Monday, 23 April 2012


I stand in front of you
I'll take the force of the blow
Protection by Massive Attack

I've been a bit slack with my blog posting of late so there is much to tell you. First, an update on my health...
MS-wise I have been really great. I have re-started the monthly testing of my B cells for the next round of Rituximab so I'm preparing myself for the mental and physical challenge of the impending chemo. Thankfully it's nowhere near as intensive as what a cancer patient would have to endure so I'm reminding myself of that when I start to freak out about it. The biggest thing I worry about is the odds of contracting PML (progressive multifocal leukoencephalopathy). PML is caused by the JC virus (which most people have) that is kept under control by the immune system. Immunosuppressive drugs like Rituximab prevent the immune system from controlling the virus and it can develop into something I would describe as MS on 'roids. Basically the myelin that protects nerves in your brain rapidly deteriorates and this can lead to severe brain damage and death. The odds are small but it's always in the back of my mind. Leading up to my infusions it becomes this irrational fear that I find hard to control. I try to focus on the fact I have access to this incredible drug, and that it's the only thing that arrested the aggressive onset of MS I went through. I just need to MAN-UP!

I have recently become aware that the lower part of both of my calves don't have 'normal' feeling. I love a good soak in a hot bath, but it's not a good idea to stay in for too long for those folks with MS. As we are getting into the cooler months (hallelujah!) a hot bath is becoming more enticing at the end of the day. In the olden-days (circa 2010) I could stay in a hot tub indefinitely as long as I had a good book and a glass of wine! The last couple of times, however, I have gotten intense tingling and discomfort in my lower legs and they seem to have a mind of their own until my body temperature drops. It's hard to describe but when I connect the dots I can see that this may be the reason I have found jogging such a challenge in the last couple of years. I saw my Neuro, Walshie a couple of weeks ago and he is convinced I had a relapse in October last year and that the lesions found in my spinal column were newbies. Bugger. Maybe this is linked to my crazy legs...maybe it's not. Ahh, the beautiful uncertainty that is MS. Needless to say, I have found these recent events to be somewhat distressing. My partner, Wolfgang, says I have a distinct pattern of going into major funks after seeing Walshie. Any weird twinges or tingles after seeing him sends me into a panic and I become the antithesis of happy-go-lucky-little-ray-of-sunshine. I was nearly over this funk until I had a bath last night. Boo. But if I am truly fair and reasonable, the fact is that my health hasn't been this good since well before my diagnosis. So I can't have long hot baths or run 10kms anymore. Meh. But I can run/walk 5 kms (when it's cool enough)! I've started losing all the 'sick' weight I gained and I've been learning a lot about nutrition and MS. I've also started planning a fundraising event for MS research in my local area next month. I looked in the mirror this morning and said, 'you are rocking the shit out of everything right now, don't be a bloody sook!' BAM. Happy KPow is back, baby!

My brilliant Chiropractor, Lisa, recently sent me the link to a TEDx talk about protecting the mitochondria in your brain and a lightbulb exploded in my fuddled little mind.  Since then I have tripled my intake of fruit and vegies and I feel fantastic for it. For those with MS this video is a must. For everyone else this is a 'should'. You have to invest 17 minutes in it but the speaker's story is quite incredible and it all makes perfect sense, I think, so please share it with others. Dr Terry Wahls - Minding Your Mitochondria:

My choice of song today is not meant to be esoteric! When thinking about 'minding your mitochondria' this song just popped into my head immediately. We all need a bit of protection (from stuff life throws at you) from time to time. Not talking prophylactics, people! Although, that is important. Ahem. Massive Attack has always been a bit hit-and-miss for my taste, but they have a few tunes that I dig. This song is one of them:

I will post more fundraising details soon but until then here is a link to my page where you can donate as much or as little as you choose. Thanks for reading x