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Reka Janisse

@pd.family

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Young Onset Parkinson’s disease at 39, HYROX athlete women’s open Dallas 2024 & 2025, Wife 💍 Mother of 👦🧒🧒, still slaying in the corporate 🌏.

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PDID now stands for Personal Dignity ID — not Parkinson’s Disease ID.

It can be humiliating having Parkinson’s in public.

Explaining takes energy I don’t always have.
And sometimes, the words just won’t come.

This idea was born on a solo flight to Canada.
Middle seat.
Severe dyskinesia.
Three hours of knowing I was disrupting the person next to me—
and desperately wanting him to know I was okay…
without having to explain it.
Without crying.
Without apologizing for my body.

Somewhere over that flight, I imagined a solution.

A way to start the conversation—
on my terms.
With clarity.
With dignity.

So I created PDI™ — Personal Dignity ID.
An emergency lock screen for your phone that explains what’s happening—without you having to explain.
Something I now use every single day.
Something I’ve been quietly testing in public—at the salon, at the gym, at restaurants—
and feeling my independence come back with it.

This isn’t just a product.
It’s personal.
It’s protective.

And it’s for people living with Parkinson’s, chronic illness, neurological conditions, invisible disabilities—and for caregivers who want to protect someone they love.

PDI™ is not a replacement for a medical ID.
It’s an additional layer of communication—on your terms.

🔗 Explore it here: rekajanisse.com (link in bio)

#ParkinsonsDisease #ChronicIllness #DisabilityVisibility #InvisibleIllness #ChronicDiseaseAwareness #pdid #pdprotocol #pdfamily by @pd.family

I eat bad days for breakfast, lunch & dinner — the macros are better anyways 💪😅🔥🥦🐔
#FunnyMotivation #ParkinsonsStrong #MacrosMatter #GymHumor #ResilientAF credit @_agoodcultleader by @pd.family

Eating alone. 🥄 Using my non-dominant hand… weighted utensils… trying to do everything “right.”

This is dyskinesia. The uninvited guest that Parkinson’s brings.

👉 At home, I eat less and less because it’s exhausting.
👉 In public, I avoid meals altogether—worried I’ll spill, shake too much, or make everyone uncomfortable.
👉 And here’s the raw truth: before my diagnosis, if I saw me eating like this, I might’ve thought “that person is on drugs.”

That thought breaks me. 💔

So I share this—not for pity, but to normalize Parkinson’s. To strip away the shame. To remind you that sometimes what you see in public isn’t the full story.

If you see me eating out one day, just know I’m fighting harder than you can imagine—and maybe… give me a pass. 💙

#ParkinsonsAwareness #Dyskinesia #NormalizeThis #InvisibleBattle #ParkinsonsStrong #ChronicIllnessAwareness #Neurodiversity #CompassionOverJudgment ✨ by @pd.family

Who knew a SWEATER could spark a Parkinson’s science investigation?! 🤯

Yesterday, I shared how uncomfortable I become when anything touches my neck. The number of people who responded with similar experiences surprised me!

Turns out, there’s a name for this: tactile sensory over-responsivity, also known as tactile defensiveness.

And the neuroscience is fascinating!

Two studies published in 2026 documented differences in sensory processing among people with Parkinson’s, including altered tactile discrimination and increased sensitivity to certain mechanical stimuli.

Researchers are investigating how dopamine depletion and changes in brain networks affect sensory perception.

Important distinction: These findings don’t establish that Parkinson’s directly causes clothing-related tactile defensiveness, but they provide scientific reasons to investigate the connection.

Parkinson’s is so much more than tremors!

#ParkinsonsDisease #ParkinsonsCommunity #ParkinsonsResearch #SensoryProcessing #YoungOnsetParkinsons by @pd.family

One year later. Same battle. Different day. 💔

In October 2025, I begged you not to take your health for granted.

Now it’s November 2026, and I’m still fighting.

Today, I struggled through jumping lunges. My feet froze. My muscles tightened. My body fought me every step of the way.

And yet, I kept moving.

When I hear people complain about going to the gym, I wish they understood something.

I would give ANYTHING to trade places with you.

To move without thinking. To exercise without negotiating with my nervous system. To have a body that simply responds.

I don’t share this to make you feel guilty. I share it to remind you that movement is a privilege, not a punishment.

