Equipement

Equipement helps me to live my life. It can be disability related. A wheelchair is a disability product for example. My smart heating is a prime example of non-disability specific piece of equipement that makes my life easier.

10 things affecting my wellbeing right now!

I’m back with an update that explains what has been affecting my wellbeing since July 2021 and contributing to my online absence.

Mental wellbeing

My mental wellbeing has suffered a lot since I last posted. I’ve had a lot of ups and downs mostly due to the stress of having to recruit Personal Assistants and contemplating moving out of my parent’s house for what will be the 3rd time. My wellbeing improved when I received my budget but the stress of moving creates its own anxieties and challenges.

I’m receiving help from my local mental health centre and attend sessions once a week. I also signed up for an online mental health platform called SpokzPeople. I wanted to write a post for mental health awareness day but was too overwhelmed to post anything. Mental health is important and not just one day a year. Wellbeing is becoming more prominently talked about since the Ukraine crisis. While that situation is terrible, poor mental health can be triggered and improved by small events too. Talk to someone if you are feeling low or struggling no matter what the reason.

Physical wellbeing

At the start of the first lockdown in 2020, I had so many plans for the upkeep of my wellbeing, so many tours and shows to watch online and accessible fitness classes for disabled people were being launched. Then I caught COVID-19 and it all went to hell.

One of the main things I realised after venturing outside again was how weak I was. It wasn’t all to do with being ill. I’d spent the best part of a year in a home where everything was adapted to my needs. This meant I wasn’t struggling to transfer. This was great at the time and a boast to my mental and physical health that most of my pain disappeared but without the daily struggle my body got lazy and I’m still not back to how I was.

In August 2020, I applied for and was given some resistance bands. The scheme run by Wheelpower is now open again. If successful they will post the bands to your home and their website has lots of videos with classes and ideas of how to use them.

Resistance-bands

I have now signed up for both the yoga and exercise classes starting next week. I’m hoping to get myself in shape. Wish me luck.

Dancing with Motionhouse

As I type this it’s our first performance this evening of Wondrous Stories on Thursday 17th March. If you’re in or near Birmingham we are performing in Centenary Square till Sunday 20th March as part of the Birmingham 2022 Festival. Our 8.30 pm performance is being live-streamed on Friday 18th for those who cannot make it in person. Dance and more importantly my teammates in Freewheelin’ Dance have an enormous, positive impact on my wellbeing.

Watch the Wondrous Stories from Friday 18th here: https://www.youtube.com/watch?v=SGTukQOMTkI

Wheelchairs and Wellbeing

Without my wheelchair, my wellbeing would suffer. My wheelchair is my legs and my independence, which is why I’m still searching for a suitable backup chair for when my Powerchair goes wrong. More on this when I have more time, with pictures I promise.

Recruiting PA’s for future wellbeing

Ever since I received my care package in June 2021. I’ve been trying to recruit people to assist me. I’m now having some success but writing and posting ads, conducting video interviews with the help of an advocate and then meeting people face to face has taken over my life. I’m hopeful I now have a good team and will write about my recruitment process in a future post.

Contingencies for my wellbeing

Contingencies, plans for what happens if my PAs are off work, are doing my head in at the moment. I’ve been looking at agency cover but the average cost of an agency in my area is £23 per hour and my council pays just under £16 agency rate. Next month my team will be on minimum wage pay as the council rate for Direct Payments hasn’t gone up for a least ten years. I know there are many people asking for a pay rate increase on the Direct Payment scheme across many different councils.

Journalism

I’m still studying for my certificate in journalism under the ADJ but due to the above, I haven’t managed to progress much. I’m really enjoying the course so far and thankful that the tutors and organisers are understanding when life gets in the way. I hope to complete this qualification before Christmas. Excuse me for mentioning that holiday before November!

