Living With Parkinson's Meetup: October 2023 - Ongoing Challenges of Living Well with Parkinson’s
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- Опубликовано: 15 авг 2024
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In this month’s meetup, inspired by an audience member’s question, the panelists discussed the ongoing and evolving challenges they face as they live with Parkinson’s. As always, this panel doesn’t hold back, and we’re so fortunate to have them tell the hard truth and share their journeys with all of us.
This content is made possible by the generous support of viewers and listeners like you. If you would like to make a donation please visit: dpf.org/youtub...
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Time Stamps:
0:00 - Introduction
7:18 - Start of talk on ongoing challenges of living with Parkinson’s
9:01 - Optimism and embracing Parkinson’s
12:22 - Experiencing incremental loss
15:25 - Depression, anxiety and worry
18:20 - Medication interactions
20:10 - Grief and loss
23:13 - Injuries and surgeries
24:01 - Humor and going a day at a time
28:12 - Therapy and having someone to talk to
31:29 - What people say can be challenging
38:27 - Speech therapy
39:28 - Differential diagnosis
45:49 - Exercise, optimism and pessimism
49:47 - Humor and the unexpected
51:35 - Don’t sweat the small stuff
54:19 - Conclusion
I just learned from you all that shortness of breath can be part of Parkinson’s! Amazing….i never knew!
Thanks for watching!
Note that shortness of breath can be associated with neurogenic orthostatic hypotension, too: davisphinneyfoundation.org/what-is-noh/
I have learned more from these podcasts than I have from my Neurologist! Thank you, thank you, thank you!
We are happy to be here for you!
What I wish doctors would do when giving their diagnosis is provide a package of information, including local resources. It’s taking me a long time to understand what I myself can do to help mitigate the symptoms, ie exercise.
Thanks for your comment. We are working to get as much helpful information out in as many forms as possible, including some resources intended to be distributed through neurologist offices.
Also, our website has a lot of additional information: davisphinneyfoundation.org/resources/
Same.
Greetings from Germany. I love listening to you. It is a great help for me. You are all so positiv and you cheer me up. I love you all.
Thanks for your message. We're so glad you join us!
I love these monthly meetups 😊
We're so glad! We love them, too!
Thank you. I am newly diagnosed and on a steep learning curve. Nice to hear from others with Parkinsons.
Love, Love, Love this group - it keeps me going ❤
Thanks for your comment and for joining us!
I’m drinking my coffee feeling like I’m with you guys! You are all amazing.
Thanks for spending time with us! Use the link in the description to sign up to join us live on Thursday 11/16, if you're able.
You guys are awesome-each and everyone of you !
Excellent panel discussion! Love you all!
Thanks for your comment!
I need to remember to reach out as well. Thank you all! ❤
Thank you for sharing. Just ran across this and found it informative and encouraging. Thank you for sharing. I appreciate the energy you expended for me.
Thanks for your message! We are so glad you find our conversations helpful.
Wow! You all have been so helpful with this conversation...listening to people that are really dealing with this disease. And I connected with so much of what was discussed here.
I'm new this. I haven't been actually diagnosed yet, but since August of this year I am participating in the Fox Foundations PPMI clinical research.
I have an appointment after the first of the year to hopefully get an "official" diagnosis.
I've had non-motor symptoms for nearly 20 years. So, in my mind I've got PD. It's not a surprise. But coincidently, motor symptoms started to appear after I began in the project. At least I'm starting to connect some dots.
Thanks for your wisdom. I'll be tuning in for more.
Thanks for joining us! We look forward to seeing you next month. If you have any questions or we can be of any help, please don't hesitate to reach out to us by email at blog@dpf.org.
And if you haven't already, sign up to join us live on the third Thursday of each month: davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup/
You guys rock!
The hardest part is that most doctor's appointments are 2 to 3 months out For every specialist you need to see
Thanks for your comment. Managing a calendar of appointments can be a real challenge. Scheduling as far in advance as possible is sometimes important, but then it is hard to predict conflicts. Be sure to offer to be on cancellation lists if you are able to be flexible with your appointment times.
Thank you ALL!! Your comments help so much. This surely is an adventure! Thank you!!
We're here for you! Thanks for watching!
I appreciate that Kristi, about turning off the work stuff at some point when it's just too much. ❤
It's important to set boundaries and take time to rest and rejuvenate!
One of the earlier things, besides my hand writing, was lip tremoring in classical chorus, or Adelines. ...but really as a child even, I had off and on tremors including voice. I worked hard to try and tame a vibrato that would sometimes be there, and sometimes not. I sounded like Johnny Cash answering the phone and I was a five year old girl. As I got older it was kind of encouraging that Dolly was successful with a faster vibrato than mine.
Thanks for sharing. Sometimes less common early signs of Parkinson's, including facial/mouth tremors, are easy to miss or overlook.
I was standing in the doorway of the exam room, and basically the doctor said over his shoulder, “ if I were a betting man, I say you have Parkinson’s” that is how I was told.
Thanks for sharing your story. There's no great way to learn you are living with Parkinson's, but your experience sounds particularly challenging.
Would love to be able to access your humorous reels! Would you be willing to share these? Humor is my go-to also!
Here is Amber's TikTok: www.tiktok.com/discover/amber-hesford-parkinsons
Love you guys so very much. Thank you for your time and sharing.
Thanks for your comment. And thanks for joining us!
What is Ambers social media site where she shares humor that you are talking about
Here it is: www.tiktok.com/@notthefakeamber
I have a time walking..I don't have support from doctors.
Thanks for your comment. Building a strong care team can be a big challenge. This webpage might help:
davisphinneyfoundation.org/how-to-build-your-care-partner-care-team/
Also If you are having difficulty walking, you might benefit from connecting with a physical or occupational therapist. The link below might be helpful.
davisphinneyfoundation.org/physical-therapy-and-parkinsons-panel/
Greetings from Germany. I love listening to you. It is a great help for me. You are all so positiv and you cheer me up. I love you all.
Thanks for your message. We're so glad you join us!