You don’t HAVE to work out. You GET to. ❤️

One year later. Still struggling. Still showing up. 🫶

#ParkinsonsDisease #ParkinsonsAwareness #YoungOnsetParkinsons #GratitudeForHealth #PDfamily by @pd.family

🧠 DO WOMEN WITH PARKINSON’S SPEAK BETTER THAN MEN? SCIENCE SAYS THERE MAY BE DIFFERENCES! 🔬

PD FAMILY, an October 2026 study published in npj Parkinson’s Disease examined 104 people with early Parkinson’s using acoustic speech analysis, dopamine imaging, and functional MRI.

🔬 THE FINDINGS:

🔹 Men generally showed greater speech impairment, particularly in articulation.

🔹 Women demonstrated stronger functional connectivity between certain brain regions.

🔹 In men, speech difficulties were associated with BOTH dopamine loss and altered brain connectivity, while in women, they were more closely associated with connectivity differences.

🧠 Researchers suggest sex-related neurological differences may help explain speech impairment, although protection against speech decline has NOT been established.

❤️ PERSONALLY: People frequently compliment my ability to speak clearly despite young-onset Parkinson’s, especially after my July 2026 focused ultrasound. Could there be science behind it? Perhaps!

📚 Source: Rogers et al. (2026), npj Parkinson’s Disease.

💬 PD FAMILY: Has Parkinson’s changed your speech? Men and women, share your experiences below!

#ParkinsonsDisease #ParkinsonsResearch #WomenWithParkinsons #YoungOnsetParkinsons #ParkinsonsAwareness by @pd.family

POV: Someone asks me, “How have you been feeling lately?”

Elizabeth Holmes walked so the Parkinson’s community could shuffle. 💀🤣

#YouCanSeeEverything #ElizabethHolmes #ParkinsonsDisease #YoungOnsetParkinsons #ParkinsonsHumor by @pd.family

🎤 EVERY SINGLE NIGHT… 🎶

🎵 I pray that my meds will kick in right! 💊
I’m so tired! 😩
My left foot is so tight! 🦶
I’m out of control! 💃
I’m feeling so OLD! 👵🤣

😂💀 PD FAMILY, WHERE’S MY GRAMMY?! 🏆

When Parkinson’s gives you tremors, dystonia, fatigue, and unpredictable dopamine levels… you might as well turn your neurological dysfunction into a musical production! 🎭🤣

Because apparently having Parkinson’s wasn’t dramatic enough. Now I’m writing songs about it. 💀

If Adele had Parkinson’s disease… THIS would be her greatest hit! 🎤🤣💊

#ParkinsonsDisease #YoungOnsetParkinsons #ParkinsonsHumor #ChronicIllnessHumor #PDFamily by @pd.family

🧠 PD FAMILY: IS HOPE ACTUALLY BACKED BY SCIENCE? 💙

“Hope is not a strategy.” And I agree. But hope combined with informed research, promising scientific findings, and meaningful action? That’s powerful.

Michael J. Fox once described hope as “informed optimism.” And research suggests hope may play an important role in how we live with Parkinson’s disease.

🔬 THREE STUDIES WORTH KNOWING:

1️⃣ Early-Onset Parkinson’s | 262 Participants
Researchers found that psychological factors, including hope, optimism, resilience, and self-efficacy, were associated with better quality of life. Together, psychosocial factors explained 62% of the variation in quality-of-life scores.

2️⃣ Hope-Based Intervention | 31 Participants (2020)
A study of the Strength, Hope and Resourcefulness Program found improvements in hope over time, although differences between treatment groups were not statistically significant.

3️⃣ Hope & Healthy Behaviors | 42 Participants (1997)
Researchers identified associations between hope and health-promoting behaviors, including interpersonal relationships and spiritual growth.

⚠️ These studies demonstrate associations and potential psychological benefits, NOT that hope slows neurodegeneration, reverses Parkinson’s, or cures disease.

For me, hope is what connects today’s animal research to tomorrow’s clinical trials. It inspires advocacy, awareness, funding, and participation. But promising treatments still need rigorous human testing.

My emotions fluctuate just like my symptoms. Some days I’m unstoppable. Other days I’m struggling.

Hope doesn’t erase my Parkinson’s. Gratitude doesn’t erase my suffering. But both help me keep moving forward.

💙 PD family, are you still hopeful? Or have you given up hope?

Share your emotions in the comments below. There’s room here for optimism, frustration, grief, and everything in between.

