Tag Archives: brain

Are you sure we didn't miss the turn off?

Are you sure we didn’t miss the turn off?

The dogs love being able to run around at low tide when we go to Pittwater, Palm Beach. the rippled sand is pocked with soldier crab holes and as the sun sets, the place is quite a moonscape.

Bilbo (right) is striding straight ahead and while I was flicking through possible Rumi quotes, my husband suggested:

“Are you sure we didn’t miss the turn off?

I shouldn’t laugh.

My husband and I have had many explosive moments with me in the navigator’s seat. I don’t know why I always end up navigating because I get lost in the shower and even struggle to follow a map when I turn it the right way up (OK folks…I mean “upside down”.)

I know we probably should invest in one of those GPS thingies for the sake of our marriage but after experiencing the possibilities of neuroplasticity personally, I had hoped that with a bit of practice, that I’d miraculously find my way.

Moreover, I was also concerned that if I gave up, my sense of direction could even get worse. In that case, I might even need GPS to find my car parked in our own drive way.

I shouldn’t jest!!

Anyway, Bilbo looks hell bent on going straight ahead but Lady isn’t quite so sure: “Are you sure we didn’t miss the turn off? I can just see Bilbo, who is a much more introverted, serious dog grumbling back to her:

“We’re fine. I checked the map before we left. I know exactly where we are.”

Then I can see Bilbo quoting Daniel Boone:

“I have never been lost, but I will admit to being confused for several weeks”.

As much as I love John Lennon’s quote Life is what happens while you are busy making other plans,” sometimes, you just want to reach your destination!

Do you have any navigation dramas to share?

xx Rowena

Chemo Brain…the Likely Culprit.

I just wanted to update you quickly after my appointment with my neurologist yesterday. While it’s quite cathartic to write humorous posts to deal with difficult situations, I felt I needed to stop being the clown and remove the mask.

The jury is still out on what’s causing my memory problems. It’s looking like chemo brain is the most likely explanation for my memory troubles and my neurologist has recommended eating lots of green leafy veggies, a multi-vitamin high in vitamin B but I also need to have a brain MRI and a neuro-psych assessment.

In case you haven’t had a neuro-psych assessment, it’s where a psychologist asks you a whole heap of questions like: what’s the name of the Prime Minister, count backwards by 7 and what’s the day of the week. Fortunately, they don’t ask you where you left your car keys or what you did with that school note last week. That said, some times even the day of the week could be problematic. Unless you’re Einstein, I’d say most of us don’t like the idea of someone tinkering around inside our heads.

Even if there is a medical justification for my memory troubles, I still don’t want to get the questions wrong. I have my pride and can still hear the humiliation of an entire classroom of kids laughing in my face. Growing up doesn’t erase the horrors of being picked  on at school and most of us have copped it at one time or another.

While I’ve done these tests before and can recall at least some of the questions, I’m trying to stop myself from rehearsing the answers:100, 93, 86, 79…

As much as I don’t want to make a mistake, it would be an even bigger mistake to cover-up my weaknesses. I’d ultimately only be cheating myself.

Meanwhile, I’m taking comfort that my writing is still going well and that I’m playing my violin and these are both mentally, if not physically, complex tasks. There’s still some sort of activity going on upstairs.

By the way, the brain MRI will check for the deadly brain virus with the long name I mentioned in my last post. Apparently, it’s statistically very unlikely: about 1 in 50,000. However, these days stats don’t appease my concerns. The chances of having dermatomyositis were much less at 100,000 to 1 and I struck the jackpot there. Once you have one statistically rare disease, the odds mean nothing.

The neurologist has also ordered some additional blood tests.

Meanwhile, while I’m waiting to get these tests underway, I’m self-medicating. Once you’ve been through chemo, a few bits of chocolate are absolutely harmless.

To read my post about cyberchondria click here: https://beyondtheflow.wordpress.com/2014/10/27/terminal-cyberchondria-yes-please/

xx Rowena

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/

Tai Chi and the Fork in the Road

I don’t know about you but most of the time, I miss the huge fork stuck right in the middle of the road and just keep driving.

With my head up in the clouds or all my thoughts wrapped up in some creative project, it’s not surprising. I’ve been accused of living in my own little world…my own bubble…often enough.

This week, on the other hand, the fork was so big…so glaringly obvious that even I couldn’t miss it.

In my last post, I wrote about my daughter wanting me to take up physie. After she suggested we go roller skating together, I’ve since realised that she just wanted us to do things together and so I’ve been let off the hook.

So while I’ve scratched physie off the list, going through those thought processes made me realise that I really need to pick up some form of regular exercise. Exercise is quite problematic for me so choosing something suitable isn’t easy.

You might recall that I actually mentioned Tai chi in my last post.

Well, the very next day, I was driving home and I saw a huge sign in front our local community centre: “Beginner Tai Chi Classes”. I couldn’t believe it. It was like that sign was put there just for me and I knew it. The classes are even on during the day at a very convenient time. Moreover, just as I was wondering how I could possibly remember the phone number, I realised that it was only two digits different to our phone number. How easy was that?

When things are meant to be, they are really meant to be. Everything comes together so smoothly without any effort like a huge enormous present just left on your doorstep. Freaky!

