Saturday, 28 March 2015

"Oh, you're double jointed, I know someone who has that but she doesn't have your problems"

I hear this a lot.  I know I'm far from the only one.  Through my work I know how often Type I diabetics hear all about someone's Auntie whose (Type II) diabetes is controlled through diet alone.  Hypermobility is another of those conditions where various forms of it exist and in this case the benign form is much more common.  You won't believe how many times I've been told I should be good at gymnastics.  Even the medical profession don't seem to always know the difference.

This NHS page is a good basic guide to Joint Hypermobility Syndrome and explains how it's way more than just being able to bend your thumb backwards (in fact, I can't do that), even if they do illustrate it with a picture of a thumb being bent backwards.

This page goes on to describe the diagnostic criteria - the Beighton Score and the Brighton Critera (I'm pretty sure they did that to confuse people).   It was on that basis that I was diagnosed and the main issues I have now is with partial dislocations, bursitis and joint pain.  The pelvis and hip joints are what are most disabling and why I can't manage hills or steps or walk long distances.  And yet, I can still put my hands on the floor with my legs straight!

Friday, 27 March 2015

Hotel review: Novotel Créteil le Lac

I ended up writing a Tripadvisor review on my hotel in Paris and I felt guilty doing so, but I think I have been fair.  It is a nice hotel.  Just look at the views from the restaurant.

But it's not really accessible.  Here's what I wrote:

This is a nice hotel. It's in a lovely location, with views of the lake and town centre, handy for public transport and the road network and the rooms are very comfortable and well equipped. Unfortunately, despite being advertised as accessible on several websites, it really isn't. 

The room itself was great - large and comfortable with plenty of room for a wheelchair. There was a separate bed area which was slightly too narrow to access with a wheelchair. The bathroom, however, was completely unsuitable for someone who was non-ambulatory. Luckily, I can walk quite a few steps unaided, so could manage. The toilet is in a separate room and there would be no way to transfer from a wheelchair onto the toilet. The walk-in shower was good, but there was a step of about 20cm and no hand-rail. Transfer from a wheelchair would have been tricky and stepping in and out was bordering on dangerous. 

The building itself is barely accessible. The main entrance is up approximately 20 steps, but there is a ramp down to a fire exit through which you can enter the lower ground floor. This ramp is too steep - I could only just get up it and I am a relatively fit user of a very light-weight chair. It was difficult to maintain control going down. It would not have been appropriate for someone with an ambulatory disability. The lift doors were almost exactly as wide as my chair (a 44cm frame with standard wheels on a 3 degree camber). A standard chair would not have fit. 

All in all, I'd recommend this hotel, but not for someone with a disability.

Product Review: Quickie Caddie - Plus the Airports

So, I said I would do a post about my experience using my own chair in airports for the first time.  It was mixed.  First, though, I need to review my latest wheelchair accessory - a pair of Quickie Caddy thingamajigs.  As previously, I bought these myself, this isn't a paid review, etc.

One of the things I'd been thinking hard about was managing luggage with the wheelchair.  I think I am best described as stubbornly independent, but for the last few years I've booked wheelchair assistance at airports.  What I hoped was, with my own chair, to regain some independence at airports - particularly in those long boring hours between check-in and boarding.  On our trip to NZ last year this meant forgoing wheelchair assistance and using crutches to get through the airport.  On previous trips I've found us spending long periods waiting in very dreary corners.

The other place I had worries about was getting from the car to check-in and again from the plane to my accommodation at the other end.  You can't sling a heavy backpack over the handles of a Quickie Helium, because it's so light.  And in my case, it also has no handles.  When I saw the Quickie Caddie it seemed a good solution.  This picture, from Dutch blogger Leven Op Wielen, had me convinced it was viable:

So I bought a pair.  They're not cheap - at over £40 - and I was surprised how light they were when they arrived.  I was also worried about them getting in the way when I was using my chair day to day.
When I unpacked them, this is what I found:

That's one - there are two but I forgot to take the pick before I installed one.  They were easy to fit - apart from the fact that as Quickies are made in the USA they use non-Metric hex keys.  I had to buy a set of those (3 quid from Wilko).  When not in use, the spike thingy (seriously, what's a good name for these!) folds up parallel to the fork of the chair and they weigh next to nothing.  They fold down easily so you can use them for a basket in a shop or, for example a box containing a loom (which was my first use of them!)  I did discover, with the loom, that if you're travelling over bumpy ground, down slopes, or on cobbles, it's best to use a strap of some sort to secure the load.  On a flat smooth surface, for example in a shop,  you don't need to as there are non-slip grips you attach to each one.  For my trip to Paris I invested in a pair of Velcro straps which I wrapped round each wheelchair fork and round the case.  I got 68cm ones and joined together they worked on my carry-on sized case.  Separately they'll be good for smaller loads.

