Signs your Friedreich’s ataxia care plan may need an update

Because Friedreich’s ataxia (FA) is a lifelong disease, it’s likely your treatment and care plan will need periodical adjustments to ensure your symptoms are adequately managed and your quality of life is maintained through all life stages.

An FA care plan adjustment might be needed for a variety of reasons, including disease progression, lifestyle changes, or advances in research and treatment. It’s important to know how to recognize the signs that your care needs adjusting and feel empowered to advocate for yourself in conversations with your healthcare providers.

Physical red flags

When you are living with a chronic disease like FA, it’s normal for your symptoms to fluctuate from day to day. But if you notice a consistent pattern of changing symptoms that are disrupting your daily life more often, it’s time to let your care providers know. Some red flags to look out for include:

• falling or stumbling more often
• having more issues performing usual activities, or needing much more rest afterward
• increasing difficulty transferring in and out of a wheelchair, bed, toilet, or car
• having a harder time using your hands for things like writing, buttoning clothes, or using utensils
• new or worsening muscle tightness, spasms, or pain
• increasing difficulties talking or having others understand you
• coughing, choking, or needing more time than usual to eat

Any of these could be signs that your FA is progressing or your current treatments are not working as well as they should, meaning your body may need new interventions or support.

Daily fatigue and cardiac shifts

Fatigue is a common symptom of FA, so it might feel usual for you. However, if the pattern of your fatigue is changing, it could mean your care plan needs to be reviewed. Changes in your fatigue can mean:

• muscle and heart changes are making it harder for you to perform usual activities
• sleep problems at night are making you more tired during the day
• you are struggling with your mood and feeling down or depressed
• your nutritional needs are not met, so your body doesn’t have the energy it needs
• your lifestyle has changed in ways your body is struggling to keep up with

Hypertrophic cardiomyopathy, a disease of the heart muscle, is very common in FA and tends to get worse over time. When your heart has to work harder to pump blood and get oxygen to the rest of the body, you may have a harder time moving around, which is why worsening fatigue could be a sign that your heart function is changing. This is a very important reason not to ignore changes in your fatigue.

Let your doctors know if new or worsening fatigue is interfering with your usual activities, such as school, work, or self-care. You might need new medications to manage heart problems, sleep issues, depression, or other symptoms. Your doctor might also recommend new aids or adaptations to make it easier to go about daily activities, even when your body feels fatigued.

Refreshing mobility aids or physical therapies

The right physical support — such as canes, walkers, wheelchairs, and other adaptive equipment — can help you safely maintain as much functional independence as possible as your FA progresses. What you need is likely to change over time.

If you’re having an increasingly hard time performing your usual activities or you find that you’re falling more than usual, it’s time to check in with your care team about new aids that can make it easier for you to get around. You might also need to make adjustments whenever your lifestyle or daily routines change in ways your current plan does not accommodate.

Making these adjustments is very important for your safety — falls and other accidents can lead to additional health problems and complications.

Depending on your specific symptoms and where you feel like you’re struggling, your physical therapist can also suggest new exercises to improve your function. An occupational therapist can also help you come up with strategies to make daily activities easier.

New treatments and research

Ongoing research is focused on developing new and better treatments to slow FA progression and manage its symptoms. Research also shows how lifestyle changes, such as exercise and diet, can help people with FA.

Over time, you might need to adjust your treatment plan to align with new medical guidelines and available treatments. Your FA specialist can help you understand what’s changing in the field and how this might apply to you. They can also tell you about any clinical trials for experimental therapies you might be eligible for, and the pros and cons of participating.

Staying on top of the latest in FA research and care can empower you to start these conversations with your care providers and advocate for yourself when you think updating your FA treatment plan is needed.

Bringing your observations to your next appointment

It’s a good idea to keep a written log of your symptoms and how they affect your life. This practice can make it easier to talk to your doctor about FA changes at appointments.

Write down what’s changing, when and how quickly it has changed, and what else has been happening in your life around that time, such as lifestyle or work, illness or injury, or medication adjustments. This information will help your doctor understand what’s happening and why.

You can also bring a list of questions and care goals. For example, if you’ve been falling down, you might want to ask about mobility aids to help you get around. If you feel like your mood is making you tired, you can ask about being evaluated and treated for emotional issues such as depression.

By coming to your appointments prepared, you’ll be able to play an active, engaged role in your treatment plan, working with your care team to make adjustments that maximize your physical and emotional health.