Episodi
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A true deep dive into MMN with Dr Jeff Allen, one of the worlds leading experts in the field of inflammatory neuropathies and head of the GBS|CIDP Foundation International Global Medical Advisory Board.
Jeff is lead author of a recently published paper on diagnosing and treating MMN that can be found at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10819864/.
In this conversation we discuss the latest guidelines for diagnosis and treatment of MMN and a range of exciting MMN research developments. It is truly a comprehensive examination of what we know and what we don't yet know about Multifocal Motor Neuropathy.
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Edward Gent joins me to discuss his recent foray into marathon running as part of the Ride for MMN and MMN Awareness Month.
Edward had never attempted anything like this before his diagnosis with MMN, so it was a real step into the unknown. A slightly wobbly one at that given how the condition affects him.
Founder of Health Haven an app that helps connect people to personal trainers, nutrition advisors and other experts to help them achieve their exercise goals, Edward was well placed to find a coach to work with for the event.
In our conversation we delve into what made Edwards partnership with his coach so successful and why finding the right coach is so important. It's not a one size fits all exercise for sure. We also found out how he got on tackling the 26 miles 385 yards he set himself to run!
For information on Health Haven go to https://healthhavenapp.com/ -
Episodi mancanti?
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In this episode I chat with Lynn Rogers about her life with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Lynn is a research scientist who in 2017 found herself experiencing pain and loss of movement that saw her being admitted to hospital 10 days after her first symptoms with significant loss of lower limb movement.
Instead of being on the start line of the Ironman Canada event she had been training for, Lynn found herself starting a long, often tortuous diagnosis and treatment journey. Over many years, Lynn has tried it all when it comes to CIDP treatments, as she and her doctors have searched for answers. She even found herself becoming a patient at the rehab centre she worked in.
Undaunted by the challenges faced in trying to find an accurate diagnosis and a treatment that helped manage her symptoms the best, Lynn has continued to train for and enter Ironman events and to raise money for the GBS|CIDP Foundation International through her athletic endeavours.
Most recently she entered the Lake Placid Ironman in 2023, the story of which is documented in the film Inches to Miles from Athletic Brewing Company. I won't give away how she got on, but needless to say its remarkable that Lynn made the start line, let alone that she competed so hard once in the race. True testament to what can be achieved with a positive mindset and a great team around you.
The film can be found at https://youtu.be/MpjdqtYgDxM?si=BGUKlYaSZA0m7RAN it really is well worth a watch. -
In this episode recorded at the start of GBS|CIDP Awareness Month I chat to Rich Collins CEO at GAIN Charity in the UK.
GAIN stands for Guillain-Barré Syndrome & Associated Inflammatory Neuropathies. It is the only charity dedicated to supporting the GBS, CIDP and MMN community in the UK and Republic of Ireland.Rich joined GAIN at the start of the year and has wasted no time getting to know the community. In this conversation we touch on everything from the challenge of trying to be heard as a small charity and community through to the importance of long term support for those affected by both acute and chronic conditions. Somehow we also manage to weave in discussions about why supporting a football team is like being part of a rare disease community and why we would both love to see a soap opera storyline featuring rare diseases.
Rich and the team at GAIN are looking to grow their reach and impact.
To learn more go to https://gaincharity.org.uk/ and please get in touch with Rich and the team by email at [email protected], on the phone on freephone 0800 374803 in the UK and 1800 806152 in Ireland. They would love to hear from you. -
In this episode of the podcast I chat to Nancy Di Salvo Director of International Affairs at the GBS|CIDP Foundation International. A truly remarkable woman Nancy has has lived through two bouts of Guillain Barre Syndrome (GBS) and with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). In our chat she discusses with me her experience of these conditions and how she has overcome the challenges they have posed, to become an incredible rare disease advocate and support to others affected by the conditions.
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What can those with autoimmune condition do to help manage their condition beyond the treatment prescribed by their doctor? What diet should i be on if i have an autoimmune condition?
Common questions that pop up in the MMN community. So I thought it was time to ask an expert.
in this episode I chat to Kate Costello about her work as a nutritionist to try to "avoid the complicator" and get the heart of the basics of nutrition.
Kate has some simple practical tips we can all try to follow and advice for those who want to go further and get more specific, tailored advice.
To learn more about Kate go to https://www.kate-costello.com/ -
To coincide with MMN Awareness month my first conversation this year is with Anita Brikman, President and CEO of the Plasma Protein Therapeutics Association (PPTA)
A former TV presenter, Anita has dedicated much of her career to educating and empowering people about healthcare matters. Since leaving the bright lights of the TV studio a decade ago she has forged a leadership career in the healthcare sector. In mid 2023 she joined the PPTA, a global trade organisation representing more than 1100 human plasma collection centres as well as the manufacturers of lifesaving plasma protein therapies.
