Carers Rights Day

Life with PAs

I have Ullrich congenital muscular dystrophy, and consequently require support from carers.

For over a decade, I have been hiring assistants (via Direct Payments) to help me with an array of tasks, including personal care.

I prefer to recruit my own staff rather than use agency workers. This has given me much more flexibility in terms of when, how and for the duration of time I use my PAs. It also means that I know exactly who will be providing my care, which is not always the case when going down the agency route. However, with this comes the added responsibility of being an employer, which in itself can be rather daunting and stressful.

I’m in the fortunate position of having a hugely supportive family who provide much of my everyday care. Since I live with my parents, I am unable to officially employ them as my carers, and so they carry out this role unpaid!

I do appreciate that not everyone has relatives to rely on. For these individuals, the only option is to pay others, often strangers, to assist with their care needs.

Like me, they might advertise, interview and hire independently, paying for their care with council funded Direct Payments (available in England, Scotland and Wales). Alternatively they may decide to use an agency.

For others though, in times of desperation, there’s no choice but to leave their residence and spend time in respite care. I know of cases where young people in their 20s have been placed in nursing homes for the elderly, where staff have no knowledge or experience of their condition and specialist needs. Personally, I can’t imagine such an experience and count myself lucky that I’ve never had to resort to this.

Over the years, I’ve employed around 10 carers/personal assistants, and interviewed many, many more! The most successful sources of recruitment for me are friends, neighbours, word of mouth and Facebook, though I also advertise locally (newsagents, post office, school newsletters, newspapers, etc).


Carer’s Allowance

If you are a full-time carer (at least 35 hours per week) you may be entitled to Carer’s Allowance.

You don’t need to be related to, or live with, the person you care for.

My Mum is in receipt of Carer’s Allowance (currently £64.60 per week) as she is my primary carer.

This may seem like a decent sum of money, but consider ~

£64.60 = 35+ hours care work. That equates to £1.80 per hour

This doesn’t include expenses, e.g. fuel/travel costs, parking fees (hospital appointments), etc.


My Open Letter to Carers/PAs

On behalf of all who require personal/social care, I invite anyone considering taking on the role of carer/personal assistant to think carefully about what it really means before you do apply.

Firstly, this is not a choice for us – it is a necessity! We’re not too busy or too lazy to do things for ourselves. When we advertise for carers, it’s because we NEED them and not necessarily because we want them.

As physically disabled individuals, many of us cannot independently carry out essential everyday tasks such as washing, dressing and toileting. To have no option but to entrust such intimate activities to another person – a stranger – is unnatural and unnerving. We are, in effect, placing our lives in your hands when you take on the vital role of personal carer.

Recruiting carers can be a lengthy and extremely stressful process for us. There’s the initial worry over whether there will be any applicants at all, followed by the dreaded interview process.

We often find ourselves waiting around for interviewees to attend, only for them to carelessly fail to show without any notification.

Please do bear in mind that disabled peoplehave busy, purposeful lives too, sodon’t waste our time. We appreciate there are valid reasons for failing to attend job interviews, but it’s no hardship making a quick phone call or sending a text message to let us know in advance.

As you would with any potential employer, be professional and courteous.

If and when we are able to successfully recruit, it can be incredibly frustrating and disheartening when that person flippantly decides to resign days later. You may wonder how and why this occurs, but the sad fact is that for many disabled people it is a reality. We are not afforded the luxury of being able to manage until a replacement is found. No, we can’t simply wait for the right person to show up.

Some of us even have to resort to respite and residential homes in the meantime, thereby taking us away from our own homes and everything we hold dear. Try to imagine if you will, how demoralising and distressing such a situation would be if it happened to you. I therefore reiterate how important it is to think before applying for a role as a personal carer.

Are you dedicated, trustworthy, reliable, able and willing to learn? Ask yourself: are you considering care work for the right reasons? (it is not an easy option!)

