Thursday 5th March 2020
My good friend and fellow wheelie wench, Lucy Hudson, is a published author!
As today is World Book Day, I thought I would encourage you all to check out the two poetry anthologies she co-wrote with writer, Justin Brown.
My good friend and fellow wheelie wench, Lucy Hudson, is a published author!
As today is World Book Day, I thought I would encourage you all to check out the two poetry anthologies she co-wrote with writer, Justin Brown.
I was recently sent a few products to try, by the lovely folk at Manage At Home and PETA [UK] LTD.
This stylish food preparation board, made from sustainable Rubberwood, is a multi-purpose, top quality kitchen aid.
I was so impressed with this piece! It is really attractive and doesn’t look at all like a standard disability aid.
It is designed for those with weak hand function, including impaired grip, poor hand control and tremors.
Using only one hand, the Easi-Grip board allows you to grate and slice food effortlessly. The spiked area ensures food is kept in place for peeling and cutting.
Several essential items all-in-one: Stainless steel fine/coarse graters, slicers, collecting bowl, spiked area, and long-lasting wooden board.
I have muscular dystrophy ~ contractures, poor grip, and very little strength. Despite this, I found the Easi-Grip food prep board really easy to work with, and a huge asset. I no longer need to ask for any help, which is a big deal for me!
My mum, who has osteoarthritis, loves this equally as much as me! Suffering with joint pain and stiffness, she found it significantly easier to use than regular kitchen tools.
This popular trio of knives has undergone a recent design revamp – the ergonomic handles are now thicker, making them easier and more comfortable to use.
The bright lime green areas indicate the “soft-feel” non-slip areas, as well as making them a bit more modern and aesthetically appealing compared to standard kitchen knives!
I would highly recommend all of these products to anyone, regardless of (dis)ability. They are top quality items and I am so thankful to Manage At Home and PETA [UK] LTD for sending them to me. I love to cook, and these kitchen aids have made life a little easier for me.
As a non-ambulatory wheelchair-user for the past two decades, I’ve experienced many frustrating encounters with lifts/elevators.
~ Being unable to fit inside because they’re occupied by physically fit (lazy, ignorant) able-bodied people
~ Getting stuck in them (once on a very old ferry!)
~ Getting stuck out of them (broken/out of service)
~ Waiting, waiting, waiting…
As a teenager, I went shopping to my local TJ Hughes store (super cool!), which was on three floors. It was a crappy old lift but nevertheless I travelled to the top floor because, well, I wanted to!
When I came to use the lift again, it wouldn’t work – it was completely unresponsive.
Unable to walk at all, I was stranded on the third floor in my manual wheelchair.
More than a little irritated, I started hammering the call button on this lift, “you WILL bloody work!!”
At this point, I was left with no other option than to be manually carried down two flights of stairs by a member of staff. Talk about awkward!
Well, it was either that or, frankly, I’d probably still be stuck there now.
Thankfully, I’m teeny tiny, my wheelchair was lightweight and foldable, and the guy who carried me was young and smelt amazing! I was tempted to ask what he was wearing but thought better of it. I’m not that weird…
It was fortunate that I wasn’t in my current powered wheelchair. If I had been, I honestly don’t know what would have happened…forever stranded in TJ Hughes!
It’s a memory that’s imprinted on my mind. It shouldn’t have happened, it was annoying, undignified, embarrassing and yes, at the time, I was thoroughly pissed off!
Although, on reflection, it is pretty funny. Got to laugh, right!
Of course, it made me wary of using lifts in the future. But I really don’t have a choice! I’m not going to avoid them and miss out just in case something bad happens.
It’s inconvenient at the time but always resolvable.
IF I do ever get stuck again, well, then I’ll worry about it…IF.
Side note ~ If you are fit and able, and have two fully-functioning legs, please use them! Kindly take the stairs and let those in need access the lifts/elevators. Ta muchly!
We’re now in the midst of January, and many are following a “new year, new me” health and fitness regime.
Most of us over-indulge at Christmas. Too much rich food and too much booze.
Everywhere you look, it seems people are trying to lose weight and tone-up. Fair play to them! Do what makes you feel good.
Okay, so…I’m teeny tiny. Pixie sized! My weight has always been fairly consistent and never really fluctuated.
Of course, my condition influences this. Muscle weighs vastly more than fat, right? Well, I have very little muscle mass. And so my BMI is always going to be much lower than the average.
I won’t lie, I’ve always consciously monitored my weight and my calorie intake. Not due to vanity, but practicality.
