Living With Parkinson's Meetup: May 2023 - Fear & Shame Part 1

[@catherinewalpole6392]

You are all such incredibly beautiful souls. You inspire me to learn more about this disease and about myself.

[@pamelaquinn8304]

You all are awesome! Your honesty and compassion is inspiring. See you at the. WPC!

[@dixiehuthmaker1623]

Love, love, love these people. Thank you so much!!

[@lorrainebush7670]

Amber your kids are also learning how to be brave when facing a very difficult situation 😊

[@tamragarner7907]

Amber, I have been disabled with seven autoimmune conditions for several years before Parkinson’s. My children have grown into amazing compassionate servant-hearted adults. Your children are blessed!

[@davisphinneyfdn]

Thanks for your kind words! We'll make sure to share them with Amber!

[@nancylw3625]

Thank you i feel I am not alone with my fears and concerns/ You made me a stronger PD 8 year female even if it is 3:00 am

[@JeffTheisen]

Thanks for this. Parkinsons's is kicking my ass right now and this video makes me feel less alone.

[@sharonmaplethorpe9168]

Thank you all for your honesty - and I hope Amber knows how brave she is and is saying what so many of us are feeling❤

[@loriemagee9764]

Hi just watched this today May 28th. Newly diagnosed in Spring 2022. I have just been dealing with Living Day to Day. After watching this, which was Beautiful...I think I might need to take time for Deeper Self Reflection. I don't Know what My Fears are, but I am certain I have Some. Great Talk. Thanks to everyone for Your Honest Heartfelt Sharing. THIS IS a Safe Place to Share.

[@petermay6332]

What a fantastic bunch of people you guys are! It's like I'm watching a session of group therapy that's doing its best work. All that bravery, honesty, affection and empathy, I feel I'm a vicarious beneficiary of your mutual support. I'm seeing parts of myself in almost everyone. And all this from a worldwide Zoom screen. Amazing! And thank you! Peter, Kent, UK 🇬🇧

[@davisphinneyfdn]

Thank you, Peter! Glad to have you and am glad you find these sessions helpful. - Mel

[@sharonmaplethorpe9168]

Kevin is soo funny - I love his humour❤

[@irenemanning182]

Love the sharing❤

[@splashesin8]

Don't know how I missed this one but glad to find it as the podcast version uploaded today. 😊

[@lorrainebush7670]

I had fallen probably over a hundred times over 10 years and was finally diagnosed last November! Falling is the scariest 56:10

[@davisphinneyfdn]

Falls are a challenging aspect of Parkinson's. Here's another video you might find helpful: kzbin.info/www/bejne/nJiyhoiYf9V3qdE

[@angelakindon9839]

Me too!

[@GETTINGPARKINSONs]

Amber, I also have Parkinson’s and was diagnosed 19 years ago. I have swallowing problems or head swollen problems. Choking on saliva regularly. I had swallowing therapy and I have now have normal swallowing. It was a matter of like 40 sessions. He should be a speech therapist do it. Look into it!

[@davisphinneyfdn]

Thank you, Cindy. I love that you stuck to it and saw results. I will be sure Amber sees this.

[@GETTINGPARKINSONs]

@@davisphinneyfdn I did a barium swallow before therapy and after. So the results are verified. Let her know the barium swallow is easy. Its just sips of barium and eating pudding, crackers while sitting. Nothing invasive. Here they use a mobile van that comes to your house. Therapy is twice a week with daily homework, but once your swallow is normal, there is no more therapy or homework. Its much easier and possible to get back to a normal swallow if you start speech therapy at first signs of trouble which is when you have to clear you throat after eating. Pneumonia due to aspiration of saliva (not food) is the #1 cause of death and has a non- pharmaceutical, non-invasive cure (at least for awhile. I don’t know anything about how long this lasts. But Ive finally gained a few pounds and it takes so much less effort to eat. And it’s one less thing to be anxious about. Swallowing therapy is done by speech therapists. It is not “Big and Loud. It is a different therapy than voice and volume. Mine was covered by Medicare. Speech therapists also do cognitive therapy!! How many of us are getting referrals from our MDS at the right time? Are you asked about clearing your throat after meals. If not, educate your MDS. You’ll help. Improve care across the board.

[@lorrainebush7670]

I know what kevin is talking about. the group of friends i hang out with said i was always so much fun and always had humorous comments that kept our group in stitches and then all of a sudden I went 😢 silent

[@FrussieB55]

I was diagnosed with PD in 2013 and this discussion is the first of its kind that I've ever seen. It really touched my heart. I look forward to seeing more discussions.

[@nazsansoni]

where is heather?

[@davisphinneyfdn]

She was traveling that day. She will be back with us in June:)