Living Life, Within the Limits of Chronic Illness

Category: Wheelchair Page 1 of 3

Adventures in “Frog”

Adventures out anywhere but hospitals are a rather unusual occurrence right now, as most of my energy is taken up simply by attending those appointments. However during a week, free of appointments, at the beginning of September, my parents, sister and I managed to get away to the nearby coast. And although the holiday itself wasn’t the most relaxing (Actually that’s putting it mildly!), we did manage some trips out where I could begin to get to grips with using “Frog” my wheelchair with Alber E-Fix power assist.

Slim woman in a green framed wheelchair, wearing bright blue trousers, a pink top and black hooded jacket, holding a camera up to her face taking a photograph

Caught taking a photograph whilst out for the day in “Frog”

I learned a lot about “Frog” and the Alber E-Fix during the little trips out I managed with my family. The biggest thing of all was that even a seemingly small trip, takes more energy when I’m the one in control of where I’m going, especially when I’m still getting to grips with the controls; just how sensitive is the joystick control to turn a corner? Is there enough of a gap for me to get through? Honestly navigating tight spaces when you’re still getting to grips with how sensitive the joystick control is, is no mean feat! This is one aspect I’m sure will improve over time, as I use it more, it should become second nature; like learning any new skill.

It is incredibly freeing (and stressful!) being in control of where I’m going again, after at least 7 continuous years of being dependent on someone pushing my wheelchair so I can get about when out of the house. On these trips out I ended up doing more shopping than I have in years, because I could decide which parts of the shop I wanted to take a closer look at, which previously I wouldn’t have bothered asking to get closer to because I always felt like it made me a nuisance.

I was surprised by the number of shops I could actually get in as well; the instructions for the Alber E-Fix state it can manage obstacles up to 4cm high. Now I’m no expert at judging height, but I’d say I definitely put that to the test, with my parents encouragement! There was a charity shop I wanted to go into (because who doesn’t love a good charity shop?!) but which had a slight step, in hindsight probably close to 4cm high, into it. I wasn’t sure “Frog” would manage to get over it, however I was encouraged to give it a try with my Dad standing behind me, ready to assist if necessary.

Well….this is where we discovered that “Frog” is an apt name for my wheelchair, as I approached the step with the two front wheels, once touching the step there was, what I can only describe as a burst of power from the rear powered wheels, and up the step “Frog” hopped! Or at least that is how it felt to me. As soon as it was over the obstacle the power dropped back down to what it had been before going over the step. And getting out was just as easy (although without the need for the burst of power as there was no obstacle to get up!).

The back of a light brown haired woman, sat in a wheelchair, looking out toward a flowerbed and house in the distance which is in the background of the image

One of the adventures in “Frog”

Now I learned one other thing about “Frog” on one of these trips out; how ‘easy’ it is to do a wheelie when going up over a bridge. And as such, how grateful I am for the anti-tips that are fitted to “Frog”! You see ladies and gents, I had been over this bridge in the opposite direction, not 10 minutes before without any trouble at all. However, it turns out one side of the bridge is actually steeper than the other, and so on my return journey over it, as I innocently started wheeling myself up it, “Frog” tipped backwards onto the anti-tips, giving me the scare of my life! It soon righted itself, thank goodness, (although it took my heart rate a while longer to settle!) and has become one of those funny stories for all to enjoy.

It’s nice to know the anti-tips work, but I hadn’t exactly been intending on making use of them, especially not quite so soon after getting “Frog”, I mean this was the longest adventure I’d had out in it and as I say, I was still getting to grips with the controls and navigating where I was going.

On all these trips out with family, I left them to lead me. I am yet to feel confident enough in using “Frog” to be the one leading the way. I look to them to check it’s safe to cross the road; it’s been 9 years since I had to do that for myself. (That’s not to say I haven’t paid attention when being pushed in a wheelchair, but it just hasn’t been my responsibility). I think it will be a while before I feel confident to even attempt venturing out in it on my own, I’m going to want someone there as a safety net for a little while yet. But I suppose after 9 years being dependent on someone else to get you places, that is only natural.

However that week in September, despite not being the most relaxing, provided me with opportunities to take “Frog” out on a few little outings and begin to get to grips with being a little bit more independent! Which while being completely, utterly exhausting, (honestly I can usually manage an hour out in my wheelchair now, somewhere quiet, with “only” requiring a few hours rest afterwards to prevent a significantly worsening of symptoms, with “Frog” I needed the rest of the day to rest!) It was also the most freeing and exciting thing to happen for some time! So here’s to “Frog” and having many more adventures!

