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.