Your role as PA may be demanding and will involve a variety of tasks. You will be responsible for the safety and wellbeing of your potentially vulnerable client/employer.

So, if your attitude to care work is casual and indifferent, this is most definitely not a job for you!

#CarersRightsDay2018

World Toilet Day

19th November 2018 ~ #WorldToiletDay

I am 30 years old, and I have the progressive condition, Ullrich congenital muscular dystrophy. As a result, I am completely non-ambulant. I use a powered wheelchair and am unable to transfer without the use of a hoist and support from carers.

Imagine being denied the basic human need to go to the loo; being unable to access a toilet whenever you need to. Imagine having to hold in the urge all day, every day. Having no choice but to strictly limit your fluid intake to the point where you cannot risk drinking from morning until evening. Living with dehydration, impaired mental function and recurrent infections, simply because adequate toileting facilities are not made available to you.

#FitToBurst

This was my life until 2011, when I underwent medically unnecessary surgery to insert a suprapubic catheter. Of course, I didn’t want an operation, a General Anaesthetic (in itself a huge risk due to my poor lung function) or an indwelling catheter. By no means is this an easy fix, believe me! But I just couldn’t do it anymore; I was making myself ill and relied on assistance from others in order to carry out the seemingly simple task of toileting. No longer could I inflict undue stress on my body and mind.

So, I resigned myself to the only option available to me at that time; a suprapubic catheter. With this, I no longer need to transfer from my wheelchair or depend on other people. I don’t have to struggle and suffer the indignity of using small, dirty and ill-equipped public disabled toilets. But, 250,000 disabled people in the UK still do.

Often, there is not enough room to fit a wheelchair in a disabled toilet, let alone space to transfer, adjust clothing and accommodate a carer too. Baby changing facilities get in the way, grab rails are too few and carelessly installed, the toilets themselves are too low, and hoists…what hoists?!

The majority of disabled toilets I have used throughout my life have been vastly inadequate, filthy, often neglected or used for storage!

I think it’s important that there are Changing Places facilities everywhere, including smaller towns, villages and rurally as there are many disabled people (like me) resident in these locations too.

#incLOOsion

The lack of such essential facilities locally makes me feel restricted, excluded from society and considered less important.


The 19th July 2017 marked the second Changing Places Awareness Day and eleven years since the campaign began.

Each registered Changes Places toilet includes:

1. – a height adjustable adult-sized changing bench

2. – a tracking hoist system, or mobile hoist where not possible

3. – adequate space for the disabled person and up to two carers

4. – a centrally placed toilet with room either side

5. – a screen or curtain for privacy

6. – wide tear off paper roll to cover the bench

7. – a large waste bin for disposable pads

8. – a non-slip floor


Join the #RevoLOOtion!

Interview | Shane Burcaw

Shane Burcaw is a high-profile, 26 year-old American writer, public speaker and charity founder. He has documented all aspects of his life with spinal muscular atrophy with candid humour, thereby informing and inspiring others whilst also influencing the public perception of disability.

Burcaw has been commended for his ongoing determination, sincerity and ability to raise awareness of often uncomfortable issues, in a sensitive manner.

Shane kindly took time out of his busy schedule to speak with me about life with SMA, what motivates his work, and why personal care doesn’t affect his relationship with able-bodied girlfriend, Hannah.


1. Shane, please could you tell us about your disability and how it affects you and your lifestyle?

I have Spinal Muscular Atrophy Type 2, but I’m on the weaker end of the Type 2 spectrum. SMA is a neuromuscular disease that causes my muscles to weaken and waste away over time. I’ve been using an electric wheelchair since the age of two. In a nutshell, my disease affects every single function of the body that involves muscles. I can barely move my legs, arms, and hands. I have difficulty swallowing, speaking, and breathing (especially when sick). Because of this weakness, I rely on other people for pretty much every aspect of daily life, from getting out of bed, to eating, to going to the bathroom. Luckily, I’ve been surrounded by incredible people who have always been there to help me, and because of that, I’m able to live a fairly “normal” life, with a career, a variety of hobbies, and frequent traveling for both leisure and work. I live with my girlfriend, Hannah, in Minneapolis, and she is my primary caregiver.

