Muscular Dystrophy: My Beautiful Roller Coaster ride

G’day everyone! And welcome to another blog! Also a big shout out to all the new followers! I hope you have enjoyed checking out some of my other blog posts. If you haven’t checked them out yet, go ahead and let me know what you think!.. I will wait……

ANYWAY! So for some of you, you may already know that I filmed a Podcast episode with the ever so amazing ListenABLE gents. Dylan and Angus were fantastic to talk to, and I am so glad to see you all enjoy listening to the episode. Before we really get stuck into the blog for this week, a little Easter egg for you (did you see what I did there??) the episode was filmed 6 weeks ago!! So I have been keeping this secret for 6 weeks! Anyone who knows me knows that I suck at keeping secrets! Safe to say I am so relieved it is out and i can talk all about it!

So this weeks blog is talking all about the main theme throughout the Podcast episode! Muscular Dystrophy!!!!!! Or should I say my beautiful and crazy journey with Muscular Dystrophy! I want to talk to you guys about what I noticed growing up but also the things that makes my condition unique to me… Let’s get cracking!!!

However, I do want to point out that I am not a doctor, thank goodness, so I won’t go into the super medical side of it. If you want more medical explanations on how MD occurs then please feel free to consult Dr Google, with a somewhat open mind.

 My Muscular Dystrophy Journey: The early days.

Me sitting on my bed wearing white, purple and pink leg splints. i am facing the camera shouting excitedly. And so the Muscular Dystrophy journey begins.
If only she knew the journey she was about to embark on!

So little old me was born in 1999. Yes I am going to claim that I am a 90s child even though I saw the last 5 months or so of it.

The Doctors originally tested me for Down Syndrome due to the fact that I was classed as ‘floppy’ and my head shape was a bit off. Little did everyone know that the floppy appearance is also a characteristic of Muscular Dystrophy.

My parents didn’t get to hold me after I was born, due to the floppiness and the fact I was not crying. I then spent 2 weeks in the NICU hanging out with all the other cherubs who really wanted to make their entrance into the world something to really remember.

I was also slow to reach all my milestones. I never crawled and instead commando crawled, and took my first step at 18 months. I struggled to get up stairs and get off the floor. And my penguin waddle was pretty obvious. I reckon it probably looked adorable back then!

However, my parents had not the faintest idea that things were off. Like I said in the Podcast episode, it was my grandparents who pointed out the uniqueness.

I was sent to numerous doctors, both in my home town, in Brisbane and even in Sydney. I had test after test including a Muscle Biopsy. Long story short, my parents were taken into a Doctor’s office and told about my condition. And that my friends is how the journey began!

I had my first mobility scooter at 4, and I crashed it way too many times to count! It was fun doing doughnuts on the concrete going full stick until you face plant on the concrete! I received night splints a couple of years later… I have never been able to put up with them as i can’t sleep with them on, and this gal likes her beauty sleep! Oh and let’s not forget 12 monthly trips to the hospital for check ups! I enjoyed them because i got to wag school, and eat junk food! So i wasn’t complaining!!

My Muscular Dystrophy Journey: We are all unique.

a black and white photo of four pairs of hands grasping each other.
The best thing about the Muscular Dystrophy Journey, is the realisation that none of us are the same

On a side note briefly, I just wanted to highlight something. There are many different types of MD, and the muscles they effect are completely different from strand to strand, from person to person.

For me, my condition is classed as Ullrich’s but I do display characteristics of Bethlem. Both of this strands for the most part look identical and are caused by the same protein deficiency. But don’t be confused, I am not talking a protein deficiency due to not eating enough protein sources, this is a completely different beast! (see what i did there??)

I have what is called a Collagen 6 disorder, so my muscles don’t produce enough collagen to support muscle growth.

However, I have noticed during rehab from spinal surgery that my body does respond to exercise. My body loves the challenge, as does my mind. I know I clearly like to live on the edge!!

The one thing that is obvious when you look at me is how tight my joints are. My muscles get shorter which leads to contractures. So all that essentially is, is that my arms are permanently bent slightly. So I can’t straighten my arms out as they physically can’t. My shoulder muscles are tight which means that I can’t lift my arms straight up over my head. I also high tight Achilles so I constant walk on my toes. Almost a bit like wearing heels 24/7. Believe me ladies I would stick to wearing flats if I were you!!

The other thing that I should point out, like I said in the Podcast, was that not only does MD affect your skeletal muscles they also can affect your lung capacity, which restricts your ability to cough and breathe. For me my lung capacity is under 50%, so should I catch a cold or flu or even what is going around the world, it could be a tiny bit interesting if it develops into pneumonia.

Also, some strands of Muscular Dystrophy impact different areas of the body, like your heart, your tongue, throat, fingers etc.

For some their muscles don’t rejuvenate after being used, for others they can but not to the full extent. Others require breathing machines, cough assist machines, Wheelchairs and pretty much need care at some stage. So yes unfortunately shortened life expectancy is a common theme with most of us.  We experience increasing weakness as we get older, which is in some ways normal for everyone, but we experience it a lot more quickly and sooner. So therefore we need to party hard and live that it is no one’s business! I think everyone should do that though lets be honest!

