Amber Hesford builds a Young Onset Parkinson's support group community through TikTok

Re-Post from LIVE show on radioparkies.com (9/21/21)

 

The 2 Mikes and Heather chat with Amber Hesford

Amber, after being diagnosed with Parkinson’s in her early 30’s, Amber decided to spread awareness about PD on TikTok. Not only did she find a lot of followers (over 75,000). She found a great group of friends with and without Parkinson’s to help on her journey.

This brave young woman also posted a video of herself getting DBS (Deep Brain Simulation) surgery in July of 2021. https://www.tiktok.com/share/video/6983348098537950470

We had an open and honest discussion on numerous topics, Including

Raising young children as a young single mother with Parkinson’s

Programming issues with DBS

The importance of humor with PD

Anxiety

And how the love of her entire family helps her through the tough times

Catch 2 Mike’s Parkinsons Podcast LIVE every Thursday at 6 EST on radioparkies.com!

Like/rate/follow our podcast at:

https://podcasts.apple.com/us/podcast/2-mikes-parkinsons-podcast/id1537782063

https://twomikespdpodcast.podbean.com/

Listen to all radioparkie shows at:

https://www.mixcloud.com/RadioParkies_usa/

Re-post of Thursday, October 14, 2021 show at 6:00 EST on Radioparkies.com. We had a fun and informative chat with John Lehr who is the CEO of the Parkinson's Foundation.

 

John has nearly three decades of nonprofit fundraising and management experience, with a strong focus in the voluntary healthcare and medical research sectors. John played a key role in merging two legacy Parkinson’s organizations into the Parkinson’s Foundation in 2017. Since joining the Foundation, fundraising revenue has grown each year by double digits, allowing the Foundation to expand its mission programs. John led the efforts to open seventeen regional chapters to better serve local Parkinson’s communities.

 

Listen in LIVE on radioparkies.com to hear inspiring Parkinson's stories, every week on Thursday's at 6:00 PM EST

 

like/rate/follow our podcast at:

https://podcasts.apple.com/us/podcast/2-mikes-parkinsons-podcast/id1537782063

https://twomikespdpodcast.podbean.com/

Listen to all radioparkie shows at:

https://www.mixcloud.com/RadioParkies_usa/

RePost of Thursday 10/7/21 show at 6:00 EST on radioparkies.com we have Parkinson’s advocate Brian Reedy.Tune in and hear a heartfelt discussion about Grief and Parkinson’s, grief, and the loss of a loved one and much more.

About Brian:Diagnosed 12 years ago, Brian is deeply involved as an ambassador for the Davis Phinney Foundation, with the Michael J Fox Foundation Policy Forum, The Parkinson’s Alliance as well as the World Parkinson Congress. Listen in to hear his story.

-With Heather Kennedy

like/rate/follow our podcast at:

https://podcasts.apple.com/us/podcast/2-mikes-parkinsons-podcast/id1537782063

https://twomikespdpodcast.podbean.com/

Listen to all radioparkie shows at:

https://www.mixcloud.com/RadioParkies_usa/

Anna Brown Grill was reaching the peak of her business career when she heard the news about her diagnosis of young onset Parkinson’s Disease.  Check out her story as she talks about how she was able to hide her symptoms at work for 10 years, deal with anxiety and how she fought back with Rock Steady Boxing NOVA and Rock Climbing. Today she is building a strong network and connecting people with Young Onset Parkinson’s Disease.

Anna encourages all in the YOPD community to join events. Her goal is to provide relevant and convenient programing in a supportive, positive environment, helping those with YOPD not just live but thrive!

Track List: Kesha, Salt n Pepa, Pink, Bel Biv Devoe and Mark Ronson with Bruno Mars

Re-Play of Thursday 9/23/21 Show at 6 EST ON radioparkies.com

 

We start off with Scott Rider

Scott, diagnosed with Parkinson’s 15 years ago,

He was on our show a few weeks back,

when we all learned about his great work with his ride across America (https://pdacrossamerica.com/) in addition to the development of Adaptive housing for PWPs (People with Parkinson’s)

Tonight, he brings us Pat Hogan

Pat is executive vice president of Business Development for Kizik’s

The hand’s free shoe

Listen in as we hear the Story of how Pat and Scott met and the benefits of a hands-free shoe

If you are looking to buy Kizik Shoes check out the website and use the discount code, put in in SHOEHOUSE in discount code when checking out at https://kizik.com/

Ten percent savings for each customer and a percentage of sales will benefit the Parkinson’s Foundation

 

Next up we have another PD Hero Trent Maclean. Trent was officially diagnosed with PD

12 years ago. Listen in and learn about the benefits of Table Tennis and Virtual Reality gaming specifically Ping Pong and boxing.

