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Welcome to SPS UNSCRIPTED with your hosts L and M. A podcast discussing life whilst facing the challenges of Stiff Person Syndrome, a rare neurological disease. Join us in our informative, open informal podcast as we discuss a disease so deeply immersed in a medical model and it’s language, often resulting in dehumanisation and loss of self for those with SPS. This podcast follows the journey of two friends, both one in a million, learning to heal, breathe and seek daily gratitude. Join us around the kitchen table as we discuss all things life. A gentle reminder: We are not medical professionals, this is a reflective journey of our lives with SPS whilst remaining under the care of medical teams whose advice we seek and follow. We strongly recommend you consultant your health professional with regards to any questions or concerns. ***Some sensitive content, may not appropriate for children.*** All content photographs and graphics are the property of @copyright of SPS UNSCRIPTED. Find us on FACEBOOK - SPS UNSCRIPTED PODCAST Instagram @spsunscripted1 Spotify Please rate, subscribe and review Do you have SPS or connect with our content? If so please get in touch, we would love to hear from you!
19 Episodes
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‘The one where Lindsay was developing a nasty strain of covid and M had to monopolise the airwaves’…L&M discuss the reality and practicalities of holidays and day trips with SPS. Discussions of personal experiences, trying to plan with the unpredictable nature and chronic fatigue of SPS whilst offering some tips as summer is now upon us. .
Hello, my name is Jennifer…With heartfelt thanks to Jennifer for sharing her beautiful, talented rendition of Warrior, and more so her story, which is an openly raw monologue, recorded in hospital whilst receiving treatment.We advise listeners who are sensitive to sound please reduce your volume to listen to this podcast as music is played throughout.Note:SPS Unscripted Podcast is not responsible for any medical advice, information or pathways discussed in the content of Stories…We neither endorse nor oppose the personal views expressed therein.We strongly recommend you adhere to your medical team’s advice and discuss any concerns with them.
“Hi, my name is Rocco”With heartfelt thanks to Rocco for sharing his story so openly, a journey of 25 years to be diagnosed with SPS! (Some mild reference to self-harm)Note:SPS Unscripted Podcast is not responsible for any medical advice, information or pathways discussed in the content of Stories…We neither endorse nor oppose the personal views expressed therein.We strongly recommend you adhere to your medical team’s advice and discuss any concerns with them.
A short chat with M with regards to the new mini-series - Stories…Find us on: Instagram @spsunscriptedpodcast1 Facebook SPS Unscripted Podcast (Stiff Person Syndrome) Please follow & review on the podcast platforms, it helps the podcast to be more visible to others. Thank you, L&M
A very raw and open discussion between your hosts L&M. Stiff Person Syndrome being a spectrum disease has many faces. It can be difficult to navigate when it impacts upon daily life where you are unable to plan due to the unpredictability of the disease. As always L&M touch upon the seriousness of the topic but never fail to find joy and share laughter throughout. Thank you to all our listeners. Don’t forget to check out ‘Chorus of Voices’
Following on from our social media posts (please podcast image or find it on Instagram/ Facebook) M provides further information.Please note due to a backlog of podcast material awaiting release we have extended the deadline for this, possibly closing around the end of April. Be brave and courageous, join us, have your voice heard! Speak in your native language, we recognise many of our listeners are from all corners of the earth! Amazing!!Here are the steps:Find us on Facebook- SPS UNSCRIPTED PODCASTSend a request to join the group.Find the post that matches the podcast photo where all the instructions will be outlined there too!Record your message via the voice recording on the private message feature.We respect your confidentiality, all messages will be deleted from FB once we have forwarded them onto our editor.Thank you you once again for all your support!Let’s make a SPS Chorus 🤗
In this episode L&M discuss the waxing and waning of living with SPS, but more so your hosts are raw and open as they share the trying few weeks of health challenges and chronic fatigue which left both feeling rather shaken; physically, emotionally and psychologically. By diving a little more in-depth with a longer podcast (don’t forget you can stop and restart as you feel able) L&M touch upon how they have both coped and tried to revive and use multiple methods of self-care in an attempt to reestablish and regain some strength and focus. This is life with SPS, unscripted, an incredibly honest and soul baring episode.Please find us a n FB SPS UNSCRIPTED PODCAST / Instagram @spsunscriptedpodcast1Please see our recent social media posts asking you to join us as a collective voice representing SPS
This episode touches upon how it can feel when we are told “You don’t look sick”. It can be difficult to move forward, heal, and detach with love . We may often find ourselves stuck, ruminating and reliving the hurt. There is hope and strength within you to heal and learn to detach.
Join your hosts L&M as they discuss the importance of engaging in activities and hobbies to enable a fulfilling life particularly when facing health challenges. As always these friends combine laughter, honesty and hope.
Unfortunately podcast platforms do not allow for 3rd party content. M provides an update for listeners who have enquired with regards to the links, mediations etcThank you
Join your hosts L&M as they share their own daily self-care routines to help with symptom management, preventing boom and bust cycles of fatigue and the importance of their sleep routines.
Join M as she discusses chronic fatigue in her personal journey and a how embarking upon a self-care journey continues to help in fatigue management and prevent booming and busting
In this episode Lindsay shared her personal experience with chronic fatigue
This episode is at the request of a listener who picked up upon M’s journey with vestibular and balance issues. Embarking upon self-advocacy leading to a road of recovery
Lindsay continues her personal monologues as she discusses her diagnostic journey and living with SPS in the early years.
Personal Journey M: Episode 1 MEpisode 1: In this monologue as she recalls some steps along the path to diagnosis, initially being diagnosed with hemiplegic migraine for many years.
Episode 1: Personal Journey LindsayIn this episode we sit with Lindsay by candlelight as she shares some of her journey in a personal monologue.
The Power of a Happy Heart. Join your hosts L & M as they discuss and suggest self-care routines which have helped them on their healing journey whilst living with SPS. Today’s episode covers self-care and well being practices such as Forest Bathing, Journaling, Smile Therapy, EFT and most importantly daily gratitude practices.
Welcome to our first episode as we discuss how a post on a SPS support forum lead to a wonderful journey of empathy, encouragement and friendship as we navigate our lives with SPS.
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