I have to say the Quickie Caddy worked great - I was able to get myself from the disabled surface parking area at Edinburgh Airport to check in (including a diversion back to the car to affix a temporary disabled parking pass to it!) and I would have managed through security and all the way to the plane but I'd opted to check my luggage.  I would have struggled to flick up a kerb because of the extra weight at the front (my case was approximately 10kg) but I didn't feel unstable at all and the manoeuverability wasn't massively impaired - my chair was still much easier to manoeuvre than the Red Cross one I had on loan last year!  There is a ramp from the parking area to the terminal at Edinburgh and I managed that OK.  At Charles De Gaulle I managed to get myself from baggage claim to the minibus which had come to collect us without problems and when I returned to Edinburgh I got from baggage claim back to my car on my own.  I got one of my colleagues to take a picture when we got back:

All in all everything went well - apart from a snag on arrival at both airports.  Even though I'd gate checked my chair, it didn't manage to make it back to me at either airport.  In both cases I was met at the door of the plane by someone with a wheelchair and they took me to baggage claim, where I found my own chair, but I haven't got to the bottom of how to ensure they bring me back my own.  I remember having the same problem with the buggy a few times when L was small.  In Edinburgh they kept assuring me "you'll find yours on the carousel" which had me slightly panicked.  After the third time I said "it's two and a half grand worth of kit, I'd rather it didn't go on the carousel" someone went to intercept it!  I think the lesson is to get it tagged as fragile at check in (they tag your chair at check in, just like other luggage, even though you're gate checking it).

Tuesday, 24 March 2015

Paris(ish) on wheels

This weekend I've been on my first overseas trip with the wheelchair.  I was a bit nervous, but did it in a way in which I knew I'd have a bit of support.  I've been working with our local twinning association ever since I moved to Scotland, so when I was invited to take part in a trip to the Festival Filmes des Femmes in Créteil I jumped at the chance.  Because the trip was being organised with the help of Créteil Jumelages there was someone arranging things for us  and they would be with us for the whole trip.  I was travelling with two colleagues as well.

We stayed at the Novotel le Lac in Créteil, which I'll do a separate post about and I'll also cover my experiences at the airport separately.  Most of the visit was a mixture of official visits (to schools, their fabulous new Mediatheque and the Conservatoire), excellent food and films at the festival.

Créteil itself is a new town on the edge of the Paris suburbs.  Most of the city has been developed since the 1960s and it is fairly flat, which made it easy to get around.  The town centre has a very 70s raised town square area, with carpark under, which is surrounded by the Hotel de Ville, various civic buildings, some flats and the Maison des Arts de Créteil (MAC) where most of the festival took place.  Access to this part of town was quite good, although the route from the MAC to the single lift into the carpark was a bit circuitous.  The MAC itself was accessible and had a lovely cafe.  There was plenty of room to move around.  Wheelchair access was to the bottom of the cinema, at the very front, which is normal, however we left the wheelchair at the door and I used my crutches to get down the top couple of steps to get a better view from the front.

Connected to the town square was an enormous shopping centre, which we visited briefly for some shopping and ate at on two evenings (once at a creperie, the second time at Flunch).  It was a good shopping centre but again it only had one, small lift, at which queues formed on a Sunday) not as accessible as it should have been.

The festival's other venue was a small cinema, La Lucarne, which was located near the Mediatheque in an area of Créteil built in the 1960s, one of the poorer areas of the city.  Unfortunately the 1970s building was not very accessible - there was no disabled toilet and it was the only place I absolutely needed to get someone to help push me up the hill (apart from the ramp at the Novotel, which I'll cover in a separate post).  However I managed to get into the auditorium for the film, so everything worked out.  The mural on the outside of the building was painted by a Chilean artist who fled the Pinochet regime.

The films we saw were Todos estan Meurtes, which eventually one the Youth Jury prize; Sol Branco, the winning short film (which we saw twice); Notre Enfance á Tblisi; the Grand Prix winner Objects in the Mirror and a Beatrice Dalle film, Bye Bye Blondie, which I need to try and watch with subtitles.  It was the only one with no subtitles.  Todos estan Meurtes and Objects in the Mirror both had English subtitles.  Sol Branco and Notre Enfance á Tbilisi had French subtitles which I could sort of follow, so Bye Bye Blondie was the only film I really struggled with.

