Wheelchair Services ♿

Following on from my last blog post, I’m happy to report that Friday’s appointment with wheelchair services (Wychbold, Droitwich) was surprisingly beneficial.

Admittedly, I had low expectations based on previous experiences. But the occupational therapist (OT) I met with was extremely helpful and conscientious.

I now have a long list of information and various options to consider.


I went prepared with some notes, outlining my needs.

Thus far, I have looked at various wheelchairs online and test drove the Quickie Salsa M2 Mini and the Quickie Jive M (both by Sunrise Medical). Sadly, neither of these chairs met my requirements.

The Salsa M2 Mini is an ideal size but not so great outdoors (compared to my current Quantum 600). The Jive M was just too big for my home.


Me in my current Quantum 600 powered wheelchair

Whilst at the appointment, I was shown the Invacare TDX. Before it was even measured, I could see it is far too big, more so than my current chair, and wouldn’t fit around my home.

So that’s one more crossed off the list!


Voucher vs NHS wheelchair?

The last time I approached wheelchair services was 10+ years ago. That appointment was brief and frankly a waste of time!

I was offered a voucher with a value of no more than a few hundred pounds. A lot of money you may think. But when you consider powered wheelchairs cost from £5000 upwards, (between £10-20k is more accurate), a few hundred quid doesn’t go far.

The only alternative to this was one, very basic, very inadequate NHS wheelchair – I suspect unsuitable for most people.

Thankfully since then, things seem to have improved greatly (around here, anyway).

My current options are:

– A voucher with a prescriptive value of approx £2000

– Accept one of the approved NHS chairs (none of which feature the rise function that I need)

– Accept a more compact mid-wheel drive (MWD) NHS chair for indoor use, and privately purchase a second wheelchair specifically for outdoor use (worth considering as I live rurally)

Right now I think my best bet is to take the voucher and choose my own wheelchair. Mainly because I do require both the rise and tilt functions. The NHS will only approve the latter.


What now?

– Attend NAIDEX (April 25-26th). I will be able to see many different wheelchairs and discuss my options with specialists. Trust me you need to see and try them before committing to anything. You can’t base a decision on images and information on a computer screen.

– Investigate options I had not previously heard of, including: Ottobock and the YOU-Q Luca by Sunrise Medical.

– Contact Sunrise Medical directly and ask them to visit my home with demo wheelchairs to view and test-drive.

– Ask Sunrise Medical for a list of reputable dealers.


Once again, I will keep you updated of any developments.

Thanks for reading!

Wheeling Through Life | A Brief History

From birth, I have lived with the rare condition Ullrich congenital muscular dystrophy.

It is a progressive, muscle-wasting condition caused by mutations in the COL6A1, COL6A2 and COL6A3 genes.

It is typically inherited in an autosomal recessive pattern (both parents are carriers of the mutated gene). However, in rare cases it can also be inherited in an autosomal dominant pattern (where only one parent has the affected mutated gene).



It frustrates me that so few people, medical professionals included, have heard of Ullrich congenital muscular dystrophy. In my experience, those who are familiar with muscular dystrophy tend to associate it with it Duchenne (the most well-known form).

Many people look at me now – a non-ambulant wheelchair user – and assume that I have always been this way (ie. unable to walk). This is not the case.

In order to raise awareness and familiarity of UCMD, here are a few photos of me growing up with this sadly unrecognised condition.


Above and below: My first wheelchair (manual). Prior to this I used what we, as a family, referred to a “buggy”. At this stage, I was able to walk short distances whilst wearing leg ‘splints’.

Below: In this photo I am around 11 years old. I loved this wheelchair (a manual, Quickie) as it was a sleek, black and purple design.

At age 10, I became unable to weight-bear. My muscles were simply unable to support my growing frame. It was therefore important to find a wheelchair that was comfortable enough to use all day long, whilst also looking half decent!

As you can see, the push handles on this chair were higher than average as all members of my family are tall. You wouldn’t think so, looking at me would you!

I always disliked the unusually high push handles (see above) as they stuck out above my head and were an aesthetic distraction.

Below: My next wheelchair – again a manual. I was unable to self-propel due to elbow contractures and muscle weakness.

