Helpful Advice for Friedreich’s Ataxia Caregivers

If one of your loved ones has been diagnosed with Friedreich’s ataxia (FA) — a rare genetic condition that impacts the nervous system — you probably have a lot of questions. How quickly will the condition progress? As an FA caregiver, how do I help my loved one stay safe, while also preserving their independence? What kinds of assistance can I expect to provide as their condition worsens?

As neurologist Odinachi Oguh, MD, explains, there aren’t many easy answers. FA looks different from person to person. While most people start experiencing symptoms between ages 5 and 15, others are symptom-free for up to 40 years. And — because it’s a degenerative condition — every person’s needs change over time.

Being the best FA caregiver you can be is about keeping lines of communication open, knowing your resources and staying adaptable. The good news? You don’t have to do any of it alone. In fact, knowing when to ask for help may be the most important skill of all.

Tips for Friedreich’s ataxia caregivers

Dr. Oguh describes Friedreich’s ataxia as a disease of disability. Over time, the damage it causes to your nervous system and muscles impacts balance, mobility, speech, swallowing, hearing and vision. It can also lead to issues with your heart, spine and pancreas. It may also impact your executive functioning skills — for example, slowing down thinking and information processing. But unlike some degenerative conditions, the changes are gradual.

“Friedreich’s ataxia progresses very slowly over a long period of time,” she explains. “I can't give you a timeline because everybody is different. In fact, I often tell people not to read the internet because the data about lifespan is old and doesn’t account for the quality of wraparound care we can provide now.”

Caregivers for people with FA can expect their loved ones to experience sensory and spatial awareness (proprioception) problems. They may, for example, have a hard time being able to feel or locate their feet. These issues go on to affect their balance and gait. The condition also causes muscle weakness and loss of dexterity, which can impact everything from fine motor skills like holding a fork, to speech, to urinary and fecal continence.

There isn’t a cure for Friedreich’s ataxia. And not everybody who’s diagnosed with the condition lives a long life. But many do. And the right combination of support services and care can help ensure that your loved one lives well for however long they’re here.

“Friedreich’s ataxia changes your quality of life, but you can still live a fulfilling life.” Dr. Oguh says. She works with FA caregivers frequently and offers the following observations and advice.

Ask first

It can be hard to watch somebody you care about struggle to complete basic tasks like buttoning a shirt or brushing their teeth. But it’s important that you resist the impulse to do everything for your loved one. Instead, ask them to tell you when they need help or list the tasks they find the most difficult.

“You don’t want to create an environment where they feel they can’t do anything for themselves because that will take a toll on their mental health,” Dr. Oguh warns. “Instead of just taking over, I suggest you have a conversation.”

Patience is also crucial when caring for a person living with a chronic illness. But it’s also a finite resource. Careful scheduling can help prevent unnecessary frustration. You may, for example, need to wake up a bit earlier so your loved one can get ready for work or school at their own pace. It’s all about picking your battles. Decide, together with your loved one, what parts of their daily routine need to be rushed, and which activities they want to be able to do themselves.

Recognize your limitations

Aging is always an emotional process. But it can be even more trying for people who expect to become increasingly disabled with time. Building a strong, respectful relationship makes it easier to ask tough questions and find creative solutions as new challenges emerge.

Dr. Oguh says it’s equally important to be honest — with both your loved one and their care team — if your circumstances are changing. It’s not just OK to ask for extra help: It’s in your loved one’s best interest.

Not sure where to turn? Start with your loved one’s social worker. They can perform a needs assessment to determine what kinds of additional support is available and how best to ensure your loved one’s continued health, safety and happiness. (If a medical social worker hasn’t been assigned yet, speak to the providers in your FA care team about it.)

Take advantage of respite services

Nobody can be a caregiver 24/7 and — if we’re being honest — your loved one probably needs space just as badly as you do. The good news is there are lots of ways to take time for yourself without having to worry.

Daycare programs, part-time in-home health aides, senior centers and other respite care services can give you the support you need to step away for a while and recharge. Your medical social worker can point you to specific facilities in your area. There are also lots of caregiver-focused websites out there that maintain respite service directories (more on that in a bit).

Be prepared for emergencies

Dr. Oguh says it’s important to be proactive, rather than reactive, when caring for a person living with FA. Nobody can prevent all accidents and emergencies, but anticipating FA-specific challenges and making adjustments beforehand can help your loved one navigate their daily lives with greater confidence.

Fall prevention is key

FA impacts muscle strength, spatial awareness and balance. As a result, people living with the condition run a high risk of falls. Dr. Oguh adds that people living with FA take longer than the average person to recover from injuries like a broken hip.

Caregivers play a vital role in fall prevention by:

• Observing their loved one’s symptoms for changes.
• Assisting with transfers and other high-risk physical activities.
• Making home modifications (from small ones, like securing rugs to the floor, to large ones, like converting a tub into an accessible shower) as the condition progresses.
• Managing medical equipment like mobility aids and fall detection technology.
• Communicating with and working alongside members of their loved one’s FA care team to (1) address fear of falling if it arises and (2) facilitate a complete recovery when falls occur.

Learn the Heimlich maneuver

One of the primary risks people with FA face is choking, so it’s important for caregivers to learn the Heimlich maneuver. If you haven’t been trained before (or want a refresher), sign up for a first aid course in your area.

Know your resources

The Friedreich’s ataxia community is small but mighty. Organizations like the Friedreich’s Ataxia Research Alliance, The National Ataxia Foundation and the Friedreich’s Ataxia Parent Group can help you get connected with people who know what you’re going through.

Social media pages, in-person and online support groups, blogs and more can also provide invaluable insight, empathy and advice when you need it most.

Think beyond FA

Having or caring for a person living with a rare condition can feel incredibly isolating. But it’s important to remember that, while FA is rare, neuromuscular conditions and movement disorders are not. And there are lots of organizations out there — like The Muscular Dystrophy Association (MDA), The National Ataxia Foundation, and The National Alliance for Caregiving — dedicated to helping people just like you and your loved one. So, don’t hesitate to expand your net beyond FA when seeking support services.

Help yourself, too

Caregiving is difficult (and, too often, undervalued) work. No matter how deeply you cherish the person in your charge, helping them isn’t always going to be easy or fun.

To do your job effectively and avoid toxic emotions like resentment, you need to be in good working order. That means doing the hard work of attending to your physical, mental, emotional and spiritual health and wellness. It also means doing what it takes to recover from burnout if and/or when it happens.

Get plenty of sleep. Maintain an active lifestyle and eat nourishing food. Make time for the things that bring you joy. Practice mindfulness to alleviate stress and stay grounded in the present. Share your feelings with a therapist, spiritual adviser or trusted friend. Investing time and energy into self-care will yield dividends for your loved one, too.