My Story 2012 ‘All In’

Arriving in Boston 2012 was smooth, compared to the previous year stuck on the west coast wondering if I’d make Boston in time. I’d trained hard and was over the fear of the 26.2 miles, I had a very pleasing BQ running a sub 4hr marathon, another goal I could tick of the box. Boston was about to teach me some valuable lessons.

Phil had arranged my accommodation it was amazing staying with people I’d never met, and not one uncomfortable moment. Thanks Rod, Brian and Emma your hospitality and energy was fantastic, a very memorable experience. Cheers guys !!!

Catching up with Phil again was neat, mutual grins, a hand shake and a man hug with pats on the back. Phil`s sacrifice of his 2011 Boston marathon to help me run as a guide runner was incredibly special, a childhood dream was reality and why I was running was surreal.

Days leading into the marathon were very relaxing, eating, sleeping and meeting so many wonderful motivating people. I found it pretty funny the BAA were sending e mails to competitors warning them about the weather conditions and offering deferments. If you have any medical condition or heart condition you are advised not to run due to the extreme weather conditions. I put in a lot of effort trying to be accepted into the mobility impaired program, and with the support from home there was no way I wasn’t going to run. I ran my first marathon to qualify for Boston 2011 in extreme heat,  40 degrees plus in Australia. I was stronger than then had more miles under my belt, kept thinking I’d be fine.

The pasta night and the Genzyme breakfast before the marathon were very emotional, watching the 2011 documentary running for rare diseases and Phil`s speech before the marathon. I was fighting back tears and the immense waves of emotions were hard to hide.

At breakfast before the 2011 BM I tried to explain to the Genzyme team how much running for rare diseases had helped changed my life. It all went wrong nerves got the better of me, all I could manage was thanks.

After an amusing bus trip laughing at the ever reliable Phil leaving his watch, gels or energy bars, plus his iPod at home we arrived at Hopkinton. Getting focused it was on !!!

The bus driver had dropped us off at the wrong spot at Hopkinton, bit of an extra walk to the starting area. Not really what I wanted, but this gave me a chance to talk to Dan one of the Genzyme runners. As we were walking along it got the better of me, I had to tell Dan some of my story and how much without knowing it the Genzyme team had helped change my life beyond my wildest expectations.

When I first discovered NORD / Genzyme running for rare diseases in 2007 I was in a bad way. Desperate frightened and fighting for my life I wouldn’t put the thought of running Boston in my mind. I’d learnt to walk again before I was diagnosed now SPS was in full flight, my glimpse of remission was over.

In March 2006 after a fantastic long weekend in the sand dunes on the rugged west coast of Tasmania. Its like the end of the earth nothing but wild ocean between the gigantic dunes and Antarctica. The sky is so clear at night the universe lights up and if your lucky enough to see the southern lights it’s amazing. You can feel the ground rumble from the huge surf breaking, It’s a magic place. That weekend is so memorable for me because that was my introduction to Stiff Person Syndrome (SPS)

My lower back had been sore for a few months I put it down to a bike accident years ago, and riding dune buggies for the weekend. The pain got to the point I better get this looked at, I was in total shock from the Doctors report.

You have a vertical fracture below L5. Prolapsed disc and minor nerve damage between L4 and L5. Scoliosis twist to the left in the thoracic, with an abnormal gap between T10 and T11 that is a trigger point.  Bulging disc at C6 and to top it off, disc degenerative diseases.  I couldn’t believe it.

Having spasms and other SPS symptoms while my back was trying to heal was hard to take.

After spending six in bed many hospital visits and medical trials, most medication only added fuel to SPS`s fire. I was facing my worst fears loosing motor function. My arms and torso would twist uncontrollably, legs would shake violently then feel like they had been removed or full of concrete. Before I was diagnosed I learnt to walk again, once I was diagnosed I thought I better run. Some doctors said I’d never run or play sport again, that wouldn’t compute.

The hypersensitivity with SPS was incredible, light, noise, touch would send my body into raging spasms. These spasms can become so severe they can rupture muscles and fracture bones. I’d experienced both and was scared my back was going to brake again. Fear of leaving the house was very real due to these spasms.

One upside to the hypersensitivity was the fun I’d have with the medical starf. My hearing sensitivity was incredible, the looks on there faces when they worked I could hear them was priceless. Otherwise life was hell, a living nightmare.

