Tag Archives: medical research

Motor Neurone Disease (MND) Awareness.

Today, I’d like to introduce you to my much loved school friend, Kirsten, who was diagnosed with Motor Neuron Disease (MND).
Having known Kirsten for much of my life, it’s hard to find the words to do her justice. So, I will hand over to her and her most recent post about the efforts of her daughter and niece, to educate and fund raise at school to support MND.
On a personal note, I live with a chronic autoimmune disease, which attacks my muscles and lungs. Prior to treatment, I was severely ill and spent around nine weeks in hospital on diagnosis. However, there was treatment, even if there was no cure. The importance of treatment is something we should never take for granted.
Now, I’ll let Kirsten speak for herself…

Best wishes,

Rowena

Kirsten Harley

My gorgeous niece Susy is in the high school leadership team that decided to organise an MND fundraiser. In lieu of me speaking – because, y’know, the whole no-larynx-bed-103 situation – Kimi and Iwrote this for Susy and her to read in assembly. To say I’m proud of these two doesn’t come close!

*****

We were going to ask Kirsten Harley, my auntie and Kimi’s mum, to come and talk to everyone about motor neurone disease. But in November she had her voice box removed as part of life-saving surgery to connect her to a ventilator, and she is still in hospital.

So she and my cousin Kimi have written this and weI will play some video from 2 years ago.

*****

Everyone, put your hands in your lap. While this is being read, imagine that even if you try your hardest, you can’t move your arms.

Now, imagine…

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F- Robert Frost: The Road Not Taken

Dear Mr Frost,

Sometimes, when you reach a fork in the road, you don’t get much of a choice about which road to take. Such as when you’re a dead poet receiving a letter all the way from the 21st Century and you’re being expected  to think, respond, answer questions when your only conversations have been with the worms and other subterranean guests.  That’s what makes life, and I guess even death, exciting. There’s always the challenge of the unexpected…that wake up call. So, Mr Frost, this is yours.

Welcome back!

Through your poem The Road Not Taken, you’ve become known as the man who stuck the fork in the road, creating that ultimate dilemma…which road should you take? While in your original poem, both roads are almost exactly the same, it has been reinterpreted as making a choice between the freeway or the road less travelled. Are you a follower or a trail blazer?

Now, I’ve reached my own fork in the road.

Should we explore what your poem was originally about or what it’s come to mean to so many?

Choosing Which Road To Take

While it can be really difficult to decide between two evenly weighted options, it’s either win-win or lose-lose. Of course, you’re closing off a possibility and with that there’s that sense of loss but if we are to carpe diem seize the day, we acknowledge that loss and move on.

The Road Less Travelled: The Freeway or the Scenic Road?

So, moving onto a different fork.

On one hand, you have the Freeway with its smooth, well sign posted conditions and faster speed limits but bland scenery.

Then, there’s the Scenic Road with is beautiful scenery, photo opportunities, slower speed limits and unpredictability. You’re constantly needing to monitor for hazards, take evasive action and possibly even navigate by the stars. Anything could be down that road and there could be a very good reason no one else is using it. After all, the flock might not be mistaken.

Which road would you choose?

That’s what I asked my family over dinner tonight.

My husband pointed out that your choice depends on the circumstances. If you’re in a hurry and need to get from A to B as fast as possible, then take the Freeway. However, if you have plenty of time and are looking for interesting places to explore, adventures  and photo opportunities, then take the scenic road. He also grew up in the country and loves nothing more than burning down a dirt road, where the car almost dances going round a corner. That’s an Aussie bloke for you and possibly quite different from your New England experience.

So, rather than setting hard and fast rules, we need to be flexible about which road we should take. However, does this leave us sitting on a barbed wire fence going nowhere?

Forced On the Road Less Travelled.

As much as we like to believe we’re in the driver’s seat, life can dump us on the road less travelled without a bottle of water or compass. There is no choice. I was born with a mind-altering neurological condition called hydrocephalus, which went undiagnosed until I was 25. With a harbour inside my head applying pressure in all sorts of funny places, I was bush bashing with my machete to create any kind of path. Surgery saved my life. However, then I developed a rare life-threatening auto-immune disease where my muscles attack themselves. This goes in and out of remission and even when I’m well and look fine, there’s still stuff going on.

However, through being dumped on a rough and rugged road and having to survive, I’ve become much stronger and tenacious. I’ve also been shattered, bruised and battered along the way and it’s been incredibly hard going. At times, nothing short of anguish. However, like coal enduring all that heat and pressure, I’ve emerged a diamond. Well, at least in theory!