Assistance Dog

I’ve always loved dogs. They make me smile from ear to ear! It’s always been a goal of mine to have a four-legged PA and thanks to Canine Partners it’ll happen. Canine Partners train assistance dogs for disabled people. The main tasks for me will be opening/closing doors, picking up anything I drop and assisting me with my coat. I’m hopeful this will mean I can leave the house independently. This will help my wellbeing massively both mentally and physically if I can do things on my own without asking for human help. If only dogs had opposable thumbs… 😂

Volunteering with Disability Horizons

I’m still part of the amazingly supportive Disability Horizons, I’ve just been doing less, mainly due to the time and energy recruitment was taking. I have several stories to edit and a few reviews planned so I hope you’ll keep your eyes peeled. Working with like-minded people gives me a boost and lessens the feeling that I’m struggling alone.

Disability Horizons

Collective voices create change and better wellbeing for all.

Lastly, I’m a member of several survey and disability groups that ask my opinion on different things. Disability Horizons has just started asking people to sign up to assist with market research. Another well-known company is Open Inclusion. There is also The Diversity Standards Collective which pays £10 per survey they send you. I’m not being paid to mention these and they may be others. These are just the companies I am part of and I find it interesting to share my views and hear of others’ experiences as well. The more disabled people provide feedback about products and services the more inclusive the world will be.

Trabasack-Mini

Mini and Mini Connect Trabasack Review

As promised, here is my review of the Trabasack Mini and the Trabasack Mini Connect products. These two have been sent free for me to review. As a long time user of Trabasack Products, I will give my honest opinions of these products.

How are these products different to the Trabasack Curve?

In my Trabasack Curve review, I focused on the differences between the wipe clean, leather-look version of the Curve and briefly explained why I chose the non-Connect, velcro version. The main difference between the Mini and the Curve products is shape and size. Whether you choose the Connect version of either product or not the Mini is square and slightly smaller than the Curve.

The beanbag inside both Mini Models of the Trabasack is also square and unlike the Curve, it is a tight squeeze to fit more than one beanbag inside a Trabasack Mini. Having said that I haven’t noticed any instability that has made me think of adding an extra beanbag. It is only because I owned the Curve first that the option occurred to me. The smaller size means that the bag fits nicely on my lap and the beanbag covers more space. This makes both Mini products very sturdy and comfortable to use.

Trabasack Mini Beanbag

What’s included?

Both Mini versions come with an instruction booklet, two straps, one short, one long. Both have six D-rings each and both come with two ring pull zips. The only difference between them is the tray surface.

Benefits of Mini Connect velcro

The main benefit of the Mini Connect version is that velcro sticks to it. This means that objects stay secure on the tray. Having items stay put can be useful for anybody but particularly for disabled people. The mini Connect can help ensure that items stay within easy reach.

TV Remote held by MediaMount

Trabasack MediaMount

If you are able to view the image above you will see that my TV remote has something wrapped around it. This long accessory, sold by Trabasack is called a MediaMount. The MediaMount is basically a long strip of soft material with velcro all along the underside with two loops at the end to assist people with limited dexterity to grip it. The design means that it sticks to itself and to the Mini connect. This means it can hold items securely and at virtually any angle you want.

Mini Connect Cup held with MediaMount

Mini Connect and iPad

In my previous review of the Trabasack Curve, I mentioned how I had damaged an iPad case by putting too much velcro on it when placing my iPad onto my Trabasack. This time I was more careful…

iPad with Velcro
As you can see you don’t need a lot of velcro 🙂

This small amount of velcro will keep my iPad secure on my lap but enable me to take it off easily when I want to. Trabasack also sell hook tape so if you need some extra velcro they have you covered. You get two strips in a pack and cut them to any size you need.

iPad stuck to Mini Connect
This photo shows my iPad on the Mini Connect which is attached to my waist.

This position is very comfortable for watching videos or reading emails.

Trabasack Mini

The main selling point of the Mini version vs Mini Connect is that the surface is wipe-clean. Which one you choose will depend on whether you want to use velcro with your Trabasack or not. Having said that the MediaMount does work with the non-Connect version of the Trabasack Mini. The accessory will still hold things in place it just won’t stick items to the tray surface.

The photo on the left shows the MediaMount wrapped around a cup that is resting on the Trabasack Mini. The photo on the right shows the MediaMount curled around itself with a hole in the middle. This is an excellent position for my iPhone and props it upright. This makes it great for video calling. Unfortunately, I couldn’t show this as I needed my phone to take the photos. The pitfalls of having a device that does everything!

