What is a #MSWarrior???

Have you ever been so inspired by someone, so moved by their contribution to this world, and utterly overwhelmed by their beaming presence whenever they walk into a room?

These people, who I am hopeful each of you have had the pleasure of meeting, are exceptionally rare.

Their radiance is empowering and they are simply the most wonderful type of human to be around.

They somehow fill any space with a sense of contentment, with excitement that is at the very same time soothing, and with an abundance of warmth and love.

These people pleasantly immerse themselves into your heart and mind, and forever take residence in your memories – memories that seem to sporadically come into your consciousness when you least expect it – like when you are gazing off in the distance while waiting for the traffic lights to turn green, or dunking your tea bag in boiling water on a Sunday morning.

I hold the most beautiful memories of such a lady and I would love to tell you some of her story.

For the sake of confidentiality, I will call her Mrs P…..

Mrs P was witty and extremely intelligent.
She was stubbornly independent.
She took pride in her appearance, but was never vein.
She found no greater happiness then when spending time with the ones she loved.
Mrs P always looked out for others needs before her own.
She was the most generous soul I have ever met – generous with her time, her energy, her love, her finances and her knowledge and wisdom.
She dedicated her life to relieving others suffering.

I met Mrs P many years ago.

Before I began studying medicine I was a disability support worker….and I was Mrs P’s personal carer.

Mrs P had an aggressive form of Multiple Sclerosis.

Being a disability support worker taught me a lot – 
I learnt how to shower and clean another human being whilst maintaining their dignity and autonomy.
I learnt how to feed grown adults and how holding the spoon a certain way meant it moulded the roof of their mouth perfectly, making it much more comfortable for them.
I learnt that for my clients that couldn’t move their legs, untucking the tight sheets at the end of the bed and wrapping them around their feet made for a much cosier sleep.

And I learnt that, at times, life is cruel and unfair.

I’m not actually sure if being a carer taught me more about caring for others physical, mental and spiritual needs …. or if it taught me more about myself…. probably the later.

But I thought I would begin a conversation about Multiple Sclerosis in loving memory of my friend who was extremely passionate about education and empowering those living with MS.

Your friend sounds divine…. so, what exactly is Multiple Sclerosis?
Multiple Sclerosis (MS) is an autoimmune and inflammatory disease of the central nervous system.
It is actually one of the most common central nervous system diseases in Australia!

The nervous system is divided into 2, the …

• Central nervous system
  • Which includes the brain and the spinal cord
• Peripheral nervous system
  • Which includes all the nerves that branch off from the brain and the spinal cord
  • They connect the central nervous system to the ‘periphery’

So, MS is a disease that targets the brain and the spinal cord.

As I have chatted about in a previous blog, the autoimmune part of this disease is due to a crazy overshoot of inflammatory cells and antibodies that target normal, healthy tissue or organs (by accident!).

Now with MS, the inappropriate immune response targets a specific part of the central nervous system called ‘myelin’.

Myelin a protective coating that surrounds our nerves – it is a fatty type substance and acts as a sort of insulator that helps electrical signals travel quicker down our nerve cells.

Sooo, if your immune cells mistakenly attack this myelin (= demyelination), it damages the nerve beneath it (= neurodegeneration), and results in a slower conduction speed and leads to the formation of scar tissue or sclerotic plaques.

What is it caused by?
The answer to this question is very complex – but like a lot of things in medicine, if we don’t have solid answer then the likely reason is due to ‘a mixture of both genetic and environmental factors’.

Research shows that, potentially, the genes that control the immune system can be working as they should be, until baaammmm, something from the environment triggers them to misbehave!

Proposed ‘triggers’ that may increase your risk include being exposed to Epstein-Barr Virus (‘glandular fever’) and smoking.

Being related to someone that has MS, living further away from the equator and having a lack of vitamin D also may increase your risk.

What are the signs and symptoms of MS?
MS affects everyone slightly differently and is often unpredictable, but it does have many common features.

Depending on what nerve is being targeted it can present with;

• Motor issues;
  • Weakness
  • Spasticity
    • Where certain muscles spasm or are continuously contracted
    • This therefore leads to difficulties with movement, walking and speaking
  • Scanning speech
    • A type of speech where words are broken up into syllables with large pauses between them  
  • Tremor
  • Paraesthesias
    • Pins and needles or numbness
    • ‘Lhermitte sign’ – paraesthesias or electric-like shocks that travel down the spine, arms or trunk with neck flexion (chin to chest)
• Fatigue
• Pain
• Autonomic involvement such as bladder or bowel incontinence
• Visual problems or pain with eye movement
• Heat sensitivity
  • ‘Uhthoff phenomenon’ – a temporary worsening of symptoms in the setting of increased heat – hot weather, fever or being in a sauna
• Sleep issues
• Depression
• Subjective difficulties with attention span, concentration and memory

There are a few different ways that MS can present patterns of disability, and they are commonly broken down into;

• Relapsing remitting;
  • Most common type
  • Relapse means the return or the worsening of symptoms
  • Remit means the improvement or disappearance of symptoms
  • Symptoms come and go with periods of relative stability between declines
• Secondary progressive;
  • Relatively stable at first followed by steady decline where symptoms get worse
• Primary progressive;
  • Rare
  • This is where the symptoms primarily, progressively get worse over time
  • No real ‘attacks’ as they have a steady decline in function
• Progressive-relapsing
  • Steady decline in function over time with attacks

How is it diagnosed?
No single blood test or imaging modality can diagnose MS.

Commonly the combination of symptoms, physical findings and results from either an MRI (doughnut-looking machine that takes pictures of the brain), a lumbar puncture (a procedure used to collect fluid from the spine through a needle in the lower back) or evoked potential tests (a test that measures how quickly information travels through nerves) is used.

How is MS managed?
Unfortunately, there is no current cure for MS – but with a big fat HOWEVERRRR, there are incredible advances in treatments that alter disease activity, slow the progression down, reduces the number of lesions and help improve the symptoms!

Often ‘disease modifying therapies’ are used to reduce the number of future relapses and steroids are used in ‘flare ups’ to help calm down the excessive inflammation.

As MS is so different for each person, it is common practice to work closely with a neurologist to find a treatment plan / cocktail that best suits the specific person, their type of MS and their symptoms.

Mrs P was an incredible lady and I would love to tell you more about her impact on the world, but it wouldn’t be fair of me to divulge her complete story – so you will just have to trust me when I say that this angel was put on this earth to do big things, and not only did she tick that big box off, but she did it with a smile, with grace, and by improving the lives of soooo many along the way!

I sincerely hope that, on whatever cloud she is floating on today, she is sipping on her favourite flavour of Baileys, with that bright red lipstick and favourite round sun hat on.
I hope she is smiling with every peaceful and painless breath – soaking in the magnitude of the love and compassion she selflessly left the world; because she was the definition of a #MSWarrior!

Tenae,
XXX

“Never believe that a few caring people can’t change the world. For, indeed, that’s all who ever have.”

Margaret Mead