Dealing with Parkinson's Disease

If you live with Parkinson's disease (PD), you may have noticed something frustrating: your symptoms seem to get worse when you're stressed. A difficult conversation. A doctor's appointment. Being late. A crowded restaurant. An argument. A family problem. Even something as simple as trying to get out the door on time. Suddenly, your hands may shake more. Your muscles feel tighter. Walking becomes harder. Your voice may change. You may feel frozen-or just feel like your medication isn't working as well as it normally does. You're not imagining it. Stress doesn't cause Parkinson's disease, but stress and anxiety can temporarily amplify many of the symptoms people with PD already deal with. The Parkinson's-Stress Connection When we're under stress, our bodies automatically switch into "fight-or-flight" mode. The sympathetic nervous system kicks in, releasing hormones such as adrenaline and cortisol. That's useful when you need to react qu...

If you use social media products like Facebook, etc. then I'm sure you've seen the chain messages about various causes and topics.  Asking all friends to copy and paste the message and write done in the comments below.  Usually just a waste of bandwidth but when chugging a cup of coffee this morning I decided to repost this one about invisible illness and awareness. I hear it a lot, "you don't look sick". News media adds fuel to this by stalking handicap parking spots for drivers who don't look like they need help. Trust me.  The illness is real and many symptoms are indeed invisible. My point is on the outside you can appear in top condition, ready for anything but inside you're struggling to be out of bed.  Your ignorant jokes and snickering makes you appear even dumber, if that is possible.  Here is one of the messages that circulates around the worldwide web. Don't feel obligated. walked in our shoes and have felt the pain we feel, keep your cruel ...

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 ...

Did you know that Patient Advocate Foundation offers financial help for nearly 150 disease-specific and health equity funds? With a TotalAssist grant from PAF, you can choose how you’d like to use your assistance to cover eligible healthcare costs—including medication copays, coinsurance, and deductibles, health insurance premiums, office visit charges the day of treatment, and administration charges related to treatment. If you’re struggling to afford healthcare costs, check out their eligibility tool to see if you qualify for assistance today: TotalAssist.org

  The HEALTHY BRAINS Act (H.R. 7779) is a bipartisan effort to strengthen federal action on brain health and neurodegenerative diseases like Parkinson’s. It would create new research centers focused on toxic exposures, prevention, education, and national data sharing. Tell Congress to support the HEALTHY BRAINS Act in order to:   • Strengthen collaboration among researchers, health professionals, patients and caregivers • Improve education on reducing toxic exposures and environmental risks  • Expand research training and prevention strategies  • Build national data infrastructure to drive solutions Your voice matters. Learn more and take action today: http://apda.link/HR7779 #Parkinsons #PDResearch #PDAwareness #ParkinsonsDisease #NeurologicalDisorders #Neurology #Neurological  reposted from APDA

 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.

Me when medications are working: Me when meds don’t work or wear off:

April is National Parkinson’s Awareness Month, dedicated to increasing understanding of the progressive nervous system disorder affecting over 10 million people worldwide. Throughout April, organizations like the Parkinson's Foundation and Michael J. Fox Foundation highlight research, advocate for better care, and support those living with the disease, with World Parkinson's Day marked on April 11.  Key Aspects of Parkinson's Awareness Month Purpose: To raise funds for research, promote early diagnosis, and support the community. The Symbol: The red and white tulip is the official symbol of Parkinson’s disease, launched in 2005. Ways to Participate: Educate: Participate in initiatives to learn about symptoms like tremors, rigidity, and non-motor issues (depression, anxiety). Advocate/Donate: Support organizations funding research and public policy initiatives. Events: Join walks, runs, and educational webinars, such as those offered by the American Parkinson Disease Associa...

Who is Checking on the Care Giver?

Parkinson’s Revolution is an indoor cycling experience that combines passion, determination and community to generate awareness and advance our mission toward a cure. Join us across the country on Saturday, February 28, 2026 (in-person or virtually) for a high-energy ride that will make you perspire while being inspired! Register today at ParkinsonsRevolution.org .

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.