Reading

Another thing I use the Trabasack for is reading. I have to say I prefer the Mini version of the product for this over the Curve as its smaller size and square shape is more comfortable for books.

Book resting on Mini Connect

The Mini ensures that I don’t feel the heavy weight of even this big book on my legs! I do slightly prefer the Mini Connect over the Mini in this instance as I can stick the MediaMount onto the Connect Surface to prop the book up at a more comfortable reading angle. I haven’t yet resorted to putting velcro on my books! Thankfully Trabasack products are so stable that I don’t have to.

Conclusion

Both of the Trabasack Mini versions are great. As I use all the products more and more I’m tending to use the Curve as a meal tray and for laptop use and the Mini for everything else. I have got really attached to the Mini Connect with the MediaMount. The main reason I always brought the Trabasack Curve, was because of the bigger lip around the edge. Now with the MediaMount, I have the smaller form factor and a bigger edge all the way around.

Mini Connect on my lap with the MediaMount around the edge

Despite its smaller size, it will still comfortably fit my 13inch Macbook Pro inside it.

I think Trabasack says Laptops up to 14 inches for the Curve and Mini Models and up to 17 inches for the Trabasack Max. Whichever model you choose you won’t be disappointed.

Get in touch if you’d like to ask me any questions regarding these or any other products I use. Keep a lookout for my upcoming blog post that I wrote for Access Rating regarding Freedom Day. I also have some useful and innovative products that I will be reviewing for the Disability Horizons shop so keep your eyes peeled!

Accessible Rooms: How To Make Them More Accessible

Due to a certain well-known virus, most of us aren’t going anywhere at the moment but I said I’d write this before the COVID-19 madness started and it occurred to me that the house arrest many are experiencing at the moment is a good opportunity to get organised for our next accessible getaway.

Questions to ask before you book your accessible accommodation.

I’ve found the best approach is to think about what would make your stay IMPOSSIBLE and then structure your questions around making sure the impossible can’t happen. The obvious one for a wheelchair user is steps. I always specify the exact thing I need or don’t need. Using the example of steps above the question I would ask is. Does your accommodation have any steps? The keyword here is any. If they say no, I follow up with, none once inside? The reason for this is I have then often been told that the entrance has no steps but that the bathroom is split level. People tend to think about entrances when you ask any access question.

Blue door
Blue Door Entrance

My Top 10 accessibility Questions:

1) Does your accommodation have any steps?

This is a deal-breaker for me unless there are lifts. Hotels often have alternative access but If I want to book a holiday cottage for example it has to be wheelchair accessible. Steps may not be a barrier for you. Your insurmountable barrier may be that you need your accommodation to have hearing loops etc. Personalise this top ten to your circumstances.

2) If there are steps are there lifts/ramps available to get to where I want to go?


I ask this because some people see in black and white and it might not occur to them that there are steps at the front but step-free access at another entrance. Finding this out means I may have more choice about where to stay.

3) What is the width of your doorways?


This question is one I don’t have to ask as I’m lucky enough that my biggest piece of equipment, (My PowerChair,) fits through standard doorways but it is a close thing sometimes! To be safe, measure your chair from widest point to widest point. Then you can say I need doorways to be no narrower than XYZ. Please note: if you have a piece of equipment bigger than a wheelchair, e.g a hoist, measure that instead. Bit obvious but still worth pointing out, you want the doorway/s to admit you and anything else you might need.

4) Is there an accessible bathroom with a wet room?

I need a wet room, as I can’t access a bath or any bathing setup that isn’t flat. Obviously, you could change this to whatever set up you prefer.

5) Are there grab bars next to the toilet, fixed to the wall?


Again this is very specific to me. I cannot transfer without static bars that are fixed to the wall. Fold up ones lift up as I stand, I’d be there all day! You might need fold up bars or no bars at all so that a side transfer is possible, or enough space around the toilet to use a hoist. If you’re able enough that a toilet is a toilet, then leave this out.

6) Is there a shower seat fixed to the wall?