2. What motivates you to do the work you do (writing, public speaking, raising awareness through social media and your charity LAMN) and how do you find the energy?

My disease is progressive, so my condition and abilities deteriorate over time. I learned at a young age that many people with SMA pass away at a younger age than the average, and that realisation instilled in me some sort of existential determination to leave a mark on the world. Some might call it vain, but I was terrified by the prospect of dying without having done anything to be remembered for. I began sharing my story through funny blogs and later books, and working hard to grow a non-profit organisation that provides free equipment to others with my disease. Coffee is really the only way I’m able to balance writing, the non-profit, blogging, vlogging, and public speaking!

It should be noted that two years ago, the first-ever treatment (Spinraza) for my disease was discovered and approved. I began receiving it at the age of 25, and it’s supposed to stop the progression of my muscle-wasting. This has been a huge development in my life, both physically and mentally, and I’m still coming to terms with the fact that my future might be much different than I originally imagined.

3. Could you please tell us about Laughing At My Nightmare (charitable organisation) – how it all began, aims and objectives?

Our non-profit grew out of my blog that I began writing in 2011. People from all around the world felt an authentic connection with the idea that humour can help us cope with adversity. My cousin Sarah and I co-founded LAMN as a way to spread that idea to more people, and along the way we began raising funds to provide equipment to the muscular dystrophy community. In the past three years we have provided over $150,000 in medical and adaptive equipment to people living with muscular dystrophy.

4. In 2014, you wrote your first book. A memoir also entitled, Laughing At My Nightmare. Two further books followed. Who are your books aimed at and can readers expect?

Both of my memoirs (Laughing at My Nightmare, 2014; Strangers Assume My Girlfriend Is My Nurse, 2019) are about funny experiences I’ve had, from my early school years into adulthood. Strangers is more about society’s flawed perceptions of disability. My children’s book (Not So Different, 2017) answers the most common questions that kids ask about my disability and my wheelchair.

5. In the past, you have faced criticism from some in the disabled community. The terms ‘inspiration/pity porn’ have been used. Can you explain why this is and how you feel about the backlash?

Living with SMA can, at times, be extremely difficult from an emotional/mental standpoint. Experiencing the slow decline of ability through my adolescence and coming to terms with my future and my place in society was not always a bright, cheery process. My writing has always been an authentic reflection on my thoughts and experiences, so I wrote honestly about my fears and challenges. When my story began to receive attention on a larger scale, there were some people in the disabled community who didn’t agree with my sharing of these intimate worries. People accused me of playing up the negative aspects of my disability for attention, while others thought I was exploiting my life in an attempt to be “inspiring.”

I’m glad that people spoke up with their criticism. Although my writing has always been overwhelmingly positive, their feedback helped me reflect on some of my fears about getting worse and dying. Getting involved in the muscular dystrophy community has been such a positive thing for me, and they’ve helped me reframe my outlook on a personal level, which, in turn, has changed how I write about my disease. We are all learning and growing together!

6. Has your attitude to disability, your own in particular, changed over time?

Earlier in life, my biggest concern was minimising my disability for the sake of appearing “normal.” As I’ve gotten older, I’m less concerned with fitting in, and becoming more passionate about embracing my disability and changing the way society sees disability.

7. You have been with your able-bodied girlfriend, Hannah, for over two years. If you are comfortable doing so, would you please share with us how you met and a little about your relationship.

Hannah and I live together in Minneapolis, and she has been my primary caregiver for the past seven months. After doing two years of long distance, we are both happier than we’ve ever been now that we are permanently together. Like all couples, we have the occasional disagreement, but by and large we don’t feel like the caregiving aspects of our relationship create a strain. In fact, we both agree that these caregiving activities help strengthen our emotional connection.


I would like to thank Shane for taking the time answer my questions.

