Tips for Day-to-Day Living With Friedreich’s Ataxia

If you or someone you love has recently been diagnosed with Friedreich’s ataxia (FA) — a rare neurogenerative disorder that impacts your muscles’ ability to function over time — you’re probably learning more than you ever thought you’d need to know about how your body works. It’s easy to feel overwhelmed, or even depressed, as you read about all the different ways the condition can impact your day-to-day life.

Friedreich’s ataxia is a serious condition, no doubt about it. And yes, it will make activities you otherwise wouldn’t spare a thought about slower and more difficult with time. But rest assured: You can still have a rich life.

Tips for living with Friedreich’s ataxia

Neurologist Odinachi Oguh, MD, says doing the following can help smooth out the ups and downs that come with having a neurodegenerative disease like Friedreich’s ataxia.

Create a daily routine

When you have a chronic illness, energy conservation is key. Having a reliable schedule reduces stress. Dr. Oguh also says it makes it easier to maintain the healthy habits — like eating a proper diet and getting plenty of exercise — that are so important for people living with Friedreich’s ataxia. Cultivating stability in your day-to-day life also makes it more likely that you can rally when difficulties pop up.

Life is going to intervene from time to time. It does for everybody. And living with FA, you’ll need to manage muscle weakness, uncoordinated movements, fatigue and other unpleasant interruptions. But having a tried-and-true routine to return to can make getting back on track less physically and mentally taxing.

Be proactive about your health

Friedreich’s ataxia is a serious condition, so it’s important to advocate for yourself early and often.

It’s not always easy to tell your caregivers what you need. It sometimes means admitting that activities you used to do with ease, like eating or brushing your hair, are becoming harder to manage. But the sooner your providers know, the sooner they can help you adapt — and the more likely you are to avoid injury. And they’re likely to be able to share creative solutions or recommend assistive devices that have aided other people.

Being quick to utilize the resources at your disposal is only part of the equation. The other part is being organized and diligent. Basically, you need to help your care team help you. That means:

• Seeing your providers regularly. FA progresses slowly, but that doesn’t mean you shouldn’t see the members of your care team regularly. As a neurologist, Dr. Oguh typically sees people living with FA once every six months or so. Talk to each member of your care team to determine how frequently you should be seen.
• Anticipating your healthcare team’s questions. Dr. Oguh says FA providers always want to know if you have any acute medical problems going on, like pneumonia, a urinary tract infection (UTI) or a recent surgery. They’ll also want to know if any of the following things have changed since your last visit:
  • Your medications.
  • Your fall risk and frequency.
  • Your gait and overall mobility.
  • Your balance and stability.
  • Your cognitive skills like learning, thinking and remembering.
  • Your mood.
  • Your sleep habits.
  • Your swallowing and speech.
  • Your activity level.
  • Your nutrition and appetite.
  • Your weight.

Having precise answers to these questions will help your provider home in on what’s most important.

• Asking questions of your own. “I love when people come into the clinic with a list of questions,” shares Dr. Oguh. “In fact, answering questions is usually the first thing I do during appointments.” Feel free to take notes. If you’re not able to write or worry you won’t remember your provider’s answers to your questions, request permission to record the appointment.
• Keeping a symptom diary. With degenerative conditions like FA, changes can be slow and subtle. Maintaining a symptom diary can help you spot trends and anticipate challenges before they arise. Bring your symptoms diary with you to appointments if you want to see your provider’s face really light up!

Protect your mental health

Living with a degenerative condition doesn’t just put a strain on your body. It also impacts your sense of self and how you interact with others. Learning resilience and coping skills can help you get through the bad days and fully enjoy the good ones. That’s why most FA care teams include a psychologist, a social worker or both. And your support network doesn’t end there. Your family, friends and faith community (if you have one) all have a role to play.

Here’s what Dr. Oguh suggests you can do to help safeguard your mental and emotional well-being:

• Practice mindfulness. When you have a degenerative disease, it’s natural to look to the future with anxiety. It’s natural, but it isn’t necessarily healthy. Fortunately, there are lots of ways to bring your attention to the present moment. And here’s a bonus: Mindfulness practices like meditation have been shown to reduce chronic pain.
• Join an FA support group. Sometimes, you need to talk to somebody who’s going through the same thing you are. The National Ataxia Foundation has a directory of in-person and online support groups that even includes a list of upcoming meetings. You might be surprised to see how robust the community is!
• Maintain an active social life. “The emotional burden of having a neurodegenerative disease can lead to social isolation,” Dr. Oguh notes. “But I always tell people in my clinic to get out there, stay engaged and be socially active.” If you don’t feel comfortable being around your old crowd, talk with your social worker. “They’re our eyes and ears in our community,” she says. “Every community is different and has unique resources to offer. Connecting you to all those resources is their job.”
• Pick up new hobbies. Some people living with FA end up having to leave school or retire from their chosen profession due to disability. Just like anybody else in that situation, Dr. Oguh says it’s vital for your cognitive and emotional health that you fill that newfound free time. If you don’t want to find new hobbies, focus on adapting the ones you already have. Camping might not be in the cards anymore, but caravanning is much more accessible.

The bottom line: Communicate openly and honestly with your care team. You’re going to experience high highs and low lows living with FA. Let your care team and loved ones know where you are on the rollercoaster, so they can give you the support you need.

Embrace strength, resilience and support

A Friedreich’s ataxia diagnosis certainly presents significant challenges. It means a lot of things about your life will eventually change. But not all those changes are going to be negative. There may not be a cure for FA yet, but there are treatment options available to you. Discussion with your care team will be important to determine which interventions you’re a candidate for. And when you’re feeling down, remember: There are lots of folks just like you out there living robust, fulfilling lives with FA.

Finding strength within yourself — and from the people who love you — is key. Give yourself the opportunity to be surprised by your own resilience in the face of chronic illness. And allow others to assist you on that journey.