Final Steps: The Neurosurgeon, risk and 'the other stuff'

Hi everyone. We're almost there. I'm late with this post - basically life has been in the way :). My surgery also was delayed for 2 weeks because of the requirement to allow 7 weeks between having COVID and surgery. It was a blessing as it has allowed us more time to wrap our heads around what lies before us.

I've posted a clip on my chat with the Neurosurgeon. He outlined the surgery process, and importantly, reinforced the risks of surgery: the risk of bleeding on the brain, serious stroke, death. The risk of complications or further adjustment.

Everyone has their own appetite for risk and factors which contribute to risk. For me and my family, it was a straight forward assessment: DBS represents hope for a better quality of life, a way to add more scope managing this condition while we wait and hope for better interventions and treatments into the future. Yes, there is a risk of serious stroke and death but given my age and my health and the potential benefits, we judged the level of risk was acceptable to us.

I hope you find my clip helpful. Please note - this clip is longer as I felt it important to include as much of the information on risk as I could. I hope to post another clip next week on the 'other stuff' which doesn't fit neatly into these categories but represent my experience as a person living with Young Onset Parkinson's Disease and navigating DBS while working, raising kids, renovating and making plans.

Please note this is my interpretation of the information given to me and with everything, please seek your own advice.

And I'm finally in Melbourne, biding time until my admission this afternoon. In this clip I included info which I hope is helpful, including:

• funding assistance to offset travel costs for people living interstate or regionally. This has been essential for us given we live in Tasmania;

• thinking about work - leave requirements

• practical matters preparing for hospital - decolonising treatment to reduce the risk of infection and COVID requirements

• for us - arrangements for our children and keeping us all on an even keel.

For me, putting plans in place for our children has been the most pressing for my peace of mind. We are eternally grateful for our friends, family and community of Taroona in Tasmania for wrapping your arms around our children. thank you x

I cannot wait now to go in. My dyskinesia is going off, my internal tremours are making life hard. I wake at 4am and can't go back to sleep because of pain and stiffness. I am ready.