Coronavirus | Thoughts from a Disabled Pixie

Needless to say, we are in the midst of uncertain and unprecedented times.

Photo of a card reading, 'keep hanging on in there' (left) and a medical face mask (right).
Photo of a card reading, ‘keep hanging on in there’ (left) and a medical face mask (right).

Everywhere we look, we are bombarded with the latest news regarding Covid-19; on the TV, radio, newspapers and the Internet.

While most is factual information from reliable sources, there is also plenty of unhelpful rumour and speculation, particularly on social media.

Personally, I don’t find it beneficial to watch the News three times a day, unlike my folks!

We all know by now what we should and shouldn’t be doing to limit the spread and keep ourselves and each other safe.

Guidelines on social distancing during the Coronavirus pandemic.
Guidelines on social distancing during the Coronavirus pandemic.

Why add to the stress and anxiety? I’d rather focus on other things; happier things!

Of course, the situation affects everyone in some way; domestically, financially, their work, education, physical and mental health.

This is an incredibly frightening time for many, myself included. I am considered high-risk, since I have a progressive muscle-wasting condition that affects my breathing.

A Friendly Reminder from a Delicate Little Pixie

Though we all must now adapt and change our way of life somewhat, it’s important to remember this is only temporary. Things will improve.

I’ve heard people complain about the restrictions; mostly young, fit, able-bodied people. Yes, it’s a pain in the fat ass! But it isn’t forever.

Funny meme about the Coronavirus featuring the character Jay from The Inbetweeners.
Funny meme about the Coronavirus featuring the character Jay from The Inbetweeners.

Also, please be aware that many disabled and chronically ill people are repeatedly forced into prolonged periods of self-isolation throughout their lives. Plans are often cancelled last minute due to poor health. This isn’t new to them.

So, before you complain because you can’t go out partying with your mates, or to the pub, please consider those for whom limitation and isolation is a way of life.

Final Thoughts

Show your thanks and appreciation for the NHS and those working in health and social care.

Illustration of NHS healthcare workers being saluted by Superman.
Illustration of NHS healthcare workers being saluted by Superman.

Be mindful of the most vulnerable in society, and help out if you’re able to.

Print-out for those wanting to help anyone self-isolating due to Covid-19.
Print-out for those wanting to help anyone self-isolating due to Covid-19.

Please don’t panic buy or stock pile. This isn’t the apocalypse, people!

Where possible, please support local businesses.

Be sensible, be safe, be rational.

This too shall pass…

Product Review | Independent Living

I was recently sent a few products to try, by the lovely folk at Manage At Home and PETA [UK] LTD.

The Easi-Grip kitchen items are designed to help older people, and those like me with a disability, prepare and cook food independently.

Easi-Grip Food Preparation Board

Easi-Grip Food Preparation Board
Easi-Grip Food Preparation Board

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.

Easi-Grip Food Preparation Board
Easi-Grip Food Preparation Board

It is designed for those with weak hand function, including impaired grip, poor hand control and tremors.

Slicing a sweet potato using the multi-purpose Easi-Grip food prep board
Slicing a sweet potato using the multi-purpose Easi-Grip food prep board

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.

Easi-Grip Food Preparation Board
Easi-Grip Food Preparation Board

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.

Easi-Grip Knives

Easi-Grip Knives 1. Bread knife 2. Carving knife 3. All purpose knife
Easi-Grip Knives 1. Bread knife 2. Carving knife 3. All purpose knife

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!

Demonstration of the Easi-Grip knife being used to cut a vegetable on the Easi-Grip food prep board
Demonstration of the Easi-Grip knife being used to cut a vegetable on the Easi-Grip food prep board

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.

*Disclaimer*

This post is in collaboration with Manage At Home and PETA [UK] LTD. The products were gifted to me in exchange for an honest review. Opinions expressed are entirely my own.


Many thanks to Manage At Home and PETA [UK] LTD

Related Blog Posts:

Product Review | Bellavita Bath Lift from Manage At Home

Guest Post | Wealden Rehab ~ Occupational Therapy

Wealden Rehab Equipment Specialists share the benefits
of having an Occupational Therapist in the team

Care equipment specialist Wealden Rehab works alongside in-house and external qualified occupational therapists (OTs).

