Dealing with Parkinson's Disease

Carly Simon shares Parkinson’s Disease and Cancer Diagnoses, Explains Yearslong Absence: ‘I Have Not Stopped Living' Carly Simon is opening up about her private health struggles. The “You’re So Vain” singer, 83, has Parkinson’s disease, she revealed July 27 in a statement obtained by PEOPLE; in the same statement, the music icon also announced that she underwent surgery for basal cell carcinoma, a form of skin cancer, amid her Parkinson’s diagnosis and treatment. So many people have written to me, kindly wondering about my relative silence, asking how I am and what I have been doing. The truth is, I’ve been learning how to live with Parkinson’s disease. It has taken me some time to understand the diagnosis, to adjust to it, and to decide how much I wanted to say about it publicly. Parkinson’s is different for everyone, and it can be unpredictable. Some days I’m so tired I can’t get the day moving at all. On others, it gives me a little more room to move, think, work, and feel like ...

 I blacked out 7 times recently. I think due to a new medication.  So on Monday I saw a new MDS. She said the orthostatic hypotension is very serious and put it at the top of my list.. prescribed a med to raise blood pressure. #1  priority. My concern is will it give me high blood pressure if my b.p. is normal? Orthostatic hypotension — also called postural hypotension — is a form of low blood pressure that happens when standing after sitting or lying down. Orthostatic hypotension can cause dizziness or lightheadedness and possibly fainting. Orthostatic hypotension can be mild. Episodes might be brief. However, long-lasting orthostatic hypotension can signal more-serious problems. It's important to see a health care provider if you frequently feel lightheaded when standing up.

Non-motor symptoms of Parkinson’s can be just as challenging—sometimes even more so—than the movement symptoms . Caregivers often see the impact of these issues every day, even when they aren’t the focus during medical appointments. It’s important to remember that problems like mood changes , anxiety , sleep issues , or cognitive shifts are very real parts of the disease and deserve attention. If your loved one’s movement-disorder neurologist hasn’t brought up these concerns, don’t hesitate to raise them yourself. You can also ask the specialist to help connect you with a psychiatrist or mental-health professional who has experience working with people who have Parkinson’s . This kind of support can make a meaningful difference for both the person living with PD and those caring for them.

Yesterday, I did something I hadn’t done in almost a decade — I saw a chiropractor. And I’m glad I did. For years, I’ve been dealing with the chronic neck and shoulder stiffness that comes with Parkinson’s disease. The discomfort has been a constant companion, and while I’ve tried to manage it through the traditional medical system, progress has been frustratingly slow. Neurologists — the gatekeepers of my care — have always warned me against chiropractic therapy. They insisted it was unscientific, risky, and especially dangerous. Their strong stance talked me out of using a chiropractor for the past eight years. I trusted the doctors. But over time, it became clear that their methods weren’t addressing this particular issue effectively. Physical therapy was the alternative they recommended. And I tried. I put in the hours, followed the exercises, and showed up for every appointment. But session after session, I found myself feeling worse after the visit and questioning the process...

The Healing Rhythm: Exploring the Profound Connection Between Music and Parkinson’s Disease Music is more than entertainment. It’s a form of communication, an emotional outlet, and—according to growing scientific evidence—a powerful therapeutic tool. For individuals living with Parkinson’s disease (PD), music can do something remarkable: it can help the brain reconnect with the body. As Parkinson’s continues to affect millions worldwide, researchers and therapists are increasingly exploring how music, rhythm, and movement can aid in both symptom management and emotional well-being. The link between the brain and music is proving to be not just profound, but potentially transformative. Parkinson’s Disease and the Disruption of Rhythm Parkinson’s is a neurodegenerative disorder marked by the gradual loss of dopamine-producing neurons, primarily in the basal ganglia. This part of the brain plays a critical role in coordinating movement, and its disruption leads to hallmark PD sympto...

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...

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...

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...

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

The Covid plague had a lot of invisible effects on people. Two of the Parkinson’s symptoms that ht me very hard are fatigue and apathy.  If you haven't experienced this combo, it's not easy to imagine having good "on time" when meds are working pretty good and having to decide what you will do during this "on time" window that may close at any moment or stay open for a couple of hours.  I have a list in my head and on paper of things to do when meds are working. In no particular order: Take a shower, cut my nails, pay bills, vacuum, pick up medication, buy some groceries, reply to email, call a friend or relative, shave, do dishes. While I sit frozen in my body, I also think of huge projects, getting physical therapy, replacing appliances, home and auto repairs and moving to more affordable home. Oh I left out one ingredient. Anxiety. Add anxiety to apathy and fatigue. It's not good. And it is horrible for a spouse / partner / care giver who frequently g...

10 Lesser-Known Parkinson's Disease Symptoms August 28, 2015 from the MJFF Feed 10 Lesser-Known Parkinson's Disease Symptoms Before you or a loved one was diagnosed with Parkinson's disease, you may have only been familiar with the tremor symptom. Unfortunately, the disease brings with it a range of symptoms, some visible and many not. Lack of awareness around certain symptoms can delay diagnosis. For people with Parkinson's, it can sometimes be difficult to tell when symptoms are a part of Parkinson's disease or from something else. And if you're not aware that something is a Parkinson's symptom, you may also not be aware that it can be treated. It can be overwhelming to hear about a symptom you weren't aware of yet, but as always, knowledge is power. If you're experiencing a new symptom and you're not sure if it's related to Parkinson's, ask your doctor. It may be another part of a complex disease that researchers are always learning mo...

New Study Finds That Gut Microbiome Changes May Be an Early Sign of Parkinson's Disease Long Before Traditional Symptoms Appear The researchers hope these initial findings can help lead to earlier diagnosis (and treatment) of the neurodegenerative disease. A new study published May 2, 2023 in the journal Nature Communications reveals another possible way we might be able to spot Parkinson's disease early—and even before noticeable symptoms arise. According to this research, there are noticeable changes in the gut microbiota during the earliest stages of Parkinson's disease, and this may help doctors diagnose and offer targeted treatment before the disease progresses further. Read article on  eatingwell

My PD history is unlike any I've read. I started having psych issues: Anger/rage, paranoia, obsessing. My family and close friends thought I was crazy. This started about 8 years before an official diagnosis of Young Onset Parkinson's Disease (YOPD because diagnosed under 50 years old).   The day I started Sinemet in May 2012, I felt euphoric. The Sinemet helped all non-motor issues (listed above), as well as gait, choking, arm swing, facial masking, etc. I have one big favor to ask here, PLEASE tell me I am not the only person where weird psych behavior preceded  the motor symptoms (like gait, arm swing, etc), and by so much time.   THANK YOU.

 from  parkinsonsdisease.net : Most people think of Parkinson’s disease (PD) as a neurodegenerative motor disorder. When you picture someone with Parkinson’s you imagine someone with a  tremor , slowness of movement and difficulty controlling movement. But in recent years more has been learned about the  non-motor symptoms  of PD. There are a broad range of symptoms that range from  anxiety  to weight management and beyond. read more on   parkinsonsdisease.net

 PD is shitty, we all know this. What's worse is the treatment of ignored caregivers.  24/7/365 thankless job dealing with the PD psych issues, non-motor issues. The motor issues suck, but doctors have a specialty in neurology for the shaking, stiffness and freezing.  What about the nasty moods, paranoia, and other psych issues specific to what is inside our Parkinson's heads?  Anybody? here is some stuff for caregivers, on parkinsonsdisease.net/caregiving