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A shop of resources, reading and practical tools made specifically for caregivers and families facing Progressive Supranuclear Palsy (PSP) and other neurodegenerative conditions. Heart-to-heart guides, caregiver journals, therapeutic art and health logbooks, available in several languages to reach more families.
Transparency note: as the author of these books and as an Amazon Associate, I earn from qualifying purchases. These funds help keep this site running and create new support resources for the community.
📚 Part 1 · My Books and Resources
1. Heart-to-Heart Guides for PSP Caregivers
YOU DON’T HAVE TO WALK ALONE: A Heart-to-Heart Guide for Progressive Supranuclear Palsy Caregivers
An essential heart-to-heart guide for families and caregivers facing Progressive Supranuclear Palsy, offering emotional support and practical grounding.
VOCÊ NÃO ESTÁ SOZINHO NESTE CAMINHO: Um Guia de Coração para Cuidadores de PSP
Um guia de coração para cuidadores de pessoas com Paralisia Supranuclear Progressiva na América Latina, com apoio emocional prático para o dia a dia.
VOUS N’ÊTES PAS SEUL SUR CE CHEMIN: Un guide de cœur à cœur pour les aidants de la PSP
Un guide de cœur à cœur essentiel pour les familles et les aidants confrontés à la Paralysie Supranucléaire Progressive, avec un soutien émotionnel concret.
NO ESTÁS SOLO EN ESTE CAMINO: Guía de corazón a corazón para cuidadores de PSP
Una guía de corazón a corazón para familias latinoamericanas que cuidan a un ser querido con Parálisis Supranuclear Progresiva, con apoyo emocional real.
आप इस रास्ते पर अकेले नहीं हैं: प्रोग्रेसिव सुप्रान्यूक्लियर पाल्सी के देखभालकर्ताओं के लिए हृदय से हृदय तक की मार्गदर्शिका
प्रोग्रेसिव सुप्रान्यूक्लियर पाल्सी से जूझ रहे परिवारों और देखभालकर्ताओं के लिए भावनात्मक सहारा देने वाली एक हृदयस्पर्शी मार्गदर्शिका।
لست وحدك في هذا الطريق: دليل من القلب إلى القلب لمقدمي الرعاية المصابين بمرض الشلل فوق النووي التقدمي
دليل صادق وداعم لمقدمي الرعاية الذين يرافقون أحد أفراد أسرتهم المصابين بالشلل فوق النووي التقدمي، بلغة القلب لا لغة الطب فقط
2. Caregiver Journals and Logbooks
My Caregiver’s Journal: 84 Days to Breathe, Remember, and Hold Yourself Whole
A guided 84-day journal for caregivers to process emotions, track small wins, and hold on to their own identity while caring for a loved one.
Meu Diário de Cuidador: Um diário guiado de 84 dias para respirar, lembrar e se manter inteiro
Um diário guiado de 84 dias para cuidadores processarem emoções, registrarem pequenas vitórias e preservarem a própria identidade durante o cuidado.
Mi Diario de Cuidador: Un cuaderno guiado de 84 días para respirar, recordar y sostenerte entero
Un cuaderno guiado de 84 días pensado para que el cuidador procese sus emociones, registre pequeños logros y no se pierda a sí mismo en el camino.
Weekly Progressive Supranuclear Palsy Logbook: Valid for 3 years
A structured weekly logbook, valid for 3 years, to track symptoms, medications, and appointments for people living with Progressive Supranuclear Palsy.
3. Therapeutic Art: Mandalas for Fine Motor Skills
Mandalas para Manos Valientes: 80 diseños terapéuticos para ejercitar la motricidad fina
80 diseños de mandalas pensados como terapia ocupacional, ideales para ejercitar la motricidad fina en personas con condiciones neurodegenerativas.
Mandalas for Brave Hands: 80 Therapeutic Designs to Exercise Fine Motor Skills
80 therapeutic mandala designs created as occupational therapy support, ideal for exercising fine motor skills in people facing neurodegenerative conditions.
Mandalas para Mãos Corajosas: 80 desenhos terapêuticos para exercitar a motricidade fina
80 desenhos de mandalas pensados como terapia ocupacional, ideais para exercitar a motricidade fina em pessoas com condições neurodegenerativas.
Mandalas pour des Mains Courageuses: 80 dessins thérapeutiques pour exercer la motricité fine
80 dessins de mandalas conçus comme soutien d’ergothérapie, idéaux pour exercer la motricité fine chez les personnes atteintes de maladies neurodégénératives.
4. Visual and Speech Stimulation Exercises
Veo y Nombro: 50 láminas de estimulación visual y del habla para ejercitar la mirada
50 láminas de estimulación visual y del habla, diseñadas para ejercitar la mirada, el control cefálico y el lenguaje en terapias neurodegenerativas.
Je Vois, Je Nomme: 50 planches de stimulation visuelle et du langage pour exercer le regard
50 planches de stimulation visuelle et du langage, conçues pour exercer le regard, le contrôle de la tête et le langage dans un contexte neurodégénératif.
Eu Vejo, Eu Digo: 50 imagens de estimulação visual e da fala para exercitar o olhar
50 imagens de estimulação visual e da fala, criadas para exercitar o olhar, o controle da cabeça e a linguagem em contextos neurodegenerativos.
