Amberly Lago is another remarkable, kind and generous woman I was able to interview following the release of her memoir, ‘True Grit and Grace: Turning Tragedy into Triumph’.
Fitness fanatic, Amberly’s life was turned upside down following a debilitating motorcycle accident in 2010, leaving her with significant nerve damage and lifelong chronic pain.
She now devotes her life to helping others.
Acid attack victim, Katie Piper, is now a well-known media personality, activist, documentary maker, charity founder and mother.
She has achieved so much since her brutal assault in 2008, which left her partially blind and with full thickness burns. Katie has endured over 200 operations and invasive treatment to ensure her recovery. She really is a true inspiration!
I read Katie’s first book, ‘Beautiful’, around eight years ago. It’s a real eye opener! Yes, it is shocking and distressing, but also incredibly motivational. I highly recommend this book to anyone and everyone.
Muscular Dystrophy is an umbrella term for a group of muscle diseases.
There are nine forms (see image above), which then divide into many more sub-types.
The various forms of MD differ significantly in which areas of the body are affected, severity, rate of progression, and the age of onset.
Some are born with the condition, while others do not display symptoms until adulthood.
2. What causes it?
A faulty or mutated gene. It is therefore, a genetically inherited condition.
If one or both parents have the mutated gene that causes MD, it can be passed on to their children. However, this doesn’t necessarily mean the children will have the condition. But they may be carriers.
I have a rare form of congenital (from birth) MD, which is an autosomal recessive disorder, meaning you inherit two mutated genes, one from each parent – as shown in the image below.
I am the only known member of my family to be affected by muscular dystrophy. My unaffected parents (both carriers) had never heard of the condition, and so, it was a huge shock to receive my diagnosis at the age of 4.
3. What form do you have and how does it differ from other types of muscular dystrophy?
I have a rare form of congenital (from birth) MD, called Ullrich.
I have severe contractures in all of my joints (knees, hips, elbows, wrists), and a severe scoliosis (curved spine). As a result, my balance is very poor.
UCMD affects my respiratory function. 7 years ago it became necessary for me to use a BiPAP machine (non-invasive ventilation) nocturnally.
For me, a common cold can very quickly develop into a serious respiratory illness, such as pneumonia (which I’ve had numerous times).
I experience chronic fatigue due to the progressive muscle-wasting and my squashed torso, which prevents expanditure of my lungs.
I try to live as “normal” a life as possible, having attended university and learnt to drive (though this is no longer possible as my condition has deteriorated).
8. Pros and Cons of living with UCMD?
The cons of my condition are mostly listed in the previous answer. The most bothersome of these are the respiratory decline and chronic fatigue.
You might think being unable to walk would be the most frustrating thing. And while I do wish I could walk, jump and run, this has never really bothered me all that much. It is what it is, and you learn to adapt.
The pros I would say, include the network of people I have in my life, people I wouldn’t know if it weren’t for my condition.
I have made some amazing friends through blogging and living with muscular dystrophy. For this, I feel incredibly fortunate and thankful.
Other pros include my Motability WAV (wheelchair accessible vehicle), blue badge for free parking, and being able to skip to the front of the queue at tourist attractions!
9. Has it changed/got worse over time?
Yes, my condition is progressive and life-limiting. My symptoms have got worse over time.
The term life-limiting can, understandably, be scary for many to hear. While I don’t expect to live to be old and wrinkly, I have no plans to pop-off anytime soon!
After all, if you’re a smoker you are limiting your life expectancy!
As a child, I could walk short distances wearing custom-made leg splints.
Joint contractures and the severity of my scoliosis has increased.
My lung function is significantly worse as an adult.
10. What are some of the common misconceptions?
There are many! Here are just a few assumptions…
I have family members with the same condition (I don’t).
I can’t have children.
I can’t have sex or a loving relationship (some even assume I wouldn’t want to).
Many assume I can walk, even when I try to explain I am completely non-ambulant.
People think I take lots of pills and potions – if only there was a miracle cure! I’d take it in a heartbeat.
For more examples, check out this blog post I wrote all about societal preconceptions related to being a wheelchair-user.
I’ve read many trivial complaints on social media about the Coronaviruslockdown.
From park, pub and salon closures, postponed gigs and concerts, to cancelled botox, filler and wax appointments. Some are even moaning because they can’t race around and show off in their flashy cars. What a shame!
I appreciate we all have our own interests, outlets, coping mechanisms and methods of self-care. We all want to look and feel our best, and we all need somewhere to escape to.
But please, let’s try and keep things in perspective.
The current situation isn’t permanent. Of course, it’s tedious, stressful and frustrating, and will impact some considerably more than others. But it will pass and “normal” life will resume.
People on the frontline are literally risking their lives to help others – complete strangers. They are physically and mentally exhausted, yet keep going.
Carers continue to support the most vulnerable in society, despite the risk.
Key workers carry on working to ensure society functions and people are provided for.
On the upside, lockdown provides an opportunity for families to unite, spend quality time together and talk more.
But for others – men, women and children – being stuck in close proximity, unable to escape, can be a living hell.
The National Domestic Abuse helpline has seen a 25% increase in calls and online requests for help since lockdown began!
We all have problems and we are all entitled to feel and express what we need to in order to get through these trying times. Your experiences and frustrations are valid.
But please, keep in mind the medics, carers, key workers, the elderly, disabled, those living with domestic abusers and those separated from their loved ones.
Try to appreciate what you do have – for example, your health, home, and hope for the future.
When you’re feeling low, maybe write a list of all the positive things in your life and focus on that rather than the things you are currently missing out on.
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.
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.
Show your thanks and appreciation for the NHS and those working in health and social care.
Be mindful of the most vulnerable in society, and help out if you’re able to.
Please don’t panic buy or stock pile. This isn’t the apocalypse, people!
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 steelfine/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.
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.