Mobility check-in: Are your FA devices still working for you?

Living with Friedreich’s ataxia (FA) involves mobility challenges that may evolve over time. As such, your needs for FA assistive devices may change.

Knowing when to schedule mobility check-ins and what to pay attention to with device updates can help you ensure your equipment supports your safety, comfort, and confidence.

Why regular mobility check-ins matter

If you have FA, you may find that a device that worked perfectly six months ago may no longer be appropriate to support your needs. As your balance, endurance, and coordination change over time, you may need to evaluate your current setup and make the necessary adjustments.

Routine mobility reassessments are essential because they can help with:

• enhancing safety
• supporting independence
• preventing fatigue
• reducing fall risk

Even small changes to your walking aids for FA can make a big difference. Adjusting cane height or modifying walker alignment can support your stability, while updating your orthotic supports can help improve foot positioning and manage energy.

Signs your mobility devices may need an update

It’s important to know when it may be time to update your mobility devices.

Some issues to watch out for include:

• General discomfort: You may experience ongoing soreness while using your devices.
• Poor device comfort and fit: Your orthotic devices may feel off, which means equipment may need to be adjusted or replaced.
• Increased fatigue: You may find yourself exhausted when using your usual walking aids after short distances.
• Skin irritation: Redness or sores from wheelchairs, braces, or other assistive devices can signal improper fit.
• Changes in walking patterns: Increased tripping or leaning on walking aids may suggest a need to change your equipment.

How to conduct a personal mobility check-in

There are a few questions you can ask yourself when conducting a personal mobility check-in.

Examples include:

• Are my current devices convenient to use?
• Have I experienced discomfort or any other issues with my devices?
• Am I more tired than usual after routine tasks?
• Have I been avoiding some activities because of my devices?

Tracking changes in stamina or stability over time, with FA caregiver support if needed, can help you identify when adjustments may be necessary.

When to seek professional advice

If you experience ongoing discomfort, repeated falls, or other persistent issues related to your devices, let your care team know.

They may refer you to a seating specialist for a wheelchair assessment or orthotic review. Additionally, an expert specializing in occupational therapy or physical therapy for FA can help assess changes in your strength, coordination, and mobility needs to determine whether adjustments are required.

Professional evaluations can help optimize fit, prevent injury, and ensure that equipment is aligned with mobility changes.

Tips for maximizing device effectiveness

Dedicating attention to maintaining your devices can help preserve their function. Examples of what can be done for mobility device maintenance include:

• inspecting equipment for worn tips, loose screws, or uneven wheels
• replacing rubber tips promptly to prevent slipping
• checking that brakes engage fully and that moving parts operate smoothly
• ensuring that straps in orthotics fasten securely
• checking that shoes accommodate braces properly

Correct setup and training can also improve your safety and mobility while supporting your long-term independence. An occupational therapist and a physical therapy FA provider can train you and your caregivers on how to use mobility devices safely. They can also share strategies for efficient propulsion and safe transfers to help protect your joints.

Resources

To begin the conversation about mobility devices, talk to your neurologist or rehabilitation specialist. You can also consult additional resources and experts to learn more about adaptive equipment with FA.

Examples include:

• the National Ataxia Foundation
• the Friedreich’s Ataxia Research Alliance
• the National Organization for Rare Disorders

Additionally, you can connect with others living with FA to discuss practical advice regarding mobility devices. One way is by joining a support group, such as the Friedreich’s Ataxia News Facebook group.

Ongoing education about adaptive equipment for FA is essential as your needs evolve. By tracking mobility changes and noting any potential issues with your devices, you can ensure that they continue to provide optimal comfort and safety as well as support your independence.