Archive for 'Journal'

I’ve had Multiple Sclerosis for a long time now – coming up 8 years diagnosed (and a lot longer undiagnosed).

Thankfully I’m still in the relapsing-remitting stage which means that after I get some symptoms, I gradually improve back to where I was. Mostly.

But I am fearful of the day my MS transforms into the “progressive” stage where the symptoms arrive for good.

I am now using Gilenya (Fingolimod). It’s an oral medication I’ve been using for 3 months in place of injections of Betaferon or Avonex. It appears to be working reasonably well. I’ve had no flare-ups while I’ve been on it, however I can still feel the MS eating away at me – almost sub-clinical in presentation – but it’s there.

Sometimes I’ll get dizzy. Sometimes I feel nauseous. I’m progressively getting stiffer in my legs making it harder to walk. The mental fogginess descends every now and hand in hand with my short-term memory issues. I still have no libido whatsoever and perhaps most unusual is a regular confusion between left and right. Weird.

I’ve been working from my home office for a year now because I avoid driving unless absolutely necessary.

I try to keep an eye on any news about MS. Over the last two years there’s a great deal been said about Vitamin D, so I’m taking 2000iu a day. I’m supplementing that with Fish Oil (2 grams daily). Even they aren’t helping with the MS, they’re good supplements just for overall health.

About a month ago I discovered Dr. David Wheldon’s Blog. He has a theory that MS is linked to a bacterial infection called Chlamydophila pneumoniae. It’s unrelated to the STI.

As Wheldon says, “There is now powerful evidence for the respiratory pathogen Chlamydophila pneumoniae being a causal factor in some variants of the neurological illness multiple sclerosis.“

Best of all, he has a treatment protocol for this infection that he designed for his Wife – who has MS – and I’ve decided to give it a go.

I don’t really have a GP as I don’t get sick very often, ironic isn’t it? But the basis of the protocol is a suite of prescribed pharmaceuticals – primarily antibiotics.

After spending time reading through his blog and another website called cpnhelp.org, I reached out to my Twitter Followers to see if there were any Doctors willing to work with me on trying the protocol out. Thankfully I found one in Dr. Mike Cadogan, an Emergency Physician here in Perth.

After spending some time with Mike, he prescribed the pharmaceuticals needed and I’m on my way.

You can read about the actual medicines here: http://www.davidwheldon.co.uk/ms-treatment1.html

I’m only in the first stages of the protocol so I can’t say if it’s going to work, but I already feel massively better because at least I’m trying something and there is – perhaps tiny – a sliver of hope.

Multiple Sclerosis is a chronic, debilitating auto-immune disease that is currently considered incurable.

It’s a difficult disease to test for. You can’t just take a Urine or Blood test, it’s about physical & mental symptoms as well as lesions in your brain and spinal cord that can only be seen through MRI.

If you have MS, you have nothing to lose by checking out the two websites I’ve posted. Read them and approach your Doctor. I will keep posting my progress (or lack of progress).

Today is Day 5 of my treatment protocol. I have to admit I’m feeling pretty good. Yes, that may be a placebo effect, but if it’s making me feel better, mission accomplished!

Refining a list of essential songs is hard. I could easily have over 100 tracks, but this is about essential tracks and the game here is to narrow it down to THE songs that made a difference.

So here it is, my #Essential20. The songs that actually changed me.

It’s no secret I have Multiple Sclerosis. I don’t harp on about it as I’m not a big fan of whingers, but I’m happy to post about the course of my treatment in the hope that it helps people searching the net for more understanding of this disease.

Today I went back and saw the Endocrinologist. The first visit last Thursday cost $490. This visit $240. I had bloods done last week, so today was the Doctor’s analysis on the results.

I guess it’s good news to say that most everything was ok except for my testosterone & cortisol levels. Apparently the testosterone levels are meant to be between 225 and 750. Mine is sitting at 220. The Doctor considered this low but not worth treating.

My cortisol is WAY too high. He’s given me some tablets to take tonight and then I have another blood test in the morning to see if the cortisol has been suppressed. He believes there’s a small but real possibility of early on-set Cushing’s Syndrome.

Still, it’s good to know.

He advised me to lose some weight – I’m about 20 kgs above my recommended weight and suggested Cognitive Behavioural Therapy might help as he suspects undiagnosed clinical depression.

I’m not so sure.

Anyway, all of this was in aid of switching to a new treatment for my Multiple Sclerosis.

I was taking a weekly injection of Avonex, but a new tablet has recently been added to the Pharmaceutical Benefits Scheme called “Gilenya” or Fingolimod.

Taking a tablet is vastly preferable to painful weekly injections. I understand there’s also far less side effects too.

Except for one. And it’s a pretty significant one.

