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.

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 co...

Big news just in from Michael J. Fox foundation 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.  Senate Majority Leader Chuck Schumer (D-NY) announces the passage of the National Plan to End Parkinson's Act in the Senate. 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...

Am I a klutz or is it a PD fall?  I've fallen down a few times while out walking, five times to be exact. Three of the 5 times happened when I tripped over sidewalk hazards in New York City. Fortunately only one of these falls resulted in broken eyeglasses, multiple cuts and scrapes. I did better on the other falls--just a few scrapes and my pride was bruised. In two of the incidents the sidewalk hazards were similar. Light poles, either previously stood or were being installed. Regardless, there were bolts set in the concrete sidewalk and sticking up a few inches. If I were the type to run to a lawyer, I'm sure a judge would agree and find the city or property owner at fault. My PD Quick Tip sounds obvious but there is a lot going on and this is worth repeating: Make sure you watch where you're walking, you might just avoid an unnecessary fall.

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 Source:  LyricFind

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 ...

Researchers at Cardiff University are hoping to launch a study to discover if there is clinical evidence that drumming classes are improving the lives of Parkinson’s disease patients. Parkinson’s disease is more than just a tremor. It’s a slow, exhausting loss—of movement, balance, speech, even parts of the mind. It creeps in, day by day, because the brain is losing nerve cells that make dopamine—a chemical that helps control both motion and mood. That’s why people with Parkinson’s often struggle with walking, standing up, or simply turning around. Some experience sudden “freezing,” where their feet won’t move at all, especially in tight spaces like doorways. Over time, many also face memory problems and cognitive decline from Parkinson’s-related dementia. But in a quiet corner of Wales, something unexpected is helping: samba music . Sparky Samba: Finding Rhythm in a Body That’s Lost It Eirwen Malin knows Parkinson’s disease firsthand. She lives with it. After her son attended a sam...

Suddenly my eyelids feel so heavy, and at the worst times. It's happened when I am just talking with someone-my eyes are closing, eyelids so heavy, I struggle to keep my eyes open. The person I was talking to thinks I'm bored and am really rude.  Was I hypnotized? It's probably the autonomic nervous system taking a break. Blinking is usually a natural reflex. Parkinson's Disease can cause a person to stare and the autonomic nervous system forgets it's time to blink.    I started doing an eye exercise to strengthen my eyes and remind my brain to blink. I'm not sure if my ophthalmologist would endorse this technique, but here it is.  The exercise is 8 steps. I basically look in each direction, hold it for a second and blink. Look in the next direction and repeat. Look up and left, blink Look up, blink Look up and right, blink Look right, blink Look down and right, blink Look down, blink Look down and left, blink Look left, blink I repeat this for a minute. Afterwa...

The name of this blog is changing from screwpd to parkinsons48.blogspot.com   The former name has caused confusion about the blog's content and also caused it to be flagged as not safe for the workplace.  Hopefully the name change to parkinsons48 gets this blog indexed and crawled by the search engines. Are you wondering, "Is there anything I can do to help?" Yes, you can help and it won't cost you anything but a few minutes of time. Post the new url on a few of your favorite social media sites and to relevant groups.  Thanks for your help. Like and Share!  

  April is Parkinson's Disease Awareness Month, chosen because it is the birth month of James Parkinson, who first identified the symptoms of Parkinson's disease more than 200 years ago. Parkinson's Disease, or PD, progresses and affects everyone differently, and symptoms vary from person to person. It can be a mix and match when you go to a PD support group meeting. The most commonly visible symptoms are tremors or shaking, but the condition can also manifest in many other forms, such as slowness of movement, muscle rigidity, speech changes, fatigue, sleep disturbances and mood disorders. There is currently no cure, however researchers are working to find a cure, as well as better treatments and support for people living with the condition.

I brought up Parkinson's Apathy to a group last week and was surprised I received a lot more response than I expected. Just knowing 5 or 10 other people also struggle with PD apathy is reassuring and helps me to not feel so alone with my long list of symptoms. PD apathy is very real. I struggle to accomplish even the smallest tasks and I beat myself up because I have a ton of things that need to get done, all with a high priority. But I freeze up mentally when I think about it. The list grows and months go by on the calendar. In an ideal world there would be a person who can help someone who's cognitively challenged to do things. Like a "task rabbit" but they are also trained in psychiatry or psychology. Someone who understands we're not being lazy. The neurons just don't connect to accomplish the things we need to do. I try making lists, then lists of lists and it's not helping. By the way, I'm calling this apathy  but the inability to accomplish...

