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 Amantadine, so not hitting me with a double dose of C/L first thing in the morning. Not perfect but the best in a long time.
8/26/2024 Off times reduced and foot dyskinesia slowed down.
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 times and dyskinesia. I'm concerned of constipation being a side effect. I’ve already been to the ER with constipation once before and it was no fun.
8/13/2024 — Feeling pretty good so far after first night of gocovri. Giving it a week before doctor said to double dosage. Overall feeling somewhat better. Still getting two major off times with freezing around 10:30am and 5pm and other minor off times which last 15-30 minutes.
I’m thinking it is related to food in my gut conflicting with the absorption of levodopa. Hard to work around this when I take C/L every two hours. Not giving up hope, I think back to last time I saw the original doctor I saw at this neurology office who reassured me there are many things to try and new treatments awaiting FDA approval.
8/21/2024 I started to take two GOCOVRI pills a night last night. So far I have a headache, but nothing else.
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 break a sweat wrestling with this invisible assailant called PD. Struggling in my mind to make movement. Then, after almost 2 hours, the meds kick in. I move my fingers, wrists. My neurons are medicated and with a sense of innocence, as if nothing is wrong, I stand up and cherish the 'on time'.
Off times are when my meds not working. On time refers to when my medications are on, or working.
After a good night of sleep I may wake up fully charged, little or no stiffness for an hour or two. Regardless, I take the meds as scheduled.
The doctor being interviewed explains the hallmark signs of Parkinson's Disease. Also a commenter on the video was really informative - detailing what the "on/off" experience is like, and how unpredictable it is.
Dr. Tom Pitts, a board-certified neurologist, speaks with NBC's Tom Llamas about questions surrounding President Biden's health. Dr. Pitts has not examined the president, but shares opinions based on video clips of Biden.
Some common difficulties with speech includes:
Bradykinesia is a clinical term that refers to slowness of movement, or speed hesitations and halts that occur as movements continue. It can affect voluntary motions, like what you tell your body to do, as well as automatic or repetitive motions. Bradykinesia is a common symptom of movement conditions like Parkinson's disease (PD), and can make everyday tasks difficult.
In Parkinson's disease, hypomimia occurs when a lack of dopamine in the brain prevents facial muscles from working as well as they used to. This can make it difficult to smile, raise your eyebrows, or express your feelings, and can sometimes make it look like you have a blank expression.
In people with Parkinson’s, cognitive deficits may become more severe and impact daily functioning. Similar to slowness of movement (or bradykinesia), people with Parkinson's disease often report slower thinking and information processing (termed “bradyphrenia”)
Fatigue is a non-motor symptom of Parkinson's disease (PD) that can feel like a deep physical tiredness that doesn't improve with rest. It can make it feel impossible to move, as if you have no energy. Fatigue can occur at any point in the course of PD, whether movement symptoms are mild or severe.
The 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 bill passed with overwhelming bipartisan support in the U.S. House of Representatives last December.
On behalf of the 1 million people living with Parkinson’s disease in the U.S. and their families, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) applauds Congress for this historic step forward in search of improved treatments, and ultimately, a cure for every patient impacted by this disease today and in the future.
The Parkinson’s community — including tens of thousands of Parkinson’s policy advocates, partner organizations and champions in Congress — rallied together to help policymakers understand just how critical this legislation is. From adding your names to MJFF’s petition, calling and writing representatives and senators, pitching op-eds and sharing your stories on social media — advocates in all 50 states sent more than 70,000 messages to Congress urging their support. And nearly 1,000 advocates joined MJFF to meet directly with their members of Congress.
We’re especially grateful to the bill’s lead sponsors, Senators Shelley Moore Capito (R-WV) and Chris Murphy (D-CT) and Representatives Gus Bilirakis (R-FL) and Paul Tonko (D-NY) for their exceptional bipartisan leadership in getting this bill passed. We also extend our deepest thanks to Senate Majority Leader Chuck Schumer (D-NY), Representative Jennifer Wexton (D-VA), Senator Bernie Sanders (I-VT), Senator Bill Cassidy (R-LA), House Majority Leader Steve Scalise (R-LA), House Minority Leader Hakeem Jeffries (D-NY), Representative Cathy McMorris Rodgers (R-WA), Representative Frank Pallone (D-NJ) and the many cosponsors from around the country for helping to get this bipartisan bill passed.
A cross-country strategy to end Parkinson’s has the potential to:
Dramatically increase federal research funding;
Develop more effective pathways for treatments and cures;
Improve early diagnosis;
Spark new and improved models for patient care;
Create standards and measures to prevent Parkinson’s disease;
Address health disparities in diagnosis, treatment and clinical trial participation and
Enhance public awareness of the disease.
As the bill heads to the president’s desk, we look forward to continuing our work with policymakers to establish the advisory council and bring the National Plan to fruition for every patient and family impacted by this disease.
Please join us in thanking the 215 representatives and senators who supported this bill in Congress and read the Foundation's press release to find out more about this historic bill.
I woke up at 4am with this song in my head.
Well, I won't back down, no I won't back down
You can stand me up at the gates of Hell
But I won't back down
Gonna stand my ground, won't be turned around
And I'll keep this world from draggin' me down
Gonna stand my ground and I won't back down
Hey baby, there ain't no easy way out
Hey, I will stand my ground and I won't back down
Well, I know what's right, I got just one life
In a world that keeps on pushin' me around
But I stand my ground and I won't back down
Hey baby, there ain't no easy way out
Hey, I will stand my ground and I won't back down
No, I won't back down
I've been going back and forth whether I wanted to 'go public' with the news of having Parkinson's. This week, after a lot of thought, I did it. And received so much positive support from Facebook friends. No regrets.
Here is what I posted to my Facebook timeline.
I'm guilty of posting a vague reference to my health. Not sure why but for a long time I've avoided telling many people that I was diagnosed with an illness. I still don't feel comfortable talking about it, mostly because it has gotten negative responses or reactions from the few friends I've told. It seems every time I open up and tell a friend, it's the last time I'll hear from them. A few wrote to me that people don't want reality contaminating their Facebook fantasy world so I've been hyper-selective about what audience I expose to my postings that don't eude toxic positivity.
Since I broke character yesterday and posted a vague message seeking a time machine to get a cure, I decided to be authentic and share the news here. Twelve years ago I was diagnosed with Young Onset Parkinson's Disease. I am not seeking emoticons of support, just letting friends know what's up. Parkinson's Disease has a very long list of symptoms, it's like the menu in a Chinese restaurant when talking about symptoms. One person suffers from B1, B3 and G4 the next person suffers from B3, C1 E22 and p5. And do you want shakes with that? No two people have the same path. If you want to read more, I'll add a blog link in the comments. I know it is hard to understand that one illness can take so many directions but for now it's all called Parkinson's, maybe it will have sub classifications in the future, who knows. Hopefully this message doesn't make you too uncomfortable.
One thing to remember, the illness is both chronic and progressive with no cure.
So here it is, now on Facebook. You can click an emoticon, post a GIF or send thoughts and prayers, it's all good. Phone calls or email are welcomed. I don't like Facebook messenger and try to avoid text messaging when possible.
TGIF and have a great weekend.
