Parkinson's Disease

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I am Marble-Constant - Introduction

I have been a writer for many years, both as a creative artist and an academic. I know words and have no shortage of them, but I have never considered that my voice as an individual was worth documenting in a journal or any type of blog that involved my personal story (or stories).

I was diagnosed with Young Onset Parkinson’s Disease (YOPD) at 34, about a month before my 35th birthday, after nearly a year of tremendous suffering.

The journey from my PCP being concerned I had MS (which I had little awareness of and was immediately relieved to learn it was Parkinson’s disease, which was one of the few neurological diseases I was aware of) to having each specialist put me into smaller categories that eventually led me to the serious question of YOPD, which was confirmed with the tremendously successful trial of Carbidopa / Levodopa that supported every clinical symptom I had been dealing with for years.

I had no idea so many of the different random health issues I had been suffering were all connected to this singular disease.

Never in my wildest dreams did I imagine I would reach the point in my suffering that I prayed for a Parkinson’s diagnosis if it meant there was some relief to be had. That is the low I hope no one ever has to experience, and if you have, I hope that we can connect- regardless of what trials you face (YOPD or no).

I am here to write, to learn, to grow, to connect, and to hope my voice is not lost on a community of people who might understand, when the body of people I have largely known my entire life are still wrestling too greatly with their own processing of this to handle the gravity of it.

More to come.

#ParkinsonsDisease #MightyTogether #ADHD #Autism #DegenerativeDisease #Grief

(edited)
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My 2025 in review: Health Edition

General health appointments: 5

Specialist appointments: 12 (rhuemotology, ophthalmology, podiatry, endocrinology)

Allergy: 20 appointments, 76 allergy shots

Infusion: 13 appointments, 32.5 hours sitting in the infusion center

Imaging/testing (not labs): 2 MRIs, 2 1-week long heart monitors, 1 stress test, 1 tilt table test, 1 heart ultrasound

Mobility aids: 2 mobility aids added to my daily routine

- - - - -

Pre syncope episodes: 3

Vertigo episodes: 5

Anxiety Attacks: 2

I’m proud of myself for speaking up to my doctors about a symptom I’ve experienced my whole life but no one has ever looked into. I’m proud of all the ground techniques I’ve learned this year. I’m happy I found 2 apps that help me with mental health and health record keeping. I’m also very proud of my mom who started her chronic health journey with Parkinson’s this year. She is going to speech classes and sharing information with us (family). Her new diagnosis is frustrating and exhausting but she’s learning and still doing things she loves. 2026, please be gentle to us.

#Uveitis #Glaucoma #ParkinsonsDisease #MentalHealth #Anxiety #ChronicPain #Presyncope #NeurocardiogenicSyncope #AutoimmuneDiseases

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I'm new here!

Hi, my name is lovingcaregiver. I'm here because my sister has been diagnosed with parkinsons, and my friend's son has down syndrome and multiple sclerosis.
I appreciate this community exists.

#MightyTogether

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