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 Your Newborn Won’t Sleep (And What You Can Do Tonight)
Is your newborn wide awake right now while everyone else is sleeping? You’re probably sitting there wondering what is wrong and how you can get your little one back to bed. Well there’s good news and bad news. Good news is chances are nothing is wrong! This is a normal period where infants stay awake… Continue reading Why Your Newborn Won’t Sleep (And What You Can Do Tonight)
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
Feeling Like Your Brain Is Full? How Women Are Managing Decision Fatigue and Mental Overload
One of the most common symptoms of depression is fatigue. Feeling like your body and your mind are just not up to the task is commonplace for people living with MDD! One variation of this is called decision fatigue. Simply put, this is the exhaustion that many people feel after having to make choice after… Continue reading Feeling Like Your Brain Is Full? How Women Are Managing Decision Fatigue and Mental Overload
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
The Unexpected Connection Between Better Sleep, More Energy, and Cardiometabolic Health
Sleep, it turns out, is incredibly important. Shocking, right? But for how important it is to both physical and mental health, the reality is that people do not get enough sleep. In 2022, the CDC took a survey to see how many American adults were getting the recommended 7 hours of sleep each day. Overall?… Continue reading The Unexpected Connection Between Better Sleep, More Energy, and Cardiometabolic Health
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