TSC Talks!16 Okt 2020

TSC Talks! TSC and COVID~A Conversation on Impact. Hosted by Daniel Price

TSC Talks discusses TSC in the time of Covid. Guest host Daniel Price joined Jill Woodworth for a roundtable discussion with guests Rob Grandia, Emilie Peters, Heather Still, Meghan Bittner, Joshua Stroup and Cathy Evanochko. Check out the time stamps below to find the information you feel will be most helpful and check out the links at the end of this document.

Link to A.I. Transcription of the entire episode: https://otter.ai/s/QagpwwA0SPSIP-kaJs9Sng

Meghan shares that her doctor believes she had Covid very early on before we knew it was in the US. (6:53)
Heather discusses what happened when her young son was admitted to the hospital for monitoring of seizures and how Covid complicated that. (8:46)
Kathy discusses what it was like for her in Canada when Covid first hit. (10:24)
Rob discusses what it was like to be on Capitol Hill in D.C. advocating for TSC support from politicians who obviously knew the seriousness of the virus (11:17)
Josh and Emily discuss how difficult it is to find a job right now as new college graduates (13:24)
Daniel discusses being furloughed from his job and how covid has impacted him. (15:20)
Jill notes that her life has not changed that much due to Covid (17:02)
Meghan discusses facing a serious health challenge during the shutdown. (18:28)
Rob discusses telehealth and its benefits and limitations. (21:27)
Josh speaks about his fear of going to hospitals for routine care at this time. (23:34)
Emily does not like telehealth visits and prefers seeing her doctors face to face in person. (24:32)
Heather and her children became sick with Covid. (25:48)
Kathy speaks about the disruption of care due to Covid (26:33)
Meghan shares about being in Minnesota and having life and medical care disrupted due to the racial justice riots and protests. (32:13)
Further discussion about telehealth, its benefits and its shortcomings (33:58)
The challenges of remote learning (37:23)
Discussion of stress, anxiety and mental health concerns during Covid. (47:01)
Stress and seizures (51:23)
TSC, stress and covid, we are used to adjusting (53:23)
Rob discusses the additional layer of stress caused by wildfires on the west coast (58:51)
Meghan discusses the riots and protests in Minneapolis (1:00:46)
Emily discusses the difficulty of being a new college graduate seeking a job (1:02:17)
Daniel, also on the west coast, talks about the widfires and the additional level of physical and mental stress they cause (1:05:34)
Kathy finds the blessings during Covid (1:06:25)
Rob misses the normalcy of going on dates with his wife (1:07:58)
Megan and Emilie talk gratitude (1:09:56)
Finishing up with one word that sums it up for everyone (1:14:07)

Rob Grandia Links:
https://www.tsalliance.org/individuals-families/adults/adult-regional-coordinators/ https://www.tsalliance.org/about-us/our-leadership/ https://www.pe.com/2016/05/19/health-walk-helps-fight-disease-that-attacks-internal-organs/ https://www.facebook.com/rob.grandia.3

Daniel Price Links:
Facebook: https://www.facebook.com/daniel.price.1694
Instagram: https://www.instagram.com/pricendaniel/
LinkedIn: https://www.linkedin.com/in/daniel-n-price-7270156a/ https://www.tsalliance.org/wp-content/uploads/2019/06/06-June-Adults-with-TSC-Newsletter.pdf https://www.rareiscommunity.com/2019/11/27/navigating-a-forever-home-with-a-rare-disease-daniels-story/

Cathy Evanochko Links:
Facebook: https://www.facebook.com/cathy.evanochko https://www.tscanada.ca/about-us/board-of-directors/ https://www.raredisorders.ca/about-cord/ https://www.tscanada.ca/about-us/

Emilie Peters Links:
Facebook: https://www.facebook.com/emilie.n.peters Instagram: https://www.instagram.com/emilie_peters_/ LinkedIn: https://www.linkedin.com/in/emilie-peters-95ba421a3/ https://prezi.com/p/pflgttwujtiq/what-is-tsc/

Heather Still Links:
Instagram: https://www.instagram.com/hstillwaters/ LinkedIn: https://www.linkedin.com/in/heather-still-478a9991/

Joshua Shoup Links:
https://www.timesonline.com/7b8a15ce-62c5-11e7-8fcb-ffa59dd8ad56.html Facebook: https://www.facebook.com/joshua.shoup.3 LinkedIn: https://www.linkedin.com/in/joshua-shoup-88777a1aa/

Meghan Bittner Links:

Thanks for tuning in! We hope to produce another "TSC and COVID Convo" in early January. If you are interested in participating, contact TSC Talks on any of our social media channels.

Become a supporter of this podcast: https://www.spreaker.com/podcast/tsc-talks--1666046/support.

Denne episoden er hentet fra en åpen RSS-feed og er ikke publisert av Podme. Den kan derfor inneholde annonser.

Episoder(155)

TSC Talks 3.0 (not) Research ~ In the Stone Chamber

Taking a break from the harsh closed loops and hunkering down in dis stone chamber to give a little freestyle riff for this episode from the stone chamberno links except go watch the video. the audio ...

6 Mai 3min

TSC Talks 3.0 Research~Episode 10

I bust through the third wall or whatevs in Episode 10 of TSC Talks 3.0 Research. Dropped the whiteboard til the end. Summed up the 9 episodes and added a bit on the end about CPTSD, TAND and the fact...

29 Apr 35min

TSC Talks 3.0 Research~Episode 9

In this episode, I get into mitigation strategies related to the increasing reliance on tech with the arrival of 6G particularly for those living with a chronic and or rare disease that is on multiple...

22 Apr 36min

TSC Talks 3.0 Research~Episode 8

Episode 8 of TSC Talks 3.0 Research... continuing on with the extensive history of the rare disease Tuberous Sclerosis Complex, the set up for data harvesting and gene editing and the inevitability of...

15 Apr 30min

TSC Talks 3.0 Research~Episode 7

The history of Tuberous Sclerosis Complex.they're juicing it.Some queries related to the complexity of epigenetic variables and the overlords decision to focus on genetics only for the sake of "simpli...

8 Apr 33min

TSC Talks 3.0 Research~Episode 6

In Episode 6 of TSC Talks Research 3.0, I finish up the discussion of CRISPR and TSC and the trajectory, I get into cannabis and the way they've deglimmered exploration of consciousness for those with...

1 Apr 32min

TSC Talks 3.0 Research~Episode 5

In this episode I share information on the risks and side effects of CRISPR for individuals with TSC and in general as well as go into how those affected with TSC are "test bunnies" for much of this n...

25 Mar 28min

TSC Talks 3.0 Research~Episode 4

TSC Talks 3.0 Research, Episode 4Here's my ongoing convo with AI delving into the funding behind rare disease research, non profits and how there are vested interests in continuing to bypass the full ...

18 Mar 30min