Throughout my school years, I always used a manual wheelchair. This is one of the main reasons I hated school so much, since I was reliant on others to push me around. Wherever I was put, I stayed. It was incredibly frustrating.

Below: My Quantum F45 powered wheelchair (this model is no longer in production).

A relatively light-weight, rear-wheel drive with a narrow base, this chair served me well for many years.

This was in fact my second power chair. My first was a Jazzy Pride (front-wheel drive), which was great outdoors. Unfortunately I can’t find any photos to show you.

My Jazzy Pride wheelchair was purchased through public fundraising when I was 10-11 years old. At that time, there was just no way my parents could afford the cost of a powered wheelchair. Our local wheelchair services could not (or rather, would not) provide me with one.

Below: This is my current wheelchair – a Quantum 600, which I have had for almost 8 years. It is mid-wheel drive and VERY heavy!

I have to say – though it is a solid, sturdy chair – I wouldn’t replace it with the same make/model. Unlike my previous powered wheelchairs, it has let me down unexpectedly on various occasions and required quite a few pricey repairs!

It is rapidly falling to bits (literally) and most concerningly, the electrics are now failing. For this reason, I am currently on the lookout for a new chair.

These days, I primarily use a powered wheelchair rather than a manual chair, as it allows me greater independance and freedom of mobility. However, I do also own a Küschall Ultra-Light manual chair, mainly as a backup.

Me in my current Quantum 600 powered wheelchair

If you have found this blog post useful, I would be grateful if you could share to help spread awareness of Ullrich congenital muscular dystrophy.

Thank you!

My Search for a New Wheelchair

My Quantum 600 powered wheelchair, which has been my legs for almost 8 years, is gradually falling to pieces. I have patched it up no end with DIY repairs, and attempted to keep it going for as long as possible. But the electrics are now failing and so the chair is becoming unreliable. Consequently, I have no option but to start the search for a replacement.

As the wheelchair-users out there will know, this is never a simple task! It is a BIG decision, not least because wheelchairs are so ridiculously expensive. More so than a new car!

Throughout my life, I have had no choice but to privately fund all my wheelchairs – both manual and powered – since those offered by wheelchair services are wholly inadequate for my needs (and I suspect, most people’s).

So before committing to a purchase, I need to be absolutely certain that the wheelchair I opt for will be the right one for me.


My new wheelchair must:

– Have rise and tilt
– Be as compact as possible for indoor use
– Be durable outdoors as I live rurally


I have an appointment with my local wheelchair services on Friday 16th February. So I’m hoping they will be able to offer some useful advice and guidance, along with a voucher towards the cost.

A representative from Motus Medical has already visited my home to demo two mid-wheel drive (MWD) chairs:

– The Quickie Salsa M2 Mini
– The Quickie Jive M

I found the Quickie Salsa M2 Mini to be an ideal size (the base is only 52cm wide, with a turning circle of 110cm). However, when tested outdoors over gravel and uneven terrain, it did not perform particularly well.

The Quickie Jive M was too large for the contours of my home (overall width 62-66cm). Furthermore, I felt that it didn’t compare well with my current Quantum 600 in terms of outdoor ability.

So that’s two tried, tested and crossed off the list!

I will continue to keep you updated, following Friday’s appointment.

Me in my current Quantum 600 powered wheelchair

“Wheelchair-bound”? | Acceptable Terminology

Yesterday, I attended a hospital appointment, during which I had to answer dozens of questions about myself and my condition (Ullrich congenital muscular dystrophy).

I explained that I use a powered wheelchair and am completely non-ambulant. (I often find that most people assume wheelchair-users can walk a little, or at least weight-bear, which I cannot).

Going through my questionnaire, the nurse asked if I am “wheelchair-bound”. Having previously used this term to describe myself in similar contexts, I answered “yes”, without pausing to consider the semantics.

I am aware that many within the disabled community consider this term archaic and offensive. Now, I don’t want to get deep or political here – I completely understand and appreciate why people feel this way. After all, we are not literally bound to our wheelchairs, are we!

Wheelchair-bound, to some, implies restriction and limitation. On the contrary, wheelchairs are an aid to mobility and freedom, thereby enabling opportunity, inclusion, exploration and the ability to integrate with society. They are our legs!