A fixed shower seat is the set up I find most accessible as I find hired shower chairs an expense and they are often too high for me to transfer into. There are companies that will lend you equipment and many deliver to your accommodation, for a fee of course. You may be wondering why this question didn’t follow the wet room question. The reason is if there isn’t a wet room I can’t stay there, ditto if I can’t access a toilet. Given that, the specific’s of the shower are saved until I’ve ascertained the bathroom and toilet space are accessible.

7) How high is the bed?

My biggest issue isn’t that I use a wheelchair it’s my height together with my disability. I’m 4.8ft, just short enough to make an already challenging transfer that much more difficult! I, therefore, need a low bed. You may need a high bed to make it easier to get out of it in the morning. It’s also worth asking if there is space under the bed itself. If you travel with a hoist or hire one, the last thing you want to discover is that the hoist cannot get close enough to the bed!

8) Are the light switches near the bed?

If you’re like me you might need assistance in the night, sometimes however I just want to roll over and check the time without disturbing people. If the light switch isn’t reachable from the bed this isn’t possible. It may sound trivial but I’m no good at routing around in the dark!

9) Do you have adjoining rooms?


This question is more for hotel rooms and related to the fact that I need assistance. If this doesn’t apply leave it out but if I need anything at stupid o’clock my family or my PA’s have the luxury of coming straight to me and not having the honour of traipsing a public area in their PJ’s! If you are renting a property then this isn’t needed.

10) Can you email me photos of the property/room type that I’m looking at booking, please?

I will never go anywhere again without first seeing pictures of where I’m staying and the layout. Even after asking all these questions, things can be topsy turvy upon arrival. Even with the best will in the world people misunderstand and in some cases, give completely the wrong information!

Access gone wrong!

Prior to my stay in London, I asked everything I’ve outlined here and received satisfactory answers. Upon arrival, the shower seat was a portable seat that hung over a static grab bar and was VERY shallow. I eventually got my money back as I had one shower over three days which nearly ended with me and my PA on the floor as the seat wasn’t stable! I did on this occasion request pictures but they weren’t clear and I took a chance. Businesses should be happy to provide clear images of either where your staying or a comparable room/building. If they are not, find somewhere more helpful who will accommodate you.

Camera clipart
Clip Art of A Camera

Products to help make your accommodation more accessible

Having found somewhere accessible to visit and phoned the business to ask about access requirements, it’s quite likely that the place you want to stay isn’t perfect and not as straightforward as it would be if you were in your own home. Instead of not going anywhere and staying home, (sound familiar?) there are products out there designed to make accessible rooms more accessible to you.

Portable hoist

Everybody is unique and because we are all unique our version of accessible is different. What works for one person may not work for another. Some people cannot manage without a hoist to transfer from A to B. This doesn’t have to mean that travel is out of the question. If you are hoisted, chances are, to save space and for convenience, you have a ceiling track in your home. Unfortunately, this isn’t portable. There are however portable hoists available for purchase or hire. See the image below. If hiring a hoist, always check the dimensions with the company to be sure that it will fit through doorways.

Hoist
Picture Of A Portable Hoist

No hoist is small by any means but you can see that the one pictured above does fold and can be moved about. For the purposes of this blog post, all images are taken from mobility websites and I’m not endorsing any particular product just giving some idea of what’s available. If you use something that I haven’t included in this post. Please get in touch.

Patient transfer aids

If you don’t need a hoist but need some help transferring there are many disability aids available. You do need to be able to weight bear to use these.

Patient Turner
Patient Turner

A patient turner, like the picture above, is a device that assists you to transfer without putting a strain on the person assisting you. To use; stand on the disc with knees against the pads, holding onto the bar at the top. The bar can also be used to pull yourself up into a standing position and the patient turner can be wheeled short distances by your PA/carer. I’m not sure how portable they are in practice but the top bar can be unscrewed for transport on most models.

