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This is Parkinson’s

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Targeting a Cure Omaaahaaaa!!! First time host, @lisavolenec absolutely crushed it with over 100 golfers coming out to the Omaha location! So happy to be there to support my friend 🧡

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Apathy is more than simply “not feeling like it.” It is a common non-motor symptom of Parkinson’s that can affect motivation, interest, and the ability to get started—even with activities that are important or enjoyable.

Have you experienced apathy? Share your experience in the comments.

#wellnesswednesdays #apathy #parkinsons #parkinsonswellness

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POSTURE PART 2: Don’t forget your core.

Yesterday we talked about posture starting with lifting and lengthening through the rib cage—instead of simply pulling your shoulders back.

But that’s only part of the picture.

Once you create that length through the torso, think about what’s happening below the ribs.

✨ Gently engage your core
✨ Bring your pelvis into a comfortable, neutral position
✨ Think of the pelvis dropping straight down rather than tipping forward or tucking excessively
✨ Allow the glutes to support you
✨ Keep breathing!

Now notice how your whole body organizes itself.

Your ribs are lifted.
Your shoulders can settle down and back naturally.
Your core is supporting you.
Your pelvis is stacked underneath you.
And your lower body is helping create a strong foundation.

Good posture isn’t about forcing yourself to “stand up straight.”

It’s about creating alignment from the inside out—and having enough strength and mobility to support that alignment as you move.

Try it along with me and tell me: Can you feel the difference?

Live Better for Longer™

#Posture #CoreStrength #HealthyAging #MoveBetter #alivefitandfree

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He recorded a message for our daughter's wedding day.

She's six.

She lost a tooth this week and cried about the tooth fairy's handwriting. She is nowhere near a wedding.

But he sat down on a Sunday and recorded it anyway.

Not because he's planning to be gone. Because he refuses to gamble her wedding day on whether his voice still works by then.

He talked to a version of her that doesn't exist yet. A grown woman. Someone's partner. Someone standing at the beginning of her own life.

He told her what he thinks she should know by then. He told her about her mother. He told her he'd been in the room the whole time, one way or another.

Then he scheduled it for a date almost twenty years away and closed the app like he'd just paid a bill.

That's the part that undoes me. How ordinary it looked. How enormous it was.

Is there a message your person should record now, for a day that's still decades away? 👇

DM LEGACY to record it before the moment needs it. 🤍
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#TheLoveThatOutlives #LeavingALegacy #Parkinsons #Fatherhood #OpenWhen

record a message for a future wedding, preserving a father's voice for his daughter, digital legacy for families, messages for future milestones, Parkinson's family voice preservation, leaving a legacy for your children, record now for later, voice messages for the future, memory preservation, father daughter legacy

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I built a technology company at my kitchen table.

I have eight kids. I'd never written a single line of code in my life, and my husband was diagnosed with Parkinson's.

That's my whole résumé.

People ask me how I did it, and I think they want something impressive...

A background. A plan. Some reason I was qualified...

I wasn't.

What I had was a very specific fear. That one day our kids would go looking for their dad's voice and find photographs instead of him.

So every night, after the house went quiet, I sat at that table and figured out one more piece of it. Then the next, for two years. Not because I knew how but because I couldn't not.

That's what OpenWhen is. A passion project to preserve my husband's voice for our eight children, turned into a mission to help other families do the same.

You record a message — voice, video, or written — and you choose the future moment it gets delivered. The graduation, the wedding, the one-Saturday morning.

I didn't build it because I'm a founder. I built it because I'm a wife who ran out of the ability to wait.

If you've been putting off recording your person because you don't know how to start, that's the whole reason I built the start for you.

Comment LEGACY and I'll send you everything you need. 🤍

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He says my name a certain way from the other room.

Not when I'm standing next to him. From down the hall. Through a wall. When he needs me but it isn't urgent.

Just my name, with a question mark he doesn't put on it any other time.

I've heard it ten thousand times. I've never once recorded it.

Because it isn't a moment. It's just Tuesday. It's just him, needing to know which room I'm in.

But that's the sound I'd reach for. Not a speech. Not a message. Just my name, from the other room, the way only he says it.

I started catching the ordinary ones last week. My phone on the counter. Recording nothing in particular.

Which is exactly the point.

What's the sound only your person makes that you've never thought to save? 👇

DM LEGACY to start keeping what matters most. 🤍
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#TheOrdinarySacred #LeavingALegacy #Parkinsons #Family #OpenWhen

preserving everyday sounds of someone you love, recording ordinary family moments, digital legacy for families, the sound of your name, Parkinson's family memory preservation, ordinary moments worth saving, leaving a legacy for your children, voice preservation, memory app for families, saving the everyday

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I recorded a message four months ago.

I almost deleted it three times.

It was too long.

I said um too many times.

I cried in the middle of it.

I lost my train of thought at least twice.

I kept it anyway.

Not because it was good.

Because it was real.

I just opened the app and read a piece of it back.

Four months ago, I told my daughter the specific thing I see when I look at her that I have never once said out loud.

I cried when I read it back.

Not because it was sad.

Because the version of me from four months ago said something the current version of me has been trying to articulate ever since, and couldn't.

But she did.

That imperfect, too-long, um-filled recording did.

And it's scheduled.

For the morning she needs it most.