In some patients, the very first Gilenya tablet they take can cause their heart to stop. That’s why I’ve been referring to it as the “Pill of Death”. To cut a long story short, earlier this year I also had to go and see a Cardiologist because I have always had bradycardia – or a slow resting heart beat. Nothing worth treating or being concerned about – except if you’re planning on taking a tablet that interferes with the heart’s electrics.

The Cardiologist suggested all is essentially fine – and now the Endocrinologist has said the same.

It seems the Pill of Death is imminent.

My Neurologist has organised for me to have a bed in a Cardiology Ward in 2 weeks time.

I’ll be wired up to an ECG and I’ll have a Crash Cart next to me. I’ll be taking the Gilenya under medical supervision just in case my heart stops. Oh what fun!

Thankfully over the last year my MS symptoms have been minimal.

And I still can’t sleep. The Neuro has put me on Seroquel (off-label prescription) which seems to help in getting to sleep, but even with that I’m a very, very light sleeper and even a passing car will wake me up. I’m avoiding sleeping tablets and codeine as they make me groggy.

My feet still burn but not as badly as before. My legs ache. I get “electrical buzzing” in my lower half if I tilt my head forward and I still get the occasional MS headache. They feel very different to normal headaches and migraines. I still have no real balance and have to use my eyes to compensate, however my speech and hearing are fine. The MS Hug is ever-present but you get used to it! Most annoying is the micro-spasms in my feet and fingers. They’re painful but manageable. The problem is the spasms cause me to flinch or kick-out. I’m just waiting for the first time I drop a coffee cup or kick someone’s cat accidentally (mwoohahah!).

So not a huge amount to report in terms of the progress of the disease, but I’ll be sure to keep you posted on the efficacy of Gilenya. Rumour has it that it’s actually reversed some MS symptoms for some patients in the US.

I am very fortunate to not have too many symptoms – and especially not obvious physical ones. MS is a horrible disease that only heads in one direction. Staving off the symptoms is crucial for quality of life.

I’ve been doing a lot of reading about overseas treatments. I’ve discussed the Zamboni CCVSI Treatment at length with my Neuro and I’ve even had an MRI of my neck performed which demonstrated no venous restriction whatsoever.

There’s a drug called “Sativex” out of the UK which is essentially a medical dose of Cannabis.

Seems silly to have to pay Big Pharma for something people can grow in their own back yard. Sativex relieves muscle spasms and peripheral neuropathy, increases appetite, improves mood and helps with sleep.

I’d dearly like to ask our Politicians why it’s illegal for me to use a plant – a herb – to treat my painful symptoms.

Anyone want to step up and explain?

Whilst the iPad2 doesn’t make for a very good camera, it is convenient. The photos lack depth and richness of colour, but who wants to lug around a huge SLR?

Here’s a few shots of the beautiful gardens here in Nusa Dua. It’s gorgeous and there’s loads of staff looking after the place.

I went and had a Balinese Massage earlier and the Spa is just divine. Heavenly! The tiny Balinese girl who spent an hour pummeling me has the strongest hands of anyone I’ve ever known. They were like a vise.

As much as I enjoyed it, it cost 800,000r which roughly translates to AUD$100. That’s an Australian price and feels like gouging.

I’m loving you Club Med but I seriously do not like being ripped off.

My only other criticism? An EMPTY bar fridge. Put some house wine and beer in there please. We paid a vast amount to be here…. Give me value! That said, I can’t complain about the food. The choice is extraordinary, the quality is superb and there’s always somewhere open when you need. Plus the Bars all serve top shelf, brand name spirits as part of the deal.

Speaking of prices, the kids wanted an inflatable whale for the pool. It cost AUD$50. Club Med, if your clients feel they’re being ripped off, they won’t come back.

My suggestion? Charge 25% more. Throw in spa treatments, t-shirts, inflatable toys, a bar fridge, tours and even professional photos. Then people leave happy, content, satisfied and with a sense of having received great value.

Yes, we share the village with Iguanas.

And squirrels!

And the French Girls are still being rude. Is queue jumping de riguer in France? Why do they feel it’s ok to push in here? Surly and arrogant.

I wanted to get that off my chest, so I can enjoy the good things here and let go of what irks me!

Anyone who knows me, knows that I’m not the sort of person to whinge, moan or complain. By nature, I’m a positive sort and I prefer to talk about the good things in life rather than taking the victim mentality. Mum always said, “If you can’t say anything nice, don’t say anything at all”. Mum is usually right. It’s a mantra I stick to, as I find it tends to spread. Smiles are contagious and I enjoy being around people who are happy. It’s draining to associate with those who only ever complain and I avoid them like the Plague.

I have Multiple Sclerosis. It’s a degenerative condition that destroys nerves and brain cells and unfortunately it has no cure. MS affects everyone differently. Different parts of the brain and central nervous system can be affected, so for some it could be their hearing. For others, their memory. For me, it’s primarily my balance and my serotonin levels. Serotonin being the hormone that regulates mood and helps people sleep.

