Tag: Advice

Muscular Dystrophy | A Guide for Parents

About Me

– Disability blogger from the UK
– I have a rare, progressive condition: Ullrich congenital muscular dystrophy
– Born in 1988, with ‘floppiness’ and dislocated hips
– Slow rate of progression: I didn’t start to walk until 19 months of age. Prior to that, I ‘bum-shuffled’
– Able to walk very short distances, wearing custom-made leg splints, until age 10
– Fell over a lot as a child
– Never able to walk up or down steps or stairs
– I am now completely non-ambulant and use a powered wheelchair
– Contractures in all joints (knees, hips, elbows, wrists)
– Severe ‘S’ shaped scoliosis (curvature of the spine), which has not been surgically corrected
– Education: I attended mainstream school, then continued onto college (A-Levels) and later university, completing a degree in Art & English Literature

Diagnosis

Learning your child has a neuromuscular condition can, of course, be distressing and concerning.

In some cases, there may be a family history of the condition, whereas for others, like me, it could appear completely ‘out of the blue’.

I am the only member of my family with any form of muscle-wasting condition.

So, when I was diagnosed with congenital muscular dystrophy, aged 4, following a muscle biopsy, my parents were venturing into the unknown.

It was 1992. There was no Internet, no Google, and no one to relate to.

For us, muscular dystrophy was new and unheard of.

How and When to Tell Your Child

It may be beneficial to talk to other parents of children with a similar condition. If this is something you think might be helpful, ask your care advisor or neuromuscular consultant.

There is no right or wrong answer! Only you can decide what is best for your child.

It is important to consider siblings, as they should be included in any discussions you have as a family. However, I would strongly advise against telling siblings more about the condition than the affected child. Any information you choose to share with your children should (in my opinion) be fair and equal, regardless of age gaps.

When deciding if, when and how to tell your child of their diagnosis, consider:

– Their age
– Their own awareness of their disability        – Emotional maturity
– Your ability to fully answer any questions they might have

From my personal perspective, I recommend an open and honest policy from the very beginning.

I received a diagnosis of congenital muscular dystrophy at age 4. This was specified as Ullrich CMD many years later.

I was always aware of my disability and limitations. I recognised that I was different from my peers – unable to walk, run and climb steps. I also looked different – I was very thin as a child, had joint contractures and scoliosis, causing asymmetry of the torso.

My parents told my siblings and I of the term muscular dystrophy, meaning that my muscles are much weaker than those of other children. At that stage, this was all the information I needed.

For many years, when other children would ask the inevitable question, “what’s wrong with you?”
I would simply answer, “I’ve got muscular dystrophy, so I can’t walk like you”.

Ullrich Congenital Muscular Dystrophy

Infancy

– Do your research: These days, there are many reliable resources of information. Ask medical professionals including consultants, physiotherapists and occupational therapists. I also recommend reaching out to those directly affected, such as other parents and adults with muscle-wasting conditions. Try social media and search for groups to join.
– Always trust your instincts! Aware of my delayed progression as a baby, my mother sought medical help and was told she was an “over-reactive mother”. Thankfully, she persisted and met with a neuromuscular specialist, who almost immediately identified my condition.

Starting School

– Starting school can be daunting for any child. But for a child with muscular dystrophy, this transition can be even more challenging.
– There is no reason why a child with a muscle-wasting condition shouldn’t attend mainstream school. However, you must consider your child as an individual and decide whether or not you feel this would be best for them. Indeed, your child may have a preference. Some may elect to attend a school for special educational needs.
– I suggest making several visits to shortlisted nurseries or schools. Check all areas for accessibility. Meet with staff and the SEN team.
– It is essential to ensure staff are fully aware of your child’s needs and abilities. Meet with the special educational needs co-ordinator (SENCo) well in advance. If possible, meet and introduce your child to teachers and support assistants. This will help them feel more at ease when their first day of school arrives.
– Ask your child’s physiotherapist and/or occupational therapist to visit the school and meet with staff to share their knowledge and expertise.
– Be positive, be optimistic, be encouraging. BUT don’t make promises you can’t keep: As your child grows and interacts with other children, they will become increasingly aware of their differences. They may ask why they can’t stand, walk or run like their friends. Furthermore, if your child has a progressive form of muscular dystrophy, they may wonder if their symptoms will get worse as they get older.

I was able to walk short distances until the age of 10. We were never given any information or guidance. We weren’t advised if or when my ability to walk would come to an end. I would therefore often ask my parents, “will I always be able to walk or will I have to use a wheelchair?”