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Power assisted wheels

I’ve been looking at ways of getting a bit more independence for a while now, especially when out and about. Being reliant on someone pushing my wheelchair can become incredibly frustrating, particularly when taking photos or shopping; wanting to stop and look at something, or take a photo, when you can’t get the person pushing your wheelchair to hear you, and they can’t read your mind (Who knew?!) can be a bit of a bug bear!

And so I started researching the options available several months ago; a power chair was the obvious answer however it would come with its own issues: having somewhere to store it, the weight of it to lift it in and out of the car, potentially only being able to use it on my ‘better’ days and probably a few more things I’ve forgotten!

Then there were the less obvious options of power add-ons for a manual wheelchair. Of these there were numerous options: a trike attachment, the smartdrive, or the Alber E-fix to name a few. I looked at each one and the practicalities of them.

At first a smartdrive seemed like a good option; being small, easy to store and detachable so on days where I’m not well enough to control it myself, my parents could always push my wheelchair. However, I often not only struggle with joint pain in my shoulders, elbows and wrists but also have poor grip, meaning even with the power assistance of a smartdrive, controlling a self-propelling wheelchair through the wheels almost as you usually would, albeit with the smartdrive making it easier, would most likely be impossible for me.

A trike attachment was never a viable option as far as I was concerned; I’ve got a mobility scooter, and one of the main reasons for not using it was having to hold my arms out in front of me, to hold the handle bars to operate it. After a trip out on it I’d struggle to use my arms for days as the fatigue in the muscles would just be too bad, so I assume a trike attachment would end up feeling similar.

And so that left the Alber E-Fix. Two motorised wheels which replace the standard quick-release wheels on most wheelchairs, controlled by a joystick, and powered by a battery suspended under the seat. The motors in the wheels can be disengaged, so it can be used in “freewheel” mode, meaning it can always be used in manual mode if necessary. There’s even the option of attendant control, although that’s not something I’ve really explored. The only sticking point was the cost; brand new any of the options aren’t cheap. However, thanks to the good ol’ internet, it is possible to find some available secondhand, and that’s what I did.

I was fortunate to find a wheelchair with Alber E-Fix E25, fairly locally on a website selling secondhand goods. Okay, so it’s not the latest model of E-fix, and as a result the battery is a bit bigger and heavier, but it was at a price I could afford, within a distance I could get someone to take me to look at it and pick it up, and it came with a wheelchair which although not perfectly suited to my needs, would fit me okay and be usable while I save up for one which will meet all my needs, and be able to accommodate the Alber E-Fix.

So meet “Frog” my new set of wheels….

A picture of my new wheelchair

I have yet to manage to go out very far using it, but I am sure it will make a huge difference for me when I am able to go out and about. The only trouble I have with it is getting the wheels on and off when travelling in a smaller car – it is quite heavy to hold in place and line the connectors of the wheels up, and unfortunately the secondhand one I bought doesn’t have the Alber Anti-tippers which also have a jack function for this very purpose. I’ve tried looking online to see if I can buy some of those to no avail, so I now have my Dad and a few neighbours trying to come up with a way of being able to jack the wheelchair up and hold it in the right position while taking the wheels off and putting them back on, which is portable too! Thankfully they’re an inventive lot, so I’m sure they’ll come up with something…although there’s no guarantees it’ll be pretty!

I hope to share more about the E-fix and how I get on with it as I manage outings in it, and generally get to grips with it. Fingers crossed my health will let me do that very soon, as I’m starting to suffer a bit of cabin fever here; well enough to potter around the house but not well enough to venture out without suffering massively for days afterwards.

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Disabled Parking Permit

Since the beginning of the year, longer in fact, applying for a disabled parking permit, or Blue Badge as they are called here in England, has been on my to do list.

In September it’s something I finally got round to doing. And I am ever so relieved to say that following an assessment to check I met the eligibility criteria, I was successful in my application.

To say I am relieved would be an understatement. Given I’m reliant on a wheelchair when out of the house it would be hard to see how they could possibly have turned me down, but with this illness being seen the way it is, and the general level of understanding of it, whenever I apply for anything disability related there is that niggling doubt that I will get refused.

