Connecting ALS

In November we are celebrating National Family Caregivers Month, which means recognizing all the incredible individuals who commit to caring for a loved one. That is the theme for the month and we’ve got some compelling caregiving content to share with you.

First on the docket is a conversation with Danielle Carr and Shaun Olson, both of whom have considerable experience as family caregivers. They also happen to be close friends and it was interesting to hear them share some of the lessons they learned over the years.

In the second segment we took advantage of the expertise that exists within our team at The ALS Association in an interview with Care Services Coordinator Jennifer Myhre. Jennifer has been assisting caregivers in our region for many years and helped paint a clearer picture of both the challenges they often face and the resources that are available to help.  Jennifer also talks about respite care as a resource, and that's something we did a deeper dive on during our time with Jennifer on episode 2. Find it in your podcast feed or on our site at: https://www.connectingals.org/episodes/home-health-voice-banking-and-clinical-care

To jump ahead to the segment you can also head over to RadioPublic:  https://radiopublic.com/connecting-als-6ND5Xl/s1!46a0b#t=3346

To wrap today’s show we're also introducing a new segment meant to provide a glimpse into the lives of individuals and families living with ALS. We’re calling it ‘A Moment With…’ and this month our producer, Garrett, spent some time with the Seidl family from the Twin Cities of Minnesota. 

Find a transcript of this episode and examples of John's work on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

On Wednesday we were fortunate to have Gary and Kathy in the Connectivity Center. They were here to share their experiences as caregivers with our support group as part of National Caregivers Month. Each had a lot to say and we felt like this was something worth sharing for those who could not be in attendance. For further resources visit: http://webmn.alsa.org/site/PageNavigator/MN_8b_caregivers.html

In the conversation they bring up the value of Respite, our Durable Medical Equipment Loan Pool, and the Hrbek-Sing program. For more information on any of these programs please visit the following links:

http://webmn.alsa.org/site/PageServer?pagename=MN_8b_PS_Respite_Program
http://webmn.alsa.org/site/PageServer?pagename=MN_8_PS_Equipment_Process
http://webmn.alsa.org/site/PageNavigator/MN_8d_PS_Communication_Needs.html

If you would like information about attending a support group please visit: http://webmn.alsa.org/site/PageNavigator/MN_8_SupportGroups.html

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

This month we were very fortunate to secure some time with arguably the most influential ALS specialist in the world, Dr. Richard Bedlack of Duke University. As always, Dr. Bedlack has a number of irons in the fire and we chatted about ALSUntangled, his ongoing study of ALS reversals, and where he sees research heading in the near future. 

For our second segment, I sat down with Jennifer Hjelle, the Executive Director at our Chapter of The ALS Association to discuss some of the recent feedback she has received from individuals and families impacted by ALS while on a three state listening tour.

As discussed in the segment, Jen will be continuing her listening tour in St. Cloud at the Stearns History Museum (235 33rd Ave), on Thursday, October 17 (10/17), at 4:00p and in Sioux Falls at the Ronning Library (3100 E 49th St), on Wednesday, October 30 (10/30), at 4:00p. Visit our Facebook page for more information. To RSVP, email [email protected] or call 612.672.0484. 

Follow ALSUntangled on Twitter and be sure to check out their podcast thanks to CReATe Connect.

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

This month we were able to connect with two very influential figures in the world of ALS. First we met with The ALS Association’s President and CEO, Calaneet Balas, who gave us a window into what the greater organization is working on, including how global research is funded and tracked. Calaneet is also the Chair of the Board for the International Alliance of ALS/MND Associations, so it was really interesting to discuss a range of topics with her.
 

That interview is followed by a phone conversation with Dr. Nathan Staff from the Mayo Clinic in Rochester, Minnesota. Dr. Staff is deeply involved in ALS research and knows the ins and outs of that universe as well as anyone we’ve ever met.