See How tricky it is to come up with a common term of Muscular Dystrophy?  No wonder people get so confused!!!

My Muscular Dystrophy Journey: Care 101.

I am facing the camera smiling. My hair is in two pigtails and i am walking with a hospital grade walking frame. This was taken after my scoliosis surgery.
My Muscular Dystrophy journey led to a week stay in hospital after having Scoliosis surgery. Took the word ‘care’ to a whole new level for me!

Now I am a firm believer in realising that everyone will need care at some stage in their life, so of course it should be talked about like the way people talk about a football game.

Speaking of personal experiences, I have never been 100% independent (unless you count my solo trip, then I most certainly was!).

When I was younger (I know fancy a 22 year old saying ‘when I was younger’!) the care was primarily my scooter, getting in and out of clothes especially swimwear, and having someone do up my shoes and hair for me. I think we can all understand the difficulty of wet swimwear, and all wish that we had a machine that helps us out of them or even a crowbar!!

As I got older, it turned into helping me off low chairs included the toilet, opening jars and bottles and still tying my hair up and doing my socks and shoes. Let’ also not forget getting up off the floor. This I stopped doing when I was 8, as it was simply getting much harder for me to do, and I had had enough of having people stand on my hands. That gets old super fast trust me!

So for example, let me run down a scenario for you that is super simple for most of us human, but in fact is a bit more involved for me. TMI warning:

You are at your family’s place, and have had way too much to drink. You need to go to the bathroom, but you risk making it obvious to everyone around you that you are about to cause a flood in their living room. You can’t get up off the couch because it is way too low to the ground to get up by yourself due to your quad muscles being weak. You gesture to your mother and say to her that you need to go to the bathroom. She quietly get us from her place and picks you up from the couch from under your arms until you are standing.

Both of you then quietly walk (or waddle) to the bathroom, and you do your thing. Depending on the nature of your visit to the porcelain throne, you will need a little help to ensure that no hitchhikers are remaining. So you ask your mother to help you ‘check’. After finishes with the lovely work that she should have stopped doing by the time you were 2, she helps you off the toilet, and then leaves to wash her hands and rejoin the party.

Something as simple as just running to the bathroom, is a bit more involved for people like me. However, you must ensure that you laugh your way through it. You wouldn’t believe some of the conversations that I have with my mother during my needing to go to the bathroom. Or maybe you would have got the idea if you saw my Instagram post the other day! Yeah we are a bit crazy I know.

It also takes me longer to leave the house, because I need help with my shoes, having my hair tied in a simply pony tail, or having your mother pull your pants up for you because you have had one too many croissants for breakfast.

However it isn’t all uncomfortable times in the care department!! I have over times developed little ways for me to be independent. Such as using a flower sifter to scoop rice and pasta out of boiling water, using a claw to pick up items of the floor, training my dog to also pick things up for me, and using a back scrubber as my hand when washing my hair just to name a few.

The one perk of needing to find ways to doing mundane tasks, is you turn into a pretty good problem solver!! Which honestly is life goals in itself!

My Muscular Dystrophy journey: Where am I now?

When I was diagnosed with Muscular Dystrophy, The Doctor's didn't think I walk at my Formal.. The photo is me in a hot pink dress with rinestones making flowers sewn onto it with pleets. My hair is brown and half pull up. The background is a mix of black, grey and white. My right hand is on my hip, i am looking at the camera on an angle and smiling.
When I was diagnosed with Muscular Dystrophy, the Doctor’s didn’t think I walk at my Formal.. This is my year 12 Formal in 2016.. I was walking and wearing heels!

As I said on the podcast, my prognosis originally wasn’t the best. The doctor’s were giving me advice based off research in to the Duchenne strand of MD due to me being only 1 of 6 Australians with my strand at the time when i was diagnosed.

I have been told that hopefully I should be stable until my 40s and 50s. I keeping hold of that prognosis for sure.

I have tried different therapies, and therapists to try and slow my condition and maintain the strength I have. Some therapies I have sticked with, others I have trashed because I feel they don’t work for me.

I am blessed to have such a great team with my Physio, Exercise Physiologist, my mum / remedial massage therapist, my family, psychologist and natripath and dietitan that I am happy with where I am at.

I am a firm believer of everything that you are given in life has been given to you for a reason. In the end you are almost always grateful for the lessons you learn along the way. Life is meant to be a beautiful journey that consist of the highest of highs, and the lowest of lows and all the picture perfect moments in between, to create a individual work of art unique to you. Life is beautiful and yes even at times cruel. However, if you chose to focus on the negatives, you miss the value and gifts each moment has to give.

Being born with Muscular Dystrophy has presented many challenges, not only to me but my family. When I hit milsetones or achievements in the gym it is an extra reason to celebrate my body. Sure it doesn’t look and move like everyone else’s, but that is what I love. It depicts the journey, and one that I am proud of. Being ‘different’ allows being to challenge everyone’s outlook on life, and question the word ‘normal’. I love my journey and I wouldn’t change it.

But let me ask you this, do you love yours??


P.s have you checked you the podcast episode yet? If not check it out and let me know what you think!

p.p.s did you know i did a blog post all about my wacky and fun ways that I do day to day things!? Go check it out!

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