Anita and I chat about a range of topics from the challenges of synthesising important healthcare information into a newsworthy slot on the nightly news, to an in depth discussion about plasma, its uses and the supply challenges PPTA is working to address.
If you want to learn more about the “liquid gold” used to treat a huge range of conditions including MMN then this episode is for you.
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In this episode I chat to James Coxon about his remarkable journey with MMN which has seen him become a world record holding cyclist since he was forced by the condition to take early retirement from his career as a dentist.
From the stress and uncertainty of not know what was causing him to loose shoulder and upper arm strength to riding his recumbent trike in World Championships and winning. This is a truly remarkable story of Making the Most of Now.
To learn more about James you can read his blog at https://onegoodarmtriker.wordpress.com/. To see footage from his 100km record winning ride at Newport Velodrome go to https://www.youtube.com/watch?v=7TLetCC14qc. -
In this episode I chat to Pam Stoikopoulos, Founder and CEO of Big Eye Innovation and member of the Board of GBS|CIDP Foundation Canada.
Pam was diagnosed with Multifocal Motor Neuropathy in 2017. In our conversation we discuss her diagnostic journey, her career in the healthcare sector and her passion for putting the patient at the heart of innovation in healthcare advocacy work. A passion that each and every day influences her work with Big Eye Innovation which she founded in 2021.
To learn more about Big Eye Innovation go to https://www.bigeyeinnovation.com/.
To learn more about the GBS|CIDP Foundation Canada go to https://www.gbscidp.ca/. -
In this episode I chat to Chris Willard. In late 2022 Chris was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) an autoimmune disorder in which the body's immune system attacks the myelin that insulates and protects your body's nerves.
Since his diagnosis, Chris has been on an incredible journey as he has adapted to life with the condition and learnt more about it. in less than 12 months he has written two books about the importance of functional fitness and nutrition in managing his condition and has established a global community for those whose lives are touched by rare disease.
Chris and I chat about his remarkable journey from first symptoms to the amazing work he is doing now and explore how he has had to respond differently to life with CIDP compared to previous medical challenges.
To learn more about the Advocate Voice go to https://www.youtube.com/channel/UC8IY9tZTxIiE1703HQoERTA or https://www.instagram.com/theadvocatevoice/ -
Fascinating conversation with Richard Sperry who has been living with MMN since. Initially diagnosed with ALS, Richard chats about his diagnostic journey, the impact it has had on both him and his family, and much much more.
Among a range of different aspects of his journey and life with MMN, Richard discusses the help his family received from Hope Loves Company. A Not for Profit supporting children and young adults who have or had a loved one battling ALS, Richard has maintained his relationship with the organisation and is now a Board member as well as an active member of the MMN community.
Ohh and yes we talk 80's rock bands because.... well, because we can! -
In this episode I catch up with Claire Schulz Bergman to discuss her recent ALS fundraising challenge which saw her tackle a 380 mile bike ride and raise $40,000 in the process. A truly remarkable effort.
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Conversation with Chelsey Fix , Associate Director of Research and Advocacy at the GBS|CIDP Foundation International. We discuss her work, how it fits into the wider work of the Foundation, and why she cares so much about putting the patient at the heart of her work. We also touch on some of the key advocacy priorities in the USA and across the globe that relate to the Multifocal Motor Neuropathy community.
If you are interested in learning more and/or getting involved in the advocacy work the Foundation does, Chelsey would love to hear from you. You can get in touch via their website https://www.gbs-cidp.org/ or can contact her directly at [email protected]. -
A conversation with Claire Schulz Bergman who after an initial MMN diagnosis was diagnosed late last year with ALS. In our chat Claire talks about her response to receiving a terminal diagnosis and about the amazing work she is doing to raise funds for ALS research
To learn more about her campaign go to https://donate.mn.als.org/team/495344 -
Conversation with New Zealand based Englishman David Savage who recently completed an epic 16 day self supported bike packing ride exploring his limits and raising funds for MMN research.
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In this episode I chat to Brenda Perales, MMN patient, advocate and member of the Board of the GBS/CIDP Foundation International. A truly inspiring woman, in a candid conversation Brenda shares the ups and downs of her MMN story and talks about the incredible work she does to support others in the Multifocal Motor Neuropathy community each and every day.
To learn more about the GBS/CIDP Foundation Symposium in October go to https://www.gbs-cidp.org/2023symposium/ -
Conversation with Edward Gent who was diagnosed with Multifocal Motor Neuropathy in 2018 about his diagnosis, life with MMN and his recent #rideformmn fundraising challenge.
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In the first episode of the podcast I chat to the neurologist Dr Gareth Parry. Gareth is the man who first described MMN in the early 80's. A global expert and member of the GBS/CIDP Foundation's Global Advisory Board Dr Parry is a font of knowledge when it comes to Multifocal Motor Neuropathy and related conditions. In this conversation we discuss everything from diagnosis to treatment and everything in between.
