MS Understood

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.

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

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

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

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

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 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

Today on MS Understood we chat with Chris. We talked about the skewed view of disease in the world but particularly when working as a chronic care nurse working with people who are quite debilitated from their multiple sclerosis diagnosis. Living with MS and working in that space is curious and a constant reminder to Chris that is really is a spectrum disease.

We talk about the guilt that arises in our relationships of not being able to do what we once did before diagnosis.

We also talk about toxic positivity and being in denial after a diagnosis and the importance of finding a good psychologist or therapist after a diagnosis.

On today’s episode of MS understood I chat with Victoria, an English expat living in Hong Kong. Victoria talks about her journey to deciding to have HSCT, how her symptoms show up now and how before she was diagnosed, as with so many of us, her experiences and awareness was only with people who lived with physical symptoms of MS.

Victoria’s mum also has MS, so she has grown up with the disease but at the time for interviewing she hadn’t told her mum.

Victoria shares with us why she decided to start the HSCT process, what really impacted her decision and why she started to fundraise for her treatment.

Find Victoria on Instagram

https://instagram.com/hot_m.s?igshid=YmMyMTA2M2Y=

Support’s Victorias Go Fund Me

https://www.gofundme.com/f/victorias-race-for-stem-cell-hsct4vic