Parkinson news from Kirsten Gillibrand’s New York Minute Fighting for the Older Americans Act The  Older Americans Act  (OAA) is critical to support Americans living with aging-related diseases, like Alzheimer’s and Parkinson’s. At this week’s Aging Committee hearing, Kirsten heard from witnesses about the importance of OAA-funded programs like nutrition assistance, home care, transportation assistance, and community engagement in helping millions of Americans live with dignity and independence. She called for the reauthorization of the OAA to continue these vital support programs. Individual casework is Kirsten’s top priority. If you need help with any federal agency, contact her at  gillibrand.senate.gov

 You are invited to participate in a research study about social connections and attitudes about aging in people with Parkinson’s disease ( PD ).   Your participation is voluntary. If you choose to participate, you will be taken to a website to complete an online survey about social connections and attitudes about aging. The survey is expected to take between 30 and 45 minutes.  Take survey here .

At first, I didn’t want to tell anyone. When I was diagnosed with Parkinson’s disease, it felt like a private earthquake—my world shifted, but from the outside, everything looked the same. I thought if I just carried on as usual, maybe people wouldn’t notice. But Parkinson’s has a way of showing itself. The the frozen face, the slow movements, the voice that gets softer without me realizing it—it all adds up. Eventually, people began to ask if I was okay. That’s when I started telling the truth, at least privately to closer friends and family. I’d try to sound calm, even casual. “Yeah, I’ve got Parkinson’s,” I’d say, “but I’m doing all right.” I didn’t want sympathy or a sad look. I just wanted people to understand. Most of them reacted kindly. They said things like, “You’re strong.” “You’ll beat this.” “Let me know if you need anything.” And they meant it—at least in that moment. But as time went on, the calls slowed down. The texts got shorter. Invitations stopped coming. It’s not th...

Forget 8 minute doc appointments-for around $20 out of pocket, you can get a more detailed appointment. My movement disorder specialist checkup usually involves multiple doctors that are thinking, exchanging ideas, and keeping me in the loop. My input is heard. The appointment can last over an hour, could be 90 minutes sometimes. Maybe I just never noticed it before but code G2211 changes my appointment from a quick hello you look great, see you in six months to an actual doctor exam. Have you seen a billing code of G2211 on any of your bills? A simple explanation of the medical billing code from ChatGPT: The code G2211 is used by doctors when they believe your visit involved extra time, effort, or complexity beyond a standard appointment — usually because of your overall health situation or ongoing treatment needs. Here’s a breakdown in plain language: "E/Ms" stands for Evaluation and Management services — basically, your regular checkups or doctor visits. "G2211"...

Trying to explain to someone how much my spouse does for me is not easy. When they ask how my spouse is doing, my jaw tightens, my heart races and I want to disappear. But I calmly and politely say "she's fine."   So I asked ChatGPT to help me out and describe the life a caregiver.  Life of a Caregiver, described by Chat GPT (AI) There’s a job out there more demanding than most people can imagine. It’s 24 hours a day, 7 days a week. No salary. No sick days. No weekends off. No benefits package. It comes with high emotional stress, physical exhaustion, and a level of responsibility that never lets up. It’s called being a caregiver. Specifically, a caregiver to someone with Parkinson’s disease. When people think of Parkinson’s, they picture the tremors. The slowness. Maybe they’ve seen someone shuffle or freeze mid-step. But what they don’t see is the person behind the scenes—the one making sure medications are taken on time, adjusting the daily routine around unpredictable...

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...

I heard this Elton John tune covered by Joni Mitchell and heard the words so loud this morning. I thought I'd share it with you. Joni Mitchell, Annie Lennox, Brandi Carlile and Sista Strings interpret Elton John's classic song "I'm Still Standing" at the 2024 Gershwin Prize for Popular Song concert honoring Elton John and Bernie Taupin at DAR Constitution Hall in Washington, D.C., March 30, 2024. "I'm Still Standing", with lyrics written by Bernie Taupin, was released as a single on Elton John's 1983 studio album Too Low for Zero.

April is Parkinson's Awareness Month and World Parkinson's Day falls on April 11, 2025. This day commemorates the birthday of Dr. James Parkinson, who first described the condition in 1817. During Parkinson's Awareness Month, organizations and individuals work to raise awareness about Parkinson's disease, provide support to those living with the condition, and advocate for research and treatment advancements. Consider making a donation Several nonprofit organizations dedicated to Parkinson's disease offer vital resources, support, and research funding. Key organizations include the Parkinson's Foundation, American Parkinson Disease Association (APDA), and the Michael J. Fox Foundation for Parkinson's Research.  Here's a more detailed look at some key organizations: Parkinson's Foundation: This organization provides resources, support, and research funding to improve the lives of people with Parkinson's disease. They offer a helpline, web...