Parkinson’s “Off” Time: What It Looks Like, and How to Manage It - MJFF

What does it mean when we say that Parkinson’s can go from “off” to “on” and then back to “off” again? Listen to this Michael J. Fox Foundation podcast as experts discuss these “off” periods — those times when medication can wear off between doses, or are not working optimally,...

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GOCOVRI update 1

 It's been a few weekson GOCOVRI, I'd say early results are reduced off times and reduced dyskinesia.  I don't remember the medication I took prior, too many doctors each with their favorite combination of pills.  GOCOVRI isn't adding C/L but is time released...

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Any GOCOVRI success stories?

The last two visits to my movement disorder specialist (MDS) each had a new doctor. Each doctor stopped previous med and started another.  Meds not optimized. Major off times.  8/12/2024 — The latest doctor thinks a new medication GOCOVRI will help with the off...

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Wake Up Brain, Wake Up

Sometimes it feels like a part of my brain is asleep. It isn't talking or listening to me. The meds didn't kick in properly or sometimes at all.  I want to move an arm or leg or my hand to get leverage to pull myself up. Nothing, not even in my finger. I...

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Congress Passed the National Plan to End Parkinson's Act

Big news just in from Michael J. Fox foundationThe U.S. Senate today unanimously passed the National Plan to End Parkinson’s Act, the first-ever federal legislation dedicated to ending Parkinson’s disease, sending the bill to President Biden’s desk to be signed into law. The...

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Help me change a light bulb?

So I could blame a lot of things for the nearly impossible task of changing a light bulb, but I'm pretty sure it's 75% shitty product design and 25% user fault, meaning my diminishing fine motor skills related to Parkinson's.About 5 years ago a light bulb burnt out in the hallway....

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New C/L Delivery System Sounds Promising

My gut has issues absorbing medications. Sometimes it doesn't seem to get absorbed, other times it can take hours then suddenly the medicine works. My doctor has been telling me about a new deivery system for carbidopa/levadopa that works like diabetes meds, with a tiny...

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Meds Adjusted and actually feeling a bit better, for now

A few meds changed or added seem to be helping me. Never follow my medical scribblings, consult your doctor before changing or stopping any medications.Changed first dosage of the day of carbidopa/levodopa (C/L), here's what I'm doing... instead of one and a half pills...

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DBS? Scared out of my mind

 I'm almost 10 years since my diagnosis with Parkinson's Disease.  At first Sinemet was the magic fix. One tablet 25/100 brought me back. Then mixing, matching, optimizing meds for the next 10+ years, like playing a carnival game. Where's the neuron. Transmitter or...

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PD Medication - Optimizing Gone Wild

 The battle of medications, dosages, frequencies versus PD is an ongoing battle.  My meds and off times went in a spiral in March 2021 right about the time I got the vaccine for COVID-19 (see PD and COVID-19 Vaccine). A coincidence? Maybe. Whatever the cause, I've...

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Psych issues years before Movement Disorder issues?

My PD history is unlike any I've read. I started having psych issues: Anger/rage, paranoia, obsessing. My family and close friends thought I was crazy. This started about 8 years before an official diagnosis of Young Onset Parkinson's Disease (YOPD because diagnosed under 50...

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Amantadine 100mg Capsules ?

 Anything good or bad to share about Amantadine? Besides Rytary's price and failing to last more than 2 hours in my system,  I've been having off-times and dosage failures with Rytary.  So I switched back to Sinemet and the MDS added Amantadine which...

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PD and COVID-19 Vaccine

I have to start with, "I'm not a doctor and any mention of medical or science is my opinion"About 4 weeks ago I received the second COVID-19 vaccination. My memory of events may be a bit hazy, but it seems like the effectiveness of my Parkinson's medications changed shortly...

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Medication Off Times

I'm told I am lucky to respond to Sinemet and have been taking it since 2012.  The bad part is the medicine is only effective for 3 hours, and then it wears off pretty quickly. I've tried extended release and am currently taking Rytary which is supposedly longer lasting...

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Traveling with PD

My wife planned a great trip which involved three countries, trains and planes. She built in down time for my rest. So now it's the big day, we're off to the airport. I've got this. I can do it. So away we go. Trip of a lifetime. Planning for months. On the first night...

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Getting the diagnosis

Years before the movement issues, my symptoms started before anyone would think I might have Parkinson’s Disease (PD). One non-motor symptom at a time. Never connecting the dots. Loss of smell. Constipation. Paranoia. Disproportionate Anger (rage). Choking. Then suddenly...

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