I appreciate why many parents may be reluctant to overshare and reveal what the future may hold, for fear of scaring their child. However, I feel it is important to be open and honest. If you’re unable to answer their queries, say so.

Knowledge and preparation is power!

Teen Years

– For most children with muscular dystrophy, the biggest changes occur during puberty.
– Growth puts extra strain on weakening muscles.
– If able to weight-bear, your child could lose this ability resulting in the need for a wheelchair.
– It is likely your child will accept and embrace mobility aids and equipment more than you. Children are very adaptable. For me personally, using a wheelchair was a great relief. A wheelchair offers mobility and freedom.
– Growth also leads to contractures. Regular physiotherapy helps to maintain flexibility and movement.
– If untreated, spinal curvature (scoliosis) will progress, resulting in asymmetry of the torso, a tilted pelvis, pressure sores and discomfort.
– Scoliosis, along with muscle deterioration, impacts on respiratory function. If your child feels overly tired, naps during the day, or experiences regular headaches, particularly on first waking, you must see a specialist respiratory consultant. It might be necessary to introduce nocturnal noninvasive ventilation.
– Noninvasive ventilation (NIV) comes in the form of either a CPAP or BiPAP machine (usually the latter).
– Bilevel positive airway pressure (BiPAP): a face mask is worn, and air is delivered from a machine through a tube to support breathing.
– Other respiratory equipment your teenager may benefit from, especially when ill: Nebuliser and cough assist machine (seek advice and information from your respiratory consultant and respiratory physiotherapist).

BiPAP Machine
NIV Face Mask

 

Other Family Members

Some forms of muscular dystrophy are inherited. This can obviously be a concern if relatives are planning families of their own.

A few years ago, my brother and his wife decided they wanted to have children. Because of my condition, they sought genetic counselling, taking with them a copy of my medical record.

It was determined that my brother is highly likely to be a carrier, while his wife is highly unlikely. Once pregnant, they were offered a test which involved inserting a needle into the developing embryo to ascertain if the baby would be born with muscular dystrophy. They decided against this due to the invasive nature of the procedure.

They now have two children. Neither have muscular dystrophy.

Accepting and Adapting

As a parent, it is natural for you to focus all your energy into your children. Raising a child with muscular dystrophy brings with it many more challenges. This can impact on your health and relationships. It is therefore crucial to take good care of yourself too.

Remember, it is okay to cry, scream and shout! I’m sorry to say, battles are never ending and you will need to fight for your child throughout their life.

It’s good to talk: whether you choose to confide in relatives, friends, fellow parents of disabled children, or healthcare professionals – don’t bottle up your feelings, concerns and frustrations. This will negatively affect the wellbeing of you and your family.

Make time for yourself:

“what time?!”, I hear you say.

I fully appreciate that caring for a disabled child is a full-time job. But you must seek some form of relief. Even if it is just meeting with friends once a week for coffee. You need space. Your child needs space too.

*Disclaimer* The purpose of this post is to offer support and advice from my personal perspective, having lived with Ullrich congenital muscular dystrophy for over 3 decades.

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Interview | Amin Lakhani: The Dating Coach on Wheels

Are you lacking in confidence and social skills? Do you suffer from low self-esteem, struggle to form meaningful relationships or find dating too nerve-wracking a prospect?

Well, if you haven’t already heard of him, allow me to introduce Amin Lakhani, the ‘Dating Coach On Wheels’. With hints, tips, and tailor-made “no bullshit” advice, he could be just the answer you’ve been searching for.

Amin, from Bellevue, Washington, has a progressive form of Muscular Dystrophy called Charcot Marie Tooth Syndrome, which presents in overall weakness, particularly the hands and legs. Now 29 years old, he has been a wheelchair user since the age of 15.

He excelled academically, achieving two Ivy League University degrees within four years, progressing onto a successful career at Microsoft. Nevertheless, the Self-confessed “nerd with poor social skills” felt lonely and insecure, with only a few friends and no dating experience.

Finally, at the age of 23, Amin hired a dating coach whom he worked with for around four years. This enabled him to totally transform himself, his relationships and his life.

He’s popular, makes friends easily, has been on over 40 first dates, enjoyed sex and fallen in love. Now the Dating Coach on Wheels, image consultant and motivational speaker is returning the favour.

1. You became a wheelchair-user at the tough age of fifteen. How did this affect your sense of self and your personal relationships?

I didn’t mind so much at first because I have a huge family and a lot of support. In fact, it was pretty cool because I had this brand new wheelchair and I no longer felt exhausted all the time. Up until that point I could walk a little but I always used elevators and I sort of grabbed hold of the walls and furniture so that I didn’t fall.