I hope you enjoyed reading this interview.


Twitter: @LAMNightmare

Website: Laughing At My Nightmare

YouTube: Squirmy and Grubs

Instagram: @shaneburcaw

Ambulance Action

Improving Emergency Care for people with neuromuscular conditions

One of many campaigns fronted by Muscular Dystrophy UK is the #AmbulanceAction campaign. MDUK are working alongside health care professionals and people, like me, with neuromuscular conditions to improve emergency care in the West Midlands and Northern Ireland.

Since I am resident in the West Midlands, I was invited to be a part of this long-running campaign.

👆 See above to read my response to the latest developments in Oswestry.

To find out more about the MDUK #AmbulanceAction campaign, click here.

You might also be interested to read my previous blog post – Emergency Care: My Experience.

Disability & Identity

I was recently invited to participate in a Quality of Life Study, conducted by students at Sheffield University. The ‘Living Life to the Fullest’ research project is aimed at young people (18-30) with life-limiting or life-threatening impairments.

Although data provided by participants is anonymous, I thought the questions asked, along with my personal perspective, might be of interest to some of you.

Below is an extract from my interview. I’d be really interested to know your views and how you might answer…


Do you think the general public hold an accurate understanding of disability? Why or why not?

No, I don’t. I think people who have never had any particular connection or interaction with disabled people lack the knowledge, experience and empathy required to hold an accurate understanding of disability. Furthermore, I think there’s a lack of awareness of how diverse disability is and how many people it actually affects.

I also think people’s perceptions of disability are heavily influenced by the depictions they see in the media. Depictions of disabled people played by able-bodied actors can be very misleading for various reasons. Quite often these portrayals are ‘airbrushed’ and sentimentalized.

The next topic is about your relationship with yourself. Do you have a strong sense of identity? What factors contribute to your identity?

I’m really not sure to be honest. I guess that implies that I don’t have a strong sense of identity. I’ve never really given this question much thought.

I’m not a fan of labelling or categorizing people. At the end of the day, we are all very different, unique individuals.

I guess, in the simplest terms, I am a daughter, a sister, an auntie and a friend. Despite the fact that I often blog about certain aspects of my life, I am actually a very private person who prefers to remain anonymous (or at least, as anonymous as possible).

I identify as somewhat of an introvert. I am incredibly insecure and self-conscious (painfully so) due to my physical disability and the presence of my powered wheelchair. I do feel like people look at the chair before they see me.

I’m very much aware of how different I look compared to ‘normal’ able-bodied people, and how others view and perceive me because of this. I think, because I am so lacking in confidence, my sense of self and identity is negatively impacted.

I am much better at thinking, talking about and dealing with other people and their problems versus my own!

Do you identify as disabled? Has this changed over time?

Yes, I do identify as disabled, though my disability does not define me as a person. I have no problem with the term, nor being referring to as a disabled person. It is simply a matter of fact. In the same way I would describe myself as a white, British female, I am also physically disabled.

I have Ullrich congenital muscular dystrophy. There is no hiding or escaping from it, therefore I choose to accept and embrace it.

Since I began blogging, I have noticed a lot of discussion, within the disabled community, regarding the topics of terminology and semantics. There are those who take offence at being identified as, or even labelled ‘disabled’. Some may prefer terms such as ‘differently abled’. (Personally, I find this descriptor a little ridiculous and would never refer to myself as ‘differently abled’). Then again, there are those who don’t consider their impairment to be a notable part of their identity at all.

My view on this has remained consistent throughout my life. My condition is congenital, meaning that I have lived with it from birth and have always been aware of it. I am disabled. In all honesty, I really wish I wasn’t! But the fact is, I am. To me, there’s really no point in denying or ignoring this part of my identity.

You’ve mentioned your thoughts around how others perceive you and how you therefore perceive yourself. Does how you think others perceive you (or even how you perceive yourself) change depending upon context (e.g. at work; with family; with friends)?