I am non-ambulant and therefore cannot transfer independently. I get thrown around a lot! From chair to chair, chair to bed etc. If I were significantly heavier, life would be much more difficult!
People who struggle to lose weight often ask me how I stay so tiny, considering I’m unable to exercise. Well…
~ Growing up with older brothers helps! I’ve always scraped food off my plate onto theirs. And they were always happy to finish off any food I left.
~ Study food labels and count calories.
~ Self limitation. I’ve almost trained myself to say no when someone offers me chocolate or a biscuit. Bad, I know.
~ It might sound silly but, over time your stomach does shrink and your body adapts. You learn to function on fewer calories.
*Now, to make it absolutely clear, I am in no way dictating, advising or advocating such bad habits! I am very much aware that this is unhealthy behaviour.*
When I’m ill, I eat less. When I’m really stressed, I stop eating. In these instances, I am NOT consciously monitoring my weight.
Over the past 2 months, I have unintentionally lost weight. This will no doubt affect my overall health and wellbeing, reducing energy levels and leaving me vulnerable to infection and illness.
Believe it or not, increasing calorie intake is far more challenging (for me) than you might imagine. It’s difficult to break the habit of a lifetime!
Before, I would go literally all day without eating a thing. No breakfast, no lunch. I would then pick at my dinner and that would be it.
I am now constantly reminding and forcing myself to consume food and drink, little and often, throughout the day.
If I can put on half a stone, I’ll be happy. I’ll still be skinny, but I’ll be healthier. That can only be a good thing!
In October 2018, I was able to privately purchase a new powered wheelchair, replacing my worn-out 8 year-old Quantum 600 mid-wheel drive.
I opted for a Sunrise You-Q Luca, mainly due to it’s compact and manoeuvrable design.
I chose a rear-wheel drive (having found my mid-wheel drive Quantum to be less capable over rough terrain).
I received a voucher from NHS Wheelchair Services to the value of £1750, and a £2,500 grant from the Joseph Patrick Trust.
The total cost of the chair was just over £7,000. A huge expense, but compared to most other powered wheelchairs on the market, the You-Q Luca is definitely one of the cheapest options!
I really wanted flip-up armrests on my new wheelchair to make transferring easier. However, over the past year, the soft foam pads on the armrests have slowly disintegrated.
Bearing in mind how expensive this equipment is, and how long it took to raise the necessary funds, I take good care of my wheelchair!
I have repeatedly attempted to patch-up the armrest pads with super glue. But they are now in a state of non-repair.
Considering the price and the fact that the wheelchair is only 15 months old, I am really shocked and disappointed with the product.
The wheelchair itself is great. The armrest pads are total crap!
I bought the wheelchair from a company called Better Mobility.
I cannot fault their customer service or the assessor who bought a number of demo chairs to my home to try prior to purchase. He was very knowledgeable, patient and not at all pushy (as some sales rep’s can be).
However, I find the quality of the armrest pads to be extremely poor.
As you will see from the image below, to replace them will cost an additional £83.40 – a rather hefty sum to replace an item on a relatively new powered wheelchair!
I am reluctant to pay the £83.40 to replace the armrest pads, particularly as they are likely to disintegrate again within a few months. In the meantime, I am left with an unsightly product that is literally falling to pieces.
This is not to say that the disability/impairment, whether temporary or permanent, is the primary cause of the mental health issue. It could be a contributing factor, or they may be completely unrelated. You might just be super lucky and have been blessed with both – Double whammy!
Equally, those struggling with their mental health will often (if not always) experience physical side effects, such as headaches, fatigue, insomnia, restlessness, nausea and chest pains.
Essentially, what I’m saying is, the mind affects the body and so the body affects the mind.
I was born with a rare form of muscular dystrophy – a physical disability – that has progressed over time. I am now a non-ambulatory wheelchair-user, having lost the ability to walk at age 10.
My condition has a considerable effect on my body and physical capabilities. With the best will in the world, there are many things I cannot do.
For example, my older brother is very fit and able-bodied. He has travelled the world and often goes trekking through the countryside and climbing mountains.
Last year, he and some mates completed the Three Peaks Challenge in aid of Muscular Dystrophy UK. Gruelling and possibly a little bit crazy, considering the 3 lads did all the driving themselves – but wow!
I often wish I could be out there with him. It might not be everyone’s cuppa, but it would be nice, just once, to experience that sort of thrill and adrenaline rush. A real physical accomplishment whilst being in the midst of nature.
