The year was 1992, there was no Internet, no Google, few resources and more to the point – they had never even heard of muscular dystrophy!
It may be helpful to talk to other parents of children with a similar condition. If this is something you think would be beneficial for you, ask your care advisor or neuromuscular consultant who will assist.
If you are not ready to speak to other families, remember this is always an option if you change your mind in the future.
How and when to tell your child
There is no right or wrong answer. Only you can decide what is best for your child. It is also important to consider siblings, as they should be included in any discussions you have as a family. However, I would strongly advise against telling siblings more about the condition than the affected child. Any information you choose to share with your children should be fair and equal, regardless of the gap in age.
When deciding if, when and how to tell your child of their diagnosis, consider:
– Their age
– Their own awareness of their disability – Emotional maturity
– Your ability to answer any questions they might have
From a personal perspective, I recommend an open and honest policy from the very beginning.
I cannot recall any formal discussion or disclosure of my condition, whereby my parents sat and explained the ins and outs of it all to me and my older brothers.
I was officially diagnosed with congenital muscular dystrophy at age 4 (specified as Ullrich CMD many years later), but I was always aware of my disability. I recognised that I was different from my peers – I was unable to walk, run and climb steps. I also looked different – I was very thin as a child, I had contractures and scoliosis causing asymmetry of the torso.
My parents told us that I have something called muscular dystrophy, meaning I have much weaker muscles than other children. At that age, this was enough knowledge for me.
For many years, when other children would ask the inevitable question, ‘what’s wrong with you?’
I would simply answer, ‘I’ve got muscular dystrophy so I can’t walk like you’.
Whenever and however you decide to approach this, I would urge you to emphasise above all else that your child is loved and supported by you and your family. Sometimes the comfort of a loving hug from your parents is all the reassurance you want and need.
– Do your research: Unlike when I was a child, these days there are many reliable resources of information. Of course, ask any medical professionals your child is seeing, including consultants, physiotherapists and occupational therapists. However, I will say that not all children with the same form of muscular dystrophy will experience exactly the same symptoms or at the same rate. For this reason, I recommend talking to those directly affected, such as other parents and adults with muscle-wasting conditions who, like me, have a lifetime of experiences to draw from.
– Always trust your instincts! As the saying goes, a mother knows best. This has certainly proved true in my case. My mother, noticing my delayed progression as a baby, sought medical help and was told she was an “over-reactive mother”. Thankfully, she persisted and met with a neuromuscular specialist who almost immediately identified my condition.
– Ensure your child receives the Flu vaccine EVERY year, as well as the pneumonia vaccination. You, as primary caregivers, will also be eligible for the Flu vaccine – take it!
Some children are diagnosed well before they reach nursery age, whilst others like me, will have already started school when they learn they have a muscle-wasting condition.
– Starting school can be daunting for any child: Being parted from their parents, away from home and surrounded by lots of unfamiliar faces. But for a child with a disability like muscular dystrophy, this transition can be even more challenging.
– Particularly in this day and age, there is no reason why a child with a muscle-wasting condition shouldn’t attend mainstream school. However, you must consider your child as an individual and decide whether or not you feel this would be best for them. Indeed, your child may have a preference. Some would rather attend a school for special educational needs.
– I suggest making several visits to any nurseries or schools you have shortlisted. Check that everywhere is fully accessible. One visit is not enough as we often forget to ask certain questions and fail to spot things on first impressions.
– It is essential to ensure staff are fully aware of your child’s needs and abilities. Meet with the special educational needs co-ordinator (SENCo) well in advance and if possible, meet and introduce your child to their new teacher and *teaching assistant/support worker (*where applicable). This will help them feel more comfortable and confident when their first day of school arrives.
– Ask your child’s physiotherapist and/or occupational therapist to visit the school and meet with staff to share their knowledge and expertise.
– Be positive, be optimistic, be encouraging. BUT don’t make promises you can’t keep: As your child grows and interacts with other children, they will become increasingly aware of their differences. This will inevitably lead to questions. They may ask why they can’t stand, walk or run like their friends. Furthermore, if your child has a progressive form of muscular dystrophy, they may ask you if their symptoms will get worse as they get older.
For instance, I was able to walk short distances until the age of 10. We were never told if I would continue to do so as I grew. Therefore, I would often ask, ‘will I always be able to walk or will I have to use a wheelchair?’
I appreciate why many parents would be reluctant to overshare and reveal what the future may hold in terms of deterioration, in fear of scaring their child. However, I feel strongly that it is important to be honest and unambiguous. If you don’t know the answer, say you don’t know. Don’t try to comfort your child by telling them it will all be okay and things will not get worse. Knowledge and preparation is power!
– For most children with muscular dystrophy, the biggest changes occur during puberty.
– Growth spurts put extra strain on weakening muscles.
– If able to weight-bear, your child could lose this ability resulting in the need for a wheelchair.
– It is likely that your child will accept having to use a wheelchair more than you. Children are very adaptable. From personal experience, I can tell you that using a wheelchair is a great relief compared to exerting all your strength, energy and reserves on standing and walking. A wheelchair offers mobility and freedom. So please keep this in mind.
– Growth also leads to contractures becoming more severe. Regular physiotherapy (ie. stretching) will help maintain flexibility and movement.
– If untreated, spinal curvature (scoliosis) will increase resulting in asymmetry of the torso, a tilted pelvis, pressure sores and discomfort.
– Scoliosis, along with muscle deterioration, impacts on respiratory function. Should your child feel overly tired, nap during the day, or experience regular headaches, particularly on first waking, you must see a specialist respiratory consultant. It might be necessary to introduce noninvasive ventilation nocturnally.
– Noninvasive ventilation (NIV) comes in the form of either a CPAP or BiPAP machine (usually the latter).
– Bilevel positive airway pressure (BiPAP): a face mask is worn (many different styles are available) and air is delivered from a machine through a tube to support breathing.
– Other respiratory equipment your teenager may benefit from, especially when ill: Nebuliser and cough assist machine (seek advice and information from your respiratory consultant and respiratory physiotherapist).
Other Family Members
Some forms of muscular dystrophy are inherited. This can obviously be a concern if relatives are planning families of their own.
A few years ago, my brother and his wife decided they wanted to have children. Because of my condition, he asked his GP to refer them to a genetic counsellor. They took with them a copy of my medical record.
In their case, it was determined that my brother is highly likely to be a carrier, while his wife is highly unlikely. Once pregnant, they were offered a test which involved inserting a needle into the developing embryo to ascertain if the baby would have muscular dystrophy. They decided against this due to the invasive nature.
I’m happy to report they now have a happy and healthy baby boy.
How to cope
As a parent, it is understandable that you will focus all your thoughts and energy into your children. Raising a child with muscular dystrophy brings with it many more challenges and emotional turmoil. This can have a huge affect on you, your health and relationships. It is therefore crucial to take care of yourself too.
Remember, it is okay to cry, scream and shout! There will be times you struggle, lose your patience and indeed you will have to fight your child’s corner in different situations.
It’s good to talk: whether you choose to confide in relatives, friends, fellow parents of disabled children, or healthcare professionals – don’t bottle up your concerns and frustrations. This will ultimately have a negative effect on your wellbeing and your family.
Make time for yourself:‘what time?!’ – I know, I know. I appreciate that caring for a child with any disability is a full-time job. But you must allow yourself some form of relief. Even if it is just dedicating yourself to an hour or two with friends for coffee each week. You need space. Your child needs space. It will be good for all of you – trust me!
If you have any specific questions, please leave a comment or contact me directly. I am more than happy to talk privately.
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