Our in-house OT, Gayle Cardwell has 20 years experience, benefiting the team with clinical skills that can
be transferred into private practice. The collaboration between care equipment
providers and clinical experts results in a truly personal service.

Gayle offers her knowledge and understanding of both mental and physical health and wellbeing to the product advisors at Wealden Rehab, emphasising the importance of a personal approach being necessary to achieve the best
outcomes.

Assessing each client holistically encompasses the environmental considerations, which improve solutions for installation of ceiling hoists and
more detailed clinical considerations for seating.

Installation of multiple celing hoist units at Foreland Fields School

Upon prescribing a piece of equipment, the occupational therapist must clearly show their clinical consideration. Gayle has devised and shared documents to encourage clinical reasoning when prescribing Wealden Rehab’s most popular
products. The documents are aimed at prescribing OT’s to consider the individual, environment, the task and to help justify the most appropriate outcome for the end user.

Gayle has provided a rigorous training program for all of Wealden Rehab’s product advisors, through individual and group training sessions. Her ongoing program is designed to enhance the assessments and the training they offer to their customers, which brings extra value.

Wealden Rehab recognise the
significance of having an OT in the team and a clinical approach in devising and delivering training for OT customers when prescribing Wealden Rehab products. We have observed increased confidence, greater understanding from OT’s in the
set-up and recommendation of our products, resulting in improving the end users
experience.

In the future, Wealden Rehab will be adding to the range
of products and, with specialist input, Gayle will be able to critique and share her clinical knowledge regarding new products. This will surely have an impact on the quality of life of many users, which is, Gayle says, ‘At the heart of
everything we do.’

Ceiling hoist installation by Wealden Rehab at the Chiltern School

Many thanks to Wealden Rehab for providing this guest post.

Disabled Life | Daily Frustrations

As some of you may know, I have the rare condition Ullrich congenital muscular dystrophy, and consequently, I am a full-time wheelchair-user.

I have just turned 31 (sooo old!) and, in order to live my life, I require support from personal carers.

Today, I (well, actually my mother) received the following letter…

Now, don’t you just love it when so-called “professionals” invite themselves to your home to drink your tea and eat your biscuits at a time and date to suit them?

How about…NO!

It seems the assumption is that disabled folk just sit at home all day, idly twiddling their thumbs ~ Nah, mate.

Not only that, they failed to inform me and instead wrote to my mother! WTF?!

I know I’m child-sized but I am in fact a fully-functioning adult who manages all aspects of her own care needs.

~ My disability!
~ My carers!
~ My business!
~ My life!!

I wouldn’t mind so much, only I’ve spent months jumping through hoops (not literally, obviously) and answering the most inane questions in order to qualify for NHS CHC (a continuing healthcare package – to pay personal care assistants).

*FYI ~ I am currently in receipt of Direct Payments, enabling me to employ and pay my own carers* 

As yet, I haven’t received a penny via CHC, though I did get a call to say an initial payment was made during the summer. Nope, sorry, no it has not!

(Little tip for you ~ when it comes to NHS/council funded care, QUESTION EVERYTHING!)

Rant over 😊

Have a lovely, lovely day 👍🏻

Flu | The Facts

Influenza (flu) is a highly contagious and potentially life-threatening virus. The symptoms can develop very quickly and, in some cases, lead to more serious illnesses like bronchitis and pneumonia. It is so important to get vaccinated as soon as the flu season begins (before December ~ UK).

Who is eligible for a free NHS flu jab?

– Aged 65 and over
– Pregnant
– Weakened immune system
– Certain medical conditions e.g. asthma, COPD, diabetes, heart disease, neurological disease
– Carers
– Family members of/living with immunocompromised individuals
– Living in a long-stay residential care home facility
– Frontline health and social care workers
– Children over the age of 6 months with a long-term health condition
– Children 2 years +

Flu Facts:

– Up to 1/3 of flu deaths are in healthy people.
– Public Health England estimate that an average 8,000 people die from flu in England each year, although the figure can be much higher.
– The vaccine is thoroughly tested and has an excellent safety record. The most common side effect is mild soreness around the injection site.
– Getting your flu jab EVERY YEAR is the best way to protect yourself and those around you.
– You won’t be protected against any new strains of flu that may circulate each year unless you are vaccinated every year. Also, the protection from the vaccine declines over time.
– The risk of having a serious (anaphylactic) reaction to the flu jab is much lower than the risk of getting seriously ill from the flu itself.

