By BRENDA FISHER
It can be a rare and wonderful thing to find your soul mate, I consider myself one of the lucky ones.
In 1985 at the age of 20, I did just that. Mark was a surfer and played State League Water Polo. We had one of those immediate connections and were married the following year. Three children later and in December of 1994, Mark finally got his dream job and shortly after we moved our family to Sunbury where Mark began his new career at Tullamarine Airport. It seemed life was just getting better and better for us, our goals and dreams were getting bigger and we could see life was just going to be amazing.
Then the turbulence that was going to become the centre of our lives began, after going to hospital for tests due to falls and constant unusual fatigue Mark was given the diagnosis of Multiple Sclerosis. Actually what our doctor said was “Some of the tests came back with inconsistent results but we are happy to call it Multiple sclerosis!”
I’m sorry, but I was certainly not happy that you called it MS!
This was the 17th April 1996, 7 days before Marks 34th birthday; our children were then 7, 4 and 2 years old. All of our sudden our dreams and goals seemed so much further away.
Mark and I are both independent people so life continued as normally as could be, Mark was constantly trying new drugs, some were pills and some injection which I helped with. We also became increasingly involved in the MS community and decided to become Ambassadors for MS Australia (ACT/NSW/VIC) and Peer Support volunteers. Our role was to talk to people affected by MS and share our experiences and coping mechanisms.
During this time it became all too obvious that Mark didn’t respond to any treatment he tried. What’s more, he wasn’t experiencing the periodic ‘attacks’ that so many others with MS experience. That’s when we found out Mark had an aggressive form of MS called Progressive MS and we were told that there was nothing – not one drug on the market for Progressive MS.
That changed for us in December of 2012 when we found out about a drug called Fampyra. Fampyra had been available for a short while and we learnt about it when it was rejected by the Federal Government for inclusion on the PBS. After investigating the treatment I found it could assist with symptoms of all forms of MS, including Progressive MS, specifically mobility impairment.