February 2018 – Disability & Lifestyle Blog

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.

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.

“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”?