Guest Voice: The Parkinson’s pendulum of pain, paralysis, and power
My Parkinson's pattern is a tug-of-war, pushing and pulling me every day
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Note: This column describes the author’s own experiences with levodopa. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
I live my life in borrowed moments. These are times when my body works, my mind is clear, and I can almost forget what is happening to me.
But borrowed things must always be returned. Thus, I find myself trapped in this painful roller-coaster ride of Parkinson’s disease. It’s daily, relentless, unpredictable, and exhausting. It depletes me physically, cognitively, socially — feel free to add your own “-ly” here. After all, the list may be exhausting, but it is not exhaustive.
When the medication for my Parkinson’s disease is working, everything in life feels well. My mood is buoyant, my outlook is optimistic, and my thoughts are happy and hopeful. I almost feel like I am shrouded in a cloak of invincibility — nearly unstoppable. But then, in an instant — crash, bang, wallop — everything comes to a screeching halt.
Duped, again
Like Cinderella at the prince’s ball at midnight, I suddenly turn into a vegetable (not a pumpkin, fortunately) when the medication wears off. My body undergoes a full-scale internal malfunction, like my electrical circuitry has glitched beyond repair. I’ve experienced this a gazillion times since the day I heard those wretched words: “You have Parkinson’s disease.” Yet despite this, somehow, it never gets any easier to accept.
I am suddenly overcome with vulnerability and anxiety as the fragile, illusory veil is ripped clean from my eyes. I realize — again — that I’ve been duped. Outsmarted. Played. By levodopa.
That beautifully deceptive little pill teases me, revives me, coaxes my battered dopamine receptors back into action just enough to remind me of what life used to feel like. It gives me a glimpse of what life was like before Parkinson’s stole so much.
Yet, every time the pill begins to work its magic, that naive, tiny, little hope deep inside wishes that maybe, just maybe, this time the dopamine will last … forever? But then an even louder, gnarling voice bellows out that I am a fool for allowing myself to hope, and very soon I will land back in reality with a thud.
I try to shoo this infuriating, buzzing, nagging voice away. But it persists, getting louder and louder, until the medication efficacy does, in fact, suddenly clock out, and I find myself reverting to my former, oh-so-familiar unmedicated state: dopeless and hopeless.
This happens to me four or five times a day, every day. This tug-of-war existence, pushing and pulling between being on and off, has no rhyme or reason. It offers no warning. At the mere unpredictable flick of a switch, I am left forlorn and frozen, again.
While I understand that everyone under the Parkinson’s umbrella has a number of similarities that unite us, we are also, in fact, all unique in how this disease affects us.
I believe that my type of Parkinson’s is aggressive, vengeful, and ruthless. The more I try to outrun, thwart, or outsmart it, the nastier it bites back. I plead and implore it to go away. But it refuses. So I begrudgingly admit defeat and pathetically put up my white flag, silently begging for it to stop suffocating me like an albatross around my neck. But it does not listen.
It never has.
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Prabhati
So sorry to hear the effects of ups and downs of meds. My husband is 75 and has had Parkinson’s for ten years. He started using meds with the duodopa pump about three years ago. Since then we don’t have the big changes of down times.
Meds have remained at the same level for nearly 3 yrs now. Just thought of letting you know about the good effects of using the pump.
All the best.
Shamsa Hussain
Prabhati, thank you so much for this message. It genuinely gives me hope hearing positive experiences with the pump from people actually living with Parkinson’s day to day.
The medication fluctuations and down times can be brutal, so hearing your husband has had more stability and fewer dramatic offs with duodopa is really encouraging. I know it comes with its own challenges too, but when it works well it can make such a difference to quality of life.
Wishing both you and your husband all the very best. Parkinson’s affects the whole family, not just the person diagnosed, and carers carry so much quietly in the background too 💛
Vicky Rose
Thank you shamser for sharing your pain. I've been caring for my friend for 17 years now with Parkinson's.
He's now advanced stages and I am rock bottom...but he never explains or talks about his struggle ...you have helped me understand and I have renewed empathy and patience.
My heart is broken and he is broken we can no longer fight this together
I wish I could help you sweetheart I pray for you x
Shamsa Hussain
Vicky, your message honestly broke my heart a little. Seventeen years is a lifetime of loving, carrying, adapting and grieving someone whilst they are still here. People rarely speak enough about what Parkinson’s does to carers and loved ones too.
