Living and working with Parkinson’s is a mission. A mission to overcome the challenges and stumbling blocks on the way, a mission to overcome the frustrations and worries, a mission to face the reality and accept the truth, a mission to forget about the dreams you dreamt about the career and go with the flow, a mission to empower yourself and remain positive moreover a mission to find joy and live for the moment, take one day at a time..,…
Parkinson’s disease is a non curable progressive neurological condition. It’s also known as the fastest growing neurological condition in the world. People with Parkinson’s don’t have enough of the chemical dopamine because some of the nerve cells that make it have stopped working. Without dopamine people can find their movement is affected and it takes longer to do things.
Medications are there to control the symptoms or delay the progression of the condition including surgical intervention like Deep Brain Stimulation. At the beginning stage of the disease the patient may be on one or two tablets but as the symptoms get worse or as the condition progresses the dose and frequency of the medication changes which will have a big impact on the daily living of a Parkinson’s patient. An impact on quality of life, an impact on daily routines and an impact on some habits which may be painful for some , some take it as a challenge but some you know unfortunately sink in the darkness and struggle to cope. Did you ever try to know the reality of the medication regime a Parkinson’s patient faces and struggles on the route?
When I have diagnosed with Parkinson’s at the age of 41 in 2019 , I had to take only one tablet (Ropinirole PR 2mg – a Dopamine Agonist – which mimic the way dopamine works which can reduce symptoms ) , after 2 weeks it’s increased to 4 mg. While reading the leaflet about the side effects which made me scared (impulsive compulsive behaviour, hypersexuality, hallucinations and delusions etc etc) made me worry to death , should I continue to take or not). After 6 months one more medicine was added- Rasagiline 1mg tablets ( which helps the nerve cells make better use of the dopamine they have ) once a day apparently I need to be careful about taking cold remedies.
Levodopa preparations like Madopar (Co – beneldopa) ,Sinemet(Co – careldopa) are the gold standard treatment for Parkinson’s . Levodopa is a chemical building block that the body converts into dopamine in the brain. When taking Levodopa, which boosts the supply, the nerve cells can make more dopamine. But I had Madopar phobia, I was worried about side effects like wearing off ( your drug wear off before you take the next dose and you’re stiff and slow), dyskinesia (involuntary muscle movements include twitches, jerks, twisting or writhing movements), etc etc. Each time I go to the Neurologist “ I pray no Madopar yet please “. Eventually they have increased my Ropinirole from 4 mg to 8 mg. I was happy about that because “still no Madopar!”. You can’t escape for a long time especially when you are running with a progressive condition, can you? As I feared after 4 years of my diagnosis, in the 2024 January consultation the Neurologist told me the reality, “ you are under medicated, when you walked up to me I didn’t feel like you have Parkinson’s but the moment you sat down onwards it’s clearly evident. You need to be on Madopar , which gives you a massive change “. Yes, I did express my phobia but he explained to me the importance. After one year my symptoms played up again, this time before the consultation itself, I knew what would be the outcome. But the truth was hard to accept. During the consultation the Neurologist listened and listed out- you have more rigidity on your right side, muscles are more tensed , hypomimia (decreased facial expression) present. So we need to increase your medication- Madopar 50/12.5 mg x five times a day,3 capsules first thing in the morning then 2 capsules three to four hourly and Madopar C R 100 / 25 mg at night. The day I felt overwhelmed about taking the medication!!! February 2025.
Do you know the beauty of Madopar? It’s a magical drug because it’s started to reduce rigidity, stiffness reduced, my gait improved but ..,, The pain of taking Madopar is
It needs to take on time every day
It needs to take in empty stomach
Not to eat or drink anything until 40 mts because food consumption will delay the absorption of Madopar, especially diary and protein-containing foods. When digestion happens within a full stomach then the patient will lose 70.% efficacy of medication
So imagine if a patient takes this Madopar or any other Levodopa Preparation 5 times or more , the difficulties they are facing?
First of all, I need to remember, I need to keep an alarm. Luckily I am able to manage without an alarm at the moment.
If the patient is unable to self medicate , this responsibility goes on the shoulder of the care partner.
Secondly , if the patient needs to take more than one medication on an empty stomach, really it’s a waiting game for the first cup of tea. For me, as I have to take 3 different medications on an empty stomach, I usually have a hot cup of tea soon after brushing my teeth, but now …. I have to wait one and a half hours for my first cup of tea!!!
Now you have finished all the routine of the morning and around 10 am somebody tries to share a cake or chocolate with you, then you need to think twice. Am I ok to have this ? If your cravings make you want to eat it then you need to wait 2 hours before you take your next Madopar which ideally you should take at 11 am , then 3 pm, 6.30 pm , 7.30 pm and 10 pm the game continues… Even to have a cup of tea in between , you need to think twice. If I push back my regime, do I get wear off? If I go out, how do I tackle my regime? How do I cope with this regime at work? The List of questions can go on and on… It took me more than a week to get into the correct timings ( also needed help from fellow Parkinson’s mates). This may not be the story of another Parkinson’s patient because it is a unique condition. Put yourself in the shoes of a Parkinson’s patient !!! Is it easy? Convenient? No!!!! But accept the reality and move forward and dance against the challenge because Parkinson’s medications are a lifeline for Parkinson’s patients. Parkinson’s medications need to take on time / administer on time if the patient is admitted in the hospital. Q&A: the importance of getting Parkinson’s medication on time | Parkinson’s UK