So it’s been a while since my last post, why the long gap you ask, well I have mainly written this blog as a cathartic exercise with a side order of helping out others in a similar situation and didn’t feel the need to write anything but I thought I should write about how strange it has been.
As you may know if you have been a regular reader I work full time and because of my heart condition and SCI I am classed as vulnerable (although strangely not extremely vulnerable) so back in March I started working from home then the lockdown came and I was furloughed, so I spent the next two months in the house, not even going outside for over a month before I started to catch some sun (sunlight is important see previous post). Strangely it was probably a bit easier for me than some others as I had spent 5 months in hospital back in 2017/2018 and was / am not as sociable as previously .
This is mainly due to the hassle factor of being in a wheelchair, is it raining ? (Whilst I can go out in the rain, getting a wet lap, having less grip on the wheels etc are all off putting)
Will there be disabled parking ? Is there disabled toilets ? Is it going to be busy ? All of which will influence my decision as to whether to go out.
Equally we don’t get as many visitors as we used too, I guess your circle of friends shrinks as you get older and definitely shrinks when you become a full-time wheelchair user.
All of which meant that actually weekends were very similar to pre lockdowm, what was different for me was the working week, I missed the office banter and camaraderie. I found this hard as just seeing my close family was not the same (as much as I love them).
Am now back working (part-time) from home at the moment but am speaking to work colleagues and enjoying being back in the loop.
During August 2019 we stayed in a wheelchair accessible accommodation at Domaine Des Ormes, France with Eurocamp. (Approx 30 minutes from St Malo and Mont St Michel, and 5 hours south west of Calais) They only have 1 accommodation that is specifically adapted for Wheelchair users
Ramp outside mobile home
The accommodation is situated at the top of the resort and is up quite a steep hill if you are self propelling or have to be pushed, luckily I have my batec device so getting up the hill was not a problem.
Entrance Ramp, not fixed
There is a ramp to get in through the doors, this was not screwed down so moved around a bit and was the only thing that felt like not a lot of thought had been given to it.
The shower room was quite spacious with handrails and a moveable shower seat. All the doors inside slid as opposed to opened inwards or outwards so there was plenty of space. The main bedroom had enough turning space for 1 wheelchair on one side
The main kitchen / living area had a lowered worktop surface so I was able to do the washing up (my wife was delighted!)
The resort itself was very friendly and I was able to partake in some archery
There was lots to do on the resort and they had just opened an undercover water park called the Dome, I was able to get in (had to go through a water trough) and there were level or gradual paths around the structure and plenty of space for me to position my wheelchair.
They also had an outdoor pool area which again I could get into although it was tight getting around between the sun loungers and the actual water itself
All in all the resort was great and I would heartily recommend it, so much so that we have already booked for next year.
As you know if you are a regular reader of my blog I work at Bluestone National Park Resort. We opened a new area of the resort on Friday 19th July 2019 called Serendome (Seren is Welsh for Star), a 7000m2 giant umbrella that covers a multitude of activities (some paid, some free) as well as places to eat, drink and a massive theatre (some 400 seats opening for incredible shows this November).
One of the main attractions is Skywalk (essentially a massive obstacle course some 7 towers and 24 climbing stations with many moving elements including a bicycle!.
They also have skyWalk Mini which is not as far off the ground for the younger children and those not comfortable at height, this course also has a wheelchair accessible course and I had the job of being the first disabled person to test it out.
So there is a special wheelchair that you have to transfer into, you are buckled up into a harness and the wheelchair is harnessed onto you and two harnesses are attached to you and the wheelchair which are used to keep you safe whilst on the course and also whilst on the zip wire.
So what’s it like ? Well the first thing that you have to do is get onto the first platform which involves a ramp to push yourselves up with little runners about every metre to bunny hop over, once you have done this (which is fine if you are an active manual wheelchair user but would be difficult if you are not used to pushing yourself) you are on the first platform and have to go round it (the instructor will detach the harnesses from the first part of the course and re attach to the next, all while ensuring that 1 is always connected so you can’t fall of).
Ramp Up (excuse the Hi Viz, Was still classed a s building site at the time)
Once round the platform you get to the next bit which is a giant seesaw (but admittedly a very tame on).
