AdvocacyRSSToday
Parkinson's disease can cause hallucinations—seeing or hearing things that aren't really there—especially as the disease progresses or with certain medications. This article shares practical tips for family members and caregivers on how to respond calmly when a loved one experiences hallucinations and how to redirect them to safer, calmer activities.
WHY IT MATTERSHallucinations affect many people with Parkinson's disease and can be frightening for both patients and caregivers, so learning evidence-based strategies to manage these moments can reduce distress and improve quality of life for the whole family.
AdvocacyRSS4 days ago
Children with Prader-Willi Syndrome (PWS) have real character strengths and positive qualities, but the challenges of the condition can make these strengths difficult for families to notice and support. Recognizing these strengths is important for family wellbeing. However, even when caregivers understand their child's strengths, actually supporting them can be exhausting for parents and guardians who are already managing the demands of PWS.
WHY IT MATTERSFor families managing PWS, understanding that their child has genuine strengths—beyond the condition's challenges—can improve how they view their child and their own emotional wellbeing, even though caregiving remains demanding.
AdvocacyRSS4 days ago
A mother shares her personal story about raising two sons with hemophilia, a bleeding disorder that prevents blood from clotting properly. She describes how the condition has affected her family's life and what it means to be a caregiver for young men living with this lifelong disease. The article uses her childhood memory of wanting to do gymnastics as a contrast to the physical limitations and challenges her sons face.
WHY IT MATTERSParents and caregivers of people with hemophilia can find community and validation in hearing directly from other families navigating the same daily challenges of managing a chronic bleeding disorder.
AdvocacyRSS5 days ago
As Parkinson's disease progresses to advanced stages, it creates serious challenges for both patients and their caregivers—physically, emotionally, and financially. One family shares what they wish they had known earlier about preparing for these later stages and what lessons are helping them cope now.
WHY IT MATTERSPatients and caregivers can learn from this family's experience to better prepare emotionally, physically, and financially for advanced Parkinson's before crisis situations occur.
AdvocacyRSS5 days ago
A mother shares her personal story about being diagnosed with pulmonary hypertension three months after giving birth to her second son in 2023. The article focuses on how she manages her condition while raising three boys and the emotional impact this serious lung disease has had on her life and family.
WHY IT MATTERSPatient stories about pulmonary hypertension help newly diagnosed patients and families understand that others are managing this serious condition while maintaining family life, which can provide hope and practical insights into daily living with the disease.
AdvocacyRSS5 days ago
Talking to family and friends about your Parkinson's diagnosis doesn't have to be complicated. The key is to keep explanations simple and be honest about what you're experiencing. When people understand what's really going on, they're better able to help and support you in meaningful ways.
WHY IT MATTERSClear communication with your support network helps reduce isolation and ensures family and friends can provide practical help tailored to your actual needs as your condition changes.
AdvocacyRSS5 days ago
A mother of seven children shares her story about having three sons with Duchenne muscular dystrophy, a serious genetic muscle disease. She discusses her decision to have children despite knowing the genetic risks and explains why she doesn't regret her family planning choices. The article focuses on her perspective as both a caregiver and parent navigating life with this condition.
WHY IT MATTERSThis personal narrative highlights the lived experience and decision-making process for families with Duchenne muscular dystrophy, offering perspective on genetic counseling, family planning, and the emotional aspects of raising multiple children with the same rare disease.
PolicyRSS5 days ago
Doctors are now recommending that all ALS patients get genetic testing to understand if their disease is inherited. A genetic counselor is a specialist who helps explain what these test results mean and how they might affect family members. Understanding your genetic information can help you and your doctor make better decisions about your care and family planning.
WHY IT MATTERSIf you have ALS, genetic testing and counseling can reveal whether your condition is hereditary, which affects whether your relatives should be screened and what treatment options might work best for you.