But as soon as I started High School I felt different from my peers. I didn’t know anyone else who used a wheelchair, so the fact that I stood-out from the crowd made me really self-conscious. I was lonely, alienated and my relationships became strained because I wanted the impossible: I wanted to get rid of my wheelchair and be the same as everyone else. But of course, that could never happen.

I did have a few school friends but I never had a girlfriend, and was left out of all the usual teen dating etiquette. No girl ever wrote on my locker.

I felt unattractive and thought I had nothing to offer a girl, so I shut myself down. If ever a member of my family asked why I wasn’t dating, I would use the excuse that I was too busy for all that.

2. Where did you get the idea to seek assistance from a dating coach, and why did you choose that route?

I had tried online dating – the likes of ‘OK Cupid’ and ‘Plenty of Fish’. I was really thorough with my research and looked up what I should and shouldn’t be doing. I was enthusiastic and did everything right according to my research. I was, on paper, a catch. Or so I thought. I was a grade-A student, a high-achiever academically, I had a great job at Microsoft. But it just wasn’t working out for me and that made me feel hopeless. I think my downfall was the fact that I tried to hide my disability from my online dating profiles. I never showed pictures of my wheelchair and never mentioned it. I basically listed my achievements but failed to inject any personality or humour. Had I done this I think I would have been met with a more emotional response. Any response.

I look back now and cringe, but there’s nothing wrong with that. Ultimately it led me to search online forums which is where I found the guy who would become my dating coach. I was 23 at the time and he was doing a workshop called, “Conversation Secrets”. It was then that I decided to get his advice.

Amin Lakhani before his makeover

2. You say a turning point for you was being told, by your dating coach, that you will never blend in but that’s okay; rather you should make yourself stand-out from the crowd. Why did this realisation have such an impact on you, and why do you feel disabled people should aim to stand-out rather than fit in?

Yeah, that really did make an impression on me. I learnt that if you don’t like something you should change it. And, if you can’t change it, you should change your opinion of it. It’s true, disabled people are memorable because of their disability. It does make us stand out. But that isn’t a negative thing.

I do think disabled people should embrace their individuality and dress to grab positive attention. People are going to look at you anyway. By nature, humans are curious and we all check each other out – disabled or not. So, make people look at you and remember you for the right reasons. Make them remember your outfit or your style. If you put the effort into your self-image, you look good and feel good about yourself, people wont pity or feel sorry for you because they wont be focused on your disability.

I also learnt, from my dating coach, that being in a wheelchair gives me free rein to talk to any girl in the world. No one is going to slap, punch or snub a guy in a wheelchair, right? So effectively, I could approach any girl I like and just start talking because even if she’s with a guy, he’s unlikely to feel threatened by me. It’s all good practice!

4. You clearly pay a great deal of attention to your appearance – the signature bow tie, a pop of colour and an overall minimalist, classy aesthetic. How did you develop your personal sense of style and why do you feel this is so important?

I believe you attract what you project. So, if you want to attract a punky type of person, it’s probably a good idea to shape your image around that look. I now look completely different from how I used to. I changed how I dress and style myself according to the type of girls I’m attracted to. We all need to embrace our individuality, consider what we wear and how we wear it. If we don’t feel good about our own appearance, it affects our confidence.

Amin Lakhani now!

5. Much emphasis is placed on sex, and for some disabled people this can be a cause for concern. How then would you coach someone whose disability prevents them from participating in the physical act of sex?

Okay, first of all, sex isn’t everything, it’s just a small part of what a relationship is. It’s more important to talk, flirt, connect and feel comfortable in each others company.

With regards to sex itself, I have clients explain their difficulties, circumstances and challenges to me. It’s all about individuality. Every disability is different therefore it’s important to consider everyone’s specific situation.

I have two main points:

Firstly, I ask what the client wants. Do they want someone to support them to participate in sex? Or do they want their partner to support them in the act? Either way, it’s essential to do your research and maybe find out from others with the same physical limitations how they approach sex.

Secondly, you’ve got to make it sound fun and exciting for your partner. Tell them what you want in a flirtatious way and make it sound hot and kinky rather than practical. Remember, you’re giving a gift to this person – to your partner. It’s a hugely intimate thing you’re asking and you’re entrusting your body to them.

6. You have talked candidly about sex and your own personal experiences. Why do you feel it is important to share this in order to help others?

Yeah I think it’s helpful for me to talk about my own experiences with my clients. It enables us to relate to each other. I’ve been through the same struggles myself and so I can identify in a way that an able-bodied dating coach couldn’t.