Trent has started a movement called PING PONG FOR GOOD.

“Ping Pong for Good is a movement for brain health. We are raising awareness about the importance of exercise + brain health, with an emphasis on the many benefits of playing ping pong for your mind, body, and mood. It’s not only good for you: it’s fun, can be done”

Check out the website at https://pingpongforgood.org/

RePost of 9/2/21 show

 

Starting off we have Joseph Golomboski talking about the walk at Goddard state Park on September 18th (Interview starts around 5 minutes in) https://www.apdaparkinson.org/community/rhode-island/

 

Next up we have Ned Neuhaus talking about a fundraiser for rowing 1,000,000 meters (group) in one day on October 23rd!

https://www.rowtoslowparkinsons.com/ (Interview starts soon after 17:30)

 

Finally, we have Scott Rider who talks about a documentary in the works as he rides across America, coming soon. (https://pdacrossamerica.com/)

Scott also talks about his 3:00 AM idea of Adaptive housing for PWPs (People with Parkinson’s) and building a community.

Lastly Scott talks about free genetic testing for PWPs!

and much more…(Interview starts around 36 minutes in)

PODCAST FROM THURSDAY 8/26/21 LIVE SHOW ON RADIOPARKIES.COM

 

Every now and then you see someone who always has a kind word to lift your spirits. Today we’re honored to speak with Scott Carlisle who classifies himself as a cheerleader for all of us in the Parkinson’s community.’ Listen in and you’ll notice Scott is much more than that, he’s a friend, father, husband, hockey player and simply a great guy who uses terms like ATTITUDE OF GRATITUDE and EMBRACE THE SUCK to describe his battle with Parkinson’s.

Repost of Thursday 8/12 show on radioparkies.com

Bill Bucklew is at it again but this time he’s working with friends and will walk 40 miles each day starting (September 14th) in England for 17 days culminating in the London marathonHelping Bill will be John McPhee, Jim Kroeger and Kevin Murray, Following along as these amazing people attempt to bring people/corporations together, spread awareness and raise money for the cure.

“The long Walk for Parkinson's" will start Sep 14 and finish on Oct 3. My friends in England/USA,, get out and support Bill, Jim Kevin. and John. Walk with them, donate, spread the word. 

Feel free to share the attached video

https://youtu.be/PM4N0DBSMC8

RePost of Thursday August 19, 2021 LIVE show on radioparkies.com.

Gavin Mogan and I chat with the very inspiring Christine Allison Jeyachandran. Listen in as we zone in on her latest project "Would you sell your house to save your mother" https://www.youtube.com/watch?v=5vAlkXmsSSk&t=268s

Her bio:

When Christine changed her life around for the better through Exercise, she realised many people in the country and region she lived in, didn’t know about the benefits of exercise in managing Parkinson’s Disease. She started making small steps to help her local community but soon realised it was a bigger problem. There are Spanish speaking professionals (from across the region) who could train and provide resources about Parkinson’s Disease professionals and PwP but they don’t know how to find each other.

So a few of dedicated people started the Alianza Iberoamericana de Parkinson to to create a network to raise awareness about Parkinson's disease and encourage opportunities for sharing, collaboration, and training. Our volunteers are dedicated but we’re looking for partners to help achieve this huge goal.

RePost of Thursday August 19, 2021 LIVE show on radioparkies.com.

Gavin Mogan and I chat with the very inspiring Christine Allison Jeyachandran. Listen in as we zone in on her latest project "Would you sell your house to save your mother" https://www.youtube.com/watch?v=5vAlkXmsSSk&t=268s

Her bio:

When Christine changed her life around for the better through Exercise, she realised many people in the country and region she lived in, didn’t know about the benefits of exercise in managing Parkinson’s Disease. She started making small steps to help her local community but soon realised it was a bigger problem. There are Spanish speaking professionals (from across the region) who could train and provide resources about Parkinson’s Disease professionals and PwP but they don’t know how to find each other.

So a few of dedicated people started the Alianza Iberoamericana de Parkinson to to create a network to raise awareness about Parkinson's disease and encourage opportunities for sharing, collaboration, and training. Our volunteers are dedicated but we’re looking for partners to help achieve this huge goal.