The story of Craig
My name is Craig Smith and i live in Adelaide South Australia. On February 12th 2013 at the age of 83 my Dad Jeff passed away from the debilitating disease Progressive Supranuclear Palsy.
PSP is rare degenerative brain disorder that affects movement, control of walking (gait) and balance, speech, swallowing, vision, mood and behavior, and thinking. The disease results from damage to nerve cells in the brain. The disorder’s long name indicates that the disease worsens (progressive) and causes weakness (palsy) by damaging certain parts of the brain above nerve cell clusters called nuclei (supranuclear). These nuclei particularly control eye movements. One of the classic signs of the disease is an inability to aim and move the eyes properly, which individuals may experience as blurring of vision.
Estimates vary, but only about three to six in every 100,000 people worldwide have psp
My Dad was born in the UK and emigrated to Australia with my Mum Sheila in the late 50s. He was a bricklayer by trade and also a volunteer at a local sporting club for 38 years. In 2008 he had to give up volunteering due to experiencing very sore legs. His symptoms got worse over the next couple of years and he was first diagnosed and treated for Parkinsons Disease in 2010. It was at this time we found out that his Sister Janice in the UK unfortunately had Parkinsons as well. Showing no improvement after taking the medication he was then diagnosed as having PSP mid 2011. This is a degenerative disease. There is NO known cause or cure. My Beautiful Mum looked after him as long as she could at home then late 2011 he had to go into Canterbury Close Nursing Home when he needed 24hr care. And he received Excellent care from ALL the staff there. Mum visited him 4-5 days a week. Dad stayed strong till the end. Knowing he had PSP he donated his body to the Adelaide University hoping that in some small way he would be contributing towards an eventual CURE. My Dad is a LEGEND and it was Heartbreaking watching him go through this for all of us.
Looking for a way to communicate with my Dad, 12 days before he passed i took my lego with me on a visit and just like when i was little my Dad and i built a lego BBQ together. It turned out to be one of the best times i spent with him during his illness. I still have the BBQ and will treasure it forever.
In Adelaide we have a 12km Fun Run called The City-Bay and when i was 18 (32 years ago) Dad encouraged me to take part. Dad loved walking until he could no longer so In his honour and to help raise awareness about PSP, between April 2014 and September 2015 i walked the City-Bay 400 times raising $1400. On the last day of my walk i carried my Dads ashes in the 2015 City-Bay Fun Run. It was one of the proudest days of my life. And i know my Dad would be very proud of me.