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
Category: Voice of the Member
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
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
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
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
What It’s Like Living With Multiple Sclerosis
Mary Ellen’s Story of living with multiple sclerosis and advises others to advocate for themselves before settling for the worst case scenario. We had the pleasure of talking with PatientsLikeMe member, Mary Ellen, a non-profit leader living with multiple sclerosis. Like so many others, Mary Ellen experienced symptoms of multiple sclerosis throughout her life but… Continue reading What It’s Like Living With Multiple Sclerosis
Dave’s Journey with Spinocerebellar Ataxia Type 8 (SCA8): Getting Back on the “Bike of Life”
Meet Dave (@SlowDave) Dave, a retired attorney, and avid mountain biker was riding in the car with his wife when he felt very dizzy, asked her to pull over, and collapsed on the side of the road in 2005. This incident sparked many subsequent trips to the emergency room and meetings with neurologists and other… Continue reading Dave’s Journey with Spinocerebellar Ataxia Type 8 (SCA8): Getting Back on the “Bike of Life”