I See, I Say: 50 Visual and Speech Stimulation Cards to Exercise Gaze, Head Control and Language
50 visual and speech stimulation cards designed to exercise gaze, head control, and language skills in neurodegenerative therapy settings.
5. Weekly Health Logbooks for Caregivers
Weekly Lupus Logbook: 162 Pages, Valid for 3 Years, for Nurses, Caregivers and Family
A structured weekly logbook, 162 pages and valid for 3 years, to track lupus symptoms, medications, and appointments for patients, nurses, and family caregivers.
Weekly Hypertension Logbook: For Nurses, Caregivers and Family Members, 162 Pages
A structured weekly logbook, 162 pages, to track blood pressure readings, medication, and symptoms for patients, nurses, and family caregivers.
Registro Semanal de Inyección: 104 Semanas, 02 Años
Un registro semanal de inyecciones, con capacidad para 104 semanas (2 años), pensado para pacientes, cuidadores y personal de enfermería.
Weekly Fitness & Nutrition at Home Logbook: Valid for 3 Years
A weekly logbook valid for 3 years to track home fitness routines and nutrition habits, built for simple, consistent progress tracking over time.
6. Christian Art & Therapeutic Books
Pope Leo XIV in Peru – A Coloring Book: 50 Illustrations for Kids and Seniors: Art Therapy, Hand Motor Stimulation, and Calm for ADHD, Hyperactivity, and Neurodegenerative Disease
A beautifully crafted therapeutic coloring book featuring 50 detailed illustrations. Designed as occupational support to promote relaxation, fine motor skill practice, and mental calm for individuals facing ADHD, hyperactivity, or neurodegenerative conditions.
León XIV en el Perú – Libro para Colorear: 50 ilustraciones para niños y adultos mayores: arteterapia, estimulación motriz de las manos y calma para el TDAH, la hiperactividad y las enfermedades neurodegenerativas
50 ilustraciones diseñadas como soporte de arteterapia y terapia ocupacional. Una herramienta para ejercitar la motricidad de las manos y brindar un espacio de calma tanto a niños con hiperactividad como a adultos mayores.
🏠 Part 2 · What We Used at Home to Care for My Mother
While my mother, Martha Yrene, was bedbound with PSP, we bought things that made each day a little easier. Here they are, organized by need. I don’t recommend a single brand: each button opens an Amazon search so you can compare models, reviews and prices. Items marked ✓ My mom used this are the ones we had at home; the rest are useful additions for the same need.
🫁 Breathing & Mucus
Mucus and chest infections were one of the hardest parts for my mother. I only link over-the-counter items here.
To check oxygen level and pulse at home and write them down for the doctor.
View on Amazon
Keeps bedroom air less dry. Ask the doctor whether it suits your situation.
View on Amazon
A manual respiratory-therapy tool. Use it only if a physical or respiratory therapist taught you how.
View on Amazon
For breathing exercises, only if the therapist recommends it and the person can follow the instructions.
View on Amazon
🛏️ Bed & Rest
When my mother became bedbound, these were the changes we noticed most, both for her comfort and our daily work.
Alternating pressure air mattress
It helped my mother feel more comfortable during her months in bed. You still need to reposition and check the skin every day.
View on Amazon
Full-electric home hospital bed
Raising the head and legs with a remote made feeding, washing and repositioning much easier for us.
View on Amazon
To support the back and legs when turning someone on their side.
View on Amazon
♿ Mobility & Transfers
Falls, especially backwards, are very common in PSP. Moving her safely was a daily worry.
Folding wheelchair
It let us keep taking her to appointments and outside for fresh air when she could no longer walk.
View on Amazon
Transport chair
Lighter than a wheelchair and pushed by a helper. We used it to move her around the house.
View on Amazon
Gives a firm grip when helping someone stand or move from bed to chair.
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Ask the physical therapist which type is right: not every walker is safe in PSP.
View on Amazon
🚿 Bathroom & Hygiene
For my mother, still being able to use the toilet was a way of keeping her dignity. These items helped us care for her in that.
Bedside commode chair
The commode chair let her use the toilet next to her bed, without the risk of walking to the bathroom.
View on Amazon
Works for showering and as a commode, without moving the person from chair to chair.
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Overnight, high-absorbency ones help the person rest without interruptions.
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To care for the skin in the diaper area. Ask the nursing team which one to use.
View on Amazon
🥄 Eating & Drinking
Swallowing becomes hard in PSP. My mother began eating more and more slowly, and that changed everything. Always talk to the doctor or swallowing therapist.
Only with guidance from the swallowing therapist or doctor, who will tell you the right consistency.
View on Amazon
💆 Massage, Exercise & Stimulation
Moments of relief and connection. Always on low settings and with someone nearby.
Massage chair / recliner
A short massage helped her relax. Always on low intensity and with someone beside her.
View on Amazon
Foot spa massager
My mother enjoyed it. Always check the water temperature with your hand first.
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Foot circulation massager platform
My mother used it to massage her feet. Use it seated or well supported: falls are a major risk in PSP.
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To move legs or arms while seated, only if the physical therapist approves.
View on Amazon
🔔 Safety & Monitoring
Things that bring peace of mind when you can’t be at their side every minute.
A button so they can call you from bed, even if speech is limited.
View on Amazon
To keep track of blood pressure. You can record it in a weekly logbook.
View on Amazon
Part 2 recommendations are based on my personal experience caring for my mother. Prices and availability are set by Amazon and may change. This page does not replace professional medical advice.