Many people are unaware of what the “sandwich generation” is. This term refers to adults who are simultaneously raising children and supporting their own aging parents. It speaks to the difficulty that someone in this situation faces – caught between having to care for two different groups that both require time, attention and energy. The… Continue reading The Hidden Health Impact of Being in the Sandwich Generation
Category: Patient Experiences
How FARA Is Helping Move FA Research Forward and Why Collaboration Matters More Than Ever
How do researchers and scientists make progress on treatments and cures for rare diseases? The human body is incredibly complex, and understanding how certain conditions affect it takes time. For a condition like Friedreich’s Ataxia, that means years of careful research, data collection, comparison, and slow progress. One of the leaders in this charge is… Continue reading How FARA Is Helping Move FA Research Forward and Why Collaboration Matters More Than Ever
Tracking Your FA Progression Without Letting It Take Over Your Life
You do not want to have a condition like Friedreich’s Ataxia take over every part of your life. However, tracking your progression, and understanding how your physical capabilities alongside your mental health change over time, is important! So how can you track your progress while still preserving time throughout your day to do things you… Continue reading Tracking Your FA Progression Without Letting It Take Over Your Life
The Walking Routine People Actually Stick With After a Heart Health Scare
A heart scare is a frightening event to go through. The concern about your health and your future is often too much for people to process all at once. While working with your doctor, you will likely need to address the healthy lifestyle changes you should make to reduce your chances of a future event.… Continue reading The Walking Routine People Actually Stick With After a Heart Health Scare
How Hormones, Pregnancy, and Menopause Can Affect Research Results
Our understanding of the human body and of medical conditions is driven by clinical studies. Studies that look at internal processes, how we react to treatments, and the potential side effects to be wary of. The first proper clinical trial was conducted all the way back in 1747! Since then, they have only improved and… Continue reading How Hormones, Pregnancy, and Menopause Can Affect Research Results
Managing Fatigue with Friedreich’s Ataxia: Tips For Daily Life
For normies, a full night of sleep means waking up refreshed, ready for the day, and as if your energy battery is at 100%. For people living with Friedreich’s ataxia (FA), it can feel different. PatientsLikeMe member, Tiffany, shares how the chronic fatigue she feels from her FA experience feels as if every morning after… Continue reading Managing Fatigue with Friedreich’s Ataxia: Tips For Daily Life
Why Cruising Can Be One of the Best Ways to Travel When You’re Living With FA
Taking a vacation when you have a degenerative condition like Friedreich’s Ataxia takes a huge amount of preparation. You cannot expect to just hop on a plane, get to your destination, and be able to enjoy everything there is to offer! New locations mean new accessibility challenges. Will the restaurants have ramps? Does the hotel… Continue reading Why Cruising Can Be One of the Best Ways to Travel When You’re Living With FA
Feeling Like Your Brain Is Full? How Women Are Managing Decision Fatigue and Mental Overload
One of the most common symptoms of depression is fatigue. Feeling like your body and your mind are just not up to the task is commonplace for people living with MDD! One variation of this is called decision fatigue. Simply put, this is the exhaustion that many people feel after having to make choice after… Continue reading Feeling Like Your Brain Is Full? How Women Are Managing Decision Fatigue and Mental Overload
The Unexpected Connection Between Better Sleep, More Energy, and Cardiometabolic Health
Sleep, it turns out, is incredibly important. Shocking, right? But for how important it is to both physical and mental health, the reality is that people do not get enough sleep. In 2022, the CDC took a survey to see how many American adults were getting the recommended 7 hours of sleep each day. Overall?… Continue reading The Unexpected Connection Between Better Sleep, More Energy, and Cardiometabolic Health
What Should I Actually Be Asking My Doctor? FA Appointments, PT, and Planning Ahead
Interview with PatientsLikeMe Patient Advocate, Kelly Gregory Doctor’s appointments can feel overwhelming, especially when you’re not sure what questions to ask. In this Q&A, I’m sharing what I’ve learned about preparing for appointments, getting the most out of physical therapy, and planning ahead while living with FA. Q: How do you prepare before an appointment… Continue reading What Should I Actually Be Asking My Doctor? FA Appointments, PT, and Planning Ahead