About Me

Hi there...  My name is Natalie Pacaud, I'm 42 years old and live in Brisbane Queensland Australia, a beautiful place to live.  I’m married to an amazing man, Paul, who is my rock and without him I don’t know what I would do.  We have two gorgeous children, Isabelle is 13 and Sebastien is 10, they are the light of my life.  I am embarking on this journey of a lifetime so that I can enjoy life to the fullest with my beautiful family.

My Mum & Dad are also amazing support to me and would drop anything to help me and do anything to make me better.  As a mother I can understand it must be so hard not to be able to fix your child.

My brother and his family are also always there for us and I am so grateful that we have a close bond.  Our kids are the best of friends and just love to spend time together.

I also have amazing friends and extended family for which I am blessed and know that I will have their support during this tough road ahead.

I’ve said to Paul in the past, you know I think I’ve got MS because if I didn’t and I was healthy our life would just be too perfect and maybe that wouldn’t be fair....  The things you think sometimes..


My MS Story

In October 2004, when I  was 32 years old, we were very happy and living in Tannum Sands.  Paul and I had just celebrated our 4th Wedding Anniversary, Isabelle was 3 years old and Sebastien just 6 months old.  Paul had also just had a job promotion and was about to embark on a huge challenge and I was up to the challenge of supporting him.

In mid  October 2004 I believe I had my first symptom that I can remember.  My left eye went blurry, came with a bad headache and I couldn’t see clearly out of it for some time.  We believe this was what is called Optic Neuritis, a common first episode of MS.  It came good and I didn’t really think much more of it and being a mum of young children I just got on with things.

In early November 2004 my left calf felt strange, it was numb and tingly. Again, as a mum of young kids I think we often put ourselves last and just keep going as we have to look after these little people who are completely and utterly dependent upon us.  I put up with it for a few days but it kept on moving up my leg to my thigh and it just felt wrong so I thought I had better get it checked out.  I booked in for a Saturday appointment so Paul was home and we all drove to town together to the GP.  I think I wanted Paul to come with me because I’d seen an ad on tv where simple numbness could lead to stroke – obviously crazy and a long shot for a 32 year old woman I thought!

Upon telling my GP my symptoms, she asks if I had anything else happen and I remembered the blurry eye situation and she says something along the lines of “I don’t want to scare you but I want to send you for an MRI as I suspect it could be Multiple Sclerosis”.  We were of course taken aback, I mean who goes to the GP and gets that response!  We leave the doctors and I tell Paul (in my true form as my family and friends will attest) – that I still need to go “shopping” – since we are in town!

Paul was quite upset but I stayed strong until I got on the internet – of course not always a good thing – and ended up with a migrane and very upset..  My only experience with MS was a lady who lived next door to us when I was about 8 years old, she was permanently in a wheelchair and was struggling to look after her young children.

We didn’t want to share this suspicion with anyone until we had it confirmed but I did want to talk to my Mum and Dad.  They were in Melbourne at the time staying with my brother and his wife getting ready to celebrate my nieces 1st birthday on the Sunday.  I told Paul I wasn’t going to spoil that and waited till Monday morning to call them.  It was a long wait as I’m close to my parents and struggled not being able to tell them, of course they were shocked and wanted to come straight home to be with us.

I think I was booked in for the MRI on the Tuesday and by the time we got there the whole left side of my body was numb.  It’s a bizarre feeling, to say the least!  It’s a complete divide of your body, half your head is numb, half your face and tongue.

The results came in and by the end of the week my GP has sent my results to a Neurologist, who confirmed the diagnosis and I had an appointment to go and see him.  I now had a Neurologist, not something that I expected to have in my vocabulary!

We visited the Neurologist in Brisbane who told us the best thing for me was to go on a medication called "Betaferon".  It is a disease modifying drug (DMD) which supresses the immune system.  The idea is that is reduces the amount of relapses that occur although it doesn't alleviate any symptoms when you have one, there is really nothing for that except steroids if needed.  This would be an injection I would have to have every second day for the foreseeable future.