I think the way others perceive me varies depending on context. If I’m out and about amongst the general public – for example, shopping with friends – I do notice looks and stares from strangers. It can be bothersome. Some people are so indiscreet and don’t think twice about glaring!

Complete strangers have approached me in the street, clearly feeling entitled to pass judgement and make offensive and inappropriate comments regarding my disability. For instance, a man once asked if I believe in God. Put on the spot (and obviously quite shocked) I hastily answered, ‘no’. He then told me that is the reason I am in a wheelchair!

However, for the most part, I don’t take offence at people looking or staring, so long as they are respectful. I appreciate that by nature, people are inquisitive. All of us, myself included, are curious about anything considered different or not the norm. For this reason, I will happily answer disability-related questions from people who are polite and considerate.

I can’t speak on their behalf but in general, I think (or assume) my family don’t even see my disability. I’m just Carrie. The only time it really smacks them in the face (so to speak) is when I get ill.

In terms of how I perceive myself, I think this is fairly consistent regardless of context. I am very self-deprecating and self-critical. Essentially, I have always wanted to fit in, especially during my school years. I want to be able to do all the things able-bodied people can. I want to be independent, to drive, to walk, to run, to be spontaneous and do things without having to plan or rely on others.

This research project is about young people with ‘life-limiting’ or ‘life-threatening’ impairments ( LL/LTIs), the next questions surround living with that.
What does ‘life-limiting’ mean to you?

I consider myself to have a life-limiting condition (Ullrich congenital muscular dystrophy). I have come to terms with the fact that my disability will inevitably impact how long I live. Although people with the same condition are now living longer thanks to various treatments and medical intervention, life expectancy is still much shorter than the average person.

I dread winter and all the viruses circulating throughout the community. Every time I get a cold it leads to a chest infection. For me this is very serious since it often develops into a more complex issue. Many times over the years, I have been admitted to hospital with respiratory complaints including pneumonia, pneumothorax (collapsed lung) and pleurisy.

*I did elaborate further during my interview, though for personal reasons, I have chosen not to include the rest of my answer here.

Does this impact any decisions you make?

YES! All of my decisions. I had a particularly bad bout of pneumonia in 2013. It took many months for me to recover and was incredibly difficult to overcome, both physically and mentally. At that point, my priorities changed.

Up until then I had been pursuing my aims of moving out of my parental home, and finding employment….but after realising how fragile my body actually is, I decided to end the lengthy quest for accommodation – an incredibly stressful quest that I had been struggling with for over two years, without assistance!

My primary focus now is health and happiness. I have to do what is best to protect and care for my body.

*I have chosen to remove parts of my original answer to this question.

Do you feel like it is important to set goals? And does anything stop you from doing this? Are your goals are shaped by what support is assumed to be/not be available or by the support you currently receive?

My mother keeps encouraging me to set goals, like aiming for at least one holiday per year. She wants me to make the most out of the time I have – however long or short – which I understand and agree with.

In August 2017, my first nephew was born. This has been the biggest motivation for me to keep going – to pursue good health, happiness and to embrace life!

I am so much happier since he was born – everyone has noticed. I often say, I hope to live long enough to see him grow up. I want most of all for him to remember me. So this is my biggest goal.

This question is rather pertinent as I currently have only one part-time PCA (personal care assistant). She is very young and hates driving my wheelchair accessible vehicle. As a result, I feel very isolated and excluded from society. I would like to be able to get out, to meet friends and go to events. But right now I am unable to, as I don’t have the support in place.

You have talked about not being able to get out of the house. Would you say you ever feel lonely or that you miss out because of your disability?
Do you miss out more because of your own health problems or accessibility issues?

Yes, definitely. There are times I feel lonely even though I am by nature quite a solitary person. I am more than happy with my own company – it’s a good job, really!

I’m not a fan of social media at all. But like it or not, for me it is a lifeline. Without it, I would feel incredibly isolated. I mostly use Facebook Messenger in order to stay in touch with friends and to meet others in a similar position to myself.

