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 seems to be creating anxiety, not sure if it's actually the new med or something else.
I found one blog post about a woman who moved to Mexico. She's living in the retirement community, Lake Chapala. Not exactly looking for Lake Chapala right now but I liked her story because there are many positives to focus on; from the exercise group to the neurologist in Guadalajara specializing in PD and other movement disorders.Yarnie Journey with Parkinson's (10/2019)
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 after the vaccine.
This is my personal opinion and others will confirm I have been complaining about off times and dose failures for a long time. Can you tell I am emphasizing this is a personal opinion of a lay person, not the results of medical science.
Pfizer 💉💉
First shot -
2:00 PM - First dose of the vaccine had.a brief warm/burning sensation.
7:00 PM - The arm which got the vaccine was very week a few hours after the vaccination.
Day 2 - 9:00 AM - The next day I could barely lift the arm. This only lasted about a day and a half.
Day 2 - 2:00 PM - 24 hours after injection, I felt slightly sick, like a mild flu.
Pfizer 💉💉
2nd shot -
4:00 PM - 2 hours after fell asleep sitting upright for a few hours.
Day 2 - 7 PM - 27 hours after had a throbbing headache followed by aching legs and arms
Day 2 - 10 PM - 30 hours in, fluish. Funny he doesn’t look fluish.
Day 2 - 11 PM - After a brief battle headache and flu stopped.
Day 2 - 11 PM - Arm pain. This may just be my regular day to day pain.
Day 3 - 1 PM - approaching the 48 hour mark and eyelids feel very heavy.
Strength in arm is okay with 2nd. No extreme weakness like first dose.
A day after the vaccine I was definitely falling asleep during the daytime more frequently. The off times were more pronounced, 30 to 60 minutes after taking PD med, it hit me like a boomerang. The stiffness and freezing was extreme. I tried reducing the medication and it seems to have helped the extreme off times for a while.
Since my experience, I have read stories of others with a similar response to the vaccine. Any PD experts tracking this data to see if there are side effects from COVID-19 vaccine that changes effectiveness of levadopa/carbadopa? It would be a nice project for a medical professional to start.
Since March, when I got the vaccine, I've also been having extreme anxiety, mostly when I wake up but also associated with the mediation off times and my vision is blurred.
A few years ago I went to a LSVT "Move Big" physical therapist that focuses on the movements like arm swing and gait while walking. LSVT BIG trains people with Parkinson disease (PD) to move more "normally" using big movements and steps.
People living with PD or other neurological conditions often move differently, with gestures and actions that become smaller and slower. They may have trouble with getting around, getting dressed and with other activities of daily living. LSVT BIG effectively trains improved movements for any activity, whether “small motor” tasks like buttoning a shirt or “large motor” tasks like getting up from sofa or chair or maintaining balance while walking. The treatment improves walking, self-care and other tasks by helping people “recalibrate” how they perceive their movements with what others actually see. It also teaches them how and when to apply extra effort to produce bigger motions – more like the movements of everyone around them.
The only reason I stopped going was because the place hired a new person to help with the movement exercises and he caused me to fall and bruise my hip. Otherwise it was pretty cool.
Some of you with chronic illness will relate. When you are forced to stay home due to your illness, cannot make long range plans, often forced to cancel last minute.
People do not want to stand too close to you just in case it is contagious.
Assholes talk behind your back, “do you think he has it?"
Say insensitive comments, "Looks like he had a stroke" or "He’s so full of shit.”
Your usual support network is cut off, spending days, weeks, even months at home. Anxiety. Depression. Fear. Loneliness.
POST PANDEMIC and the world gets the green light to go.
After the pandemic your life goes back to ‘normal’ which is pretty much how it’s been during the pandemic. Only getting out to go to doctors or pharmacy. Phone calls are trying to get prescriptions covered or make doctor appointments.
And there are those lists. "If you make a list, it might be easier to accomplish things". I'll add that to my list right now.
Most people think of Parkinson’s disease (PD) as a neurodegenerative motor disorder. When you picture someone with Parkinson’s you imagine someone with a tremor, slowness of movement and difficulty controlling movement. But in recent years more has been learned about the non-motor symptoms of PD. There are a broad range of symptoms that range from anxiety to weight management and beyond.
read more on parkinsonsdisease.net
here is some stuff for caregivers, on parkinsonsdisease.net/caregiving