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
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
Realistic Self-Care Tips for Moms in the 4th Trimester
When you think of self-care, you might picture a massage, a quiet morning with coffee, or an uninterrupted yoga class. Then there’s life with a newborn. You’re running on broken sleep, trying to remember if you’ve eaten, and reheating the same cup of coffee for the third time. Which is when the ideas of self-care… Continue reading Realistic Self-Care Tips for Moms in the 4th Trimester
Looking Back on How One Bride Adapted Her Wedding for Friedreich’s Ataxia
Earlier we talked about what helps when planning a wedding as a disabled bride from the lens of Libby, a PatientsLikeMe member living with Friedreich’s ataxia. Living with a progressive disease, like Friedreich’s ataxia, that affects mobility and energy means considering details that many couples never have to consider. Accessibility, energy conservation,mobility, and asking for… Continue reading Looking Back on How One Bride Adapted Her Wedding for Friedreich’s Ataxia
Wedding Planning with a Disability: 5 Lessons from a Bride Living with Friedreich’s Ataxia
Wedding planning comes with plenty of decisions. Choosing a venue, finding the right dress, managing timelines, and trying to enjoy the experience can feel overwhelming for any couple. For people living with a disability, there can be another layer of planning. Accessibility, energy levels, mobility, and adapting expectations become part of the process. For Libby,… Continue reading Wedding Planning with a Disability: 5 Lessons from a Bride Living with Friedreich’s Ataxia
Why Your Newborn Won’t Sleep (And What You Can Do Tonight)
Is your newborn wide awake right now while everyone else is sleeping? You’re probably sitting there wondering what is wrong and how you can get your little one back to bed. Well there’s good news and bad news. Good news is chances are nothing is wrong! This is a normal period where infants stay awake… Continue reading Why Your Newborn Won’t Sleep (And What You Can Do Tonight)