Related Blog Posts:

Flu Jab: Get Yours Today!

Cough & Cold Season | Chest Infection

Winter | Top Tips to Keep Warm

Winter | Top Tips to Stay Well

Guest Post | NHS Funding

Resource Allocation: A classic medical ethics topic that often rears its head in the inevitable reality of working in a cash-strapped public healthcare system.

Should the NHS fund this new expensive treatment for a rare disease?

Should the government pay for a new experimental cancer treatments?

Should X procedure be on the NHS, or Y?

The list is endless.

This blog covers a few basic ideas and concepts for you to broaden your understanding of why things are done as they are, enhance your opinion and help you think of the bigger picture.

Utilitarianism

One way of analysing resource allocation is using a utilitarian approach. Utilitarianism describes the moral theory that the most moral action is that which maximises the happiness (or in this instance healthiness) of a population. This seems quite a nice logical and fair systematic approach, but has one major drawback.

How do you quantify the benefits gained from a specific treatment?

Fortunately, Alan Williams, a health economist calculated a measure for doing this – the Quality Adjusted Life Year. This system described not only the length of life a specific treatment can give a patient, but also factors in the subjective quality of that life.

Interestingly, some of the ‘best’ treatments by this system including cataract surgery and hip replacements, owing the massive improvement in life these can bring (even though they are rarely viewed as life extending). However, despite quantifying the ‘best value’ treatments, this system still has its drawbacks.

Firstly, many argue that this system ignores both the old, and the chronically ill. The old will have fewer ‘life years’ per treatment and the chronically ill will have a lower ‘quality of life’ per treatment by this system, and will thus lose priority in this system.

This a great concept to think about as many new drugs are for specific diseases, which are often rare and chronic, or those which affect the elderly. Secondly, ‘quality of life’ is a highly subjective term, and, although this system goes someway to quantify it, the end result is still a subjective rating score.

Egalitarianism

Another way of analysing these topics are through an egalitarian approach. This theory states that resources should be distributed equality unless an unequal distribution would work to everyone’s advantage. However, in reality, there is not unlimited funding and therefore equality of distribution means that expensive treatments (the new drugs often featuring questions) could not justifiably be funded.

This approach does promote a decent minimum standard of care (good for everyone) and some argue that more expensive treatments can be funded elsewhere. For example, charities and private companies could find a place in an egalitarian healthcare system to fund more niche treatments.

Libertarianism

Another viewpoint worth nothing (though one which many, especially in the UK, would be against) is that of libertarianism. This system states that healthcare should follow individual liberties and free market principles – i.e to be privatised. This is an interesting viewpoint to discuss, but, given the many drawback of private healthcare and the NHS in the UK, it’s not one we in the UK really consider.

So, there we have it, a few basic approaches to the classic question of ‘should we fund this expensive new drug’.


This guest blog post is provided courtesy of writer Adi Sen, from the website UniAdmissions.

Disclaimer: The views and opinions expressed in this article are those of the author (UniAdmissions), and do not necessarily reflect the official policy or position of myself or any other organisation.

International Women’s Day

To celebrate #InternationalWomensDay, here are some motivational words of wisdom from just a few of the many inspiring women throughout history.

These women advocate equality, inclusion and disability awareness.

Above: Deaf-blind American author and political activist, Helen Keller (1880 – 1968).

Above: Rosa May Billinghurst (1875 – 1953), was a women’s rights activist known as the “cripple suffragette”. She suffered polio as a child and, as a result, was left unable to walk.


What International Women’s Day Means to Me

Light is often shone on independent career women and high-profile personalities; celebrities, public speakers and so-called ‘world changers’.

Of course, these women deserve our respect and applause. But I’d like to also draw attention to the “ordinary” every-woman.

These are the women we are not aware of. We don’t know their names or their stories. These are the women behind the scenes who just get on with life, however challenging.

The single mum’s.

Those living with debilitating conditions and struggle to get out of bed each morning.

Those caring for multiple family members, who don’t have the option to go on holiday or pursue a career.

Women who are relied upon by disabled children and elderly relatives, and have no support or recognition.

Many suffer and struggle in silence. They simply get on with their lives without any fuss or complaint. These women deserve to be celebrated too!