I offer advice that is sometimes unconventional. For example, I tell people it’s okay to feel like shit when you get rejected or things don’t go to plan. But you’ve then got to keep going, get out there and try again. All experience is beneficial.

7. It’s fair to say your target demographic is men. Why is this? Do you think men struggle more than women with confidence and making themselves attractive to others?

Obviously as a guy myself, I can relate more to men, although I have had more female clients recently. I have a wealth of dating and relationship experience that allows me to relate and identify with male clients especially.

There is definitely a gap for guys. They just don’t know how to get in the drivers seat. Women want them to take control but in order to get their guy to that place, they themselves have to take control. So a lot of the time I’m trying to help guys take charge.

8. Can you please explain your working methods?

As a dating coach I help people build their skills to make themselves more attractive to others. It’s not just about sex and dating, but also forming meaningful relationships and friendships, too.

For the most part I communicate with clients through video calls and we also Email in between. The length of time I spend with a client depends very much on what they want me to help with, and how hard they are willing to work to achieve their goal. I spent up to a year working with one particular guy who is actually able-bodied. He was incredibly reserved in social settings due to a lack of self confidence, and was looking for more than just a few pointers.

9. What is the one question you are asked most frequently, and what advice do you give in response?

Men want to know how to ask a girl out and how they can tell if she likes him. I tell them there’s no way to really know for sure if a girl likes you back. You’ve just got to rip off the band aid and go for it.

Women mostly ask how to find a guy who’s interested in more than just sex. My response is to learn to say no! Take your time and make a guy work for it. Don’t give it up on the first date as it leaves a bad impression. Inevitably the guy would assume you give it up to all guys just as easily, and that’s not what men want ultimately. We love the chase and value what we’ve worked hard for.

10. What are your top dating tips for those who are particularly nervous or lacking in confidence?

It’s okay and totally natural to be nervous. I still get nervous going on a date for the first time. It takes courage and courage leads to nervousness; everyone feels it. You’ve just got to do it. No matter what, you have to try. We all have to go through awkward stages and you will probably look back and cringe at yourself and your failed dates – I know I have. But again, that’s okay.

I also recommend bringing up your disability early on, but in a humorous way. Don’t try to hide it, but at the same time, don’t disclose everything in great detail. You don’t need to be 100% emotionally okay with your own disability. We’re all a little insecure about something. Just put your best foot/wheel forward so you can find the people who prioritise things other than their partners physical abilities. These people are a rare breed, so it will take work (and inevitable heartbreak) to find them.

In terms of date conversation: Pauses, I think, are actually a good, powerful thing. They can be sexual and flirtatious, allowing you to lock eyes and check each other out. I am consciously quiet for extended periods when I go on a date. During these pauses I look my date up and down and make it known that I’m checking her out. This lets her know I like her and will probably make her giggle and flirt in return.

Remember not to talk too much and don’t attempt to fill the silences. It can be exhausting as it’s impossible to process all that verbal information quickly.

Do ask questions, but not just typical introductory questions. Become interested in your date and respond to their answers. If they answer a question very briefly, realise that perhaps they don’t want to talk about that particular topic. Dig deeper into what they do want to talk about and tap into their interests.

11. Do you think there’s a limit to who you’re able to coach, and have you found any of your clients to be especially challenging?

Oh yeah absolutely. It’s all about motivation. If a client isn’t motivated or willing to do what it takes and work hard for it, they won’t get results. At the end of the day, they need to trust me and do what I tell them, no questions asked. I can’t do the hard work for them.

12. Where do you see your career taking you and what more do you hope to achieve?

I’m kind of happy where I am right now. I really just want to help more people.

I enjoy writing but mostly I love making videos, talking and being myself on camera. So, ideally I’d like to be more active on Youtube. There’s something about being recorded that’s more effective than someone reading something I have written. In a video, you’re hearing my voice, seeing my mannerisms and humour. You’re receiving the information exactly how I want you to. You just don’t get that through writing.

I feel like I was born to do the work I do. All of my personal struggles have been for a reason. I now have a sense of purpose and can make an impact in a way that I couldn’t if I were able-bodied. In that way, my disability is beneficial.

I’d like to thank Amin for taking the time to talk with me.

Please do connect with the Dating Coach on Wheels on social media:

Website

Youtube

Instagram

Twitter

Facebook

*This article can also be found on the Disability Horizons website.

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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?

Scoliosis | Why I Chose NOT To Have A Spinal Fusion

In my latest piece for Muscular Dystrophy Trailblazers, I explain how and why I chose NOT to have a spinal fusion.