Find a transcript of this episode on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

This month we go deep on the topic of feeding tubes with two experts from the ALS Center of Excellence at Hennepin Healthcare in Minneapolis, MN. We then spend time discussing the mind body connection with globally recognized yoga instructor and author, Matthew Sanford. Both interviews feature some excellent perspective and we hope you find this episode particularly helpful. If you do, please let us know via our Facebook and Twitter channels or send us an email at [email protected].

To learn more about the ALS Center of Excellence at Hennepin Healthcare visit: https://www.hennepinhealthcare.org/specialty/neurology/als-center-of-excellence/

For more information about Mind Body Solutions visit: http://www.mindbodysolutions.org/

Find a transcript of this episode soon on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

We had the good fortune of lining up three fantastic guests on a variety of topics this month. We first brought in Dr. Sam Maiser, from Hennepin County Medical Center, to explore the benefits of palliative care following an ALS diagnosis. That was followed by a heartwarming phone conversation with Minnesota Twins icon, Kent Hrbek — where he opened up about his family’s experience with the disease. And the episode wraps up with some valuable firsthand insight from Stacy Lufkin about her journey as an ALS caregiver and fierce advocate for the cause.

Find a transcript of this episode on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

On this month’s episode we explore three topics of importance for many in the ALS community. First up, we connected with Michelle Trautman of Perham, Minnesota and Daniel Vance from Team Gleason in New Orleans to discuss the process of voice banking. We then welcomed Dr. Ezgi Tiryaki into our studio to talk through the current model of clinical care for ALS. And lastly, we sat down with Donnie Raveling of St. Paul and Jennifer Myhre from The ALS Association to scratch the surface on the topic of home healthcare.

Find a transcript of this episode on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

We're dropping a special bonus episode of the pod to address a developing issue that requires all of us to take action! The Centers for Medicare and Medicaid (CMS) have mandated that noninvasive ventilators (bipap) go through a competitive bidding process to set the price and award contracts to equipment companies (i.e. equipment companies submit bids on how much it will cost for an item; CMS takes the lowest bid and will only reimburse companies at that lowest price).  The problem with competitive bidding in this situation is that many companies will stop supplying the devices because they can no longer make money (or will lose money) by providing these.  This could make it incredibly difficult for individuals to get access to these devices and worse have access to a company close by that can repair them if something goes wrong. 

To send a letter visit: https://alsa.quorum.us/campaign/20341/

For a transcript of this episode visit our post on Tumblr.

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

Welcome, everyone, to Connecting ALS, a podcast dedicated to all facets of the disease, that we will produce monthly from the headquarters of the Minnesota, North Dakota, South Dakota Chapter of The ALS Association, in St. Paul Minnesota.

For our debut episode, we had the opportunity to sit down with Ryan Tofteland to discuss ALS advocacy and his role as a voice for the community. We were able to connect with  Dr. David Walk from the University of Minnesota to get his view on the current state of ALS research, as well as his own work in the field.  We were then joined in studio by young ALS advocate, Serena Robb, so she could pose some important questions that have been on her mind. And finally, we chatted with Beau Bedore of the Minneapolis VA Health System and Kristin Wallock of The ALS Association about how smart home tech is changing lives.

In conversation, Beau also mentioned some new research recently published in Nature. The article is titled Speech Synthesis from Neural Decoding of Spoken Sentences. This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

For a transcript of this episode visit our post on Tumblr. 

This episode was produced by Garrett Tiedemann and is brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.

Connecting ALS is a podcast dedicated to all facets of the disease, coming to you from the Minnesota, North Dakota, South Dakota Chapter of The ALS Association.

Each month, we’ll highlight the latest technological and research developments, discuss advocacy efforts happening across the country, and most importantly, hear from individuals and families living with ALS on topics relevant to them. 

Our hope is to educate, inspire, and bring together the diverse communities impacted by ALS.

Subscribe now at ConnectingALS.org or wherever you get your podcasts, and look for our first full episode in May.

For a transcript of this episode visit our post on Tumblr.

Connecting ALS is produced by Garrett Tiedemann and brought to you by the Connectivity Center at the ALS Association MN/ND/SD Chapter.