#ParkinsonsDisease #YoungOnsetParkinsons #ParkinsonsResearch #ParkinsonsAwareness #ParkinsonsCommunity by @pd.family

🧠 PD FAMILY! Could you imagine STEM CELL THERAPY to help repair the Parkinson’s brain WITHOUT BRAIN SURGERY?!

What if naturally occurring cells from your own skin or connective tissue could potentially help protect and regenerate damaged brain tissue—without surgically implanting cells into your brain?

🔬 Meet MUSE cells! (Multilineage-differentiating Stress-Enduring cells.)

Unlike the dopamine-neuron replacement therapies being developed by BlueRock Therapeutics and researchers in Japan, which require surgical transplantation, MUSE cells are being investigated for their ability to migrate toward injured tissue following intravenous or intranasal administration.

WHY IS THIS EXCITING FOR PARKINSON’S?

Preclinical research has demonstrated:

🧬 Expression of dopamine-neuron-associated markers

🧠 Potential neuroprotective and anti-inflammatory effects

🔬 Improvements in certain motor measurements in Parkinson’s animal models

A June 2026 scientific review explored their potential for neuroregeneration, neuroinflammation, and brain repair.

⚠️ THE SCIENTIFIC REALITY: MUSE cells have NOT been proven to replace dopamine-producing neurons in humans, reverse Parkinson’s, or slow disease progression. They are NOT an FDA-approved Parkinson’s treatment.

As someone living with young-onset Parkinson’s disease, I find the possibility of regenerative stem cell therapy without invasive brain surgery incredibly exciting!

Could these cells eventually protect surviving neurons, reduce neuroinflammation, or restore lost dopamine function? We don’t know yet, but the scientific possibilities deserve further investigation!

📖 Read the research:
https://pmc.ncbi.nlm.nih.gov/articles/PMC13257467/

💬 PD family, would you consider stem cell therapy if it didn’t require brain surgery? Are you excited about MUSE cells? Drop your thoughts and questions below!

#ParkinsonsDisease #StemCellResearch #MUSECells #ParkinsonsResearch #RegenerativeMedicine by @pd.family

“Did focused ultrasound actually help your Parkinson’s disease?”

I get this question ALL the time! And my answer? I think my social media speaks for itself. 😉

Before focused ultrasound, I struggled with debilitating tremors, dyskinesia, and the emotional toll of living with young-onset Parkinson’s disease.

Today, I’m navigating recovery, rebuilding my strength, training for my third HYROX competition, and rediscovering a level of confidence I thought I had lost.

Was it a cure? Absolutely not. Do I still have Parkinson’s symptoms and challenges? Every single day.

But did it change my quality of life? You be the judge. 😉

Focused ultrasound isn’t for everyone, and every patient’s outcome is different. The decision is deeply personal and deserves careful consideration with your medical team.

I share the victories AND the setbacks so you can see what life after focused ultrasound really looks like.

Follow my journey. The story is still being written. ❤️

#ParkinsonsDisease #FocusedUltrasound #YoungOnsetParkinsons #ParkinsonsAwareness #LifeWithParkinsons by @pd.family

You see my productive side. My strong side. My impressive side. But you don’t see the other 23 hours of my day. 💔

I struggle with apathy every single day. And despite my efforts to show the reality of living with young-onset Parkinson’s disease, so much of this invisible battle goes unseen.

Apathy isn’t laziness. It isn’t a lack of ambition. It’s a neurological symptom that can rob you of motivation, initiative, and the ability to act—even when you desperately WANT to.

And it extends far beyond Parkinson’s disease.

Here are my two personal strategies for navigating it:

1️⃣ Be the CEO of your life for the first 8 hours. 👑

I prioritize what matters most during my first eight waking hours because I know my motivation and energy often decline as the day progresses. This is MY pattern, not a universal rule. I plan around it instead of fighting it.

2️⃣ Know what’s below your yellow line. 💛

What can slide? What can wait? What truly doesn’t matter today?

Communicate those boundaries with your family and your team. Make sure they understand and support them. And if something below that line creates significant contention, perhaps it deserves a higher priority.

Living with apathy means constantly negotiating between what you WANT to do and what your brain will LET you do.

To everyone silently struggling with this, my heart genuinely goes out to you. I know how exhausting and isolating it can be. I’m so sorry you’re experiencing it.

Please remember: Your productivity does not determine your worth. ❤️

PD Family, do you struggle with apathy? What helps you get through the day? Let’s help each other. 👇

#ParkinsonsDisease #YoungOnsetParkinsons #ParkinsonsAwareness #Apathy #InvisibleSymptoms by @pd.family