Our Story

When people ask me when my father's Parkinson's began, I have to be honest: I do not know the exact date. Our family remembers it as "around 2012", and even that is a reconstruction made years later, once we understood what we had been seeing.

A hand that would not stay still

The first thing we noticed was a shaking in his hand, more on the left side. It did not arrive suddenly. It crept in. At first it was easy to explain away — tiredness, age, stress, a cold morning. It came and went, and because it was gradual, none of us treated it as the start of anything.

I think many families live in this stage for a long time. You notice something, you mention it once at dinner, and then life continues. Nobody wants to be the person who turns a small tremor into a frightening word.

Why I am writing the uncertainty down

On this site I will always mark what we do not know. Memory is unreliable, and in a chronic illness the early years are often the blurriest. I would rather leave a gap honestly marked "unknown" than fill it with a confident date that might mislead someone reading their own family's story into ours.

If you are reading this because someone you love has a new tremor, please do not use our story to diagnose them. Tremor has many causes. What I wish we had done sooner is simple: see a qualified doctor, and keep a short written note of what you observe and when.

What I would tell my younger self

• Write down the date you first notice a change, even if it seems small.
• Note which side of the body is affected and in what situations.
• Take a short video if the person is comfortable with it, for the doctor only.
• Do not panic, and do not dismiss it either.

That small left-hand tremor turned out to be the first chapter of a journey that has now lasted more than a decade.

In 2015 my father was diagnosed with Parkinson's disease at Square Hospital in Dhaka. I remember the diagnosis less as a single moment and more as a shift in how our family talked. The tremor stopped being "just a shake" and became something with a name, a future, and a long list of questions.

The relief and weight of a name

There is a strange relief in a diagnosis. For years we had been guessing. Now there was an explanation. But the name also carried weight. Parkinson's is a progressive neurological condition, and even before we understood the details, we understood that word: progressive.

Around January 2016: starting medication

Our family recalls Parkinson's medication beginning around January 2016. We do not have reliable records of exactly which medicine or dose he started on. What our family remembers is that the shaking initially stopped. Father separately recalls starting Syndopa 125 during treatment in India before ~2021, but its exact start date is unknown; we cannot say that Syndopa began in January 2016.

That early period felt almost like a reprieve. Daily life became easier. It is important for other families to know that this kind of early response is something many people with Parkinson's describe — and that it does not mean the condition has gone away.

What we did not yet understand

We did not yet know about OFF periods, wearing-off, or how much the timing of each dose would one day control our days. We did not know that we would eventually be watching the clock as closely as we watched him.

Looking back, I wish we had started a simple notebook from day one: medicine name, dose, time, and how he felt a few hours later. Those notes would have been invaluable years later, when we sat in front of new doctors trying to reconstruct his history from memory.

Between 2016 and 2020, my father consulted doctors in Dhaka, Rajshahi and India. Over those years his condition progressively worsened. Our record of the medicines and doses remains incomplete, but father has clarified one part of that history.

Syndopa 125 in India — before ~2021

Father says he started Syndopa 125, obtained during treatment in India, before he first consulted Prof. Dr. Md. Amirul Haque at Bangladesh Specialized Hospital around 2021. This is a family-reported treatment history, not a dated prescription record. The exact India visit and Syndopa start dates, tablets per dose and dose frequency are unknown.

Our family recalls the earliest Parkinson's medication starting around January 2016, but we do not know whether Syndopa was that first medicine. We keep these two facts separate. Syndopa 125, Codopa 275 mg and Stalevo 125 mg are distinct reported brands/formulations; we do not conflate them or assume a known changeover between them.

Why this page has gaps

It would be easy to write something plausible here. I will not. If I invented a medication list for these years, someone might compare it with their own parent's prescription and draw conclusions. On this site, an unknown stays unknown.

What progression felt like from the outside

What I can describe is how it felt as a family. The medication that once seemed to stop the shaking no longer felt like a complete answer. Movement became harder. Each new consultation brought hope, travel, waiting rooms, and then the slow realisation that this would be a long road rather than a single fix.

Travelling between cities and countries for care is exhausting for a person with Parkinson's, and for the people beside them. Every journey involves planning around energy, mobility and medicine times.

A lesson about records

• Keep copies of every prescription, even old ones.
• Photograph medicine packs so brand, strength and composition are clear.
• Bring a one-page summary of history to every new doctor.

This is part of why I started this project: so that our own record, from here on, is careful, dated and honest.

My father first consulted Prof. Dr. Md. Amirul Haque at Bangladesh Specialized Hospital around 2021. The year is approximate. Father says he had already started Syndopa 125, obtained during treatment in India, before this consultation.

Keeping the earlier treatment separate

The exact date Syndopa 125 started in India and its dose frequency are unknown. The individual ingredient strengths also remain to be verified against the original pack. We do not assign it a three-times-daily schedule, a start date at this consultation, or the January 2016 medication start date.