Now I am permitted to park in the disabled parking bays, life is so much easier on the times I do get out, as there is space to open the door wide and bring my wheelchair round to the side of the car if I’m in too much pain or too unsteady to walk the few steps down the side of the car to or from the wheelchair. It makes a massive difference.

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Wheelchair Services

On June 13th I was referred by my GP to the wheelchair services in Essex. I was surprised at how quickly my appointment came through, and even more surprised at how soon the appointment was, especially as we had to ring up and change it! I had my wheelchair assessment on July 3rd.

Prior to the appointment I was nervous and trying to find out exactly what happened at these appointments, in order to allieve some of the anxiety I had about it. Given my experience with specialists in recent months, any appointment with a new person in regards to anything which relates to my health leaves me rather anxious. I got some helpful comments from friends on social media but there were differing stories too. So I thought I’d put this blog post together for anyone facing a wheelchair assessment and wondering what to expect; this is based solely on my own experience and may differ elsewhere in the country and depending on your needs etc.

What Happened at the Appointment?

First off, after the introductions, I was asked about how I use the chair. Mainly do I self propel it, the answer to which is a little but not much as I can’t do it for long or any distance. Also how much I use it; I can’t leave the house without it unless I’m going from one door into the car, and able to park right outside the other person’s house. I can’t go around any shops without it.

The next question was why? Is it just a lack of energy or what? The answer to which is rather complex but I kept it fairly simple; it’s mainly fatigue but also my legs are painful, shake and give way beneath me after even a short distance walking on crutches.

The assesor then measured across my hips while I was sat in my secondhand chair, and from my hip to my knee, before leaving the room saying she would see what they had available for me.

She returned with three for me to try, all suitable for my size.

A Sunrise Medical Breezy Moonlight. This I didn’t find particularly supportive, it is the most basic one they do. I couldn’t try self-propelling in it as it was an attendant version in the size I required. Although she did say they did a self-propelling version.

A Sunrise Medical Breezy Rubix. This I found very supportive. I used my own seat cushion (wedged in as it was slightly too wide really) because the foot rests weren’t adjusted for my height but it was comfortable. Plus I could self-propel quite easily; much more easily than any of the self-propelling wheelchairs I’ve had in the past.

And an Invacare Action 3NG. Again this was comfortable to sit in & quite supportive. However I found it difficult, almost impossible to self-propel. Which surprised both me and the lady doing the assessment. I just couldn’t get the momentum on the wheels.

I tried each one before choosing the Sunrise Medical Breezy Rubix which I’d found easiest to self-propel and comfortable. My Dad checked out the weight & had a push and agreed too.

She then went to check the stock and to see how long it would take to get me one. Amazingly they had one in stock & it could be delivered in 7-10 days!

When it was delivered, about 10 days later I believe, it was demonstrated to me and my Mum. They had me sit in it to check the footrest height and concluded it would be about right (it wasn’t and we later had to adjust those ourselves but it does differ depending on what shoes I’m wearing so I can’t really grumble about that!).

We had a few niggles that we identified in the days that followed, which were soon sorted; the cushion they originally provided was slightly too long and rubbed on the back of my legs causing sores. This was rectified in a way but now I have a cushion the correct length, which is an inch too wide for the wheelchair really, so it is quite a squash to get it in! I can’t actually do it myself and it leaves the flip up armrests completely unusable, and so I have been searching for a solution myself. Although it looks like my only option is to make one to fit, which will be fun!

The original armrests were a bit low for me. I think in a way that comes from trying the wheelchair without the type of cushion they provide, but it also stems from me being abnormally long in the body too! These have been adjusted and replaced with bulky padded armrests which make the flip-up feature more difficult to use, but I can actually rest my arms on. Why they are so much wider than the original armrests I don’t know.  These niggles can be lived with and are much better than being stuck in the house without a wheelchair.

Overall I was absolutely stunned at how quickly it all happened. I was expecting a long wait for an appointment and then a further wait while the wheelchair was ordered and delivered. But it seems lady luck was on my side. That’s not to say I’m enthralled with the service provided in terms of the minor adjustments, and the initial set up, but considering the pressures the NHS is under I am immensely grateful to have been provided with a wheelchair from them. Even if it isn’t perfect, it suits my needs better than the secondhand one I had, and I now know what to look for should I decide to go out and buy a better one.

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