Being a caregiver for someone with Friedreich ataxia

Social support, counseling, and working with a mental health professional are important parts of treatment for Friedreich ataxia (FA), not only for people living with the condition, but also for families and caregivers.

FA is a genetic disorder that causes progressive damage to the nervous system, the heart, and other organs. In the early stages, FA can cause problems with standing, walking, and coordination. As the disease progresses, it can cause problems with speech and swallowing, vision and hearing, and mobility.

The onset of symptoms typically occurs in childhood, adolescence, or young adulthood (though it can occur later in some cases). There is no cure for the condition, and treatment focuses on addressing symptoms and complications. However, a drug that can help slow the progression of FA became available in 2023 (and is approved for people 16 years and older) and other therapies are under development.

FA and caregiving

People with FA often rely on help from caregivers, such as parents or other loved ones. Because FA is a progressive condition, the type of care and support a person with FA needs will change over time.

While caregiving can be a rewarding and fulfilling experience, it can also be emotional, stressful, and challenging. To provide the best care for a person with FA, a caregiver will need to prioritize their own physical and mental health. Here are a few strategies to keep in mind, and areas to consider focusing on:

Work with a mental health professional

This was already mentioned above, but it’s worth mentioning again. Counseling and therapy can help caregivers, family members, and people living with FA communicate with one another, discuss the diagnosis, and cope with the many complex feelings that come with a diagnosis like FA.

Connect with others

It’s important to remember that you and your family are not alone—there are other people who are living with FA and similarly life-altering conditions. It can help to connect with people who know what the experience can be like. Consider participating in a support group or seeking out organizations that provide support for families affected by FA. Also look for sports, activities, and other social opportunities for young people living with disabilities.

Don’t neglect your own needs

Many caregivers put the needs of others above their own needs. But in order to be an effective caregiver, a person will have to pay attention to their own needs—this includes eating well, staying active, getting enough sleep, paying attention to stress levels, and keeping up with healthcare appointments. This also means things like maintaining friendships and making time for yourself when you need a break.

Recognize the signs of caregiver burnout

Caregiver burnout happens when the demands of caregiving become too much. It is described as a state of mental, emotional, and physical exhaustion, and it is something every caregiver will want to take steps to avoid. The strategies discussed above can help prevent caregiver burnout. It also helps to recognize the signs:

• Feeling emotionally, mentally, and/or physically exhausted
• Feeling irritable or impatient
• Difficulty concentrating and staying focused, forgetfulness
• Lacking interest in activities that are typically enjoyable
• Difficulty falling asleep, staying asleep, or getting enough restful sleep
• Negative feelings towards the person you care for
• Difficulty keeping up with basic needs, like eating meals and personal hygiene
• Withdrawing from friends and family
• Using alcohol, other substances, or other unhealthy behaviors as coping mechanisms
• Headaches, stomachaches, other unexplained aches and pains
• Anxiety, depression, feelings of hopelessness, low self-esteem

If you find yourself experiencing caregiver burnout, a good first step is to talk to a healthcare provider. You can also talk to your loved one’s healthcare team. Social workers can provide support, counseling, and strategizing to help you make changes to address burnout and avoid it in the future.

Ask for and accept help

Reach out to loved ones and friends when you need help. Help does not necessarily need to be taking on caregiving responsibilities (though it can be). It can also be help with errands, grocery shopping, chores, or anything else that can free up time and energy and make things a little easier. Also practice saying “yes” when someone offers help.