However, I must say that personally, I do not find the use of ‘wheelchair-bound’ in any way offensive. I think the reason for this is that I don’t take the term literally.

Perhaps a poor comparison – but in the same way white people are not literally white and black people are not literally black, I am not literally wheelchair-bound. Yet we don’t consider the descriptors ‘black’ and ‘white’ to be offensive, inaccurate or socially unacceptable.

Similarly, there are those who may prefer to be referred to as differently-abled rather than disabled, disapproving of the latter classification.

Once again, I have no issue with being described as, or calling myself disabled. After all, I am in fact disabled!

I’m not sure there is a particular point I am trying to make throughout this lengthy ramble, it is merely an observation. I simply got thinking about the issue of terminology following the comment made by the nurse, yesterday.

– What do you think about disability ‘labels’ such as ‘wheelchair-bound’, ‘disabled’ and ‘differently-abled’?

– Do you think certain terms are outdated and incorrect? If so, why?

– And how would you have responded to the nurse who asked, “are you wheelchair-bound”?

Interviewed by Disabled Living

I was recently contacted by the lovely Natasha Bolger, from Disabled Living, who expressed an interest in interviewing me.

To read the full interview and find out more about me and how I am affected by Ullrich congenital muscular dystrophy, click here.


Below are a few screen shots from the interview…


Thank you so much to Natasha and everyone at Disabled Living!

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

Muscular Dystrophy | A Guide for Parents

About Me

– Disability blogger from the UK
– I have a rare, progressive condition: Ullrich congenital muscular dystrophy
– Born in 1988, with ‘floppiness’ and dislocated hips
– Slow rate of progression: I didn’t start to walk until 19 months of age. Prior to that, I ‘bum-shuffled’
– Able to walk very short distances, wearing custom-made leg splints, until age 10
– Fell over a lot as a child
– Never able to walk up or down steps or stairs
– I am now completely non-ambulant and use a powered wheelchair
– Contractures in all joints (knees, hips, elbows, wrists)
– Severe ‘S’ shaped scoliosis (curvature of the spine), which has not been surgically corrected
– Education: I attended mainstream school, then continued onto college (A-Levels) and later university, completing a degree in Art & English Literature


Diagnosis

Learning your child has a neuromuscular condition can, of course, be distressing and concerning.

In some cases, there may be a family history of the condition, whereas for others, like me, it could appear completely ‘out of the blue’.

I am the only member of my family with any form of muscle-wasting condition.

So, when I was diagnosed with congenital muscular dystrophy, aged 4, following a muscle biopsy, my parents were venturing into the unknown.

It was 1992. There was no Internet, no Google, and no one to relate to.

For us, muscular dystrophy was new and unheard of.


How and When to Tell Your Child

It may be beneficial to talk to other parents of children with a similar condition. If this is something you think might be helpful, ask your care advisor or neuromuscular consultant.

There is no right or wrong answer! Only you can decide what is best for your child.

It is 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 (in my opinion) be fair and equal, regardless of age gaps.

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 fully answer any questions they might have

From my personal perspective, I recommend an open and honest policy from the very beginning.


I received a diagnosis of congenital muscular dystrophy at age 4. This was specified as Ullrich CMD many years later.

I was always aware of my disability and limitations. I recognised that I was different from my peers – unable to walk, run and climb steps. I also looked different – I was very thin as a child, had joint contractures and scoliosis, causing asymmetry of the torso.

My parents told my siblings and I of the term muscular dystrophy, meaning that my muscles are much weaker than those of other children. At that stage, this was all the information I needed.

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”.

Ullrich Congenital Muscular Dystrophy

Infancy

Do your research: These days, there are many reliable resources of information. Ask medical professionals including consultants, physiotherapists and occupational therapists. I also recommend reaching out to those directly affected, such as other parents and adults with muscle-wasting conditions. Try social media and search for groups to join.
Always trust your instincts! Aware of my delayed progression as a baby, my mother 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.