That confirms some of the virtues of travelling along that rough, unchartered road.

A Choice

Taking the road less travelled, can also be a personal choice. Perhaps, you could call it lively curiosity. That pursuing all my unanswered questions, automatically takes me over unchartered ground.

Kids and the Road Less Travelled.

family

A recent family photo.

While I am accustomed to taking the road less travelled myself, I am much more perplexed about whether our kids should undertake the journey.

As a parent, protecting your children is an inbuilt, natural instinct. Of course, you want to give them a smooth road. Make their journey as easy as possible. Yet, is that what they need? What will be the ultimate result?  That concerns me.

If the kids are going to bounce back from life’s inevitable challenges, they need resilience. They’ll only develop resilience through being challenged, encountering problems and learning how to overcome them. You don’t develop these skills sticking to the main road where everything’s being done for you. No work or imagination required. Stay between the lines and under the speed limit and you’ll be right.

That’s very well when it comes to pitting themselves against the great outdoors but how about taking the road less travelled in the school context? Going against the flow and flaunting their differences like neon signs in the playground where kids can be brutally cruel and survival of the fittest is the modus operandi? What might be a bold, creative or adventurous move, can have a kid torn down and thrown to the wolves. Bullies know no mercy.

Knowing this, do you as a parent step in and gently redirect your child back into the flock or do you leave them be? After all, do they really need to sell their souls to belong, be accepted and have a few friends?  Surely, that’s not asking for a lot!!

These are tough questions. What would you recommend to parents? Should they be encouraging their children to conform and stick to the freeway? Or should they be and develop themselves, tackling the bumps and unpredictability along the scenic route, hoping they emerge a diamond, not crushed?

Personally, I also have to believe that shutting down independent thought is a really bad thing for the future of our world. That we need problem-solvers and thinkers who can put a heap of seemingly random things together and find that cure for cancer, develop ways of containing climate change and can help people live more harmoniously together. Cloned thinking has never led to discovery, invention or the answers we need.

I’m sorry I’ve jumped up on my soap box and have given you more of a lecture when I should be asking you. I guess I just needed to get all this out. See what you think.

Anyway, it’s now time for me to get some shut eye and for you to get to work.

I look forward to hearing from you!

Best wishes,

Rowena

Robert Frost's Grave

 

 

Terminal Cyberchondria…Yes! Please!

Being a blogger, a writer, reader and someone who likes to take responsibility for their own health, I’m a prime candidate for Terminal Cyberchondria. While not necessarily terminal in the sense of being life-threatening, you catch Cyberchondria from your computer terminal and more specifically by surfing the Internet for a diagnosis when you have more than a few “vague symptoms”.

Of course, having cyberchondria assumes that you are catastrophising again and your suspicions are wrong. That you have more chance of being killed in a car accident, or while riding a bike, than contracting that dreaded disease. No chance at all!! You don’t even need to cross your fingers, pray, say your Hail Mary’s. It’s all made up. In that great Australian tradition:”you’ll be right mate”!

However, once you’ve been struck by one or two rare, life-threatening diseases, that automatically opens the flood gates for you to develop any weird and wonderful disease… even the dreaded Ebola virus. After all, it only takes one infected person to board a train and it will spread faster than wildfire.

Well, I don’t have to worry about catching Ebola.

That has nothing to do with the fact that I live in Australia. Rather, you can pronounce and even spell Ebola and people have heard about it. That gives me automatic immunity. I specialize in the weird stuff…phenomenon even the doctors have to Google.

Anyway, since I had chemo at the start of the year, I’ve been having serious short-term memory issues and virtually no concept of time. For quite awhile, I’ve written these difficulties off as chemo brain, which is quite a common experience. In a way, this has been an interesting, quirky, experiment but I’ve now decided that it’s gone on long enough. I’m seeing my neurologist tomorrow.

There is quite a list of possibilities for my memory troubles:

  1. Chemo brain.
  2. Menopause.
  3. My shunt playing up. (I have hydrocephalus)
  4. Staying up too late.

However, I also started wondering whether these memory difficulties were side-effects of the new drugs I’ve been taking since I finished chemo. I’m on a drug called cellcept, which represses your immune system.

Google: a cyberchondriac's best friend.

Google: a cyberchondriac’s best friend.