My Experience

Aged four, I received a general diagnosis of congenital muscular dystrophy. Many years later, this was specified as Ullrich congenital muscular dystrophy.

Aged nine, I was offered corrective scoliosis surgery.

At the time, I had no idea why I was going to see this new doctor. To me, it was just another appointment.

There was no faffing around; this guy was straight to the point!

He firmly asserted that I needed an operation to prevent further decline of my spinal curvature.

I was horrified to hear of the graphic details, lengthy recovery period, and how it could even prove fatal.

Bear in mind, we’re going back more than 20 years – the whole procedure was very different to what it is today.

Of course, as an adult I now appreciate that with any surgical procedure, doctors are obliged to inform the patient of every potential risk and outcome, including death. But this was pretty shocking and unexpected news to take in at a young age.

How I Made My Decision

As a child, I attended annual outpatient appointments at Birmingham Heartlands Hospital, where I saw a paediatric neuromuscular Consultant.

My parents and I were never given a prognosis, nor any indication regarding if or how my condition might progress. Life expectancy was never discussed and no doctor could tell if I would, in time, come to rely on a wheelchair. We were very much in the dark, living day-to-day.

Frankly, these appointments frustrated and bored me to tears! We would wait hours to see the doctor, and leave knowing nothing more than we did before.

I have, in all honesty, learnt infinitely more as an adult through my own research and from others living with muscular dystrophy.

My point here is that my parents and I had nothing on which to base our decision. Or rather, my decision.

It is now more than 20 years since I was told I needed a spinal fusion. This was pre-Google and pre-social media.

We weren’t put in contact with anyone who had experienced the operation. So, other than a brief verbal overview from the Consultant, we had no other information or point of reference.

After leaving the appointment in a state of shock, my parents told me that ultimately the choice was mine. I decided I didn’t want to put myself through such an ordeal. I was, at that age, considerably more able than I am now, and none of us had any reason to think I would deteriorate as severely as I have.

Do I Regret My Decision?

At the time, it was, or at least seemed the right decision. I was able to weight-bear, finding clothes wasn’t an issue, I was pain-free, and did not require any inhalers, medication or respiratory support.

The procedure back then was much more invasive, and the recovery extremely lengthy compared to what it is today.

My condition was stable, I was happy and relatively able. Under those circumstances, the disadvantages outweighed the potential advantages.

However, I do often wonder how different my life, body and health might be had I said yes to a spinal fusion.

No one predicted that just a year after the offer was made, aged 10, I would become completely non-ambulant within a very short space of time. Had I any indication that this might occur, my decision may have been different.

Though my scoliosis was considerable, the ‘S’ shaped curve is now much greater. Consequently, my respiratory function is significantly affected and basic comfort is a distant memory.

On bad days, when I’m in pain and struggling for breath, or when I’m ill for months (yes, months) with respiratory infections; I do regret forgoing my one opportunity to correct my skeletal deformity.

But, what’s done is done, and cannot be undone. I’m stuck with me! I can’t change past decisions. I simply have to make the best of what I have and keep moving forward.

I’d love to hear about your experiences with scoliosis and spinal surgery.

– Have you turned down corrective surgery?

– Have you had a spinal fusion? If so, how has your life changed as a result? Is it better or worse?

Interview | Author Janine Shepherd

Here is my latest interview, with Janine Shepherd, for Disability Horizons.

Janine Shepherd: A Broken Body is not a Broken Person

Former elite athlete and celebrated author, Janine Shepherd shares her inspirational story in the best-selling memoir, Defiant: A Broken Body is not a Broken Person.

It chronicles her journey following a tragic accident that cut short her bid to compete in the 1988 Calgary Winter Olympics.

Partially paralysed and suffering life-changing injuries, Janine made the courageous decision to let go of her former life and face adversity head-on, creating a new dream for herself.

Here I speak to Janine about her journey, the challenges she has faced and how she’s reinvented herself and her outlook.

Hit by a truck in 1986 during a bicycle ride in Australia’s Blue Mountains, Janine was not expected to survive. Told by doctors that she would never walk again, nor have children, she spent the next few years rehabilitating her permanent disabilities and defying all the odds.

A mother of three, best-selling author, public speaker, aerobatics pilot and the first female director of the Civil Aviation Safety Authority, Janine speaks candidly and with humility about how and why she reinvented herself and changed her self-perspective.

Janine, please tell us about your disability and how it continues to affect you.

The accident gave me severe spinal cord injury – I broke my neck and back in six places. After extensive surgery and rehabilitation, there was just about enough nerve connectivity to be able to learn to walk again, albeit with a significant limp.

