Online support meeting notes: Archive
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June 2026Online support meeting notesKey topics: Capgras syndrome, misidentification, swallowing difficulties (Dysphagia), Botox for muscle spasticity, anxiety and depression, LBD vs Parkinson's Disease, sleep issues, financial support for carers, home adaptations, episodic comas, The Blue Book, explaining LBD to family members.
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May 2026Online support meeting notesKey topics: Incontinence management, companion & befriending services, NHS Continuing Healthcare, blue badge applications, dizziness and postural hypotension, Diamond Lewy Toolkits, Admiral Nurses, passive exercise devices.
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April 2026Online support meeting notesKey topics: Emergency preparedness bags, IQoro, pilates rings, Diamond Lewy Toolkits, dementia and driving, Admiral Nurses, handwriting exercises.
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March 2026Online support meeting notesKey topics: Tremor management, Rivastigmine effectiveness, incontinence management, respite and carer support, varied symptom presentations, maintaining social connections, carer wellbeing and exhaustion.
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February 2026Online support meeting notesKey topics: Top Hat Phase 2 drug trial, CHC funding, Parkinson's symptoms, refusal of medication, hearing aid challenges
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January 2026Online support meeting notesKey topics: Balancing medication for cognitive & physical symptoms, balance and mobility issues, self-advocacy, end-of-life planning, quality of life, finding moments of joy, support networks
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December 2025Online support meeting notesKey topics: Palliative care, drug trials, monitoring solutions (Ring doorbells, baby monitors), activities for people with a diagnosis (bird toys, art therapy, and music)
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November 2025Online support meeting notesKey topics: LBD stages, high anxiety (medication and sundowning), confusion caused by mirrors and photographs, masking, hospital visits, care homes, TV adverts about dementia, Telegraph article about LBD, Lewy body disorder
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October 2025Online support meeting notesKey topics: Increasing GP's knowledge about LBD, Talking therapy, Life Review, Uribag, Symptoms (excess saliva, decreasing platelets, choking, convulsions, Myoclonic epilepsy)
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