A lot of us with Parkinson’s struggle to explain what is happening internally because it’s overwhelming, hard to put into words, and sometimes we don’t want the people we love to see just how frightened or exhausted we really are. So the fact you read my words and found renewed empathy and patience means more than I can explain.
Please don’t underestimate what your friend has gained from having someone stay beside him through seventeen years of this cruel disease. That kind of loyalty and care is rare.
I’m truly sorry you are both at such a painful stage now. Parkinson’s can feel merciless sometimes. Sending love to both of you, genuinely. And thank you for your prayers and kindness — your message will stay with me 💜
Richard
My Parkinson’s has affected muscles on my mouth and jaws. Causing me to drool and it’s driving me crazy!
Richard
My Parkinson’s has affected muscles on my mouth. Causing drooling jaw. crazy!
Shamsa Hussain
Hello Richard,
I'm sorry to hear that you are having a tough time with you managing your Parkinson's symptoms right now.
The myriad of ways in which Parkinson's can affect us is mindboggling.
It is a very complicated set of motor AND non motor symptoms and no two legs I will have the exact same symptoms.
At a very simple, reductionist level, many people think it's just a temor, but that is so far from the truth.... As your personal experience shows.
Do you have a good medical Parkinson's team supporting and treating you? If this is a new/recent symptom, it might be worth contacting them to see if they have any suggestions for things that might help alleviate your current discomfort
But the problem with this (from my personal experience) is that most neurologists and Parkinson's nurses just seem to MORE medication to our existing medley of medication. So much so, when you walk.... You make an audible rattling sound from all the pills knocking about inside you.
How many pills can we take a day? I'm currently on 22-25, which is cr-cr-crazy. But what is the alternative?
Richard, I hope you get some relief from your mouth pain soon.
Dick Eastman
With very few changes, I could have written this article as it so closely parallels my own experience with Parkinson’s disease. I’m 73 years old and was diagnosed with PD 10 years ago. I tried the usual medications, including of course, carbidopa/levodopa pills, but was just not getting relief. But here’s some good news: there is a new device called Vyalev by Abbvie. This is an Infusion pump which injects liquid carbidopa/levodopa medication into your body 24/7. I’ve been using it for a while now, and I can tell you that it greatly improves the pain of the symptoms and smooths out my ups and dawns.
Thank you Shamsa for writing your article which lets me know that I’m not alone in this struggle with Parkinson’s disease.
Shamsa Hussain
Hello Dick Eastman,
Thank you so much for taking the time to reach out and get in contact with me after having read my article.
The reason I share my experience is because it helps me feel less alone. Parkinson's is such an isolating disease. You sometimes feel like you are going crazy with all the fluctuations. But knowing that it's a Parkinson's thing and not a Shamsa thing.... Gives me much comfort and solace.
I am so happy to hear that you are happy better days thanks to the pump. Advancements in Parkinson treatment options are often slow and sluggish.. The medical community seems to overlook the needs of people with Parkinson's. The symptoms of this disease are so cruel, debilitating and painful. Yet, most people in 2026 are popping pills discovered in the 1960s. How does that make sense?
Anywho, I pray the pump infusion treatment continues to work for you and give you many happy and positive years to come.
Shamsa Hussain
Christine, this message really got me. You’ve described it exactly how it feels. People see Parkinson’s as a condition, but living with it feels more like being trapped in a body that constantly overrides you. It’s relentless and there’s no switch-off from it.
I’m really glad the article resonated with you. Sometimes writing these things feels quite exposing, so hearing from someone who truly understands it means a lot.
Please do share it. If it helps people understand even a fraction of what daily life with Parkinson’s is actually like, then that matters.
Wishing you gentler days with it all. Parkinson’s asks so much from us mentally and physically. I hope you continue to find strength, resilience and moments of peace amongst all the chaos of it 🤍
Christine Snowden
Shamsa, the description in this article is so eloquent + conveys almost exactly my life with Parkinson’s too.
It is relentless, I have described to family, friends + health professionals that to me it feels as if I have a part of my body I have no control over, it rules your life, there is no escape.
Thank you for this article which will I hope you will be happy for me to share to help others understand our everyday struggles. You are not alone, keep writing to help the PD Community please.