But, I can’t. And I never will. Of course, this gets me down and impacts on my mood. Yes, I wish I could walk, run, dance, be completely independent and spontaneous. But I can’t. I am limited and reliant on support from others to live my life. This is something I have no choice but to accept.
There is no treatment, no cure, and no pill I can pop to help the situation. For lack of a better phrase, it is very much a case of, deal with it!
I cannot control my disability or how it affects my body. Therefore, it is important to focus on the things I CAN do and control.
I can’t dance, so I like to watch the dancing (yes, I’m a sad, old Strictly fan. Don’t care!)
I can’t drive, so I have a passenger WAV (wheelchair accessible vehicle), which allows me to get out and about.
I can’t walk or run, so I roll (with style)!
Admittedly, I’m pretty crap at sorting my own problems out. So I tend to focus on other people’s 😂 Not necessarily a good thing, but there ya go!
Living with a physical disability is a way of life. It is inflicted on us – we have not chosen this path. Similarly, living with a mental health illness is a way of life. So what you gonna do? ADAPT or Die!
They say bad luck comes in threes…or is it multiples of three?
I’m generally fairly tolerant with day-to-day annoyances and ignorant people.
As a wheelchair-user, I’m used to complete strangers who feel entitled to stare or approach me for interrogation. They tend to be so ridiculous I choose to simply laugh it off.
Don’t sweat the small stuff, right.
But there are also times when my patience is wearing thin. Some days, I’m just not in the mood!
Today is one of those days.
I attended a routine hospital appointment and parked my Motability WAV in a disabled bay, with my blue badge clearly displayed, as usual.
As I reversed out of the WAV, I heard a woman stood directly behind me shouting, “I’m just having a nosey inside!”
*Cue eye-roll* Oh, feck off, lady!
I then waited in a small room crammed full of virally infested patients for well over an hour, only to be told the nurse I was due to see went home sick hours before. Which begs the question – why not inform me of this on arrival?!
I waited a further half an hour to be seen by another nurse. At least it wasn’t a wasted journey, I guess.
Having returned to my car, I was ever-so-slightly pissed off to find a parking ticket!
As soon as I got home, I logged-on to check out the meaning of this fuckery. As I suspected – no reason for issue, no explanation and no photo evidence.
Needless to say, I wrote a strongly worded appeal. Under no circumstances will I be paying this unjustified “parking charge”. No, just no!
I won’t go into details (it’s a long story!) But my battle with Continuing Healthcare has been a lengthy and stressful one, with absolutely no benefit.
Okay, putting things into perspective, this isn’t the end of the world! I’m now sat watching cartoons with my beaut of a nephew. So it aint all bad!
As I say, some days you’re just not in the mood.
Tomorrow will be kinder…we hope!
Anyone got any rum??
Josh Wintersgill, 26, was diagnosed with Spinal Muscular Atrophy Type 3 at 18 months old. He has been a full-time powered wheelchair-user since the age of 10.
SMA is a progressive muscle-wasting condition. As a result, Josh requires assistance from carers, though his disability has never prevented him from achieving.
He attended university, completed a placement year, works full-time, started his own business, and is now on the Great Britain Air Rifle Talent and Development Squad. Josh is able to drive a wheelchair accessible vehicle (WAV) and has lived independently since leaving his parental home at 18.
During my last year of college, I expressed an interest in going to university. After research with my social worker and factoring my needs and desires, we identified appropriate universities that fit my criteria. I then had to decide on a live-in carer or a care agency. I opted for the agency route in order to be as independent as possible.
Once accepted by the university, I sorted accommodation and started looking for care agencies. My social worker provided me with a list of care agencies registered with the CQC, but it was down to me to make arrangements. The first care agency turned out to be unpleasant! So, after 4 months, I switched to another agency who I remained with for the duration of my university experience.
My overall uni experience was, let’s say, fruitful! From falling asleep in my wheelchair in front of the mirror to having university staff put me to bed within the first week because I was so drunk. It was clear that I was going to make the most of my 3 years at uni!
I got involved with numerous societies and activities to keep myself active and included with the student culture. I had a fantastic time and never experienced any discrimination or abuse. The staff made me feel at ease, allowed me to be as independent as possible, and provided access to necessary resources.
I graduated with a first class honours in IT Management and Business and, 4 years after graduating, I was invited back to receive an Honorary Masters in Technology.
The general employment process with assessment days, face-to-face interviews and telephones interviews were fairly seamless. Most employers are extremely accommodating if you give them notice and make them aware of your access needs.