Health problems as well as accessibility issues contribute to missed opportunities. So many times I have made plans, then had to cancel due to ill health – usually chest infections. Because of this, I am now very reluctant to make future plans for fear of disappointment.

For example, I finally managed to book tickets for the Strictly Come Dancing, January 2017 tour. I was so excited and had looked forward to it for months. I then caught a severe chest infection and was unable to go. It may sound dramatic but I was gutted. I had tried to get tickets for years but couldn’t, as the limited accessible seating was always sold out.

What worries you about your future with a complex condition? What would you say is your biggest worry?

I worry most about my health and my ability to fight respiratory illness. As a kid, when I got a chest infection I would need a course of antibiotics and a week off school to recover. However, as I have aged, the duration of these illnesses has gradually increased. They have become much more complex to treat too. These days, it takes everything I have to overcome a chest infection. I worry about how many more times I am able to do it and therefore what I might miss out on in life.

How has your family been impacted (for better or worse) by your disability? For example, has it affected them financially or affected your relationships with them? How do you feel about this?

Wow – there is no end to how much my family has been impacted by my disability!

Yes, very much financially. For one thing, I have a ground-floor bedroom/bathroom extension that was built in 2000. Back then, my parents’ income was assessed. They were entitled to a partial grant, though this was a very small sum. In order to fund the build, they had to take out a second mortgage.

Holidays are MUCH more expensive than they would be for the average family. Medical insurance and the need for accessible accommodation, plus equipment hire makes vacationing rather costly.

Essential mobility equipment such as manual and powered wheelchairs are a huge expense!

Furthermore, my parents are affected physically (owing to many years of lifting and manual handling) and emotionally. Obviously they are aware of the fact that my condition is life-limiting, even though this is not discussed. When I am hospitalised, my whole family experience a great deal of distress.

Relationships are inevitably affected. At the age of 29, I still live with my parents in their home, and we are very much in each others pockets. They remain my primary source of support. I am unable to escape when disputes occur – to go for a walk or a drive in order to ease tension and let off steam. This I find incredibly frustrating.

What makes for a good community in regards to disability?

I’m really not sure how to answer this question. Sadly, I don’t think this can ever be fully achieved, as there will always be prejudice, ignorance and exclusion. I think crucially, there needs to be greater awareness, familiarity and education so that disability becomes part of the norm. We need to work in unity to break down barriers and make disability socially acceptable.

How do you feel about dating with a disability? Do you think it is harder when you’re disabled?

It is definitely harder with a disability – or so I have found. I think one of the biggest obstacles is the initial meet and greet stage.

We (disabled people) face assumptions, social prejudice and environmental limitations e.g. Access to buildings and public transport – thus making dating all the more challenging. Then there are our own physical limitations.

I am completely non-ambulant, I have contractures, a severe scoliosis and overall muscle degeneration. These physical limitations have made me overtly self-conscious, socially awkward and anxious when meeting new people.


Thanks for reading! If you found this interesting, leave a comment and share so that others can join in the discussion.

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Interview | Life with my Assistance Dog

“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.

For more information about assistance dogs, visit the Canine Partners website.

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Guest Blog | NewCaregiver

This guest blog comes to you courtesy of Harry Cline, who is the creator of NewCaregiver.org and author of the upcoming book, The A-Z Home Care Handbook: Health Management How-Tos for Senior Caregivers.

As a retired nursing home administrator, father of three, and caregiver to his ninety-year-old uncle, Harry knows how challenging and rewarding caregiving can be. He also understands that caregiving is often overwhelming for those just starting out.

He created his website and is writing his new book to offer new caregivers everywhere help and support.


The Best Technology For The Visually Impaired

Photo via Pixabay by Hans

With all the technological advances these days, it’s easier than ever to find ways to make everyday life run a little more smoothly when you’re living with a vision impairment. From various products that support braille to low-vision magnifiers, there are companies that provide several items that will help you be as comfortable as possible in your home.