On our "day off" on Sunday we were taken for a brunch at La Bellevilloise it Paris itself.  The meal was *amazing*.  The venue was wheelchair accessible, in that there was level access and a disabled toilet, but very busy so I was glad I had taken the crutches and could use those instead.  I ate way more than I should have (including two desserts!) but look at the food!

The venue was pretty good too.

Our hosts then very generously drove us on a tour of the main sights of Paris, which is as amazing a city as it was last time I was there.  I plan to go again.

Tuesday, 17 March 2015

Legless in Dublin

On Sunday I went to the Edinburgh Yarn Festival, in my wheelchair and was chatting  to Yvonne from Dublin Dye Company (a business she started with an online friend of mine, many years ago).  She recommended I check out the Legless in Dublin's blog and I'm so glad she did!  I've really enjoyed the quick look at it I've had so far and I'll have to read some more later.  I've added a link to the sidebar here so I remember.  I found her entry From Sticks to Wheels really caught a lot of how I've experienced the transition, but I think I could add something about the enormous frustration I've been feeling about other people's attitudes to it. 

She's also given me some ideas for this blog.  First up, but not right now, will be a review of Edinburgh Corn Exchange where the event took place. 

Saturday, 28 February 2015

This just impresses me.

It took me too long to figure this out.

At the moment I need to take the wheels off the chair when putting it in the car.  This means a bit of juggling (standing with my weight mostly on one foot, of course) to take the wheels off.  Once I made this discovery, though, it got a lot easier...

The chair will balance on the front footplate, not just with the wheels off, as shown, but with either or both wheels on.

Someone thought about that.

Product review - Silicone Pushrim/Handrim Covers

One thing I figured out quite quickly was that the standard anodised aluminium pushrims/handrims on my chair were hard to grip, especially in the cold of an Edinburgh January.  Gloves helped (and I'll do a separate entry on them) but weren't always practical and I probably won't want to wear them next time I go to Dubai!  One afternoon we were having a discussion about silicone bakeware and I went "ah! I know what I need - silicone pushrim covers".

When I got home Google told me such a thing already exists!  One of the first pages I found was information on Grippoz, which looked great but sadly are not on the market and their Kickstarter failed to reach it's target.

I found some less innovative options already available though - in a range of colours and a fairly large range of prices from various retailers.  In the end I went with plain black ones (because I am boring!) from Mobility Pit Stop.  Like all wheelchair accessories, as I am discovering, they were not cheap at just short of £50 including postage, but they were delivered within a couple of days and, to my relief, were very easy to fit.

They've made a massive difference to my hands, which no longer end up stiff because they have been on the freezing cold, hard metal.  Pushing is much more effective - making it less effort on the flat and making hills and ramps much easier.  So they've been totally work the money.  I don't need my gloves unless it's actually cold!  I've done a couple of 3-4km outings using them and am very impressed - in particular it was lovely not to have to ask someone to "give me a shove" up a ramp.

One small quibble - they do flick off if I catch them on a tight doorway, which is annoying but easily enough fixed. I suspect making them slightly smaller, so they have to be stretched to put on the rims, would fix this, but make them harder to fit.  

I wasn't paid to write this review and I paid for the product myself - if this is ever not the case I will make it clear.

Sunday, 8 February 2015

At the museum

The National Museum of Scotland has an exhibition on computer games at the moment and I've been meaning to take the Small Scottish Boy since it opened.  We didn't have any plans this weekend, so we went in today.

I've used wheelchairs in the museum before - both the Red Cross one and one of their own ones - so I was interested to see how my own chair compared in a familiar environment.  The answer is, it was a massive difference.  It still astounds me just how easy it is to wheel, compared to even the expertly maintained Red Cross chair, let alone the not-maintained museum one.

I didn't get to try it on the challenging entry slope to the new part of the building, as every single disabled parking bay was already in use (and, as ever, not all by people displaying badges).  I ended up parking further down Chambers Street and on the other side, meaning I discovered that unfortunately, there are no dropped kerbs anywhere near the main entrance (in the old building) and the kerb is well over the 10cm I practiced at the Westmarc centre.  I'm pretty sure it's not actually possible to get up it safely, no matter what the skill level.  Many millions have been spent on the museum over the last 20 years - firstly the extension and then the refurbishment of the older part of the building.  You'd think someone would have thought of a dropped kerb somewhere near the main entrance.

