Beyond Parkinson's · A caregiver's journal
Living with Parkinson’s, one day at a time.
My anonymous father's real medication history, ON/OFF periods and our experiences as caregivers — an honest record of the difficult days and the moments in between.
One family's experience. Never a prescription for yours.
01 / Our family story
Behind every schedule,
there is a family.
For years we pieced together my father's care from memory, scattered prescriptions and tired conversations in waiting rooms. We wished someone had shown us what the road could look like.
This is my attempt: dated, careful, and honest about what I don't know. From the first tremor to the difficult OFF hours, I write as his child and caregiver.
Start with our story
02 / The treatment journey
The chapters that shaped our care.
2015
Diagnosis in Dhaka
Diagnosed at Square Hospital. Treatment began around January 2016.
2021–23
Care in Bangladesh
Consultation around 2021; two distinct prescriptions in 2023. Dates taken unknown.
2025
Care in Bangkok
Madopar HBS joined Oridopa, alongside physiotherapy.
2026
A change, then observations
20 October: Dispersible replaced HBS; Oridopa continued.
Latest from our journey
21 Oct 2026
Not a diagnosis or confirmed medicine effect.
A new Parkinson’s medication schedule. A new chapter of observations.
Madopar Dispersible replaced Madopar HBS while Oridopa continued. I noticed early improved movement, but also prolonged sleeplessness, recurrent unclear speech that seemed worse that night, and morning OFF requiring assistance.
These are concerns for medical evaluation, not proof of a treatment outcome. The reported ON stretch began before the change. New or worsening speech difficulty, facial drooping or sudden weakness needs urgent medical help.
Read the full treatment-change chapter04 / A closer look
Care, in the details.
The records I return to when trying to understand my father's changing days.
Parkinson's medicines
The medicines in my father's history, with verified prescriptions kept separate from what I remember.
Explore the medicine historyThe hours between doses
ON and OFF periods, difficult nights and gaps in our record. Unknown hours remain unknown.
Read the motor diaryThe people behind the care
The doctors and hospitals we visited, listed clearly and separately from the treatment history.
See doctors & hospitals05 / Latest from the journal
Reading for the road ahead.
Sourced caregiver guides, separate from our family's story.
21 October 2026 · 3 min read
Parkinson’s ON and OFF Periods: A Caregiver’s Guide to a Symptom Diary
What ON and OFF mean, which changes to record, and how to bring a clearer symptom diary to the neurologist without guessing or changing medication.
Read the guide
21 October 2026 · 3 min read
Parkinson’s Caregiver Stress: Asking for Support Without Guilt
Recognising caregiver strain, making specific requests for help, and finding support while respecting the person with Parkinson’s and your own limits.
Read the guide
21 October 2026 · 3 min read
Parkinson’s Sleep Problems: What Caregivers Can Notice at Night
Insomnia, nighttime waking, dream enactment and daytime sleepiness: useful observations, safety concerns and questions to discuss with the care team.
Read the guide