Patient-led video resources 🤝 Shining light on long-term health conditions 🌟 #MS #Parkinsons

Joined February 2021
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A little intro to me, and the @WorldPDCongress twitter take over. Let me know what you guys want to see and I'll do my best to keep posting the content you want! ❤️ @Dr_SF_Hussain @ParkinsonsUK
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LivedHealth retweeted
My heart is broken💔: As friends & family know, my wife was pregnant with our 2nd child, & about to begin her 2nd trimester. A few days ago she had severe pains, & bleeding, and had to go to the emergency room. There, it was discovered that our baby no longer had a heartbeat. Devastated doesn't come close to what that feels like. Unfortunately for people like us, because of the current laws in the state of Texas, that was only the beginning of this nightmare. Jess (my wife) had an "incomplete miscarriage", and what needed to happen, what was best for HER, and her health, was to terminate the pregnancy, and get the baby out. The doctor gave her a medication that would move this process along, and sent her home. Where, apparently we would be handling it ourselves. We were told it might take a couple of attempts before it worked. I'll let you decide how you feel about that. After a long, painful night of the equivalent of early labor, the baby was still with her. So, we went back to the Emergency Center to get the 2nd dose. A new doctor was on call. He was an older man. You could hear him in the hallway as he said, "I'm not giving her a pill so she can go home and have an ab*rtion!". Being well aware that our baby no longer had a heartbeat. Then, he came into the room to say, and I quote: "Considering the current stance. I'm not going to prescribe you this pill". Then, just sent us on our way. The "CURRENT STANCE"?! Did he really just say that?! No one should ever have to hear their wife say: "Get this dead baby out of me!". Can you even imagine how that must feel? The pain, and the bleeding continued. So, we decided to go to another hospital, about an hour away. There was a female doctor on call there, and we thought we might have better luck. I should probably mention, the procedure to get the baby out is called a D & C. It's scary, & traumatizing, but sometimes necessary in situations like ours. Especially in emergency circumstances. So we get to the next hospital. They take Jess in, ask her a bunch of questions, do a new scan... confirm that the baby is still there, with no heartbeat, and then disappear... for hours. Only to come back in and keep asking the same questions over and over. It's becoming clear that they're primary concern is NOT my wife's health. Instead, they seem to be worried about the legalities involved. So, they decide it is not "enough of an emergency" to perform the D & C. They do, however, prescribe another, stronger, final dose of the medication for us to try again... at home. So, we go home to try again. Another long day/night of early labor pains. Only to discover my wife UNCONSCIOUS in the bathroom. Having to pick my wife's cold, limp body off of that bathroom floor, not sure if I was about to lose her, is something I will NEVER forget. She had to be rushed to the hospital. By this point she had lost so much blood, and bodily fluid, her body gave out. They were able to stabilize her, give her the fluids she needed, and we came back home yesterday afternoon. We were also able to confirm that our baby was no longer with her. Now, not only do we have to live with the loss of our baby... we have to live with the nightmare of what we just experienced because of political and religious beliefs. MY WIFE'S HEALTH SHOULD HAVE COME FIRST. PERIOD! God knows what mental and emotional damage this has done. If you consider yourself a staunch "pro-lifer" ... 1) You've never been through what we just went through, and 2) You should take a long, hard look in the mirror and reevaluate your reasons for supporting such a cold, barbaric, ignorant point of view. It's not that black & white, and it's never going to be. If you think your "Pray To End Ab*rtion" sign in your yard is "Christian", I suggest you revisit the teachings of Jesus and try again. If you support these laws that make ab*rtion illegal, and result in people being put through what we just were, you should be ashamed of yourself. I've never been so angry, or heartbroken... and the devastation I'm feeling must pale in comparison to what my poor wife is feeling.
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LivedHealth retweeted
4 Apr 2024
Last week I paid a plumber £250 for an hours work ... this trust would pay a consultant brain surgeon £80 for the same hour. WTAF??
When doctors are already feeling undervalued and underappreciated with massive real-terms pay cuts, @RoyalSurrey County Hospital has decided to further slash bank staff wages by up to 27%. We urge the Trust to rethink this decision and start valuing their essential staff.
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I simply don't know how to use ×, formerly known as Twitter. Over on insta I shared a reel yesterday which has now had over 100K views. The same reel on Twitter not in double figures. I'm trying to raise awareness of #parkinsons. Any advice anyone?
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Vicky, @Dr_Shafaq_Hussain and Jodie discuss their takeaways from @WorldPDCongress From simple every-day solutions to ground-breaking technology, there's something for everyone 👉 buff.ly/3XXQ2C0 #Parkinsons #WPC #Research
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Getting active is a great way to manage Parkinson's! What type of exercise do you like to do to keep your body moving? #LivedHealth #ParkinsonsAwareness #Parkinsons #ParkinsonsDisease #ParkinsonsResources #ExerciseRegime
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Are chronic illness ‘influencers’ helpful or harmful? Let us know your thoughts ⬇️ Both Vicky and @Dr_SF_Hussain, who live with young onset #Parkinsons, chat about their experience of the online community in today's new video 👉 bit.ly/PDInfluencers_YT #YOPD #SocialMedia
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The feedback from our viewers speaks for itself 🗣️ We'd like to thank the @axisfoundation for continuing to support our videos with their generous donation towards our latest series, smoldering #MS. Read more about their donation ➡️ buff.ly/43kGUbG
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How could I leave out the night our NHS PD group got together? Most definitely one of my personal highlights 😊 @Dr_SF_Hussain @WorldPDCongress
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I'm also going to share this video of the lovely @Thefitnessmum1 with @MattEagles - 2 lovely people!
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Another one of my favourite moments @WorldPDCongress was @chinyererachel speaking of her experiences with PD in Africa. There is still so much stigma we MUST address: youtu.be/1tf3jNTvuUs

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LivedHealth retweeted
12 Jul 2023
Portrait of @ohkathleenkiddo in her hospital room after spinal surgery. So glad you can walk and are no longer in pain from that, Heather. Much 💕 to you! #portraitphotography #fujix100f x.com/studiosree/status/1679…
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Hi, Shafaq here! You'll be glad to hear that my time doing LivedHealth's Twitter takeover is nearly at an end. I'm just going to share some of my fave moments from @WorldPDCongress youtu.be/DWGnqz3dFo0 Listened to this a few times and it still makes me cry!
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How do you find #MRI scans? This simple solution STOPS Britt's claustrophobia ⛔ If your medical team are aware of the obstacle, they can offer a solution. We don’t have to “suck it up”. Our bodies go through enough. #MS #MRI #Claustrophobia #Advocacy
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Absolutely!
Meet (from left) Strength. Optimism. Hope & Perseverance. #parkinsons hasn’t got a chance. #yopd
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Last plenary session @SoaniaMathur and comedy courtesy of Paul Mayhew Archer.
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We got to chat with the team at @SYMBYXbiome .... here they tell us about their product.
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Was a delight to finally meet @DrISubramanian and our friend Rosa, @JoanneGhani We also got to meet and have dinner with our NHS Parkinson's group, a long overdue meet! With a few token extra guests 😁 @jonny_acheson @AddisonClare @JYaldren @JoanneGhani @KCampanello
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Day 2, the discussions and learning continued. @wilmavanderberg and @Hlashuel - both discussing a-syn and Lewy bodies.
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LivedHealth retweeted
10 Jul 2023
Part 2 of 2
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LivedHealth retweeted
10 Jul 2023
Part 1 of 2: Delirium in Parkinson's - thank you @rachaellawson85
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