Patient turntable

Patient turntable
Turntable

The image above is of a patient turntable, a more portable device then the patient turner. The disc turns around, enabling an individual to be assisted from A to B without having to struggle to move feet and turn their body. To use; stand on the disc and, with the help of someone else, the movement to turn around is initiated, the disc turns. This is what I use to get from my wheelchair to bed. By positioning my wheelchair next to the bed, disc on the floor, under my feet, I can stand, (with the help of my PA.) The disc turns and my legs go from being in front of my wheelchair to in front of the bed or vice versa, a 90-degree turn has been achieved and all I have to do is stand, very portable.

Transfer/Bath Step

I use a bath step because it is very rare that furniture like beds and chairs are low enough for me to transfer onto. Steps like this are sturdy, non-slip and add height for those of us who need a bit of help in that department. I use it together with the turntable above. The step I use is made up of different blocks so that you can add or take away layers as required. It is very useful and in my case means I can stay in places where otherwise I would need a specialist bed that is height adjustable.

Transfer/Bath Step
Transfer/Bath Step

Funiture blocks

These blocks come in different heights and in rectangle, square or round shapes. They can be used to make furniture higher, either for transfers or so a hoist can be slid underneath, e.g a bed. Hotel staff, if asked, will position the feet for you but the bed, chair, etc will have to have feet of their own that can be encompassed by the blocks. Again it is something simple that turns the inaccessible accessible. Many are also stackable for storage.

Portable Ramps

Depending on what steps and access are available a portable ramp may be a good investment. These can be expensive, but if you’re patient some good bargains can be found online. I brought a 3ft ramp off eBay last year for £15. It lives in my car boot so I have it with me when I need it.

Picture Of A Portable Ramp
Picture Of A Portable Ramp

Grab bars

If grab bars have to be in a certain place to be accessible, suction grab bars can make the difference between not being able to stay somewhere and managing. They need to be fixed to the wall by someone with a lot of strength and having done so, weight should be put through the bar by someone who can cope if the bar falls off the wall. Only then should the person requiring the bar, start to use it. Prices start from under £10 to over £100. Some are better at sticking to walls than others. The ones I use are called Mobeli, expensive but worth it.

Grab bar
Grab Bar

Shower seats

If you need something to sit on whilst in the shower there are plenty of portable seat options, like the one below. However, you do need a degree of balance which I don’t possess. That’s why I always ask if a shower has a seat attached to the wall. This means I can lean back on the wall for balance and affix a portable grab bar next to me to hold onto. I use a wheeled shower chair at home but it’s definitely not portable. There are also stools, some of which can be folded. These take up less room in luggage but have no back.

Portable shower seat
Portable Shower Seat

I hope you have enjoyed reading this post and are inspired to begin planning your trips away, ready for when this crisis is over. For now, take care of yourselves. Stay home and stay safe!

Look out for my post: Things to keep you entertained while self-isolating

What Independence Means To Me

Happy New Year to you all.

Still fighting for independence – Nothing’s changed

The OT assessment in December 2019 has changed nothing! Since publishing my last post my PA had to leave her job due to health reasons. Two days later my Social Worker emailed me to say the Direct Payments Team were enquiring whether my payments should be suspended as I no longer have any carers! This response upset me and demonstrates perfectly what is wrong with the current system. Instead of being offered support to find a PA and therefore continue my independence, my needs were being questioned! I explained that I needed the money available to be able to employ replacements, not to mention to pay HMRC. Thankfully, after a few more emails back and forth Social Services decided things could be left as they are.

Do I expect too much in thinking that that should’ve been obvious without me pointing it out?

Direct Payment budgets are hard-won and everyone I know would gladly give up the money for care in exchange for not actually needing it in the first place.

This struggle is what inspired me to start this blog as I know I’m not the only one. I’ve been fighting for my independence for the last ten years and the fight is wearing thin and taking its toll!

Independence

Being independent means being able to live without the assistance of my parents. The dream of being able to do everything without outside help is not realistic or feasible. My plan was to get around the need for care assistants by installing ceiling track hoists all over my flat and hoisting myself everywhere. A good plan, in theory, brought on by my determination to have choice and control. In my determination, I pushed myself too far.

Pushing my limits

I have permanently hurt my back and my neck struggling as I did but I’m glad I tried. Without trying I would never have discovered my limits, even if those limits have been increased by my actions. I’m not advocating that people push themselves to the limit but for me, at the time, it was the right choice.