Seesaw (excuse the Hi Viz, Was still classed a s building site at the time)
Again you go round the platform (whilst being unhooked and rehooked up) to the hardest bit of the course a platform with lots of bits of wood attached at unusual angles that you need to bunny hop over, normally bunny hops are not a problem for me but of course they are not at angles and laid out so that getting one wheel over means the other wheel is trapped. This is a challenging element and the instructor is there is help if (or probably when) you get stuck and can’t seem to progress further.
Bumpy Path (excuse the Hi Viz, Was still classed a s building site at the time)
Once you’ve completed the bumpy element then again you go round a platform and are hooked up to the zip wire. Top tip here is when you land to try and lean forward and not backwards as you don’t want the wheelchair going backwards (no anti tips but you are still connected so can’t come out) and that is it.
Zip Wire (excuse the Hi Viz, Was still classed a s building site at the time)
So, what is my impressions, well I think it will depend on whether you have been a wheelchair user all your life and whether you have done other zip wires / thrill seeking activities before. Before I was in a wheelchair I loved rollercoasters, did zip wires that that were 40ft up and enjoyed being thrilled, this course is relatively tame for me but I still enjoyed the zipwire because not being on the ground and being suspended is still something that shouldn’t be the case in a wheelchair as a matter of course (unless you’re a stunt person and considerably braver than me)
There are of course some limitations, a 125Kg weight limitation (including weight of the Wheelchair and you cannot be pregnant) To see what else is available see video below and link to Srendome page on the Bluestone Website
So as some of you may know back in October last year I broke my Knee whilst performing a sit to stand exercise in Physiotherapy. It literally cracked as I stood up . Whilst it was a massive inconvenience for the following 3 months, (Having a full leg cast on for nearly seven weeks and being a wheelchair meant my turning circle was massive. Going out became really awkward so I essentially stayed at home unless it was essential to leave the house).
My big questions was why it happened. I had only been a full time wheelchair user for 11 months when it broke and whilst weight bearing is really important for bones to stay strong my knee should not have gotten so weak so quickly.
My doctor refereed for a bone scan and this was just like having an x ray but they scanned my pelvis and chest and I thought that was a waste of time after all it was my knee that broke and they didn’t scan that. I thought it would show my chest and pelvis were fine.
I was wrong, it showed that I have osteopenia which is like a mid point between healthy bones and osteoporosis. I have been put on Calcium and Vitamin D supplements and prescription medication to help absorb Calcium from my blood and put it into my bones. This treatment will hopefully stabilise my bone density and possibly improve it.
I do not know when it started to develop but being in a wheelchair and not being able to do any weight bearing certainly does not help. Also I didn’t realise how important sunlight is to helping to keep bones strong. Being in a wheelchair means that I tend to have to plan any trips outside the house, how accessible is the surface, steepness of incline, availability of disabled toilets etc. All of which means that I have tended to spend more time in the house in the last 18 months than I would have previously done as spontaneous trips out have tended not to happen.
Now that I know how important sunlight is I make a concerted effort to spend at least a few hours every weekend outside, I am lucky that I live close to the park in my village and take my daughters down there most weekends for a couple of hours.
I also am eating more calcium rich foods, hopefully between a more calcium rich diet, more sunlight, vitamins and medication my ostepenia will stabilise and possibly get better.
At the end of March I took delivery of a new Batec Scramber (One of only 10 in the UK and 30 Worldwide). The Batec is powered front wheel add on that connects to your wheelchair lifting the castors off the ground and essentially turning into a trike.
The Batec Scrambler has a top speed of 28 km/hour (approximately 20 miles an hour), and is the top of the range Batec with a bigger wheel than the other models as well as a reverse gear , suspension and a main beam and dipped headlight. The Main Beam is seriously bright and the suspension has little red leds builts into it so those behind you can see you.
As well as the actual powered wheel you need a special clamp that fits onto your wheelchair and enables you to hook and unhook from the wheel in less than 4 seconds. You are recommended to get the Batec Off Road Wheels and I also got those to help with going over any bumps and provide extra traction on loose surfaces.
I was lucky enough to be told about the Batec range of add-ons for Wheelchairs at Rookwood and they sounded exactly like the sort of thing that would be transformational in terms of being able to get out and about.