Starting School

– Starting school can be daunting for any child. But for a child with muscular dystrophy, this transition can be even more challenging.
– 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 may elect to attend a school for special educational needs.
– I suggest making several visits to shortlisted nurseries or schools. Check all areas for accessibility. Meet with staff and the SEN team.
– 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. If possible, meet and introduce your child to teachers and support assistants. This will help them feel more at ease 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. 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 wonder if their symptoms will get worse as they get older.

I was able to walk short distances until the age of 10. We were never given any information or guidance. We weren’t advised if or when my ability to walk would come to an end. I would therefore often ask my parents, “will I always be able to walk or will I have to use a wheelchair?”

I appreciate why many parents may be reluctant to overshare and reveal what the future may hold, for fear of scaring their child. However, I feel it is important to be open and honest. If you’re unable to answer their queries, say so.

Knowledge and preparation is power!


Teen Years

– For most children with muscular dystrophy, the biggest changes occur during puberty.
– Growth puts 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 your child will accept and embrace mobility aids and equipment more than you. Children are very adaptable. For me personally, using a wheelchair was a great relief. A wheelchair offers mobility and freedom.
– Growth also leads to contractures. Regular physiotherapy helps to maintain flexibility and movement.
– If untreated, spinal curvature (scoliosis) will progress, resulting in asymmetry of the torso, a tilted pelvis, pressure sores and discomfort.
Scoliosis, along with muscle deterioration, impacts on respiratory function. If your child feels overly tired, naps during the day, or experiences regular headaches, particularly on first waking, you must see a specialist respiratory consultant. It might be necessary to introduce nocturnal noninvasive ventilation.
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, 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, they sought genetic counselling, taking with them a copy of my medical record.

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 be born with muscular dystrophy. They decided against this due to the invasive nature of the procedure.

They now have two children. Neither have muscular dystrophy.


Accepting and Adapting

As a parent, it is natural for you to focus all your energy into your children. Raising a child with muscular dystrophy brings with it many more challenges. This can impact on your health and relationships. It is therefore crucial to take good care of yourself too.

Remember, it is okay to cry, scream and shout! I’m sorry to say, battles are never ending and you will need to fight for your child throughout their life.

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 feelings, concerns and frustrations. This will negatively affect the wellbeing of you and your family.

Make time for yourself:

what time?!”, I hear you say.

I fully appreciate that caring for a disabled child is a full-time job. But you must seek some form of relief. Even if it is just meeting with friends once a week for coffee. You need space. Your child needs space too.


*Disclaimer* The purpose of this post is to offer support and advice from my personal perspective, having lived with Ullrich congenital muscular dystrophy for over 3 decades.


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My First Ceiling Hoist

As some of you may know, my very first ceiling track hoist was *finally* fitted on Monday 11th December.

I now have a straight track in my bedroom and a separate H-frame in my ensuite bathroom.

Why I need a ceiling hoist

I am 29 and completely non-ambulant due to Ullrich congenital muscular dystrophy. Being rather petite, I have always been manually transferred (yes, lifted by family and carers) rather than hoisted. This method has always been preferable since it’s much quicker and frankly less faff. But, we’re all getting older and more frail.

I live with my parents who are both in their 60s. They are my primary source of support, though I do employ a carer part-time. My mother underwent a full knee replacement in August 2017, and is therefore limited in how much she is able to help me. Consequently, we have reached a stage where a ceiling hoist is a necessity.

A long and frustrating process!

Back in October 2016, Mom was told she needed a full knee replacement. The following Spring, my only carer announced she would be leaving within the next few months to pursue a career as a paramedic. With this in mind, I contacted my local community occupatinal therapy team to request an assessment. I was told they’re vastly understaffed and, with an extensive waiting list, I would need to be in a terminal condition in order to be seen. I appreciate their predicament, I really do, but I was unwilling to be fobbed off so easily.

I was instructed, over the phone by an OT I had never met, to “camp out”, meaning I should wash, dress and be toileted on my bed. Yes, for a prolonged and indefinite period of time, I should go without a shower and simply not wash my hair. (Due to my physical limitations and my wheelchair, there’s no way I could wash my hair over the sink).

Disgusted at her casual disregard, I asked my neuromuscular consultant to issue a letter of support. On receipt of this, an OT suddenly found time to visit me in my home for an assessment. Following this, representatives from Prism Medical and TPG DisableAids attended separately to advise, measure up and draw plans. Both rep’s then submitted quotes to the purse holder at County Council who, of course, approved the cheapest option.

