Midlife with Friedreich’s ataxia: Planning ahead

When you’re living with Friedreich’s ataxia (FA), midlife can bring changes in how your symptoms affect your daily life, independence, and long-term plans.

At this stage, you might notice that tasks that once felt manageable now require more time or support. These kinds of shifts can prompt you to revisit your routines, reassess your goals, and strengthen your support systems to make living with FA more manageable.

By implementing specific strategies for managing FA in midlife, you can work toward prioritizing your well-being and maintaining your quality of life.

Understanding changes in midlife with FA

In midlife, your symptoms may gradually evolve, and new health concerns can emerge. These changes may not be the same for everyone, but they may require practical adjustments.

Examples of midlife changes with FA include:

• increasing difficulty with balance and coordination, leading to new mobility challenges
• increased fatigue that affects your work schedule or social activities
• new or worsening cardiac concerns that require closer monitoring
• an increased risk of diabetes, making regular blood sugar checks more important

Because of these challenges, you may have to work closely with your care team to reassess your treatment goals and potentially adjust your care plan. You may also need to make certain changes to your daily routines, such as planning activities around energy levels or allowing extra time for tasks.

Finally, you may want to ensure you have adequate support from caregivers, friends, and family to assist you with everyday activities, or connect with others who understand midlife with FA.

Medical management and checkups

Key aspects of FA management involve consistent monitoring of your condition, careful planning, and regular communication with your care team.

Examples of midlife FA health monitoring include:

• cardiac evaluations
• blood sugar checks
• neurological follow-ups

FA care planning can help anticipate changes and support long-term symptom management. It may involve building or expanding your FA care team, tracking symptoms, and ensuring your treatment plan aligns with your current goals and priorities.

Finally, there is significant value in regular, open communication with your care team. If any new or worsening symptoms or other concerns arise, make sure to report them to your doctors. They can only act on information that you share with them.

Planning for daily life

Over time, you may find that daily activities with FA have become more challenging and that you may need to adjust your routines, modify your environment, or use new tools to support your independence.

Examples of specific daily life adjustments that may be needed include:

• adding grab bars throughout the home for support
• installing ramps, stairlifts, or railings to improve accessibility
• using adaptive driving equipment, accessible transportation, or ride services
• switching to different or additional FA mobility aids, such as transitioning from a cane to a walker or wheelchair
• managing your energy throughout the day through strategic scheduling, taking regular breaks, and asking for help with daily tasks

Consulting your FA care team for diet and exercise recommendations can further support your well-being.

Work, finances, and legal planning

Midlife is also a good time to start thinking about your long-term career and financial goals.

For example, at some point, your condition may affect your ability to do your job if you’re currently working. You may want to request workplace accommodations, such as remote work or flexible hours, or consider alternative career paths.

And when it comes to financial planning with FA, consider consulting a financial adviser to help you assess your financial goals, including planning for potential future care needs, such as long-term care.

Additionally, make sure you understand your insurance benefits and find trusted decision-makers, such as family members or friends, to help manage potential uncertainty and meet future support needs.

Consider also contacting an attorney to help with important documents such as advance directives, powers of attorney, and healthcare proxies, to ensure your personal preferences are respected.

Emotional and social support

Nurturing your emotional well-being with FA is a key component of midlife self-care.

Managing new symptoms and other challenges of living with FA can take a toll on your mental health. Talking to a counselor who has worked with people with chronic or neuromuscular diseases can help you find ways to deal with stress and navigate difficult experiences.

Having social support can also make a big difference in how you feel emotionally. Meeting FA peers through a support group, such as the Friedreich’s Ataxia News Facebook group, can provide a source of advice, camaraderie, and understanding.

Looking ahead

Living with FA in midlife can involve various challenges, but thoughtful planning can support your autonomy and well-being.

By monitoring your health, making lifestyle adjustments, and establishing FA support networks, you can maintain independence for as long as possible while working toward meaningful goals. Revisiting plans regularly and adjusting them accordingly can help you meet your evolving needs and priorities.

By prioritizing your well-being in midlife and beyond, you can build a foundation that bolsters autonomy, security, and confidence now and in the future.