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: Conditions
Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.
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 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
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
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
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