The recording you keep meaning to do perfectly,

the imperfect version of you already has everything they need to hear.

DM LEGACY to start recording what matters most. 🤍

#OpenWhen #LeavingALegacy #Motherhood #DigitalLegacy #Family

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We have an inside joke.

I can't explain it to you.

The words don't carry the thing that makes it funny.
You would have had to be there
and nobody was.
That's the point.

When he says it, something in me completely relaxes.

Not because it's funny.

Because it means he sees me.
The specific version of me that nobody else has access to.

That's what an inside joke actually is.

It's not the joke.

It's the proof that someone has been paying attention long enough
to build a language only the two of you speak.

And when they're gone,

the language goes with them.

You can describe the joke.
You can try to tell it to someone else.

But the version of it that lived between you,
the specific frequency of it,

is gone.

Anthony and I have had ours for years.

I've never once recorded it.

What's the inside joke between you and your person
that nobody else would ever find funny?

You don't have to explain it.
Just tell me it exists. 👇

DM LEGACY to be part of what we're building. 🤍
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#LeavingALegacy #Family #Parkinsons #Fatherhood #DigitalLegacy

preserving inside jokes and shared language, recording relationship memories, digital legacy for couples, ordinary relationship moments worth saving, memory preservation for families, preserving the specific frequency of a relationship, leaving a legacy for your children, life after loss community, recording loved ones before they're gone, voice memories of loved ones

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Every night after the kids were in bed.

I sat at the kitchen table.

I opened the laptop. I built until I was done with that part. I closed it. I went to sleep. And I started again the next day.

Two years.

It's difficult, being a caregiver and a mom and a founder all at the same time.

Making sure everything is still taken care of while you're trying to build something that has never existed before.

But here's what I want you to know.

I didn't build this alone.

Anthony built this.

Every day he fights a disease that is trying to take his voice, and he keeps fighting.

That's not separate from OpenWhen.

That's the whole reason OpenWhen exists.

Our kids built this.

Every moment I was at the kitchen table instead of fully present with them.

Every sacrifice they made without knowing they were making it.

Everybody has paid a price for this.

And now everybody gets to see what it does.

I am so proud of my husband.

I am so proud of my kids.

I'm proud of what we built together, without any of them ever sitting at that table.

DM LEGACY to be part of what we built. 🤍

#OpenWhen #Parkinsons #LeavingALegacy #MomFounder #DigitalLegacy

OpenWhen build story, digital legacy platform founder, building a startup as a caregiver, Parkinson's disease family support, founder story collective sacrifice, voice message scheduling app, record messages for future delivery, Parkinson's family caregiver founder, leaving a legacy for your children, digital memory preservation for families

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She didn't know she needed it until she couldn't stop crying. 🤍 What day would you record that you want your kids to hear in the future? Start with one message today, link in bio to record.
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#OpenWhen #Parkinsons #LeavingALegacy #MomFounder #DigitalLegacy

OpenWhen build story, digital legacy platform founder, building a startup as a caregiver, Parkinson's disease family support, founder story collective sacrifice, voice message scheduling app, record messages for future delivery, Parkinson's family caregiver founder, leaving a legacy for your children, digital memory preservation for families

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India is six years old.

She was born after the diagnosis.

She has never known a version of her dad whose hands don't shake sometimes.

To her, that's just Daddy.

But there is a question coming.

I don't know when.

I just know that someday she is going to be old enough to understand what Parkinson's means. What it has already taken. Why some mornings are harder than others.

And she deserves to hear her dad answer that.

In his voice.

In his words.

The version of him that exists right now, before the disease takes any more of either of them.

So I opened the app.

I asked Anthony to record a message for the day India finally asks why.

He sat with it for a minute.

Then he talked to the version of her he hasn't met yet.

The one who is going to have questions.

The one who deserves to hear it from him, not someone else's memory of what he might have said.

That recording is saved now.

Scheduled for when she's ready.

She doesn't know it exists.

But it's there.

DM LEGACY to start recording what matters most. 🤍

#OpenWhen #Parkinsons #LeavingALegacy #Fatherhood #DigitalLegacy

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He doesn't know he makes that face.

I've watched it from the pickup line for years.

We're in the car. Radio on something quiet. He's watching the school doors.

And when they open,

his whole face does something he doesn't control.

It's not a smile yet.

It's earlier than a smile.

It's the look a father makes when he's been waiting all day and doesn't quite know how to hold all of it.

He doesn't know he makes it.

And I have never once filmed the parking lot.

I have a thousand photos of the kids coming out of those doors.

Not one of Anthony waiting for them.

Because the waiting doesn't feel like a moment.

But I think the waiting might be the whole thing.

That face, before the doors open, before the kids see him, before he decides how to react, is the most unguarded version of how much he loves them.

And it has been happening twice a day, for years, with nobody recording it.

What's the face nobody has caught yet? 👇

DM LEGACY to be part of what we're building. 🤍

#LeavingALegacy #Fatherhood #Parkinsons #Family #DigitalLegacy

preserving father's everyday expressions, recording ordinary family pickup moments, Parkinson's disease family moments, digital legacy for fathers, ordinary moments worth saving, memory preservation for families, leaving a legacy for your children, Parkinson's family caregiver support, preserving a loved one's presence, recording everyday family love

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