In this blog, Libby Frandsen shares how her life has changed for the better since being diagnosed with Friedreich’s Ataxia (FA)! If you are interested in anything else Libby has shared about her life, be sure to check out these resources: Experiences I’ve Had Thanks to FA When I was first diagnosed with Friedreich Ataxia… Continue reading Cool Things FA Has Allowed Me To Do
Category: Voice of the Member
Reflecting On My College Journey with Friedreich’s Ataxia
Note: This is a repost from Noah’s Blog. Please visit his fantastic site to read more about his journey! College is hard for me to look back on. I love it; I hate it; I miss it, but I couldn’t do it again. It holds some of the most precious memories of my life. The… Continue reading Reflecting On My College Journey with Friedreich’s Ataxia
When Your Partner Becomes Your Helper: Navigating Love and Caregiving With FA
What changes when you or your loved one starts to rely on you more for help around the house? What happens in a relationship when the dynamic now has to accommodate being a caregiver? This is a hard change for anyone to go through, and for people with Friedreich’s Ataxia (FA) it is inevitable that… Continue reading When Your Partner Becomes Your Helper: Navigating Love and Caregiving With FA
‘No Manual For That’: Mental Health & FA
Note: This is a repost from Noah’s Blog. Please visit his fantastic site to read more about his journey! Throwback to a September night in Alabama. It’s hot and the stars are sparkling, but I wouldn’t have known. The roof had been the peak of my view all day. After hours of scrolling on my… Continue reading ‘No Manual For That’: Mental Health & FA
Traveling Overseas For the First Time Since Being Disabled
In this blog, Libby Frandsen shares her experience going overseas for the first time since become a wheelchair user! As someone with Friedreich’s Ataxia, there is a great deal of planning and many extra steps that go into travel. If you are interested in anything else Libby has shared about her life, be sure to… Continue reading Traveling Overseas For the First Time Since Being Disabled
How I Learned to Do Things Differently With FA
In this Q&A with PLM member and FA Ambassador Kelly Gregory, she shares how she has adapted to living with Friedreich’s Ataxia. As someone who heavily prioritizes movement and exercise in her life, FA has presented Kelly with a number of challenges. But she is no stranger to obstacles! If you are interested in any… Continue reading How I Learned to Do Things Differently With FA
Managing Fatigue with Friedreich’s Ataxia: Tips For Daily Life
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
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