NB: A portable hoist was trialled but proved unusable with the layout of my room and the type of bath in situ.

Prism Medical

We were expecting Prism to arrive at 9am on 24th October 2017, as arranged. Having waited over an over with no sign of anyone, I called only to be told they weren’t coming because of a “technical issue”.

To cut a long story short, Prism claimed they couldn’t connect the track from my bedroom to that in my ensuite bathroom. This is despite consulting with occupational therapists and agreeing to do the job. Prism also claim they left telephone messages for both myself and the OT’s, on the previous Friday, to inform us that they wouldn’t be attending. Neither I, nor the community OT’s received any messages. I call bullshit!

Dad even removed the partition above the bathroom door in preparation.

Later, I learnt that Prism have similarly disappointed several others, resulting in formal complaints being issued against them. So when the purse holder at County Council told me she would renegotiate with Prism rather than approve funding for TPG to carry out the work, I insisted otherwise.

Having to fight for your rights and basic needs is, unfortunately, very much part and parcel of having a disability. ‘Tell, don’t ask!’ This is my motto. In my experience, if you are not clued-up and assertive, those in authority simply fob you off.

TPG DisableAids

Thankfully, Funding was approved after a different OT, accompanied by the rep from TPG, visited to discuss and re-evaluate the situation.

Rather than trying to connect the single rail in the bedroom to the H-frame in the ensuite bathroom, it was decided that two separate hoists would be best.

My carer had by then handed in her notice and would be leaving at the end of the month. I was seriously starting to worry the hoist would not be in place before Christmas.

But much to my relief, TPG (who, compared to Prism, were infinitely more professional and efficient throughout) booked in for the 4th December.

Then, just my luck, we were hit by the worst snow in 7 years! It was like flipping Narnia.

I tried to remain optimistic though in reality I knew there was no way TPG would be able to make the journey from Hereford. And they didn’t.

So, it was third time lucky, on the following Monday that the long-awaited ceiling hoist was installed. I no longer need to worry about hiring new carers as lifting is not an issue. Furthermore, the pressure is off Mom – literally! And, the thing I am perhaps the most happy about – my dealings with community OTs and the County Council are over.

For now at least…


(Apologies for the poor quality of the images. All were taken by myself on a Samsung S5!)

Christmas 2017 | Plans, Decorations & Films…

Christmas Day is now just over two weeks away! How did that happen? This year has gone so fast. I know we all say that every year, but really.

The biggest event of 2017 for me and my family, is the addition of my new baby nephew, who arrived at the end of August. We are a small family – neither of my parents have siblings, and so my brother’s and I have no aunts, uncles or cousins. So, for us a new baby – the first grandchild for my parents – is a big deal!

2017 also marks my first full year as a disability blogger. I have acquired a respectable following on social media (respectable according to my expectations, anyway!) and I hope to reach an even wider audience throughout 2018.

Plans for Christmas

Every year, our small family congregate at my parents house where my Mum cooks the traditional turkey roast. My Nan, who has just turned 91, insists on watching the Queen’s speech and so we all gather around the dining table after that lovely treat.

As kids, we would open all our presents early in the morning. But now we usually wait until after dinner to open them all together, as a family. It’s something to look forward to on Christmas afternoon… apparently!

Every year we have a real Christmas tree – my Mum insists. Having never had an artificial one, I can’t really compare. But I must admit, it is much more traditional and exciting to have a real tree, with the natural scent of pine, the imperfect shape and shedding needles all over the floor. Some people complain about the effort and the mess they make. But to me, that’s all part of the festive charm and the count-down to Christmas.

Decorations

Here is our real tree, decorated by my folks and I (a team effort), with plenty of colour, lights and an Angel on top!

I also made a wreath to adorn our front door – get me and my creative skills!

   

What do you think of my finished wreath? I hope it’s acceptable – I burnt half my fingers off with that bloody glue gun!

Film Recommendations

There are so many great Christmas films to get you in the festive mood (there are also some pretty shocking ones out there too!). But where do you start?