Now, in addition to significantly wasted lower leg muscles, I have limited feeling from the waist down and chronic bladder and bowel dysfunction. I also have to self-catheter a lot, which results in regular urinary tract infections. Your readers might agree that these issues are possibly the worst part of living with spinal cord injury.

‘Janine the machine’ is how you referred to your old self – the elite cross-country ski racer. Do you feel this remains a true representation of your character? If not, how would you now define yourself?

Even though I felt that my body was ‘broken’ after my accident, I realised that my spiritual essence and mental toughness remained unchanged. I soon learned that being ‘Janine the machine’ had less to do with athletic prowess than unshakeable determination and persistence. Recognising that gave me the strength to reinvent my life in a most remarkable way.

Following the accident and being unable to walk, you focused on learning to fly. In your book, you state: “I had to find something to replace what I had lost in my accident”. Why was it so important to set yourself such an ambitious goal?

We often define ourselves by things outside of us – our jobs, our relationships, the roles we play in life. When we lose those things, who we are and everything we believed in is challenged. When we experience such immense loss in life, whatever form it may take, it is very easy to slip into despair, which is what happened when I got home from the hospital. Flying filled me with so much joy and gave me the inspiration and hope that I really could rebuild my life in an unlikely and extraordinary way.

The feeling of despair was almost inevitable. You state that you suffered depression on returning home after a six-month stay in hospital. How did overcome this?

I overcame the despair by throwing myself into flying as well as my physical therapy. At first, this was more discipline than it was a spiritual or emotional triumph. I simply interrupted the pattern of depression by charting progress on all fronts, no matter how incremental it may have been from one day to the next. This helped to refocus my life and channel my depression elsewhere. Hope and application proved to be powerful antidotes to depression.

You discuss your choice to keep fighting versus letting go and accepting not only your body but also the circumstances. This led you to stop asking “why me?” but rather, “why not me?” Why was it so essential to change your perspective?

Before my accident, I had led a very narrow life in that all of my friends were athletes of some sort. In hospital, I met so many other people, whom I would normally not have met. This opened my eyes to the fact that I wasn’t alone on this journey.

Even though we came from very different walks of life, we experienced similar struggles with acceptance and recalibrating how to live life post-recovery. Equally important, we had in common the typical hopes and dreams of anyone for a ‘normal’ life once we left the spinal ward.

You have faced great adversity on a number of occasions. Having rebuilt your life following your accident, you then later experienced the upheaval of divorce and financial ruin. What gave you the strength to once again thrive and persevere despite these challenges?

I developed a philosophy very early on in my days as an athlete called ‘loving the hills.’ One of my racing advantages was that I took on the climbs my competitors dreaded with a passion. That not only made me physically stronger but mentally tougher as well.

This proved to be more than just a training philosophy; it became my choice as a way seeing and living life. Ski races and life experiences are both full of hills; loving them not only gave me a competitive edge but also developed my resilience. So when faced with a life challenge that, metaphorically, looks insurmountable, I take that on as just another ‘hill’. Loving it, not fighting it, teaches me the lessons I need in order to grow into a wiser and more compassionate person.

One of the themes of your book is the concept of disability. You emphasise the importance of believing in the power of potential and adopting a defiant mindset, so that one may not be defined by their physical limitations. Can you share your outlook on disability?

I went from being a gifted, multi-sport athlete to having to relearn how to walk. So, it took me years to finally and fully accept that I am a woman with a disability. At first I felt embarrassed by many aspects of my spinal cord injury, bladder and bowel dysfunction.

However, as I look back and see how much I have achieved, despite my challenges, and how much I have overcome, I feel like the aspect of loss in my life is no longer something to try to hide. Instead, I’m proud of being able to acknowledge my disability and put my energy into making the best use of my gifts.

Despite your many life-altering setbacks, you write with great humour, humility and encouragement. How have you managed to maintain such a positive and empathetic attitude? And do you feel that humour is important in maintaining a healthy outlook?

I absolutely feel that being able to laugh at life is an essential part of the healing process. I tell others not to take life too seriously or you’ll cloud the experience. There are so many documented mental and physical health benefits of laughter. Humour helps me to deal with chronic pain, something that remains a part of my life on a day-to-day basis.

You state that the loss of your athletic career and your physical limitations ultimately allowed you the freedom to embrace life’s potential and infinite possibilities. This is a remarkably refreshing and open-minded viewpoint. How have you ensured that you are defined by your accomplishments rather than your broken body?

