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
Tag: Friedreich’s Ataxia
Planning Ahead with FA: How to Navigate Financial, Insurance, and Future Care Decisions Before They Feel Urgent
Getting a Friedreich’s Ataxia diagnosis means dealing with change. It means accepting and preparing for your life to be different. For many people with the condition, it means being thrown into a world of medical jargon and complicated insurance questions that most people never consider having to get their heads around! But being prepared, and… Continue reading Planning Ahead with FA: How to Navigate Financial, Insurance, and Future Care Decisions Before They Feel Urgent
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
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
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
Symptoms, Burnout, and the Invisible Mental Load
Some of the common questions that people ask after getting a Friedreich’s Ataxia (FA) diagnosis are: These are normal questions to have! FA affects the nervous system, heart, muscles, how your body produces energy, and emotions. It touches every part of daily life and can lead to a mental wear-and-tear that builds slowly over many… Continue reading Symptoms, Burnout, and the Invisible Mental Load
Keeping the Hobbies You Love With FA – From Travel to Gaming to Everyday Routines
Living with Friedreich’s Ataxia (FA) changes many parts of your life. Over time, things that once felt easy can start to take more planning, more energy, or more patience. One of the hardest parts of FA that many people talk about is the feeling that your world is getting smaller. Maybe you used to love… Continue reading Keeping the Hobbies You Love With FA – From Travel to Gaming to Everyday Routines
Workplace and School Accessibility Accommodations That Actually Help When Living With FA
Living with Friedreich’s Ataxia (FA) changes the way someone moves through school, work, and everyday life. It is a progressive neuromuscular disease that affects balance, coordination, speech, endurance, and fine motor skills. But having FA does not mean someone cannot succeed in school or build a meaningful career! What usually makes the biggest difference is… Continue reading Workplace and School Accessibility Accommodations That Actually Help When Living With FA