Some people want comedy, others have kids to consider and therefore need a family friendly option. Some want tradition and then there are those who would like to see something more meaningful and dramatic.

A few of my favourites include Home Alone (1990), The Muppet Christmas Carol (1992), Elf (2003), and The Family Stone (2005).

I’ve tried to cater for everyone here, although obviously we all have our own go-to Christmas movies. For those of you who haven’t seen any of my recommendations, maybe start with Elf, which is a charming, clever and witty family film about Buddy, an elf played by the irrepressible Will Ferrell. A good choice to keep the kids entertained now that school has ended, this non-stop comedy is both sweet and slapstick at times. I’m 29 and I still love this one!

My next choice is another hugely popular family friendly festive film about a young boy mistakenly left home alone when his family fly to Paris for the holidays. Macaulay Culkin was in his prime here, offering a highly entertaining and endearing performance that more than matched his established co-stars (Catherine O’Hara, John Heard and ‘Goodfellas’ Joe Pesci). With plenty of comedy, capers and action, Home Alone will excite and enchant both young and old.

Who hasn’t seen A Muppet Christmas Carol, seriously? What is there to say about this one – Charles Dickens classic story is invigorated and enhanced by the Muppets unique blend of humour and musicality. With the addition of Brit movie legend, Michael Caine, who is perfectly cast as Ebenezer Scrooge, this is a must see come Christmas Eve.

My final suggestion is less well known though possibly my personal favourite of the four mentioned. The Family Stone is a heartfelt comedy-drama about a modern-day eclectic American family who reunite for the festive period. One for the grown ups, I’d advise settling down with a glass of wine to watch this one before bed. I’m not overly sentimental but admittedly this movie always makes me shed a few tears. But don’t be put off, there’s also plenty of laugh-out-loud moments throughout. The ‘Christmas message’ is, in my opinion, subtly yet effectively delivered. Frankly, I could watch this at any time of year as it’s just a good, relatable drama about the trials and tribulations of family life.


Well, that’s it for my Christmas round-up. I hope you enjoyed reading this post. If so, please give it a share!

Here’s hoping you all have a happy and healthy Christmas!

20 Questions with…

Rebecca who has cerebral palsy

I recently got chatting with a lovely lady called Rebecca, who contacted me after reading my blog.

Rebecca, who has cerebral palsy, is high-achieving, ambitious and incredibly interesting to talk to.

Consequently, I thought it would be beneficial for you guys to learn more about Rebecca, her views and how she manages life with a physical disability…


1. What is your disability and how does it affect you?

I have Ataxic Cerebral Palsy, which affects my four limbs and means that I use an electric wheelchair for getting around both inside the house and for outside activities in my day-to-day life. I also have a visual impairment called Nystagmus, which prevents me from going out unaccompanied as I sometimes struggle to see steps and kerbs in the street.  My disability affects my life as I require 24 hour care.

2. What is the worst thing about living with your disability?

The worst thing is the stigma and negative attitudes that still surround disability. For example, strangers often make assumptions about my mental capabilities and underestimate my intelligence. However, I am learning to become resilient through my experience of this, and have developed coping mechanisms.

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

The free carer ticket to gigs/festivals/theatre/talks is a bonus! I also value my electric chair and the feeling of acceleration when I drive fast. On a more serious note, I view the fact that I feel I have a unique perspective on the world as a result of my disability as a positive. I have a greater tolerance of difference due to the empathy and understanding that my disability has taught me.

4. How do you feel about the term ‘disability’? Do you refer to yourself as having a disability or do you prefer another term, such as differently abled?

I used to physically jump at the word ‘disability’ as well as ‘wheelchair’ and ‘handicap’. This was because hearing myself being described as disabled hit home the fact that other people viewed and labeled me in this way. It made me feel as if my disability was my main or only attribute. This all changed when I attended counseling sessions in my early 20’s, where I was encouraged to unpack the meaning of these words and confront why they prompted a physical reaction from me. It is still the case that disability will never be my favourite word, but I’m now comfortable enough to describe myself in that way to others.

5. Do you feel under-represented in the media? If so, what changes would you like to see?

I can understand why some people would feel under-represented, and I agree changes do need to be made. But in my opinion, these changes reside in discussion, ideas and inclusion rather than purely exposure.

