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I just hate the feeling of anxiety and stiffness associated with not being able to move. I had DBS in October 2025. Within a month a felt human again. I was moving with very little medication. Then my doctor took me off of amantadine and I haven't felt that way since. Happy, free, just glad to be alive. Everything was coming up roses, as they say. I am concerned that I am abusing Carbodopa-Levadopa by the quantity that I am taking. I have always been wide open or nothing. So, I self… read more
Answer Summary
Members shared their personal experiences with managing Parkinson's medication, particularly around adjusting Carbidopa-Levodopa doses during... Read more
You will find this strange so once we have a letter from you doctor to say you have PD you get all PD Medication Free in Ireland 🇮🇪 ☘️
I intend to ask about self-adjusting meds when needed at my next appointment in a couple of weeks.
@A MyParkinsonsTeam Member, Yes, you cleared it up for the most part. Thank you. I'm glad that you're feeling better overall.
I have never heard of anyone taking Carbidopa/Levodopa as needed, and frankly, I would be terrified to do so, but maybe I'm the odd one out. My system can't handle standard Parkinson's medications. I take Rytary and I'm thankful for it, but I don't think anyone should take even one capsule until it's determined they can afford it indefinitely!
When I was first asked to try it, my doctor provided free samples.
I filled out the Patient Assistance program form, but having insurance disqualified me.
From the first pill, I was doing things I hadn't done in I don't know how long, but my doctor's office said I couldn't keep getting free samples and had to pay for it. I went round and round with the manufacturer of Rytary and my Obamacare insurance company.
It became a nightmare roller-coaster. The first crash landing was the worst—I felt like I'd gone over Niagara Falls in a barrel! Then, someone would find a way for me to get Rytary again, and I would return to my full dosage slowly until that route failed. I begged those who interceded to give me a heads-up so I could wean off slowly for a softer landing (like lining the barrel with pillows). That worked once or twice.
I was too out of it to remember how many times I bounced on and off Rytary, but I have no doubt it caused additional brain damage. I feel like a gas vehicle rewired multiple times because vandals kept ripping out my electrical system. I even changed insurance companies when I could.
The problem was the copay, even with prior authorization, was up to $1,000! I called the Marketplace and complained, telling them that if I could afford $700–$1,000, I wouldn't qualify for Marketplace insurance. They agreed, but had no solutions.
I ended up in the hospital with sepsis because I couldn't afford all my medications. After recovering, it was still about six weeks before I qualified for Medicare, and I became about 90% bedridden during that time.
I'm on Medicare now and the most I pay for Rytary is about $12.50. I can handle that. But doctors and manufacturers need to make sure they don't start people on medications they can't afford—nobody should ever have to bounce on and off like that.
It's really wonderful to hear how transformative DBS was for you — feeling human again after surgery is exactly what that procedure aims to deliver. That kind of joy is worth protecting, which is actually why this question matters so much.
To answer honestly: yes, some MyParkinsonsTeam members do take more Show Full Answer
@A MyParkinsonsTeam Member, If your neurologist knows how much medicine you're taking, doesn't rebuke you, but writes another prescription to ensure that don't run out, I would say that you're not really taking more than prescribed, which would be dangerous. Since your doctor knows and approves, what you're doing is not dangerous.
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