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.
Soulful Simplicity and Multiple Sclerosis with Courtney Carver
After working in a high powered, incredibly busy job Courtney noticed she had developed vertigo and was struggling to walk in a straight line. After her diagnosis Courtney focused on simplifying and being less stressed, one habit at s time. The thread of simple and stress free are strong throughout Courtneys life.
We talk about the line in the sand, the before and after that comes from a chronic illness diagnosis and how it often feels self indulgent to really take time to care for ourselves with out a life changing diagnosis.
Courtney’s beautiful book, Soulful Simplicity inspired me to create more physical space in my home to create more emotional and mental space.
There’s so many great tidbits throughout this interview, I really hope you find something to take from this episode.
Find Courtney on Instagram
Find Courtney’s work here
Find Courtney's podcast here
A Conversation About Multiple Sclerosis With My Family with Steven
Today on MS understood we chat with Steven. Steven shared a story that is all too familiar, being diagnosed as a young man at 16 and how confusing this can be in the formative years, when being a teenager is hard enough on it own.
We talked about what am amazing financial support the NDIS is, and Steven not only receives the support but works for the NDIS and is so grateful to be able to give back.
Steven shared with us about the book he wrote for his children, and now it’s a children’s book that can explain this crazy neurological disease. His book is called A Conversation About Multiple Sclerosis With My Family.
Conversations About Multiple Sclerosis with My Family by Steven Koutsodontis
HSCT trials in Australia with Hayley
Hayley was diagnosed quite quickly, and after having two failed treatments she has been recommended to join the stem cell treatment at St Vincents hospital in Sydney. We talk about the eligibility criteria, why it’s still a trial in Australia, and why it’s such a difficult decision to make.
Hayley is going to do a video journal of her stem cell process. I found this such an interesting chat about a different method of treatment available for MS in Australia.
Follow Hayley's journey on Instagram
Other chats about HSCT:
Deciding on HSCT treatment with Victoria
What it’s like to have HSCT as a treatment with Shereena
Living with completely invisible MS symptoms with Sarah from Vitality Law
This episode of MS Understood is sponsored by the Reassess Your MS campaign by Novartis Australia, helping people with MS to monitor their symptom changes and have informed discussions with their healthcare teams.
Reassess Your MS Campaign
Sarah shares with us about her diagnosis battling with a newborn, an unprecedented pandemic and a new business. Sarah talks about how her career in the law doesn’t always fit with having MS.
Sarah talks about being able to define the difference between ‘new family’ tiredness and MS fatigue. Living with almost completely invisible symptoms is a battle in working in the legal profession, from finishing work earlier that traditional legal profession hours, not wearing high heels and working through cognitive issues. Sarah talks about how beneficial is has been to opening her own business and managing her MS. There’s a lot of gems in this episode and I really hope at least one of them lands for you.
Find Sarah on Instagram
Multiple Sclerosis and Discrimination in the workplace with Catherine Brooks
What it's like to HSCT as a treatment for MS with Shereena
When we recorded this interview Reena was in hospital in the process of receiving HSCT treatment for multiple sclerosis. After being diagnosed at 17, Reena was told for years that her MS was mild, even while having yearly relapses, and not to worry about taking medication to help stop progression of her disease. During this episode Reena talks through the process of getting approved for HSCT in England.
Reena talks about what it’s like to be going through the HSCT process. And we both talk about how bloody hard it is to live with multiple sclerosis.
Deciding on HSCT as a treatment with Victoria
This episode changed my life with Brooke Mott
This chat with Brooke was full of so many lightbulb moments for me. We talk about a diagnosis leading to the uncovering of co exisiting conditions. I was activated when Brooke talked about using a wheelchair instead of pushing through. This conversation was a catalyst for my decision to start using a wheelchair. Brooke talks about using medicinal cannabis, and there’s some links to other episodes about MC in the show notes if you’re interested in others experiences.
As mentioned in a lot of episodes we talk about the incredible level self awareness and how Brooke had to really take time to figure out who they were after the MS diagnosis. Unmasking is the term Brooke used and I think that is so accurate.
Medicinal Cannabis and Multiple Sclerosis with Marianna Gaul
Medical Marijuana and Multiple Sclerosis with Matthew “Beardo’ Herakovich
Brooke on Instagram
Thanks for this perfect podcast at a perfect time, after 5 weeks of being newly diagnosed with MS. As a working 38 yr old mum of 2, a lover of podcasts and someone with a big life like all of us, this will be so helpful to understanding how I can start adjusting to a more sustainable life, living with MS. Just really nice to be here so many others stories and what’s worked for them.Thank you Clare!!
I just love listening to Clare’s podcasts. They are real and offer hope as well as great tips and advice. I share these podcasts with everyone I meet, with MS or not.
These podcasts helped me to step out of the dark and focus on my MS & accept it. Full of knowledge & it’s nice to be able to relate. Love them!!