Dealing with Parkinson's Disease

A network of love and support can be an important piece of the puzzle when it comes to living well with Parkinson’s disease (PD), but it isn’t always easy for loved ones to find their place in that network. When does care become overbearing? How can you continue sharing interests as symptoms make certain activities more challenging? And how can you communicate about sensitive topics? In this video, Rachel Dolhun, MD, DipABLM, principal medical advisor at The Michael J. Fox Foundation offers five tips to support a loved one with PD, whether you’re a partner, a parent, a child or a friend.

It started with something small. Vivek Puri, a successful businessman in Northern Virginia, noticed his arm wasn’t swinging naturally when he walked. Instead, it curled up against his chest, his wrist hovering awkwardly near his belt buckle. It looked strange, but it didn’t hurt. So he adjusted his posture and got on with his day. He was 38 years old. Soon after, his fingers began to stiffen. Typing became frustrating—his hands didn’t respond the way they used to. The problem got worse. A neurologist told him it was likely neuropathy, a nerve disorder. Physical therapy was prescribed, but after months of trying, nothing changed. Then came the moment he’ll never forget. “I remember saying, ‘By the way, I’ve noticed that when I walk, my right hamstring cramps up.’ The color just drained from his face.” His doctor’s expression said it all. Something was seriously wrong. Within 24 hours, Puri had an urgent appointment at Georgetown University’s Movement Disorders Clinic—and, just like t...

Facial masking is when you have a blank expression, you aren't able to convey emotions with facial expression. Masking is common with Parkinson's. Medication helped a ton but I still feel my expression shows anger or sadness when I'm calm and happy. Exercise is important, and the facial muscles are no exception. It's very important to exersize your facial muscles. Try exaggerated gestures and say the vowels. AAAAAAAA EEEEEEE I OOOOOOO UUUUUUUUUUUU. And sometimes "Y". Remember to smile BIG! 😀

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, and symptoms can return. This episode will share steps you can take to manage “off” time, including how you can communicate with doctors and care partners about what you’re experiencing and ongoing research to decrease or treat these episodes.  Host and person with Parkinson's Larry Gifford leads a discussion with: Ashley Rawls, MD, movement disorder specialist at the University of Florida Norman Fixel Institute for Neurological Diseases  Soania Mathur, MD, co-chair of MJFF’s Patient Council  Rick Schwartz, person with Parkinson’s and former professional baseball player  Listen to the panel discussion at  The Michael J. Fox Foundation  

 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 the...

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.