Exhausted without the correct support!

Without the correct support, I was exhausted by the time I was out of bed in the morning and even if I had the energy to go out I could only leave my flat for a couple of hours as my toilet was the only one I could use without help. By the time I moved back in with my parents, fourteen months later, I could barely sit up in my wheelchair and had to undergo over six months of physiotherapy to get me somewhere close to my normal functionality.

I still find the idea of needing someone with me to assist restrictive and would rather do things myself. When going through care assessments I always find the process demeaning.

Lazy not disabled

The OT who visited seemed convinced that she could teach me to transfer independently given enough time. Trying to keep calm, I commented that if she could do that then I’d buy her a box of chocolates and happily live my life. Why do people look and see more ability than is there? I had enough motivation growing up to become self-sufficient if it were possible. People think I’ve just missed a trick, that I actually can do things, I just don’t know-how. Am I alone in this? Stating I’m more able just delays the evitable which may save money in the short term but it may cost more longterm if I and my parents get ill!

Upset figure

Disability equipment concepts to increase independence

There are many concepts and products that have been developed to increase the independence of ‘disabled’ people. Go onto any disability shop and you will see countless aids designed for increasing independence that range from button hooks to bum wipers!

Wheelchairs focus on lack of leg and feet functionality but assume the rest works as it should. A good example is the video below that’s been appearing on Facebook for a number of years.

Video of a Wheelchair Concept

Thinking positively, it’s great that people are thinking about access and recognise that barriers exist. The height of things, travelling and steps are very real obstacles that wheelchair users face daily.

Can you spot the first problem with this concept?

…How many of you go to bed fully dressed and ready for the day?

…How many of you can roll, either at all or whilst keeping your body in a perfectly straight line?

I don’t go to bed with my clothes on! When I roll over my head sometimes ends up on one side and my legs in another direction entirely! Never symmetrical!

Ok, so I’m nitpicking and personal care isn’t really addressed in these types of concepts but, if the chair was made, how would the owner get up, go to the bathroom and get ready for the day? A unique selling point for this product is that it lays flat for easy transfers but how are seated transfers catered for? While some practicalities have been thought about others have been ignored.

Questions figure

Current equipment

Hoists, (the current go-to for moving from A to B,) are great pieces of technology and mean that people can be transferred safely if they can’t move. However, even portable hoists aren’t very portable and certainly not designed for the user to use independently. Individuals who rely on a hoist are stuck if there isn’t one available.

I hope to help create a solution that is portable and can be operated solely by the user.

I’m nowhere near creating anything yet but I have ideas and I’m hoping that people reading this will want to get involved and bounce ideas around. Every wheelchair started off as a concept and we now have chairs that can climb stairs, albeit in a very wobbly way! Wheelchairs can now stand people up so why not a chair that can transfer someone from A to B?

These are my ideas of independence, what are yours?

Reviews

In this section, I will post reviews about the equipment I’ve used/currently use, venues I’ve visited, day trips, shows I’ve been to and holidays. I hope you find them interesting and helpful. The reviews on this website are my opinion only and based on how useful I find the equipment.

Reviews can help promote independence

Independence is important to me therefore I always aim to choose products that enhance my quality of life. This usually means that it is not a standard product as things have to be adapted to suit me. This is known as an inclusive design. Reading product reviews and recommendations helps me choose which products to buy and gives me ideas for making life easier.

What I look for when choosing products to enhance my life

The main thing I have to look for is the height of products. It’s difficult to be sure of my height as I cannot stand straight but I’m approximately 4ft 8 inches. This lack of height coupled with how Cerebral Palsy affects my muscles means that products need to be really low. Therefore hardly any standard products are of use as they are all too tall! This is why I take a step with me when I’m away from home but this isn’t practical for daily life.

The other thing I look for in disability aids is portability. This is rare as disability equipment tends to be quite bulky. I often find that non-disability products, repurposed, work best. Read my article for some ideas.

Reviews of places I’ve been to

Reviews of places I’ve seen or stayed at will be largely based on my own access needs but I will include other information if known. If you have a specific question you would like answered or would like me to review please contact me.

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