Page created by: Sarah Swart

First of all, let me introduce myself. I am Sarah Swart, Ken's primary sole caregiver for 137 months! At first his parkinsons was manageable and not that much changed in our lives. Ken was 70 and I was 63. We still traveled, ate out, visited museums and venues. My Mum, Betty Lane, who died in 2008 also had parkinsons written on her death certificate.

It was devastating to watch Ken's gradual at first, then faster and faster decline. In May 2020 he started having falls and fell 4 times in that month, every single Friday. I was his total 24/7 caregiver by then. And his advocate. And his dresser, feeder, and everything else. He had 15 falls in 12 months, a broken sacrum, and a wounded spirit. I was also his wife. He died in 2022.

I joined the ppmi program (Parkinsons Progressive Markers Initiative) sponsored by the MJ Fox Foundation. A research program which has FINALLY discover a biomarker. I am in the group of first generation relatives of parkinsons (my Mum) but feel as though I am in it as a legacy to Ken. If you are interested they are still recruiting volunteers. Just Google ppmi to find it.

I WANT THIS DISEASE ERADICATED!