Here are some of the best pieces of technology to aid you in everyday life:


Braille notetakers

Work in Word, Excel, and PowerPoint and view PDF documents using a notetaking application that utilizes braille.

Reading machines*

Scan printed material and have one of these machines read it to you. You control the speed of the speech and the volume, and have your choice of different models that have CD options and the ability to read through text by word, sentence, paragraph, or page and change the reading voice. The Poet Compact2 is a popular solution. It doesn’t even require a computer.

Braille label maker

If you have a vision impairment, it’s important to organize your home in a way that both makes sense to you and will help you stay safe and comfortable. One of the best ways to do this is to use a braille label maker to keep areas like the kitchen and pantry neat and easy to navigate. Label shelves, drawers, or individual items in several different areas of the home.

Magnification products

If you have issues with low vision, consider investing in a magnification product that will make it easier for you to read, watch television, and work on the computer. There are several different models and magnification strengths depending on your specific needs.

Braille money identifier

It can be difficult to handle paper money when you have a visual impairment, but there are several products on the market now to help sort bills and keep your cash safe, such as this braille model.

Braille compass

Getting around is made much easier by the use of canes and a braille compass, which can be of use when you’re out for a long walk or simply want to find your way around the city easily.

Special eyewear

According to the American Foundation for the Blind, there are now special eyeglasses for those living with low vision that digitally enhance the viewing field using a high-definition camera. This technology is mobile and hands-free, and works for both near and far vision.

While it never hurts to get some outside help for living comfortably with a visual impairment, technology has made it much easier to do so on your own.


Source material: organize your home and braille model


I would like to thank Harry Cline for taking the time to write this guest blog.

Life Update | Hospital Admissions & Disability

Thursday 8th March marked International Women’s Day 2018. For me, it was spent in hospital (Russells Hall, Dudley) undergoing minor surgery. Could be worse, I suppose!

Due to the fact I have Ullrich congenital muscular dystrophy (a muscle-wasting condition), people are often horrified when I tell them how many general anaesthetics I’ve endured throughout my life (at least 10 – honestly, I’ve lost count!).

Although it is obviously best avoided, I’ve personally never encountered any problems or complications as a result of general anaesthesia.

I’m a big believer in knowing your own body and what you, as an individual, are able to withstand. When undergoing any form of surgery, communication is key – particularly when you have a disability.


A Few Tips:

Go prepared: Take all relevant documentation to your pre-operative assessment(s), including names and contacts for all the medical professionals you see regularly.

Meet with your surgeon(s) and anaesthetist: It is not always common practice to see your anaesthetist prior to surgery, but in my case it is essential. Explain your specific requirements and concerns, and don’t be afraid to ask questions.

Ensure everything is in place prior to your admission date: If, for example, you use a Bi-pap or C-pap machine (non-invasive ventilation), tell your medical team – nurses included. Make sure they know your settings and have your NIV machine ready for you to use post-operative.


I usually discharge myself on the day of surgery or, as soon as I know I’m well enough to manage at home (again, I hear you gasp). Anyone with a disability who has spent time as an inpatient will appreciate why I prefer to escape as soon as physically possible.

Don’t get me wrong – I cannot fault the care and conscientiousness of the doctors and nurses. I am a big supporter of the NHS and frankly, I would not be here today without it.

However, the sad fact is, hospitals in the UK are not equipped for those of us with disabilities and complex care needs. Trust me – having been admitted many times, to various hospitals, for various reasons – I am well versed!

On this particular occasion, it was necessary for me to stay in hospital overnight. My Mom was with me all day but went home at around 7pm when it became apparent that I was unfit to leave. This essentially left me alone and stranded in bed (one that didn’t work!), unable to move, reach or sit myself up.

I couldn’t and wouldn’t expect Mom to stay with me all night, in order to assist with my physical care needs. She herself has recently had a full knee replacement and was exhausted.