What is documented later

We do not have a confirmed medicine schedule for the first consultation around 2021. A prescription dated 25 March 2023 documents Stalevo 125 mg three times daily and Perkirol 2 mg morning and night. A separate prescription dated 21 August 2023 documents Codopa 275 mg and Perkirol 2 mg, each morning, afternoon and night.

Syndopa 125, Codopa 275 mg and Stalevo 125 mg are distinct reported brands/formulations. The prescription dates document what was prescribed, not confirmed dates taken. Transitions, overlap, duration and response remain unknown. None of these historical records is a current regimen.

Other health events in these years

During this broader period my father also went through unrelated procedures: prostate and gallbladder-related surgery at Evercare in 2022, where our family felt the outcome was disappointing, and later eye laser treatment on one eye in 2024 and the other in 2025. I mention these only as personal history. They were not Parkinson's treatments, but every hospital stay affects energy, routine and recovery for someone already living with a movement disorder.

A family-provided prescription dated 25 March 2023 from Prof. Dr. Md. Amirul Haque at Bangladesh Specialized Hospital adds an important correction to my father's Parkinson's history. This is a historical prescription, not his current regimen.

25 March 2023 — verified historical prescription

• Stalevo 125 mg (carbidopa + levodopa + entacapone): one tablet in the morning, one at noon and one at night (1+1+1).
• Perkirol 2 mg (ropinirole): one tablet in the morning and one at night, with none at noon (1+0+1).

21 August 2023 — second verified historical prescription

A second family-uploaded prescription from Prof. Dr. Md. Amirul Haque at Bangladesh Specialized Hospital is dated 21 August 2023. It documents a different Parkinson's prescription:

• Codopa 275 mg (carbidopa + levodopa): one tablet in the morning, one in the afternoon and one at night (1+1+1). The individual ingredient strengths have not been verified here.
• Perkirol 2 mg (ropinirole): one tablet in the morning, one in the afternoon and one at night (1+1+1).

March's document listed Stalevo 125 mg three times daily and Perkirol twice daily. August's document lists Codopa 275 mg and Perkirol, both three times daily. These are two separate dated historical records, not one unchanged schedule and not our current regimen.

What this changes in our account

Father reports starting Syndopa 125 during treatment in India before his first Amirul Haque consultation around 2021. Its start date and dose frequency are unknown. The earliest medication began around Jan 2016, but that is not a confirmed Syndopa start date. The March and August 2023 prescriptions are separate dated sources; we must not present an unchanged schedule through these years.

Syndopa 125, Codopa 275 mg and Stalevo 125 mg are distinct reported brands/formulations. We do not conflate them or claim one replaced another on a known date.

Documented prescription date is not a confirmed date taken

25 March 2023 and 21 August 2023 are the exact dates on the prescriptions. They do not confirm when my father started or stopped taking either schedule, whether every prescribed dose was taken, or when any transition occurred. Changeover dates, overlap, duration and response remain unknown. The documents show what was prescribed, not a confirmed record of what was taken each day.

Keeping the record anonymous

We are sharing only the relevant historical Parkinson's medicine details. Neither scan, nor the patient's name, address, identifiers or birth details, is published or embedded. Medicines for other conditions are not included in our public Parkinson's-only list.

These recorded doses describe two past prescriptions for one person. They are not instructions for another family, and no medicine should be started, stopped or changed without the treating doctor.

In 2024 we sought care in Abu Dhabi with Dr. Shivam Om Mittal. The prescription changed to Oridopa 25/100 (carbidopa 25 mg + levodopa 100 mg): two tablets, five times daily.

Learning a new vocabulary

This was the year the words "ON" and "OFF" became part of our daily language. ON describes the times when medicine is working and movement is easier. OFF describes the times when it is not — when stiffness, slowness or immobility return.

Oridopa helped initially. But OFF periods persisted. Some days the difference between an ON hour and an OFF hour was the difference between walking across a room and needing someone to hold him up.

The clock becomes the centre of the house

With five doses a day, the clock quietly took over our home. Meals, visits, prayers, rest — everything started to be arranged around when the next dose was due and whether the last one had "kicked in".

What helped us as caregivers

• Keeping a simple written log of dose times and how he felt.
• Being honest with the doctor about failed doses rather than saying "he's fine".
• Accepting that some days are worse without assuming it is anyone's fault.

We did not know then that the hardest months were still ahead.

April and May 2025 were the most severe period we had faced. My father was unable to sleep properly, unable to lie down comfortably, and unable to stand or walk without assistance.

Nights

The nights were the hardest. Sleep would not come, and lying down did not bring comfort. Stiffness and pulling in his back, arms and legs made it hard to find any position he could rest in. Frequent urination — often many times through the night, in small interrupted amounts — broke up whatever rest there was.

Days

During the day, getting from a chair to standing could require one or two people. Walking needed someone beside him every step. Constipation, numbness and dizziness added to the daily burden. There were moments of blood pressure swinging low and moments when it ran high.