Today, I even called the number. That was an achievement!

We all know that it’s one thing to see a sign. It’s another thing to know that glaring neon sign was put there for you. But it’s a huge, enormous step to actually pick up the phone and make the call!

I did it!

Now, I’m on my way only I can’t get there for two weeks. This is a serious hurdle. Everyone knows that when you close the deal, you need immediate action…no time or space to back out and reconsider…or forget.

I have to remind myself that I am committed to doing anything to improve my health and when I say anything that means everything. No holes barred. It means being 100% focused, which for me is going to be almost impossible considering I’m spread pretty thin at the moment but I can only do my best.

If Tai Chi only lives up to half its claims, things will be looking up. The Australian Tai Chi website suggests:

‘From a psychological point of view, Tai Chi helps release emotional tensions, increases concentration and awareness and decreases stressful psychological and physiological reactions… One becomes more centred, more at peace with oneself and less subject to outside influences.” http://www.taichiaustralia.com.au/TaiChi/Benefits.htm

After some of the clashes I’ve had with my son lately, being less affected by outside influences sounds absolutely fabulous!!

Tai Chi will be a dramatic shift for me.

For anyone who knows me, the thought of me doing anything relaxing that requires silence, concentration and no talking, is mission impossible… a complete joke. I even manage to strike up in depth conversations with my dentist during root canal therapy. I get restless waiting for trains. I just can’t sit still. I’m always moving, talking, thinking, planning, pondering. I have no idea what it’s like to just BE!

I need to find out! This really could be radically life changing. I know that. I need to keep reminding myself of that like a mantra so I’ll really take it seriously:

 

Rowena you are going to go to Tai Chi.

You are going to go to Tai Chi.

You are going to go to Tai Chi.

I know I’m sounding very serious and committed to this new direction but I’ve had very good intentions in the past. I’ve had the proverbial fork rammed right up my nose and yet still I’ve managed to ignore it. That takes serious effort and real commitment.

The Neon Fork.

Last year, I had every intention of getting into yoga and meditation. One afternoon a week, I used to take my kids to swimming lessons where I chatted poolside with a yoga instructor. If ever there was someone who needed to do yoga, it was me a year ago. Despite all these good intentions, I never quite got there. I even wrote a poem about these good intentions…about how you find the acorn. Put it in your pocket with every good intention of planting it but the poor old acorn gets left in your pocket. Goes through the wash. Gets left by the bed. It goes on a grand royal tour but never finds its way into the ground.

That’s me. Great intentions but I struggle with implementation!

But that’s the old me. This is the new me and the new me is working overtime to convert good intentions not only into concrete actions but into life changing commitment. Change is all about the long-haul to be effective….perseverance in other words!

I am so good with all this motivational talk stuff but now I have to walk the talk or in this instance…Tai Chi it!

I am so determined to follow through on this, which is going to be difficult. As I said, I can’t get there for the next few weeks. It is hard enough to start a new path, especially one involving exercise but how can I possibly stick with it when I can’t get started straight away? This is going to take some serious willpower. Determination or perhaps a huge sign in my diary. “Tai Chi starts today”. I have to keep reminding myself.

This brings me to the following question… “If we know what we should
be doing something, why don’t we just do it? Why don’t we stick with it?

Does it mean we haven’t really decided? We still have a foot in both camps? Are we just lazy? I’m sure there is some fancy scientific equation for all of this. It might be Newton’s Law of Inertia? I like a law of inertia, by the way. I can be very inert at times although
you’d never know it. Everyone always comments on how I never stop but perhaps that is also a form of inertia. Bouncing around not doing the things you really ought to be doing.

It’s definitely avoidance.

Avoidance was a great thing in the days before we found out about brain plasticity. You could just decide that something wasn’t your thing and be done with it.

Now, we know that when we avoid something, that part of our brain is actually shrinking, putting us under enormous pressure to perform. Nobody likes the idea of a shrinking brain…especially when it’s your own brain that’s wasting away!

Avoidance isn’t the end of it either. When you avoid something, your brain shrinks but when you overdo it, your brain produces this superhighway of cabling. So you can’t just go and have a panic attack and get away with it anymore either. You have to be calm….otherwise your brain will look like an LA freeway with layers and layers of criss-crossing freeways looping around and around each other into a great big tangled knot of fear.
This is all very scary stuff.

That’s why I have just put a glaring note in my diary. Tai Chi starts today…Well make that the 12th of September. It’s written in red pen and I’ve committed myself with the World Wide Web as my witness. Now, I really do have to go ahead and do it.
Just two weeks to go…

Of course, as soon as I put the note in my diary, a meeting changed but it has brought things forward a week but put in a gap. Now I’m now wondering whether I should just wait three weeks so I can just get into some kind of rhythm. No Rowena. Don’t wait. Get started. This is exactly the sort of thinking that killed off yoga.

A journey of a thousand miles begins with a single step.

Lao-tzu, The Way of Lao-tzu
Chinese philosopher (604 BC – 531 BC)

I wonder if he did Tai Chi…

How do you overcome procrastination? I’d love to hear your comments.

xx Rowena