After a long, uncomfortable night spent clock-watching, I was incredibly relieved when my folks returned at 11am on Friday to take me home. My home is set up for my care needs. Unfortunately, hospitals are not.


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Interview | YouTuber Shelby Lynch

20 year-old Shelby Lynch is an up-and-coming YouTuber from England, who happens to have a muscle-wasting condition similar to myself.

She was recently kind enough to chat with me about her disability, life as a YouTuber and her involvement with the Missguided #KEEPONBEINGYOU campaign.


1. Could you please tell us about your disability and how it affects you?

My disability is called SMA (Spinal Muscular Atrophy). This causes my muscles to become weaker over time. I have a curve in my spine (scoliosis) and am unable to walk, so I use a powered wheelchair to get around. I also need to use a ventilator 24/7 to help me breathe.

2. What have you found to be the biggest challenges of living with your disability?

The biggest challenge of having a disability is having to rely on other people to do things for you. My daily life is affected – I need help with simple things like getting around, eating and personal care. I’d love to be able to do my own hair and makeup.

Also, not having as much independence as someone my age should. Independance for me is key.

3. What, if any, do you feel are the positives to having a disability?

There are a lot of perks! For me, the biggest positive that comes with having a disability is getting to skip the queue for certain things. Sometimes I can get free access to certain places too. But then others do take the piss and charge disabled people more than they would an able-bodied person.

4. Can you please explain why you decided to become a Youtuber?

I wouldn’t say I’m a successful YouTuber but if I’m helping people in a certain way then that’s cool. I started watching YouTube around four years ago. I thought it looked really fun so I decided to make a channel too. On my channel I talk about fashion, beauty, lifestyle and my disability.

Really, I just want to have fun with it to be honest. I want to show people that I’m just a regular 20 year old who enjoys doing what other people like to do. Whether it’s going to concerts or hanging out with friends.

5. Do you consider yourself to be an inspiration?

No, I don’t consider myself to be an inspiration unless I have done something to impact people. People usually call me an inspiration just because I’m disabled but to me, that’s not right.

6. Can you talk about your involvement with the Missguided campaign, and what it means to you?

I saw their campaign on Instagram and really liked the fact they were showing different types of people. So, I took a picture of myself wearing one of their jumpers, and used the hashtag #KEEPONBEINGYOU.

Only a couple of hours later they had reposted my picture. It was so overwhelming receiving so many nice comments from people I didn’t even know. Then somebody from Missguided contacted me, offering to send some clothes, and asking if I would like do a mini photo shoot and video for their campaign which felt like a dream!

Working with them was absolutely incredible! When they asked me if I would join their campaign I was over the moon. It was such a great start to the week. I was a bit nervous as I have never done anything like this before.

But Missguided is a brand that I actually love. And I feel like their clothes are different to any other fashion retailer. The clothes make me feel confident and cool, so getting to work with them was a dream come true.

In addition, it’s great that they aren’t afraid to break barriers by showing some diversity in their campaign. This is something I personally respect so much.

In my caption for my picture I spoke about how disabled people aren’t often seen as pretty or sexy because of their disability, and that’s not the case. We should feel empowered no matter what.

– “Keep On Being You means to be confident in your own skin, and not letting anyone in life tell you that you can’t do anything.”

I hope they ask me to work with them again as it was so much fun and they are certainly leading the way in showing diversity as a fashion brand.

Find out more about Shelby’s involvement with the Missguided #KEEPONBEINGYOU campaign here.


Follow Shelby:
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Youtube channel

Pinterest

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          I’d like to thank Shelby for taking the time to speak with me!

Muscular Dystrophy | A Guide for Parents

*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.


About Me

– 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.


My Advice

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.


Diagnosis

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.

Ullrich Congenital Muscular Dystrophy

Infancy

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!


Starting School

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!


Teen Years

– 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).

BiPAP Machine
NIV Face Mask

 


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.

If you like this blog post, I would be grateful if you would share so that others may learn from it.

Thank you!