I am fortunate to work at Bluestone National Park Resort, a fabulous resort in Pembrokeshire, Wales spread over 500 acres and my job needs me to get around the resort, without my Batec this simply would not be possible on my own. With it I can go anywhere on resort apart from up a series of steps (and there are very few of those).
We have offices that are spread around the resort and also just off site and I am able to get to all of them (and quickly)
The Batec is fast and being so low to the ground in a wheelchair and exposed to the elements makes it feel faster than if you were in a car doing the same speed and has a range that is over 30km on a single charge so more than enough for a day’s work. I have tried it on gravel, loose stone/mud, grass as well as tarmac and it performs great on all of them.
Am particularly looking forward to trying it out on the Beach.
It is not the lightest piece of kit and weighs about 20Kgs so it is a bit of a struggle for my wife to lift into the car boot, but taking the battery off first helps make it a bit more manageable. It is quite a big piece of kit so you will need a decent size boot to fit it and a wheelchair in there.
You are very noticeable on it, and you will notice kids and indeed Adults as you whiz past stating that it’s cool and they wish they could do with one, whilst it is tempting to say that it would be better if you could walk, personally it doesn’t bother me
So the Batec Scramble is a fantastic piece of kit but and this is almost certainly reason you don’t see very many of them around is that they are expensive, I have bought a number of cars that have cost less. There are charities that may be able to help you fund such a piece of kit and the Access to Work Scheme may help part fund it if like me you need to be able to get around your place of work and this is what will help you into or stay in a job.
The UK distributor for all the versions of the Batec (Manual, Electric, Rapid, Min and Scrambler) is Cyclone Mobility . They have provided excellent service that is above and beyond what I expected, when I ordered my Batec Scrambler back in October 2018 and expected delivery was December, I stated that I was off to Disneyland Paris in December over Christmas and would it be possible if it wasn’t ready in time to borrow a demonstration version. They agreed and lent me a Batec Rapid in time to go to Disney and let me continue to borrow it till my new Batec was ready. This was fantastic service and when my Scrambler was delivered, the MD Stuart Dunne, as well as the Rep Chris and the Engineer Lukas all came down to swap over to the Batec Scrambler , all 4 of us in wheelchairs attached our Batecs and zoomed around the resort.
It was great, not just because it was a glorious day but because I felt that even though we all had different injuries that had caused us to be in Wheelchairs we were like one big group (admitedly we were no Hell’s Angels, though my wife is keen for me to wear a Helmet as it does 20mph and she thinks that would be sensible, I would be happy to do so as long as it’s a matt black open face helmet and I wear a Leather Jacket just for the look, somehow I don’t think it is going to happen)
Back in October last year we went to Harry Potter Studios and then the following day to Chessington world of Adventures.
Harry Potter Studio tour was very accessible for almost the entire tour from the moment we arrived (great big car park with lots of disabled parking) to when we left. It was approximately 3 hours to complete the tour and was mainly flat and smooth for almost all of the tour, the one exception was Diagon Alley which if you recall the film or books was very heavily cobbled and also on an incline. It would have been much easier if it had either not been on an incline or they had made a small width of the path with smaller cobbles or a smooth surface for wheelchairs.
We stayed in the Premier Inn just next door to Chessington World of Adventures in an adapted room. The room was good, wide doors, plenty of space to turn around and the wheel in bathroom with shower seat was easily accessible. The only thing that we have found is that the they tend not to do adapted family rooms which can makes things awkward if we are staying just as 2 adults 2 children, luckily we were able to stay in the adapted room whilst the youngest children and their eldest sister had a family room
We booked meals in the Beefeater next door which was good, it was close to the Premier Inn and relatively easy to get to (although admittedly you would probably need a hand to get up the incline to the main section).
The following day we went to Chessington World of Adventures, I had previously been but many years ago and when I was not in a wheelchair. I had forgot how steep some of the paths were and it was hard work getting about. We were lucky that when we went it was not school holidays so was not too busy. You will need a radar key to get into the disabled toilets. If you are with someone else (an adult) then as they are classed as your carer then they get in for free (You will need a Blue Badge to prove you’re disabled)
I would recommend it but bear in mind that you will essentially be there to watch others go on the rides and enjoy themselves
So to start with your first transfer will probably be in a hospital using a “banana board”. This board looks a bit like a bent banana or very large boomerang and the idea is that you put it on the surface you’re transferring onto and the surface that you are currently sitting on and the use the board to help slide you from A to B. To start with you are likely to rely a lot on your arms and essentially you are lifting your own weight by using yours arms and sliding your bum.
