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Shelley H. | Parkinson’s Fitness Coach & Advocate, Pharmacist

@empoweredwithparkinsons

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💪🏻Empowering people with Parkinson’s Disease
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Shelley @empoweredwithparkinsons , you are an absolute rockstar. I'm having an "MSESSY" kind of day messing up my posts so I just took a video of such important information (remix wasn't loading). Recently when I was doing my monthly caregiving for my uncle in San Diego, I saw something about this. Things got a little hectic and I didn't look into it. What I needed was someone like you to explain it the way you do. With your incredible background and knowledge for people who have no medical background at all. Thank you so much for sharing this incredible information. In addition, it's a reminder what fundraising does. None of these things were available when my dad was alive. None of the medications you even mentioned were available for my dad. And now it seems like options continue to come. We can't do that with that fundraising. We can't do that without fully understanding these new medications. Thank you so much for taking the time to explain this. And this is why I call you a rockstar ⭐
Just another reason to light a fire under me to continue to aspire to be an amazing fundraiser 🧡

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#GoTeamFox #parkinsons #YOPD #rocktumbling #rocktumbler

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Exercise is not one size fits all. Shelley, a Parkinson's fitness coach, explains that while movement is essential to living well with Parkinson's, it doesn't have to look like going to the gym. #parkinsonslookslikeme #parkinsons

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This was a great day for us! I just want to thank all the individuals in the Parkinson's community for posting content that inspires me and teaches me how to live an abundant life in the face of a disease that's trying to take everything from me! Thank you thank you thank you!!! I'm sure I will miss someone but for the professionals who share their expertise with us I can't thank you enough. I live in a small town and I don't have access to PD resources so your content truly helps my entire family! And there are so many of my friends and fellow Parkies who inspire me and support me. Thank you for helping me on this journey
@idaho.bluebird

#parkinsons
#parkinsonsbedamned
#dontgiveup
#doitbold
#keepgoing

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"The room is buzzing." Shelley, a Rock Steady Boxing coach, describes the camaraderie of being in class together. #parkinsonslookslikeme #parkinsons

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FREE Online Webinar Recording from NFOSD. I presented on dysphagia (swallowing disorders) and adaptive devices for practical strategies to support safer, more independent hydration for people living with swallowing difficulties.

https://swallowingdisorderfoundation.com/meet-the-maker-lifemere/ #dysphagia #swallowingdisorders #alsawareness #speechtherapy #speechpathology

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Wednesday (hump day) can leave you feeling flat as the weekend seems far away. I was very fortunate to be sent a pack of 52 motivational cards all related to Parkinson’s. Some are informative and intended to advise or offer help and positivity. Some are laughing in the face of some awfully debilitating symptoms. I’m 12 years in off a diagnosis of YOPD in 2014. I am pretty positive most days, I’m still mobile but have my moments ! And as we know how unpredictable this disease can be, I try to go with the flow rather than make concrete plans. I will share these cards with you, confessing “ I am an expert in making a catastrophe out of anything “🤦‍♀️ They really are such a good idea and such a shame they are no longer available. So here’s today’s 2 cards to read and hope you take something from them that lifts you.

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I am incredibly thankful for the education these experts have taken the time to share with us!
#utahyopd #yopd #themoreyouknow🌈 #publichealth #parkinsonsdisease

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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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