For almost 8 years I took this medication.  I never fully recovered from the numbness on my left leg and I still had relapses from time to time but I recovered from most.  Extreme fatigue would come and go and at times I would sleep/rest a lot of the day and only do what I had to keep the house going.

In 2012 I had started the Michelle Bridges 12 week challenge.  I lost some weight and was running which was no mean feet with one leg numb and the other one heavy, not far but I was doing it..  Then gradually the right leg starting getting heavier and heavier and the running had to stop. 

I was changed to a medication called "Tysabri", another DMD but this one a monthly infusion in hospital.  It's success rate is higher than Betaferon although if you are JC+ (a virus that around 50% of the population have) you can develop a PML (possible fatal brain disease).  I was JC- but you can turn JC+ at anytime without knowing.  Not a great position to be in but neither is MS so I gave it a go.  It didn't seem to do any good as I continued to decline and now I can't really walk very far at all.

I could go into a lot more detail but I think I'll now just cut to the chase.  In March 2014 - I'm feeling pretty low and I've finally come to terms (after much coaxing from Paul) that I should really go and talk to a psychologist to help me come to terms with where I am at.  I guess I had accepted that I had MS but hadn't accepted life as a semi-disabled person who was gradually getting worse.

I made an appointment but in the meantime I see this add on TV for 60 minutes about this lady who has a "disease" and has been to Russia for revolutionary treatment.  The first add was like a preview and didn't say what she had but for some reason it could our attention.  I then saw an extended add which said she had MS and I rang Paul at work to tell him that we've got to watch this story.  By the time the 60 minutes story ran I had found her name, Kristy Cruise, found her website, Moving Mountains, and researched HSCT.  After we watched 60 minutes, I read her e-book and finally found the Hope we were looking for.  By the end of that week I had managed to get my records from my Neurologist, send them to Dr Fedorenko in Moscow and he accepted me for treatment.  Boy how that has changed our life!! 

We will be eternally grateful to Kristy Cruise for allowing us to see her journey and pave the way for us to go to Moscow and give us the Hope we so needed.


A bit of extra stuff to add...
Now I'm not sure I’m a writer but I have lots of thoughts sometimes about writing and the blogging thing about this journey.  Biggest problem is the thoughts usually come to me when I’m not able to write or type – in the shower, driving the car, trying to sleep and hanging out the washing ...  Actually the best ones come I think when I’m driving which is a lot considering I drive between the kids schools every day and sometimes traffic of course makes the trip longer. 

Driving is probably also when I often get the saddest as well.  I used to get sad and cry a lot driving in the afternoon because it was just so dam hard to keep going and I couldn’t figure out how I was going to keep this up for the next 8 years.  See I just figured if I can just get through the next 8 years then I can crash and if I have to be in a wheelchair then that would be okay if there was no other choice but I have to get through the next 8 years.  Strange number – some of you may have worked it out. 

When I was young, what did I want to be when I grow up, well I would say a number of things with probably teacher being the main one (which didn’t happen as life happened and I ended up with a great job in the aluminium industry – yes bit of a deviation from being a teacher) but what I always wanted to be was a mum..  I was going to have a boy and a girl.  Well I got to be a mum and had a beautiful baby girl, Isabelle, followed 2 years and 8 months later by a beautiful boy, Sebastien..  Isabelle is now 13 and Sebastien is 10 so the next 8 years is to get them through school..  I have to be well enough to do everything in my power to bring them up to be strong, capable and happy adults.  That was and is my purpose – so that’s what the next 8 years is about!!

I’m really not a writer but a babbler.  I am a fast typist though so that is probably not a great combination with a babbler as I can type as fast as my thoughts come.  Just bear with me though, I'm sure some of it may be worth reading...