They play a vital role in society – one that takes endurance, tenacity, strength of character and sheer grit. It takes a special kind of person to achieve this.

So remember, you don’t need to change the world to deserve respect and recognition. Being loved unconditionally, appreciated and making a difference to just one person is EVERYTHING!


Related Blog Posts:

International Women’s Day 2018

Interview | The Trailblazing Women of Muscular Dystrophy UK

Guest Post | Home Healthcare Adaptations

Today’s post is a guest feature from Michael Leavy, Managing Director of Home Healthcare Adaptations, a family-run company that specialises in adapting homes for the elderly and less abled. 


How Seniors Can Feel More Secure At Home

It is frightening just how many older people’s homes are subjected to burglaries and break-ins. Worse still, seniors themselves are targeted by malicious criminals with no respect for human life.

Thankfully, there are measures such as alarm systems, CCTV and doorbell cameras which can improve the security of a person’s home. These could be well worth investigating for elderly relatives.

All too often, we hear about elderly citizens having their houses burgled or, even worse, being attacked in their own homes. It takes an especially cowardly individual to deliberately intrude upon an elderly person’s homestead and threaten to inflict violence on them, but sadly these types of incidents occur with regularity.

Therefore, we should advise elderly relatives living in their own houses to take no chances when it comes to home security. No matter how much a security system or other measures might cost to install, the value to be derived from the peace of mind that it’s there is 100% worthwhile.

If an elderly parent living by themselves knows that their home is as secure as it can be, they will feel far more comfortable and we will be at ease knowing that they feel safe.

Home security has been made easier with the advent of automated systems which enable homeowners to set alarms remotely, switch on lights at timed intervals and monitor the house while away.

A burglar will usually be able to tell when a house is unoccupied, so even if they feel that the opportunity is right to strike, home automation can catch them in the act and allow for corrective action to be taken straight away.

We should also check in on elderly parents or neighbours regularly and advise them on small things that they can do to improve the security of their home. Simple measures like giving a house key to a trusted friend or family member instead of leaving it under a welcome mat, or keeping any valuable items obscured from the viewpoint of anyone looking into the home, will help to make them feel more secure.

The infographic below from Home Healthcare Adaptations offers some sensible pointers on how you can make elderly parents feel more comfortable and secure in their homes.

Follow Home Healthcare Adaptations on Twitter

The Winter Edit: Part 2

5 Tips to Stay Well through Winter

The dark nights are drawing in and the weather is turning increasingly colder. The harshness of winter fills many disabled people, myself included, with dread.

How can we best prepare ourselves for winter?

We are 80% more likely to catch a cold during winter.

Bearing that in mind, here are my top tips to stay well and defend yourself against those nasty winter viruses.

Click here for Part 1 ~ Top Tips to Keep Warm through Winter!


1. Stock up on supplies:
Medication –


• It’s always advisable to keep a stock of essential supplies in your home. Several factors, including adverse weather, can prevent you from getting hold of medicines at short notice.
• All my medications are on repeat prescription so that I don’t have the bother of getting hold of a GP every time I need something.
• As someone with Ullrich congenital muscular dystrophy, a common cold for me can develop scarily quickly, and so I ensure there’s always a reserve of antibiotics at home, should I need them.
• It’s important to go and get your Flu jab annually and, where relevant, the pneumonia vaccination. Don’t leave it too late to protect yourself from influenza – it takes two weeks from the time you’re injected for your body to build up an immunity.

Contacts –

• It’s good practice to have a list of contacts, in case of an emergency. Include medical professionals (e.g. doctors, consultants, physiotherapists and hospital ward/department direct lines) so that you or your next of kin can contact, should you become ill. Keep your list somewhere easy to find, such as on the fridge, and make copies!

2. Nutrition:

• I choose to take supplements including a daily multivitamin and probiotics, in order to boost my immunity. Supplements come in various forms: tablet, capsule, liquid and powder. If you struggle to swallow pills, there’s always another option out there for you.
• I’m not a fan of water, so I drink a lot of herbal teas, such as lemon and ginger, to keep me hydrated and flush out toxins. Both ingredients are naturally antibacterial while ginger also helps ease migraines, inflammation and nausea (the latter being a common side effect of antibiotics). Add some honey for sweetness and to soothe a sore throat.

