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
How to Fit Mobility Stretches Into Your Day with Friedreich’s Ataxia
When you’re living with Friedreich’s ataxia (FA), staying active isn’t always about finding time for a long workout. Sometimes we are sick or very busy and it’s just about finding small moments throughout the day to keep your body moving. One PatientsLikeMe member, Kelly, shares how she combines cooking dinner with her mobility exercises. It’s… Continue reading How to Fit Mobility Stretches Into Your Day with Friedreich’s Ataxia
Staying Active While Traveling with Friedreich’s Ataxia: Simple Hotel Room Exercise Tips
Travel can throw off anyone’s routine. When you are living with Friedreich’s Ataxia (FA), staying active while traveling can be hard especially when it means leaving behind a familiar set up that helps support daily movement. Hotel gyms may not always feel accessible or comfortable. The equipment may not fit your needs or the environment… Continue reading Staying Active While Traveling with Friedreich’s Ataxia: Simple Hotel Room Exercise Tips
What No One Mentions About the Mental Exhaustion of Trying to Lose Weight
Weight loss is often set up as a simple equation: eat less, move more, and the results will follow. But anyone who has actually been on a weight loss journey knows that is only part of the story. The reality is that losing weight can be exhausting! It is about making hundreds of decisions every… Continue reading What No One Mentions About the Mental Exhaustion of Trying to Lose Weight
Beyond the “What Ifs”: Dr. Sharma Answers Your Questions About Living with FA
Hearing that Friedreich ataxia is “progressive” can bring up a lot of questions, and a lot of fear. In this Q&A our FA expert, Dr. Sonal Sharma, pediatric neurologist and FA specialist at Children’s Hospital of Philadelphia, answers common questions about progression, staying active, knowing when to seek medical care, and how to focus on… Continue reading Beyond the “What Ifs”: Dr. Sharma Answers Your Questions About Living with FA
Making Your FA “Elevator Pitch” – How to Explain the Condition
When it comes to explaining complicated medical conditions, people can find themselves at a loss. Parents and patients alike have a hard time telling friends, family, or even strangers exactly what is going on and how it affects them. This is especially true for a condition like Friedreich’s Ataxia, a rare disease that few have… Continue reading Making Your FA “Elevator Pitch” – How to Explain the Condition
Menopause and Mental Health: Why You May Feel Sad, Anxious, or Unlike Yourself
Menopause can affect women and people assigned female at birth, including some trans men and nonbinary people. While many people hear about and expect hot flashes or changes to their period, the emotional changes can feel harder to name. Nobody warned me about this. Well, maybe it’s not that. Maybe I didn’t pay attention. I… Continue reading Menopause and Mental Health: Why You May Feel Sad, Anxious, or Unlike Yourself
My FA Experience: Hiking El Camino de Santiago
Kathleen Moore, 31, has been living with Friedreich’s Ataxia since getting diagnosed in college. A member of PatientsLikeMe, she has made staying active and pursuing her hobbies a priority even as the condition progresses. Recently, Kathleen went on a trip to Spain to complete the Camino de Santiago, a vast network of trails that extend… Continue reading My FA Experience: Hiking El Camino de Santiago
Where to Begin After an FA Diagnosis: A Parent’s Guide to Next Steps
When her child was diagnosed with Friedreich’s Ataxia over a decade ago, Maggie Moore had some huge adjustments to make. It was time for her to be in charge of things she did not expect! Her priority was to do whatever she needed to in order to make sure her daughter had the support she… Continue reading Where to Begin After an FA Diagnosis: A Parent’s Guide to Next Steps