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
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.
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
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
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