I believe that life is about loosening our grip on the things that we feel entitled to. Many of the ancient teachings state that this only leads to suffering. When we let go of the life that we feel we should have, we gain the freedom to see the world through new eyes, and create a more ideal life we can only then envision. This is the gift that comes from realising that life is not about having it all, but loving it all, even the painful parts.

Finally, what do you hope readers will take away from your memoir?

I believe that each of us serves both as companion and as mirror to those we meet along the way. When we accept that we are not alone on our journey, and just how precious and short it is, we become open to seeing the world from a perspective of love and hope.

We then understand that, despite the inevitable life challenges, we always have the choice to reinvent our lives and embrace the new with a sense of wonder and joy. My sincere wish is that my story helps each reader better connect with his or her defiant human spirit. And, that doing so serves to foster the pursuit of the uniquely rich, extraordinary life that awaits every one of us.

I would like to thank the wonderful Janine Shepherd for speaking with me.

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The Winter Edit: Part 1

5 Tips to Keep Warm this Winter

Winter is well and truly here and so too is the frosty weather. British winters can be long, dark and unforgiving.

To help you make the most of the season ahead, I bring you Part 1 of my Winter Edit – advice, tips and tricks to ward off the chill.

1. Chilblains:

Because I am unable to weight-bear, I suffer from poor circulation, making my feet permanently cold. I have what can only be described as corpse feet – purple and puffy!

I have tried all sorts of remedies over the years to treat recurrent chilblains, but I’ve found the best to be Gehwol Fusskraft Red cream (available on Amazon).

I slather it on generously before putting on a pair of thick woolly socks, and find my feet are subtly but noticeably warmed and chilblains are kept at bay.

  • A good alternative to the Gehwol Fusskraft Red cream is the Pink Peppermint foot lotion by Lush, which works similarly to stimulate circulation. If going out on a cold day I’ll sometimes rub this into my hands to fend off frosty fingers.
  • In terms of footwear, you can’t beat (in my humble opinion) a pair of shearling lined boots *ahem, Ugg dupes*. They may not be the height of sophistication, but they do the job and they’re ridiculously comfortable. I can imagine all the guys out there are thinking this is one for the ladies, but there is a good selection of shearling lined winter boots out there for men too.

2. Layering:

We all know it’s best to layer clothing when cold. However, this is not so easy to do when you’re a wheelchair-user.

Getting dressed is a daily struggle for me, so having to battle with more than one top fills me with dread.

So, my advice put simply; if you can layer, do. If like me you can’t, keep reading…

I live in leggings as they’re stretchy and comfortable. You can buy leggings everywhere and anywhere these days but I favour Marks and Spencer heatgen thermals.

There are socks, tights, vests, long sleeved tops and of course the leggings I love. Again if you’re able to, I recommend wearing these items under your usual attire for added insulation. But they’re ideal to wear alone too. M&S also feature a men’s thermal underwear range.

A great alternative to M&S is the Uniqlo Heattech range for men, women and children. This extensive selection is it is competitively priced, practical and fashionable. Definitely check this one out!

uniqlo

  • I swear by scarves. They’re so easy to throw around to protect against the winter chill. They come in so many fabrics, sizes, colours and styles. Invest in a thick woollen scarf big enough to wrap around your body like a poncho or use as a blanket over your legs. I sometimes do this if I’m home alone as I can’t manage sleeves myself.
  • Wear a woollen hat when going out in cold weather as heat escapes from our heads.
  • Gloves aren’t just for outdoors. If you suffer from cold hands, try wearing a fingerless pair when indoors which allow you the freedom to continue with your daily tasks. If it’s a particularly frosty day and I need to go out, I will layer woolly gloves over a fingerless pair. You could also purchase some USB heated gloves online.

  • Throughout the coldest months, ensure you use several bed sheets as this traps heat in far better than having one thick blanket. It’s also much easier to turn and reposition yourself with a few thinner cotton sheets over you than one heavy blanket. *I’ve mentioned it before but for those of you who struggle with turning in bed, I highly recommend investing in a satin fitted sheet.

3. Fabric:

When trying to keep warm it’s worth considering where you are and what you’re doing as this will determine which fabrics to opt for.

  • Natural fibres such as wool, cotton and silk are more insulating since they trap heat. So lightweight silky pyjamas will not only keep you snug at night, they will also help you manoeuvre more easily. Cotton is hypoallergenic, breathable and good for layering but not advisable in wet weather as it is also highly absorbent. Wool too absorbs moisture though due to its structure, water cannot enter the interior fibre. Therefore, even when soaking wet the air pockets inside the woollen fibres prevent you from losing heat. 100% wool is best as blends are less insulating.
  • The synthetic fabric polyester is good when out on a windy day. It’s durable, lightweight and can be made to any thickness. A polyester coat or jacket is a must. And why not snuggle up in bed with a polyester fleece mattress topper, available from Amazon.