When I Googled its side-effects, that’s when cyberchondria really kicked in. These side-effects include a virus that attacks your brain. In keeping with the unpronounceable dermatomyositis, this brain infection is called progressive multifocal leukoencephalopathy (PML). PML can be fatal. Symptoms include clumsiness, weakness that keeps getting worse, not being able to move or use one side of the body, and changes in vision, speech or personality (such as not caring about things that you usually care about and confusion).

After finding out the name of this dreaded disease, I’m wondering whether the people who name these weird and wonderful diseases and conditions, go fishing in their alphabet soup to put the names together. It has been hard enough to deal with “Dermatomyositis”, which is a serious mouthful but it only had 14 letters. The last word alone in PML has 19 letters. That must mean it’s very nasty indeed.

Going fishing in their alphabet soup. Is this how scientists name rare diseases? I'm starting to wonder...

Going fishing in their alphabet soup. Is this how scientists name rare diseases? I’m starting to wonder…

When I discussed the complexity of these medical terms with Geoff, he pointed out that they are intended to be descriptions so a medical person can quickly identify what is likely to be a complex medical situation far better than simply calling it: “Fred the Super Really Bad Disease That’s Going to kill You”. I can see his point but that still doesn’t help me explain what I’ve got and get any kind of acknowledgement from anyone outside the medical fraternity.

Ironically, while I have these two exceptionally rare medical conditions, I still have my tonsils, appendex and adenoids…all those bits people commonly have out and that’s what concerns me about PML. It’s rare enough and hard enough to pronounce, that it’s just my kind of disease.

You see, despite the cyberchonriacs, there are those rare winners of life’s rare lotteries who actually have what they thought they had. Yes, they actually have contracted one of these exceptionally rare, systemic, really nasty diseases. You know the type of thing that used to show up on the hit medical series House. Instead of being free to continue their explorations in cyberspace, before they even know what’s hit them they’ve been admitted to hospital. Yes, the proverbial Mac truck of bad luck was heading their way and they’ve just taken a very direct hit.

That’s me.

Dermatomyositis is a rare, systemic auto-immune disease where your muscles and skin attack themselves. It affects about 1 in 100,000 people and I’ve only met one or two people with the disease. You can get painful skin rashes and your muscles breakdown resulting in muscle weakness and wastage. While there is no cure, there is treatment which is largely effective although my case has proved more difficult to manage than average. The way I see it, I’m fighting myself and being rather strong willed, it’s been quite a battle. Dermatomyositis can also affect your breathing, swallowing and digestion and there are also the side-effects of the drugs and treatments. I am really surprised that I don’t glow in the dark after all my treatments. I’ve even had the Big C. That’s right. They’ve even blasted it with chemo. Thank goodness it worked.

However, while the medical treatments can be annoying, the hardest thing about having dermatomyositis has to be trying to explain it to anybody. I don’t know if you recall the Decore shampoo   commercial a few years ago where they had the person singing in the shower going: “D…D…D…Decore…Decore”. Dermatomyositis should be classified as some kind of tongue twister. I gave up trying to explain it years ago and just said I had muscular dystrophy. I thought it was a form of MD but it’s officially a neuro-muscular disease. Consequently, I now say it’s related to Muscular Dystrophy. However, if our son is around, he smiles with a baffled expression and tells people point blank: “You don’t want to know.”

Anyway, when you have a very rare disease, it opens the floodgates for all sorts of other conditions. After all, no one can tell you that rare can’t happen to you. Your last name might not be Murphy but bad luck sure knows how to find you!! It has your landline, your mobile and even your email address.

There’s a famous quote from the movie Casablanca which makes me smile:

“Of all the gin joints, in all the towns, in all the world, she walks into mine…”

That might have happened with dermatomyositis but hopefully, progressive multifocal leukoencephalopathy has somewhere else to go. It will board that plane with Ilse and Victor Laslo and disappear way beyond the clouds. Poof!

Goodbye Progressive Multifocal Leukoencephalopathy  (PML). Have a nice life!!

Goodbye Progressive Multifocal Leukoencephalopathy (PML). Have a nice life!!

Wish me luck with the neurologist tomorrow.

I don’t mind being told that I’ve over-reacted. A bad case of Terminal Cyberchondria is exactly what this patient has ordered.

xx Rowena.

If you are looking for information about dermatomyositis, which is a form of myositis:

The Myositis Association of America: http://www.myositis.org/learn-about-myositis/types-of-myositis/dermatomyositis

The Myositis Association of Australia: http://myositis.org.au/