Wednesday, April 22, 2015

I motorcyclist, and MS Survivor

Howdy. Question: what would you do if someone told you that you had Multiple Sclerosis and there is no cure? July 4, 2009 I found myself pondering that exact situation.

It was difficult to process, I admit. Multiple Sclerosis? MS? Isn't that an acronym for Microsoft? Huh? All I could recall of MS was that one on my mum’s best friends died from it in the late 70s, I knew her and it was terrible.
She curled up into a fetal position over the period of a few years and died from some related, awful complications of her MS. I’m guessing you may not have had a direct experience with it before either, maybe you know someones brother’s missus mum who has it, but that’s about it.

If that's you, here’s the down low: take your immune system and confuse the crap out of it so that it starts attacking itself with alarming and debilitating results.

That’s a really dumbed down summary of a complex disease of course, but it's truly a bugger of a thing no matter which way you look at it. Fortunately there are a lot of great treatments available and I'm up to speed with the best of them. Unfortunately, there are also really aggressive types of MS that can seriously fark.your.shit.up but I'm not in that camp thankfully (touch wood). And of course, no cure. Sad face.

So what is it?

I have what is known as RRMS, Relapsing, Remitting Multiple Sclerosis. In other words, it comes and goes as far as attacks/episodes go, but the symptoms are almost always there. Here is a good explainer video: 

On America's Independence Day 2009, I went from know sweet FA about it to becoming quite the opposite. All of a sudden I needed to know everything about it, what it was going to do to me, what could I do about it, and more importantly - can I still ride?

What happened to you?

My first ‘episode’ was quite specific: it was late June 09 and I woke up with a numb face. Super weirdly, it was specifically numb in odd places. On the side of my face it was about three or four molars on the top left jaw, my left nostril, a patch above my left eyebrow and some of my lower jaw and a bit of my ear lobe. Like I said, very weird.

That lasted about six weeks and I was diagnosed by a wizard and Neurologist, who resembled Gandalf the Grey. Seriously, that dude spoke like Yoda and looked like Gandalf. I think it might be a particular trait of Neurologists. Jump forward six years, 12 MRIs (an xray of sorts) and a whole bunch of different DMDs (Disease Modifying Drugs) that look to slow the progress of the disease, and I’m still here and still riding almost every day, so it could be worse.

Why are you telling me this?

To be honest, I think I've been in denial and I've heard that is common among MS sufferers. Of course my friends and family know but mostly it's something I keep to myself and maybe that's not the way to approach it. It's important to raise awareness of this disease that affects some 20,000 odd Australians, and millions more world wide, because we need a cure.

It’s an awful and often isolating disease with symptoms that range from pain (pins and needles in legs/hands for me) and fatigue (I call that one the lead waistcoat) to mobility issues (stumbling and tripping are common) and cognitive difficulties (brain fog, losing thoughts mid thought, memory loss) and a whole range of other fun stuff.

Think of these things as Mode buttons on a motorbike. Engage Fatigue Mode and it's time for a feet up rest, and there ain't nothing you can do about it but rest up. I've had, or suffer from, all of those things in different doses at different times, but I’m doing my utmost not to give in to it.

What am I doing about it?

I'm trying to live a healthy life as much as I can now, and I have treated my body like shit over the years so I gave up drinking, I (mostly) stopped smoking darts, I eat well now, try to exercise regularly (mostly walking the dogs and of course, RIDING).

There is the ongoing DMDs and MRIs as well, and pretty close relationships with people that have lots of letters after their names and charge a lot of money. The strange thing is that I look pretty normal.

No one would know I have this thing unless I told you, or perhaps you put me under surveillance for 48 hours and noticed that I'm almost always napping on the couch around 3pm :) I struggle with the whole unknown thing - that really bugs me. Not one specialist can say how it will progress for me, and everyone is different.

My case is apparently mild and was caught early, so my prognosis is good. I have not relapsed or had a major attack in the six years following my diagnosis, but the symptoms wear you down. I have good days, and not so good days.

Even so, I wish I could do more to give back for all the help and support I've received so far, like fellow blogger, MS survivor and motorcycle rider Long Haul Paul who is travelling one million miles for MS, but I’m a terrible public speaker and find it an awkward conversation to have at the best of times. Writing about it is easier. So...

What can you do about it?

http://www.msra.org.au/

 

I've decided to donate part profits from all sales on Daily Bikers Shop to MSRA - who are targeting prevention, better treatment and a cure for MS. It's not a lot of money right now, but it's a start. I feel like that is something tangible I can do. It means that if you purchase anything from me, you'll also be helping fund MS Research through my donations too.

I'll add a Donations page soon so that you will be able to keep tally on donations made. Please share this post with your family and friends or anyone you know who suffers from MS. Let them know they are not alone, and it doesn't mean you'll end up in a wheelchair, there is hope, treatments and of course, riding is the best therapy! Until next time, stay upright people.

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