Not that you’ll hear me complain. I don’t hide my condition, but I also don’t use it to elicit sympathy. I rarely bring it up except on the odd occasion where it really does prevent me performing. I felt rather guilty this past weekend when my 61 year old Father climbed up on the roof to fix something and I couldn’t assist because my lack of balance makes working at heights incredibly dangerous.

For the last 6 months, I’ve been working from home. As the Managing Director of PCGURU, it’s easy and convenient as the bulk of my responsibilities can be performed via email and the telephone. It’s certainly taken the pressure off as some days when I’ve been unable to sleep for a few nights, I don’t look very healthy and I certainly shouldn’t be driving!

I’ve now been on anti-inflammatory medication Avonex for a year. It’s a weekly, painful, intra-muscular injection that gives me terrible flu-symptoms for the 12 hours after taking it. But I’m confident its held off any major progression of my MS. I’m also taking 1000iu of Vitamin D, Fish Oil Supplements, Multivitamins and 3 different anti-depressants which are supposed to help me maintain a “normal” circadian cycle.

I’m a heavy user of Twitter. Because I spend so much time in front of PCs, I update my status throughout the day. I thoroughly enjoy the interactions I have in this brave new world, and I’ve made many wonderful contacts who have been responsible for most of the opportunities I’ve been given in the Media over the last couple of years. Twitter is an environment where everyone is equal and no one knows any more about you than that which you choose to reveal. It’s amazing how much people do reveal in just 140 characters! In many cases I’ve seen Twitter become a support network for people having their own troubles.

Like so many people on Twitter, I’ve been struggling with depression for nearly 5 years now. My Neurologist (who treats my Multiple Sclerosis) says that my depression is caused by a neurochemical imbalance primarily attributable to scarring and damage in the regions of the brain responsible for moderating mood, sleep and appetite. My 3 heavy duty medications help considerably in dodging the black dog that persistently hounds me.

It’s exhausting, but I choose to be happy. I’m lucky in so many ways. I have a great family. Four beautiful kids and an amazing superwoman of a wife. I have a business that helps other businesses succeed and I have parents who are always there for me. I have friends who call me more than I call them and other than my MS & my appallingly bad eyesight, I am a very healthy person.

It’s probably accurate to say that I have achieved a modicum of success. I wouldn’t call myself “successful” but I do believe that I’m on my way. Every day I work on ways to become more successful because I’m now on a timeline. Multiple Sclerosis is a condition that can be slowed but not halted. It is beyond any doubt that within the next 10-20 years I will be wheelchair-bound – if not sooner. MS doesn’t reduce your life expectancy, it reduces your quality of life. I’m obviously not looking forward to getting worse – so I’m doing all the preparation I can to ensure the people around me are catered for once I become less capable.

In the interim, amongst other things I’m trying to step up my media presence. I figure I can achieve a number of things through a media profile. I can share my knowledge & passion for the tech world and I can demonstrate to other people with MS that a diagnosis of a demyelinating disease isn’t the end of the world. I can lead by example when it comes to showing that people with depression and other mental disabilities can still function and participate productively in society.

I’ve always been something of a lone wolf. I blame my awful school experiences for that. But today I’m glad I went through what I did. It’s made me independent, strong-willed and single-minded. I know now that I can use my characteristics and personality traits to help others break through their own barriers. The few opportunities I’ve had so far to do that have been extremely satisfying. Giving – especially of myself – has become something that feels like the right thing to do.

I’m an Athiest. I don’t believe in God or the supernatural. I believe our time on Earth is all we have and that when we die – that’s it. We’re gone and its all over. That makes life so much more precious to me as I know the time I have – here and now – with the people I love and care about is all I’m ever going to have. I need to make a difference in the short time I have remaining. A time made shorter by a condition that continuously and consistently limits my abilities.

So what’s next?

I’ll be trying a new MS medication in September that is a tablet rather than a weekly injection. Research into stem cell therapy is showing promising results in halting the progression of MS and in some cases even repairing the damage already done. My Lexam, Seroquel and Mirtazipine continue to hold the dark thunderclouds of depression at bay. Mostly.

I’m now on the board of the not-for-profit West TV as I think I can make a difference in helping it navigate tricky business waters and I’m putting my hand up to be on the board of Multiple Sclerosis WA this year. If I can help anyone through being an example of someone who has both physiological and psychological challenges, or by being a sounding board, I’ll be a happy man.

In closing, I want you to consider something. Please don’t assume that the bravado and confidence you see in another is bullet proof. Consider that they may very well be trying to create a happy world around them. Happiness breeds happiness. Opportunity can be shared. In my circumstance, I don’t have the time to deal with negativity. I have a limited time-line ahead of me and I want to spend it being happy, being around happy and making those I care about happy.

Life is too short.

The next time you see someone who looks successful, who looks like they don’t have a care in the world, just remember that there may be a far more complex story just below that brave face.