That said, I don't think access was exactly to the fore of anyone's mind.  The building also suffers from a dearth of both disabled/family toilets and lifts (elevators).  In particular, the main entrance is served by two small glass lifts and at weekends there are pretty much always queues of families with pushchairs and/or disabled people waiting for them.  It took us 15 minutes to get up to the 3rd floor and another 15 minutes to get out.  Once you're out of the basement entrance, there are a couple of other lifts in odd corners of the old building, whilst the new part is well served by large lifts (but it has that tricky slope to get in!).

On the plus side, I found our visit way more enjoyable, once we were in, even compared to going round in other wheelchair.  So another thumbs up.  The exhibition was fun too -  we'll go again at least once before it closes, especially since I bought a membership.

Sunday, 1 February 2015

Time for some car shopping.

My Motability contract is coming to an end soon, so the last couple of months have been spent car shopping. This is my third Motability car and once again I get to shop with a friend whose contract ends around the same time - we ordered our first cars together 6 years ago, accompanied by two small boys, walking in saying "we'll have one of those in red and one of those in grey". They're not so small now.

I started my spreadsheet about 3 months ago, having decided on my essentials: cruise control, automatic (I can't manage a clutch), diesel (more economical for the driving I do), some way of plugging in an iPhone or iPod to play music and finally parking sensors. It can be a bit tight in our (shared) driveway, with 4 cars, a transit van and a motorbike. I had a hire car with "beeps" last year and was won over.

That narrowed it down a bit and I started to compare advance payments, fuel economy and features. The arrival of the wheelchair added a criteria - I needed to be able to fit it in the boot (trunk) without taking the wheels off. Whilst it's OK occasionally, on a weekend day when we're going from place to place, often in the rain, doing it every time gets old, quick! So whilst it does fit in my existing car, with the wheels off, I need something bigger.

A few cars went on and off the list but the final shortlist was the Ford Grand C Max, Citroen C4 Piccaso, the Grand C4 Picasso, the Peugeot 3008 and the 5008. A very late addition was the Ford Kuga (aka Escape), which we discovered would fit my wheelchair wheels on and was cool. As my friend (with two kids and a bigger wheelchair) said "someone needs to have a cool car, not a bus or a van!"

In the end, the fuel economy on it wasn't as good and the advance payment (deposit) was high for one with all the features I wanted. In the end, low advance payments and good features meant Peugeot won out and it was down to two cars - the 3008 or the 5008. There's 17cm different in length and two extra seats on the 5008 (though the wheelchair means I couldn't really ever use both). Time for a comparison.  I also really like the semi-automatic gearbox the Peugeots and Citroens have - my last two cars (Grand C4 Picasso and latterly a 308)  have both been semi-automatics.  I'm also clearly a fan of French cars - having owned 2 Peugeots and 5 Citroens.

5008 - more space to the side, but the extra seats folded into the floor makes it higher, so the chair is above the level of the back seat

3008 - the chair fits in, with the back folded, under the parcel shelf. There's marginally less room beside it - the space is narrower, but it's also taller. We have a winner.

I ordered it on Friday, need to go in to do the paperwork one evening this week and it should be here in a few weeks. I've requested an early changeover, if it arrives early, which Motability have approved on the grounds that I'm having to take the wheels off to get my chair in my current car. It will be Shark Grey - a boring colour but one of the three options with the nearest delivery date. It'll look a bit like this.


Edinburgh's trams caused chaos and no little controversy (which continues) while being built, but finally started running last spring. I've been on them a few times before, but last week took the wheelchair on for the first time. It was great. The Park and Ride at Ingliston has disabled parking right by the tram stop, though it seems to be a well-kept secret and I hesitate to publicise it! The platforms are all engineered so there's level access, without even enough of a gap for my 4" casters (that's the front wheels) to get caught. There's loads of space (4 wheelchair bays in each tram) and they're quick and smooth. They stop longer (and open the centre doors automatically) if you press the stop button with the wheelchair sympbol. I really love the active user logo they have chosen as well.

Despite it's hills, the main streets of Edinburgh's New Town are built along the hill, so there's no more than a gentle slope as you go along Princes Street and, if you alight at St Andrew's Square, the same is true for George Street. There's a slight hill, beyond me just yet, between the two, but the trams do make both of Edinburgh's main shopping streets accessible to me. Which is just as well because the Council have somewhat misguidedly blocked off half of George Street (and thus half it's disabled parking bays) to create outdoor dining spaces (in Edinburgh!). These have proven less than successful, apart from for a few weeks in August. I can even make it to John Lewis without braving the horrors of it's parking building.