We all know that MS is a misunderstood disease that shows up differently for each of us. Each week an episode will be released that'll share the highs and lows of this unpredictable disease. My hope is that these episodes will shed some light for those who are newly diagnosed and those of us who have been living with it for years. Each week we will chat with someone who has been effected by Multiple Sclerosis, whether that be someone who lives with it, a family member, spouse, nurse or friend.
Meditation and Multiple Sclerosis with Lexi Uff
Find the Reassess Your MS interactive assessment tool at reassess.com.au
Today on MS understood we chat with Lexi Uff. We talk a lot about staying aware of our symptoms and keeping an eye on ever the ever changing nature of our disease. We talk about meditation and how that has been the best thing Lexi has added to her arsenal and how we should all find what works for us. I noticed throughout this episode and Lexi agreed that even after 12 years, journeys of acceptance and learning about our diagnosis can move and weave back and forth as we learn to work with our body as things change. And we talk about why Lexi decided to share her story publicly on Instagram.
This episode of MS Understood is sponsored by Novartis Australia and the Reassess Your MS
Prehabilitation and Multiple Sclerosis with Dr Samantha Balistreri
Today on MS Understood we are chatting with Dr Samantha Balistreri. She's a physical therapist who works primarily with people who have multiple sclerosis and has even written a book for those wh have a new diagnosis called Breakthrough Multiple Sclerosis: For the Newly Diagnosed and Minimally Impaired. You can find the link check it out in the show notes. In this episode we talk about what prehabilitation is and why it's so important for those of us with MS, how there is primary and secondary fatigue in MS, how important it is to be the team captain of your care team. I really enjoyed this chat with Sam and I hope you get something out of it.
What To Do When Newly Diagnosed With Dr. Samantha Benson
Breakthrough Multiple Sclerosis: For the newly diagnosed and minimally impaired
Find Sam on Facebook
Find Sam on Instagram
Bravery and Multiple Sclerosis with Christy Batta
Today on MS understood we chat with Christy Batta. She has a beautiful hand lettering business called Human Plus Kind Co where she makes hand lettering about her MS experience. My favourite quote she shares is Because MS. We talk a lot today about the fears around others expectations of us living with an invisible disease and how this has impacted Christy's experiences. Christy talks about bravery, how there are different types of bravery and how some bravery quotes are really just toxic positivity. Christy so generously shares how she thought she had accepted her diagnosis 10 years ago but is now realising that she hasn't. I think this is so valuable to share, acceptance is like grief, nonlinear.
Human Plus Kind Co Instagram
Human Plus Kind Co Etsy
Find me on Instagram - @Clare.Reilly
Mountaineering and Multiple Sclerosis with Katy Glenie
On this episode of MS Understood we have Katy back to talk about how her mountaineering trip went. Her story is really one that makes me want to get up and go, make some sweet goals and start moving towards them. I'm so excited to be able to share her story with you.
Find Katy on Instagram
Reframing adventure and multiple sclerosis with Katy Glenie
Today on MS understood we chat with Katy Glenie. We cover a lot of things in this episode. Katy talks about how she has a meditation break in the middle of the day, as this allows a mini reset so she can feel refreshed for the afternoon. Katy mentions that she sees her neurophysio over zoom and how well that works. Just as a reminder for those of us who don't have a neuro specific physio in our area. Katy also chats about reframing adventure and her next big adventure. In this chat we talks about her plans to go mountaineering up a 3000 meter peak in New Zealand. If you enjoy this chat with Katy, make sure to check out the next episode for an update on how her trip went.
Find Katy on Instagram
Grief and Multiple Sclerosis with Jo Betz
Today on MS Understood we are chatting with Jo Betz, who is giving grief a voice. I first heard Jo's story about loosing her husband suddenly on another podcast and knew that I needed to talk with her for the MS Understood podcast about grief. We talk about the 5 stages of grief and how it's a great initial framework but doesn't list all of the emotions that we go through. We talk about the b******t 'self care' and how on those days of deep grief it's really important to look after our basic needs. While Jo's experience of grief is around death and ours is around an incurable illness there are so many similarities between how we process these incredible emotions. I hope you get something out of this chat, just as I did.
Jo Betz on The Choice with Amy Bett
Jo Betz on Instagram
More about Jo and her Grief Journal
Find me on Instagram @Clare.Reilly
I love this podcast! So real and raw while also inspiring and uplifting. Great job, Clare. Keep up the good work!!
Real & insightful conversations
These conversations about MS are so helpful for me as a person living with MS. It is so powerful to know I am not alone in this challenging experience & there is a lot I can learn from what others have gone through, too! Thank you so much for this valuable resource for the MS community!