6. Are you a leader or a follower?

I used to be a follower, afraid to voice my opinions.  Now I am comfortable taking the role of the leader in certain social situations, i.e. with less confident friends I am able to guide the conversation to allow people to be heard. As well as this, I hope to lead with my ideas surrounding disability ethics and the research I am doing in this particular area.

7. Optimist, pessimist, realist or idealist?

I live in the most realistic way possible so that I am most connected with reality and grounded in my thoughts. To be too pessimistic can prevent us from progressing, whereas being overly optimistic can also be counterproductive to personal growth.

8. Are you easy going or high-maintenance? Would those who know you best agree?

I would say that I am easy going because I have learnt how to balance my own well-being so as not to allow myself to become too stressed out. Those who know me best would probably agree, but I imagine they would claim that I’m more high-maintenance when I have an important deadline to meet!

9. Are you more of an introvert or an extrovert?

This really depends on whom I am with. In my professional career as a counsellor it is my responsibility to be the facilitator who steers the conversation, and this doesn’t allow for me to be introverted.  However I can still become shy around people that I struggle to connect with on a deeper level.

10. Are you more creative or logical?

I am more creative in my thoughts and my writing and in the way I can construct an argument in a debate.

11. You are currently studying Philosophy at Cambridge University –  why did you choose that subject in particular?

I have been fascinated by the world around me from a young age with my intuitive questioning of values and beliefs. This then developed when I embarked on a short course to find out more about the subject, which then inspired me to study philosophy at a higher level. What I like about philosophy most is that it’s a never-ending endeavour; there is always more to question, learn and explore. Philosophy can help to find new ways to think about old problems and with considering things from different perspectives, to overcome many of the hurdles that we encounter in our everyday lives.

12. What difficulties have you faced whilst at University, resulting from your disability?

Having to deliver presentations has been difficult for me, but luckily the University allowed me adapt my assessments, and have been really accommodating. One of my personal assistants delivered this presentation and I was able to answer class questions afterwards. I also require a personal assistant to write down my thoughts, and this can sometimes take a long time because conversations can be misinterpreted. For this reason, I always request the option of extra time because it can take longer for me than for an able-bodied student to formally express my thoughts in an assignment.

13. What do you hope to do following completion of your degree?

I am hoping to continue studying and develop my qualifications, embarking on a postgraduate course that combines philosophy and mental health.

14. Are you the type of person who always knew, from an early age, what job you wanted to pursue?

Yes, from about the age of 10 I remember hearing of people’s difficulties and wanting to help them by giving them advice at the time! This then developed into aspiring to become a qualified counsellor.

15. What is your ultimate ambition in life?

To gain as much knowledge and wisdom as possible to discuss new ideas and create meaningful change.

16. Bucket list: Can you list your top 5 goals?

I took some time to contemplate this question because I’ve never had a bucket list as such, but I’ve managed to come up with 5 things that are important to me:

 1. Experience something daring in nature – i.e. wheelchair tree-top climbing

2. Using my counseling skills to change someone’s life for the better

3. Learn more about the psychiatry side to mental health

4. Finish reading a book in its entirety!

5. Finish my dissertation

17. If you won the Euromillions, what would you do with the money?

I would first of all build my own custom-made cabin in the forest. I would also double my betting stakes. (I do now and again enjoy a little flutter on the horses and football!) Although overall I am pretty content with my life how it is now.

18. Where is your favourite place in the world?

I really love spending time by the weeping willows in Newnham, Cambridge. These trees overlook the River Cam which makes it a very tranquil spot, where I feel safe and at peace.

19. Do you believe in ghosts, spirits and the like?

I have heard many stories about spirits and the afterlife that have led me to believe, or at least be open to the idea.

20. If a pill existed that could completely cure you of your disability, would you choose to take it, and why?

No, simply because I wouldn’t be me any more. And I wouldn’t have experienced the same things if I had been able-bodied. The only thing I would perhaps alter is the fact that I don’t get to spend much time on my own.


I’d like to thank Rebecca Sherwood for taking the time to answer my questions.

What do YOU think of Rebecca’s responses? how would YOU answer these questions? Leave and comment and let me know!

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