Unlike 2018, we are taking the weekends off, so this series is an ‘almost’ daily one!
Today, we are privileged to share Emily Ong’s story, one of our newer members who lives in Singapore. Thank you Emily, we greatly appreciate you sharing your very story of being diagnosed with dementia, therefore your personal vulnerability with us all. Many people with dementia find that by sharing with others, they find strength, and give others hope.
Hello, my name is Emily Ong
June 2017 (the exact date I could not remember already) I have the most scariest experience of my life when I asked myself -“What do I need to make French toast?” – when it has always been my family usual breakfast. All that I remembered was bread and the equipment I need was a skillet.
I tried so hard to recall but NOTHING was retrieved.
It was like my brain has a virus attack and the French toast file has been corrupted. The “French Toast” episode marked the beginning of my “new” life that I am gradually learning to understand and manage.
By April 2018, I have done 3 Montreal Cognitive Assessments and the last score was 17/30, numerous MRI scans and one lumbar puncture were done but nothing conclusive, and one FDG-PET scan that showed significantly lower uptake of glucose in the thalamus and the cerebellum region. During this period I was misdiagnosed as having Fatal Familiar Insomnia, a type of Prion disease, and subsequently, as a psychiatric problem (depression?), and then as Alzheimer’s disease.
Each diagnosis brought along so much misery and emotional impact on me and my family. Life was emotionally unbearable, and I cried almost every other day!
I could not stop asking myself, “What’s wrong with me? Am I going crazy? Were my problems real?
At the age of 51, I was finally diagnosed with provisional fronto-temporal dementia. It was a great relief to know that my mind is sound, certainly not having a mental illness but a neurocognitive disorder.
It is a comforting and wonderful feeling to know that your doctor finally heard you and your struggles, rather than generalised your symptoms as mood swings, anxiety disorders and even depression. Though further tests are necessary to confirm which variants, I feel empowered because I can now move on and develop a support plan that include joining support groups to assist me functioning at my optimal level on a daily basis.
Early intervention is something very dear to my heart because that has always been my life mission in my work with special needs. Ever since then I have joined the Alzheimer’s Disease Association (ADA), Singapore and Dementia Alliance International (DAI).
I also set up a personal blog to raise awareness through sharing my journey with dementia and things I learnt about the neurocognitive disorders; participate in two research projects under the National Neuro Institute, Singapore; and going to undergo training to become self-advocate for YOD under “Voices for Hopes” program.
Without the support from my family and the new communities where I find solace in, it is rather unlikely that I can be so emotionally strong and positive as I am now.
My new friends taught me that there’s still life after the diagnosis because life can still be purposeful and beautiful with dementia.
Emily Ong © 2019