I am a 60 year old Canberra man and I think I am living with a condition called CTE. I became aware of this possibility after watching the CTE relevant series called ‘Plum’ on the ABC last year. Until then, life carried on, as it does but in recent years, I had been experiencing behavioural and cognitive occurrences that seemed strange to me and certainly did not match my intent.
I am not a former star footballer like the character in ‘Plum’ but I did play AFL from age 6 to 16 and then Rugby Union from age 17 until 30. A conservative estimate of concussions received that time would be around 20 though maybe much higher? I was a diagnosed and medicated epileptic from age 11 until my last seizure at 17 and I was probably not meant to play contact sport; but I did.
Finding CLF whilst looking to book a neurologist appointment last year has been a blessing. I feel supported and informed and am naturally inclined to support others also. I like passing on solid information to others as I do as a science communicator at Questacon; the National Science and Technology Museum. I also practice Citizen science (which can apply to the fields of medicine and health) and am a published author and promoter of this culture. I look forward to advancements in regard to diagnosing CTE whilst sufferers are still alive and have taken steps to donate my brain to the sport and veteran brain bank in Sydney. I am honoured to be part of the national advisory board and hope to serve it well.
Living with suspected CTE can be difficult, but CTE is not a death sentence. Our library of CTE resources and support is built to help patients and caregivers maintain hope.
Although we can’t yet accurately diagnose CTE in living people, a specialist can help treat the symptoms presenting the most challenges.