Here I share my experiences with Parkinson's Disease and along the way I'll share some interesting tips I come across and occasionally add some of the music that moves me. Hopefully something I share helps others dealing with their own PD battle. I was diagnosed with Young Onset Parkinson's Disease YOPD in my 40s and learned a lot on the illness. Remember that everyone experiences YOPD or PD differently, what helps one person may not help another person with the same diagnosis.
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.
There is currently no cure for Parkinson's Disease. But some with Parkinson's are finding that an unusual therapy – rock climbing – is helping them improve their balance, mobility and strength. 60 Minutes correspondent Lesley Stahl, whose husband had Parkinson's disease, knows firsthand how sports can serve as an unexpected source of relief and joy in the midst of an incurable neurodegenerative disorder. Watch the full story from CBS Sunday Morning: https://www.cbsnews.com/video/combating-parkinsons-with-rock-climbing/
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
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:
Speaking softly or in a reduced volume
Using a monotone voice
Slurring words
Mumbling
Stuttering or stammering
Hoarseness or a strained quality
Breathiness
Uncertain articulation
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.
As an Amazon Associate, I earn from qualifying purchases. If you choose to purchase after clicking a link, I may receive a commission at no extra cost to you.