• I find smoothies and soups are an easy way to get your recommended allowance of vitamins and minerals. It’s really important to eat healthily to aid your bodies defence against all those coughs and colds circulating throughout the winter months. Remember: you are what you eat!

Top Foods: lemon, ginger, garlic, onion, kale, cinnamon, turmeric, honey, apple cider vinegar, grapes, natural yoghurt and chicken soup.

3. Cleanliness:

• I keep a little bottle of antibacterial hand gel in my bag (you can buy them really cheaply from most shops nowadays). I use it when out and about or using public transport. It’s a simple way to prevent the spread of germs from surfaces and person to person.
• It’s stating the obvious but wash hands with soapy water and maintain clean surfaces within the home. It’s often difficult to prevent all members of a household becoming ill when one gets sick. But simple precautions such as this could make all the difference.
• Grab yourself a few packets of antibacterial wipes and remember to clean phones, remote controls, computer keyboards and door handles regularly. You’d be amazed how much bacteria harbours there.
• Be considerate and try to cough and sneeze into a tissue rather than the air. It’s a good idea to keep plenty of tissues in stock. Please don’t do what my Dad does and carry a snotty cotton handkerchief around with you all day – bleurgh!
• Replace your toothbrush after you have fully recovered from an illness.

4. Physiotherapy:

• It’s beneficial to stay as active as physically possible, particularly throughout winter as immobility makes us more vulnerable to infection.
I am completely non-ambulant and so this is a major issue for me. Immobility results in muscle decline and poor circulation, which in itself leads to further complications.
• Although I cannot exercise in a conventional fashion, I basically wriggle and move about as much as I can. For example, I flex my feet & wiggle my toes, lean back and forth and side to side in my chair. Don’t be afraid to put some music on, loosen up and just MOVE however you can, for as long as you can.
• If you are able, go swimming as this is the best exercise for those with physical disabilities.
• Remember to pay attention to your lungs! Deep breathing exercises are an essential daily requirement for me. Following the Active Cycle of Breathing Techniques (ACBT) helps to keep me as strong as I can be.

5. Avoid Germs:

• I am particularly susceptible to respiratory viruses. If I go anywhere near someone with a cold, 9/10 I will catch it. For me, a common cold can quickly progress into a much more serious condition, I do my best to limit exposure to infected people.
• I avoid overcrowded spaces and public transport when I’m feeling run-down, whilst taking and shortly after a course of antibiotics as this is when my defences are the lowest.
• At times when coughs/colds are prevalent within the local community, I try to stay away from enclosed public places e.g. trains, buses, cinema, supermarket/stores, pubs, clubs etc.
• If you must go out, remain in the fresh, open air (but wrap up warm).
Wear a scarf when out and about. When necessary, I can use it almost like a mask, pulling it up over my face. This prevents me from inhaling and contracting airborne viruses.
• Why not add a few drops of Olbas Oil (eucalyptus) to your scarf. That way, when you do need to pull it up over your nose and mouth, you can breathe in the fresh scent and it won’t feel stuffy.


I really hope this was helpful! Please SHARE this blog post so that others may benefit.

I’d love to hear from you – what do you do to stay well throughout winter?

The Kindness of Strangers | Wheelchair Life ♿

I was out shopping yesterday in my Quantum 600 powered wheelchair. While the many other shoppers bustled past without a second thought, one considerate old lady stopped to ask if I needed her help to reach anything.

As fellow wheelchair-users will know, shopping can be frustrating for various reasons. Not only are we grappling with the general public (the pushing, shoving and impatience), and trying to navigate narrow aisles without running over any toes; we are also bum height! 😣

Not only that – reaching anything above or below torso level is a challenge, particularly with elbow contractures and poor grip (as in my case).

With that in mind, those few kind words from one generous old lady truly made my day. It really is the little things in life – the small gestures – that make a big difference. If only everyone was so thoughtful!

I am aware that some disabled individuals may take offence at such an offer, presumably seeing it as a sign of pity – the implication being we (disabled people) cannot manage by ourselves. However, I personally cannot construe it as anything other than sincere concern and consideration for a fellow human being.

We all need help and support every once in a while, regardless of ability or circumstance. Even if you don’t require assistance from others, at least show some gratitude and have the courtesy to decline their offer politely.


#respecttotheoldies ✌💗

#MuscularDystrophy

#WheelchairLife ♿


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