Parkinsonism
-
“New Year, Same Fight: “Facing the Future with MSA and the Quest for a Cure”
As I reflect on the past year and look towards the next, my commitment to helping others facing MSA remains unwavering. Whether it’s through participating in research, offering support, or simply sharing my stories, we’re in this together. Here’s to a year of hope, progress, and continued connection. Continue reading
-
“Early Warning Signs: How Recognizing Early Symptoms of MSA Can Lead to a Better Quality of Life & Maybe, an Opportunity to Live”
Interestingly, certain sleep disorders can be linked to MSA. Rapid eye movement (REM) sleep behavior disorder (RBD) is a significant early sign of Multiple System Atrophy (MSA), with 69% to 100% of MSA patients experiencing it according to NCBI. RBD is characterized by muscles not relaxing during REM sleep, causing patients to act out their… Continue reading
-
Part 3 of a 4 Part Series on the Importance of Caregivers to an MSA Sufferer: “Sacrifices and Adjustments: A Caregiver’s Life”
Caregiving is a role that often goes unnoticed and underappreciated, yet it is one of the most challenging and selfless tasks one can undertake. This part of our series focuses on the significant sacrifices and adjustments caregivers make in their lives. Continue reading
-
Part 4 of a 4 Part Series on the Importance of Caregivers to an MSA Sufferer: “Support, Love, and Legacy”
The adage “It takes a village” holds particularly true in the context of caregiving. The support of community, friends, and extended family can be a lifeline. This support can take many forms – from a neighbor offering to run errands, a friend lending an ear for emotional support, to family members sharing the caregiving responsibilities Continue reading
-
Part 1 of a 4 Part Series on the Importance of Caregivers to an MSA Sufferer: “Understanding MSA: The Family’s Perspective”
Welcome to my four-part blog series, a personal reflection on my journey with Multiple System Atrophy (MSA) and the indispensable role of caregivers. My wife, the pillar of my daily battles, suggested I write this series Continue reading
-
“Finding Hope Against MSA: My Understanding of the Compassionate Use Law”
The Difficulty in Access: It’s not easy to get these drugs. First, the drug has to be in a clinical trial, which means it’s still being tested for safety and effectiveness. But even if there’s a drug out there that might help, there’s no guarantee we can get it. Continue reading
-
Part 3 of 4: “A Glimpse of Hope: My Perspective on the ATH434 Clinical Trial for MSA”
The ATH434 trial is a significant step forward in MSA research. For those of us living with this condition, every new trial, every bit of research, brings us closer to understanding MSA and potentially finding effective treatments. Continue reading
-
Part 2 of 4: “Navigating New Horizons: My Perspective on the ONO-2808 Clinical Trial for MSA”
This study, aiming to evaluate the safety, tolerability, and efficacy of ONO-2808 in MSA patients, is a significant step in our quest for better treatment options. Continue reading
-
“Hope on the Horizon: My Take on the TAK-341 Clinical Trial for MSA”
Living with Multiple System Atrophy (MSA) is like navigating through a thick fog — you’re never quite sure what lies ahead. When I heard about the clinical trial for a drug called TAK-341, it was like a ray of light piercing through that fog Continue reading
-
“Living with Hope: My Journey with Multiple System Atrophy and the Right to Try Law”
However, the reality has been disheartening. Despite the law’s intent, the actual process of getting drug companies to comply with it is incredibly challenging. Continue reading
Living Beyond the Diagnosis 