As you get better at transfers and assuming your balance becomes okay (mine was awful to start with as I spent the first 12 weeks post injury bed bound) then you learn to use your legs to help support your weight (assuming you have some control of your legs). Once you can transfer yourself between A and B (Usually the bed and your wheelchair or maybe the wheelchair and the plinth in Physio) then you will start to feel more independent, you can do something yourself and I was really delighted when I could this.
You will get used to transfers between bed and wheelchair, toilet, plinth etc then you will try transferring into a car. This is a big deal because the gap between your wheelchair and the passenger/driver seat is much bigger than what you have been used to and depending on the car will depend whether the board will be essentially level or the incline is too steep to slide up.
You will become really knowledgeable about the height of seats in cars, ideally you want a seat to be the same height as your wheelchair, too high and it becomes a real challenge to get into, too low and it becomes a real challenge to get out of.
To start with, you realise that sofas that are really soft and low are really difficult to get out of, you may put a lot of exertion into getting out and this may have unfortunate consequences, Don’t beat yourself up if this happens as it is an understandable reaction and once you have your bowel management programme working correctly then such accidents are much less likely to happen.
After lots of practice then you start to transfer without a board, first of all between wheelchair and toilet, sofa etc before eventually managing to do this between your wheelchair and the car. If the car seat is higher then you will have to use your legs to plant your weight down through your legs and try to use your quads to push up so you are not just using your arms.
When you have a hospital appointment and will need to transfer onto a bed / plinth it is always worth asking beforehand what the height is. I recently attended a bone density scan appointment and was told before attending that it was wheelchair accessible and there was indeed a platform lift to get me into the trailer however the plinth to transfer onto was about a foot higher than my wheelchair, it was very difficult to get onto. The only way I could do it (and it took a couple of attempts and thinking about how I was going to do it) was to have the wheelchair next to the plinth, rotate myself 90 degrees so my back was against the plinth then put my hands back behind me onto the plinth and lift myself up purely by the strength of my arms taking all my weight, this would not have been an option for those without good core strength and good upper body strength.
Going back 12 months there is no way that I would have been able to get onto that plinth or indeed get into my car but time has made it easier and hopefully will do so for you too.
It was almost 12 months before we went away for a break. We booked an adapted room with Premier Inn (chessington) and it was really good, enough room to wheel around, easy to transfer onto the shower seat. All was good. Then in December we stayed at an adapted room in a travel lodge in Ashford (close to eurotunnel) and it was not very accessible, no roll in shower, it had a bath. I should have been really specific when asking for an adapted room. Next time I will ask a lot more questions when booking a room to ensure that it suitable.
You need to be a lot more prepared and plan a lot more, where are you going to stop? Does it have disabled toilets ? Is your room fully accessible? Roll in shower, enough room to park your wheelchair next to the toilet? Is it a sensible height? Disabled parking close to the hotel? Height of the bed so you can transfer across easily
If you have good hand function but poor leg function you will need to use hand controls to drive. This will take a bit of getting used to, the first time I drove with hand controls my wife needed a bottle of wine. You will get the hang of it, driving at speed on a normal road, duel carriageway or motorway is the easy bit. Junctions and roundabouts and parking are the tricky bits, to start with you may find the controls a bit sensitive and do a good impression of a kangaroo.
Perseverance and practice is key to driving with hand controls,
There are a number of things you will learn that you never really thought about before. For instance if you have to do a catheter you will have to look at the colour and if it looks like scrumpy cider then you have not been drinking enough , looks like a fine chardonnay then that’s good and if it is almost clear then that is great. Equally when you have a bowel movement you get used to having to tell the nurse the volume (good result, okay result, poor result, no result) and a number between 1 and 6 to indicate consistency (1 is rock like, 6 is liquid) even when you are discharged and home you still check and think to yourself volume and consistency (although you don’t have to tell anyone)