The emotional side

I want to write honestly about how this feels for a family, because most medical writing leaves it out. There is fear. There is exhaustion. There is guilt when you are too tired to be patient. And there is a deep love that keeps you getting up at 3 AM again.

Deciding to seek another opinion

It was in this period that we decided to travel again, this time to Bangkok, to seek further specialist care. The next chapter tells that story.

If you are in a period like this with your own family member, please speak to their neurologist urgently. Sudden worsening deserves medical review, not waiting.

In May and June 2025 we travelled to Bumrungrad Hospital in Bangkok, where my father was seen by Dr. Amputch Karukote. We stayed about a month, with multiple consultations and regular physiotherapy.

Adding Madopar HBS 125

The neurologist added Madopar HBS 125 (levodopa 100 mg + benserazide 25 mg, modified-release) to his Oridopa 25/100. Over the stay, several doctor-supervised combinations were tried.

Our family felt that one specific combination of packages worked better for him. I want to be careful: this is our experience, not evidence that any brand is superior to another. Responses to Parkinson's medicine are individual, and any change must be made by the treating doctor.

Physiotherapy

Regular physiotherapy was part of the Bangkok stay. For us it was a reminder that Parkinson's care is not only tablets. Movement, posture, and safe ways of standing and turning matter enormously in daily life.

What changed

• Sleep improved to around three to four hours — a real difference after the spring.
• A late-afternoon OFF period often remained, roughly from 3–4 PM until 8–9 PM.
• The benefit of a dose (ON time) often lasted around two to three hours.

Coming home

After returning to Dhaka he continued Oridopa with Madopar HBS. That combination remained his regimen until 20 October 2026.

Before the most recent change, my father's Parkinson's schedule (as of 19 October 2026) looked like this:

• 8:00 AM — Oridopa 25/100 two tablets + Madopar HBS 125 one
• 12:00 PM — Oridopa 25/100 two tablets + Madopar HBS 125 one
• 4:00 PM — Oridopa 25/100 two tablets
• 8:00 PM — Oridopa 25/100 two tablets
• 11–11:30 PM — Oridopa 25/100 two tablets + Madopar HBS 125 one

Sometimes, when the medicine seemed ineffective, he took an extra half or one Madopar Dispersible 125, with no fixed timing.

When relief came

Our family's observations of when relief usually came after each dose:

• After 8 AM: roughly 9–11 AM
• After noon: roughly 1 PM to 3:30–4 PM
• After 4 PM: often ineffective
• After 8 PM: roughly 9–11:30 PM
• After the late dose: roughly 12:30–1 AM

Dose failures

There were many dose failures — times when a dose was taken and the expected relief never really arrived. These are the moments that wear a family down: you wait, you watch, and nothing changes.

Total scheduled levodopa

Counting only the scheduled doses, this regimen added up to about 1,300 mg of levodopa per day (ten Oridopa tablets at 100 mg levodopa each, plus three Madopar HBS at 100 mg levodopa each). The "125" on Madopar labels includes the benserazide component, which is why it is not 125 mg of levodopa. Occasional extra dispersible tablets are not included in that figure.

On 20 October 2026, my father's regimen changed during a return visit to Dr. Shivam Om Mittal at Cleveland Clinic Abu Dhabi — the neurologist who first saw him in 2024. This visit and the change are family-reported. Madopar HBS 125 was replaced with Madopar Dispersible 125, one tablet every four hours, five times daily, alongside Oridopa 25/100 two tablets five times daily. The new regimen started at around 4 PM on 20 October. The exact clock time of the fifth daily dose is not yet verified.

The numbers

Counting scheduled doses only, levodopa went from about 1,300 mg/day to about 1,500 mg/day. Each Oridopa 25/100 and each Madopar 125 tablet contains 100 mg of levodopa; the remaining amount on the Madopar label is benserazide.

What the family observed

In the early hours, our family reported some improvement in mobility. But we also saw things that worried us:

• Prolonged sleeplessness overnight.
• A morning OFF period on 21 October when he needed assistance.
• Intermittent chewing-like movements.
• Recurrent unclear speech, which seemed worse overnight.

These could possibly relate to dyskinesia, but nothing has been diagnosed. I am recording them as observations only and reporting them to his doctor.

A careful note on timing

We noted that he seemed ON from around noon on 20 October until around 4 AM on 21 October. That window began four hours before the medication change. It would be wrong to attribute that whole period to the new medicine, and I will not do so.

Blood pressure on the same night

On 20–21 October a blood pressure reading of around 90 systolic was reported, rising to around 125 about 30 minutes later. We do not have the diastolic values or his position at the time. I record this as part of his clinical history, not as a Parkinson's medication effect.

A safety reminder

Any new or worsening slurred speech or facial drooping can be a medical emergency. Families should seek urgent medical help immediately rather than waiting to see whether it is a medication effect. We are discussing every one of these observations with his neurologist.