I do remember one assessment day with a popular car manufacturer where the activities impacted my ability to take part due to my physical requirements. This may have affected their decision to not employ me, even though I was just as capable, if not more so, than the other candidates. But apart from that, I have not had any issues finding employment.
Obviously, my disability limits me physically. However, as I work in technology it does not affect my ability to do my job. Yes, working full-time is not easy for me, but it’s also important to remember it’s not easy for able-bodied people either.
I have always been the sort of person who just gets on with it. I also believe that with technology making everything more accessible for disabled people, in most cases, our disability should not affect our ability to work. If you have any employer with an inclusive work culture, who is willing to support, understand and give you flexibility within the work place, then for sure you can work!
This gave me a sense of achievement and fulfilment. I believe that sharing experiences, whether positive or negative, helps others to follow their own passions and aspirations.
There is a general consensus that employment for disabled people is difficult to find, and arguably this could be due to the lack of inclusive employers. This is what makes the entrepreneurial world an attractive proposition for disabled people – it is flexible, offers them ability to work around their needs, and also avoids the hardship of being in a culture that is not disability confident.
I have always wanted to start my own business. When I realised I could create a product to make travel more assessible for disabled people, it was a no-brainer decision for me.
When you’re working on something you’ve created and can see the life-changing benefits, there is a real feeling of fulfilment.
Winning the award gave me a sense of personal achievement and recognition. It gave me a fresh perspective on developing my own business and the benefits it can provide versus working for a large company.
The prize money and a business deal with easyGroup Ltd enabled me to give up my full-time job in order to pursue my own business. This allowed me greater flexibility regarding how I manage my disability.
The challenges with the private rent sector (PRS) are vast, especially given almost 85-90% of PRS homes are inaccessible for wheelchairs.
After applying for the Stelios Awards, I was told I had to move out of a good sized two bed apartment due to the landlords requiring their property back. Having lived there for 3 and a half years, it was time to start the dreaded challenge of finding a needle in a haystack.
It’s purely pot luck if you can find an accessible house to move into straight away that doesn’t need any adapations.
After fighting with the council and various estate agents, we eventually managed to find a property on rightmove. Now, when moving home I need to consider carers since I rely on them throughout the day. My main PA (personal assistant) was unable to continue working for me, and so I had to re-jig and was then only able to maintain one PA.
Finding an accessible property and then having to manage your care situation around it is extremely stressful, tiring and irritating. On top of this, I was working full-time, getting the business of the ground, doing weekly exercises and training for the Great Britain Shooting Talent and Development Squad.
My travelling experiences involve being manhandled from wheelchair to aisle chair and then manhandled again onto the aircraft, which is highly undignified and uncomfortable. I therefore sought to create something that would help me travel in a more comfortable and dignified manner.
The easyTravelseat is a sling/seat combination that is designed to work as an in-situ piece of equipment. It is placed in your wheelchair, and you then remain seated in the easyTravelseat until you reach your destination.
For instance, when flying, you would remain comfortably and securely seated within the easyTravelseat for your entire journey through the airport, onto and during your time on the aircraft and off again.
Once I created it, I realised the many benefits it offers disabled people. It allows users to travel in a more safe, dignified and comfortable way, on all modes of transport. Furthermore, it opens up leisure opportunities such as canoeing, kayaking, skiing and so on. The easyTravelseat enables users to be transferred quickly and easily without having to be manhandled. The user is comfortably seated with their own cushion, a gel pad or foam.
The development process involved researching the types of equipment already available, and the demand for such a product. I conducted market research to determine whether wheelchair-users would find the product useful. Then we identified a concept and progressed to prototyping in order to test how the seat would work. We then moved on to the point of manufacturing the seat and getting the required medical marking and approvals in place. During this process we had been working initially with airports around the lifting side of the device, including our sling manufacturer and then an airline. We started production in February 2019.
The easyTravelseat will cater for the majority of disabled users with the exception of very young children, bariatric passengers or people with extreme contoured seating.
The difference with the easyTravelseat is the specific design and application of use for aircraft, whilst ensuring passenger comfort. It allows users to be moved around the aircraft, including during an emergency, and to then disembark the aircraft in a much safer, dignified and comfortable manner. All other slings are designed to be removed and offer no protection or comfort when in-situ.
I think the most important area airlines should be focusing on in the immediate is the loading of wheelchairs, both electric and manual, to prevent damage. It also concerns me the people on the ground lifting these wheelchairs are at risk of causing serious damage to themselves. There is industry equipment to load wheelchairs onto an aircraft without having to manually lift a wheelchair. This would help the loaders and reduce the amount of damage to both the chairs and the airport staff. Also, a secure area in the hold may also be advantageous to prevent luggage damaging wheelchairs during turbulence.