The weight loss was frightening I’d gone from 74kg to 43kg in a couple of weeks. The immune side of the illness had kicked in my body was attacking itself. I was so lucky to have wonderful G.P she helped save my life.

I wasn’t just fighting SPS I was fighting to be heard and believed, it was like my pain specialist didn’t believe SPS was a condition. When my arms would twist up he’d say what are you doing that for ? He’d made his decision about me and nothing was going to change that. One doctor said I’d make a good actor, another said he doubt it, when I explained what SPS had done. Some of the things that was said in front of me was unbelievable, it didn’t matter that I had a diagnosis.

The pain specialist was convinced I was seeking medication, his favour phrase was your cycling, your cycling on the medication. I got so fed up with his comment your cycling, one day I replied with a grin. Im not cycling I’m running !!!

He was so convinced he put a patient alert on my medical files, I couldn’t get help from the hospital. My wonderful G.P had left the state, I was so frightened and desperate. It all didn’t make sense to me, the medication I was on was used to treat SPS.

I told them about trying to run !!! I’d ring my neurologist every two weeks asking if I could reduce my medication. Didn’t matter how hard I was fighting SPS, being taken seriously was a major problem.

When I was diagnosed the Neurologist told me the medication would either work or it wouldn’t. He was great, upfront honest, but my pain specialist convinced him I was cycling, because of my GAD antibody results. If the P.S. had researched SPS he would have realised, GAD fluctuation is quite common with SPS.

The neurologist had arranged IVI Intragram blood infusions to help my immune system. I had a bout of pneumonia just before going into oncology in Sept 07. I copied Lance Armstrong and took my bike and rollers into hospital.

I like remembering this !!!

I was in hospital on my birthday for the second year in a row room 22, with half a dozen doctors in the room. I jumped out of bed and told them I was going to play hockey for Tasmania in the Australian championships for age.

The looks they gave me !!! You poor deluded fool.   Two years later almost to the day, I ended up back in the same room 22 with a broken finger playing for Tassie in the Oz championships. It was one of the nicest coincidences I’ve had being back in that room.   Felt like saying to the doctors I told you I could it, it was wonderful walking in there with state gear on !!!

Sept 08 was around the time I discovered the NORD / Genzyme team, I’d thrown my walking stick away and try to run, It was a painful slow shuffle some days all I could do was sleep.   SPS was bending me forward in a hunched position; J.Ks SPS bends her spine backwards.

I’m still amazed what SPS can do from the misfiring signals. It can throw you around like a rag doll or walking like your drunk beyond your means.  Because of my hearing I could hear what people were saying, never took it to heart just made me more determined. I was thrown upwards and across my kitchen one night onto a chair which broke. I ended up on the other side of my kitchen on the floor laughing, amazed at what had just happened. Out shuffling on the beach one day SPS was attacking my heart and lungs.  Spasms bent my torso towards the ground at the same time my right knee flew up and hit me in the nose and dropped me.  Picked myself up half laughing thinking about what had just happened, the hit distracted me but I thought I’d better go home.

Dec 07 when I was told there would be no more IVI Intragram and sent home from oncology, I was so desperate, scared and cried like a baby. I instantly thought is this how I wanted to be remembered by, carrying on instead of fighting on.

I instantly went to the physio department, I couldn’t believe it when I was told there’s no physio program for SPS you’ll have to go home.  In a heavy tone I told the head of the physio department how disappointing it was having SPS.  That you couldn’t be bothered writing a program, you’d rather work on knee and hip replacements.

Christmas eve 07 was the worst night with SPS, kids in bed mum helping look after me. I wasn’t laughing this time when SPS was attacking my coronary system.  I didn’t want to be here, so disgusted with that thought and SPS stopping me from seeing my kids.

I had to dig deeper than I’d ever dug before, had to think of things that meant more to than myself.  Any fool can have courage but to have honour, and go with courage and honour is a life worth living.

It’s an honour to run as a part of the NORD / Genzyme team.

Running for rare diseases gave me hope when all felt lost, running with a rare disease has given me a life full of hope. Fight on never give up !!!

Thank you so much !!! Special thanks to Dan and Phil, two marathons I won’t forget.