Parkinson's Unity Walk Saturday April 27th 2024 • 8:30am - 1pm, Central Park, New York, NY The Michael J. Fox Foundation (MJFF) is thrilled to bring you the 2024 Parkinson’s Unity Walk on Saturday, April 27th, in New York City’s Central Park. Enjoy programming at the Bandshell, explore informational booths featuring industry representatives, national and local groups, and participate in a 1.2-mile walk. Families and friends of all ages and abilities are welcome for all portions of the event! Let’s come together and walk to end Parkinson’s! This year, the Parkinson's Unity Walk will be celebrating 30 years of joining as a community and walking together to end Parkinson's disease! Location: Central Park, NYC - Naumburg Bandshell Entrance at East 72nd Street. & Fifth Avenue Unity Walk Route Map Free Registration More info on michaeljfox.org/unitywalk

This presentation feels like it is talking for me.  Joanne Hamilton talks about some non-motor an cognitive issues that I have trouble expressing. Some of the first symptoms people with Parkinson’s may experience are not visible to others. As Parkinson’s progresses, cognitive and other non-motor symptoms continue to be a significant aspect of living with Parkinson’s. Joanne Hamilton, PhD, ABPP-CN, of Advanced Neurobehavioral Health of Southern California in Poway, CA, explains what to expect and how to distinguish symptoms caused by Parkinson’s from those caused by medications. Her presentation for the Davis Phinney Foundation audience offers hope and practical strategies for understanding and managing cognitive and non-motor challenges. From the Davis Phinney Foundation for Parkinson's

If you get "stuck" walking, brushing teeth, in the shower scrubbing shampoo, etc. Try looking at the task from another angle.  Walking around in apartment. Sometimes I'm heading into a room and can't make the left turn to go in. Back up and try doing the task in reverse.  I turn right three times and I'm facing left. When I'm having trouble with my arms and hands and it's difficult to move the toothbrush, it seems to be the toothpaste jamming me up. When I try it without toothpaste and rinse with mouthwash it works.  I don't know if a dentist would be on board with this method. When I'm walking outside I focus on the sidewalk and try to follow the lines so I'm not swerving all over.  Occasionally I'll think of something I do that seems counter intuitive or just strange but it works for me and my PD and maybe it can help another struggling person too.

A brief interruption. Most of you come to this blog to read the posts related to Parkinson's Disease.   I've been experimenting with various settings on this blog in an attempt to get it listed in popular search engines, trying to remove whatever is preventing the blog from appearing in search results. You may see the appearance radically change a few times a day as I experiment with setting but the blog content is not changing.  All the postings about YOPD and PD are still there. We will control the vertical. We can roll the image; make it flutter. We can change the focus to a soft blur or sharpen it to crystal clarity.   For a few hours last week the entire blog was unreadable on mobile devices and a couple of you asked what is going on. So in the spirit of transparency, that's what's going on. Do not adjust your set. And now back to the blog posts, already in progress.

So I could blame a lot of things for the nearly impossible task of changing a light bulb, but I'm pretty sure it's 75% shitty product design and 25% user fault, meaning my diminishing fine motor skills related to Parkinson's. About 5 years ago a light bulb burnt out in the hallway. No big deal I thought. I dragged out the ladder and stared at the cheap made in China fixture.  No way could this be as complicated as I'm making it. Yes, it was that complicated.  I posted a photo of the fixture with a plea for help to a few message boards. Someone who went through the demoralizing hell I'm going through replied.  Sent me a PDF with step-by-step directions how to change a light bulb in this fixture. Over the years I've experienced other poor product designs from computers to television remotes to poor user design on software.  Oh sorry, I was drifting. Changing a light bulb. Yes that is what I'm doing today. The meds kicked in so I'm changing burnt out bulbs....

The music is not specific to PD. I'm a music fan and some mornings I share a few songs. This morning I'm just feeling invisible, misunderstood and missing. Friends have moved on with their lives, With a look of ease drawn on my face, it's easy to misread my feelings as lack of concern. I do worry and I do care. Stuck inside myself.  Stiffness and pain. Frozen.  I miss me.   

My gut has issues absorbing medications. Sometimes it doesn't seem to get absorbed, other times it can take hours then suddenly the medicine works.  My doctor has been telling me about a new deivery system for carbidopa/levadopa that works like diabetes meds, with a tiny prick into fatty tissue, not only bypassing the gut but instead of spikes of medication every time I take a pill, this should have a steady flow. Two subcutaneous preparations, ND0612 and ABBV-951, have been shown to improve OFF time/motor activity or dyskinesis in advanced Parkinson's disease. One advantage of ABBV-951, over ND061, is that it can be used alone as l-dopa therapy, whereas ND061 must be used with oral l-dopa. Awaiting FDA approval. I'm not giving medical advice. Everyone's PD is different and responds differently to the medications. Work with your movement disorder specialist to figure out what's best for you.