I also think the UK should be pushing (as Canada has done successfully) the airlines to provide free tickets for a carer when flying with a disabled person. After all, the airlines make it a necessary requirement for WCHC passengers who cannot move without any support to fly with a personal assistant/carer.
Airlines should also be addressing the toileting situation inside the cabin too. It is currently impossible for the majority of disabled passengers to access the toilet whilst flying.
Regarding hidden disabilities, there are those who are much more calm when they are surrounded by objects which are all different colours.
Long term, all airlines should be looking to allow wheelchair-users to remain seated in their wheelchair, inside the cabin, during the flight.
The future is bright for easyTravelseat! We are off to a steady start with interest across the globe. We believe in an accessible aviation world and are able to provide an immediate solution to help reduce some of the significant problems with maintaining safety, dignity and comfort when flying with a wheelchair.
We will now look to ensure easyTravelseat is easily accessible in as many countries across the globe as possible in the coming years.
Thanks to Josh Wintersgill for answering my questions.
Yesterday, I discussed my current struggle to overcome a chest infection (not to be underestimated for those with muscular dystrophy).
Of course, living with the rare muscle-wasting condition UCMD has many physical implications on my body:
~ joint contractures, scoliosis, progressive weakness, inability to weight-bear and respiratory decline ~
Inevitably, there is an additional impact on my mental health.
For the most part, I am upbeat and stay as active as possible. But admittedly, recurrent chest infections often get the better of me. It can feel like you’re fighting a losing battle, and frankly, it is bloody hard to remain optimistic when life is completely put on hold for months at a time, during which I’m unable to leave the house.
The considerable down-time makes forward-planning almost impossible. Over the years, I’ve missed out on many events and cancelled numerous birthday celebrations due to ill health. It is difficult to commit to social arrangements and accept invitations for fear of letting people down, which then leads to guilt.
• Have to cancel plans
• Not respond to calls or messages right away
• Be unsociable
• Be impatient
• Not want to talk
• Be unable to focus or maintain attention
• Spend a considerable amount of time resting and/or sleeping
• Lack motivation
• Be unproductive
• Feel pessimistic, frustrated and emotionally exhausted
• Feel isolated yet unable to see anyone
When I’m ill, I am out of action for a month, sometimes longer. The days are long, tiring, monotonous and utterly unproductive. It is easy to succumb to despair, so for me it is essential to establish a focus and a purpose.
• Rearrange any cancelled plans
• Don’t shut people out
• Accept support from loved ones
• Pet therapy ~ a cuddle from your beloved pet can work wonders!
• If possible, go outside, look up at the sky
• Give yourself a daily reminder of at least 3 positive things in your life
• Say out loud, “I will get through this”, “I will get better”, “I won’t be defeated”
• Don’t overexert yourself. Allow yourself the time and space you need to rest and recover
Life is a gift, but it can also be a bit shit sometimes! Always remember, you are stronger than your struggles. 💪
Once again, I’m out of action with a chest infection. Although unpleasant, this isn’t generally a concern for the average person. But for those like me who live with a neuromuscular condition (in my case, UCMD, a rare muscle-wasting disease) a chest infection is not to be taken lightly. It can develop scarily quickly and lead to more serious complications such as life-threatening pneumonia.
I have always struggled with chest infections. Every time I catch a common cold, it heads straight to my chest. As a child this necessitated a course of banana medicine (Amoxicillin), chest physio and a week off school (okay, so it wasn’t all bad).
As I have aged and my condition has deteriorated, I now find chest infections much more difficult to cope with. It can take me a month, sometimes longer to get back to any sort or normal. In the meantime, life comes to a complete standstill.
Due to the severity of my impaired lung function, I struggle to cough effectively and clear secretions, making the seemingly simple act of breathing incredibly difficult. As a result, I become totally reliant on my BiPAP machine, and find removing it for a mere 10 minutes a major challenge.
When I feel myself getting ill, I throw everything at it:
• Respiratory physio
• Stay hydrated and eat as much as possible for energy and sustenance
• BiPAP to support breathing
But in the end, for me, it really is a case of waiting it out and remaining as positive and defiant as possible.
Obviously, this is just my personal experience. There are many forms of muscular dystrophy, and each individual reacts and responds differently to respiratory illness. But one thing is true for all of us –
You may often see members of the NMD community banging on about infection control and the importance of the Flu jab, and with good reason! For us, this really is a matter of life or death.