Personal insights on living with Parkinson's Disease, managing symptoms, treatment experiences, caregiver challenges, and improving daily quality of life.
Keep Me In Your Heart (song)
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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.
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...
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...
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"...
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