4. Food:

  • Swap your morning cereal for warming porridge oats. Add a little cinnamon as it stimulates circulation thereby raising body temperature. Cinnamon spice is also full of antioxidants and anti-inflammatory properties which will protect you from winter viruses.

  • Opt for soup over sandwiches. Include iron rich foods, garlic, onions, spices and orange vegetables such as carrots, sweet potato and squash.
  • Whole grains, nuts and nut butters are great insulating snacks.
  • The dark days and cold weather can make us lethargic. Many of us lack the energy to cook after a busy day. So to prepare for the week ahead, make yourself plenty of warming hearty meals like stews, broths, casserole and chilli, then freeze. When you then come home in the evening, all you need do is reheat and enjoy. You’ll be warmed through in no time.
  • Hot drinks are a winter essential. I drink a lot of herbal teas, especially lemon and ginger as these ingredients are great for flushing out the system and warding off coughs and colds. When on a long journey take a flask of hot coffee or tea with you to stay warm and hydrated.

5. Home Heating:

It’s important to maintain a warm and consistent temperature in your home throughout the winter.

Exposing yourself to extreme and varied temperatures can leave you vulnerable to ill health and infection. Government guidelines advise heating our living rooms to 21C (70F).

Most of us now have central heating which can even be controlled from our mobile phones.

My family home is primarily heated by a wood burner which warms the whole house.

However, I cannot prepare and light the fire myself due to my disability. I therefore store a fan heater in my bedroom which is simply operated by the flick of a switch. There are many different electric heaters now on the market. Here’s a budget option and a higher end option for you.

You could also pre-heat your bed with an electric blanket or a hot water bottle so that it’s nice and toasty for you to get into at night.

Honourable Mentions:

  • Invest in a high tog duvet for frost nights.
  • For a quick fix, blast yourself with the hairdryer for instant heat
  • Heating pads and microwaveable heat pack
  • Reusable hand gel warmers (I have these)
  • Microwaveable slippers/USB foot warmer
  • Check out the complete care shop for a variety of warming aids
  • Enjoy a cosy night in front of the fire with a milky hot chocolate – my favourite is Galaxy or Aero – and a big bowl of homemade cinnamon popcorn!

I hope this was helpful! If so, please SHARE 

Winter Edit: Part 2 ~ Tips to Stay Well through Winter

Flu Jab: Get Yours Today!

Well, it’s upon us again; Flu season is here. Every year my family and I get the Influenza vaccination, which is free of charge here in the UK, courtesy of the NHS.

For as long as I can remember, I’ve had the Flu jab to protect myself through the harsh winter months. It’s important that not only I am vaccinated, but that those closest to me are too. My immune system is much weaker than average, and my condition makes it considerably more difficult to overcome respiratory infections. For me, a common cold can quickly develop into something much more serious. It’s therefore very important that I am not unnecessarily exposed to the Flu virus.

As I have aged, my declining respiratory function has become the most concerning symptom of my disability. Ullrich congenital muscular dystrophy causes muscle degeneration and scoliosis. Not only are my lungs squashed and unable to expand as they should, the muscles that make them force air in and out are slowly wasting away.

Over the years, I have fought recurrent chest infections, several bouts of pneumonia, pleurisy and an acute pneumothorax (collapsed lung), requiring a chest drain. Many long, drawn-out days have been spent in hospital trying to overcome serious complications resulting from respiratory viruses.

For this reason, I implore and encourage you all to go and get the Flu shot. It takes no time at all and I promise you, it’s completely painless. There are fables floating around that will attempt to make you believe the Flu jab can give you the Flu. This is not the case at all. Yes, the vaccine does contain a small dose of the inactive virus. This triggers antibodies, which within two weeks will protect you, if and when you’re exposed to seasonal Flu.

Like all viruses, there are various strains of Influenza which change annually. For this reason, it is essential to ensure you are vaccinated every year.

I visited my local pharmacy, without appointment, a few weeks ago to get my free vaccination. If you haven’t already, please don’t delay. Go and get yours NOW!

For more information on the Influenza vaccine visit the NHS web page here.

Related Blog Posts:

Flu | The Facts

Winter | Top Tips to Keep Warm

Winter | Top Tips to Stay Well

Cough & Cold Season | Chest Infection