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Page de couverture de S1 Ep 9: Learning the trombone with Posterior Cortical Atrophy, Dawn's story...

S1 Ep 9: Learning the trombone with Posterior Cortical Atrophy, Dawn's story...

S1 Ep 9: Learning the trombone with Posterior Cortical Atrophy, Dawn's story...

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 What do you get when you combine a 27-mile cycling achievement and the discovery that having "the face for a trombone" is apparently a real thing? Just another day in the lives of people living well with dementia. In this episode, hosts Leon, Tom, and Fran continue their candid conversations about living with dementia, joined by special guests Dawn and Meryl. The discussion covers the realities of diagnosis, medication changes, and maintaining active lifestyles despite cognitive challenges. Tom shares updates on his new medication regimen following a recent scan after a fall, whilst continuing his impressive cycling achievements - recently completing a 27-mile ride. The conversation explores the often lengthy and frustrating diagnostic process, with guests sharing how they were initially misdiagnosed with depression or the menopause before receiving accurate dementia diagnoses. Dawn and Meryl bring a fresh perspective as they discuss Dawn's diagnosis with Posterior Cortical Atrophy (PCA) - the same rare form of dementia that affected author Terry Pratchett. They explore how this condition particularly impacts visual processing and spatial awareness, affecting everything from driving to reading music, despite normal eyesight. The episode highlights the importance of community support through organisations like the Alzheimer's Society and local support groups. Musical therapy takes centre stage as Dawn and Meryl share their journey learning trumpet and trombone, with audio clips of their brass band performances demonstrating how new skills can be therapeutic and rewarding. Practical challenges are addressed honestly - from losing independence and driving licences to dealing with loud environments and managing daily tasks that now take much longer. The conversation also touches on the impact on partners and relationships, challenging the terminology of "carer" versus maintaining equal partnerships. Throughout, the tone remains hopeful and pragmatic, emphasising that whilst dementia changes lives significantly, people can still find joy, pursue new interests, and maintain meaningful relationships. The episode reinforces the central message that a dementia diagnosis isn't an immediate end to living well, but rather requires adaptation and community support to thrive. Resources Mentioned in Episode: Support Organizations: Alzheimer's Society: www.alzheimers.org.uk (Helpline: 0330 333 0804) Men in Sheds Association: www.menssheds.org.uk (Community workshops for men's wellbeing) Medical Resources: NHS Dementia Information: www.nhs.uk/conditions/dementia NHS Memory Assessment Services (contact via your local NHS trust) Memantine (medication) - discuss with your GP or memory clinic Technology & Daily Aids: Amazon Alexa: www.amazon.co.uk/alexa (Voice assistant for reminders and daily support) Cultural Resources: Van Gogh Museum, Amsterdam: www.vangoghmuseum.nl Van Gogh: The Immersive Experience (touring exhibitions): www.vangoghexpo.com Books Mentioned: Terry Pratchett novels (Discworld series) Vincent van Gogh: The Letters (available at major bookstores) Fiona Phillips' books on Alzheimer's (available at major bookstores) Activity Resources: British Association for Music Therapy: www.bamt.org Cycling UK: www.cyclinguk.org Local brass bands and music groups (search via your local council website) Finding Local Support: Search "dementia support groups near me" on NHS website Contact your local Adult Social Services Ask your GP for local memory services referrals For Specific Conditions: Posterior Cortical Atrophy (PCA): Contact Alzheimer's Society for specialist support Rare Dementia Support: www.raredementiasupport.org Episode Chapters: 00:00 - Introduction & Welcome 00:14 - Tom's New Medication & 27-Mile Cycling Achievement 02:23 - Garden Party Reflections & Alzheimer's Society Support 05:01 - Challenging Public Misconceptions About Dementia 13:08 - Diagnostic Journey Challenges & Medical Advocacy 19:38 - Introduction of Dawn & Meryl: Valentine's Day Diagnosis 25:19 - Dawn's Occupational Health Nightmare & GP Support 43:19 - Understanding Posterior Cortical Atrophy (PCA) 50:02 - Daily Life Changes & Technology Adaptations 1:04:32 - "Don't Get a Puppy" - Practical Advice for New Diagnoses 1:25:52 - Community Support & Sedgemoor Group Reflections
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