Occupational therapy for Friedreich’s ataxia

Last updated Oct. 25, 2024, by Susie Strachan
Fact-checked by Inês Martins, PhD

Friedreich’s ataxia (FA) is a progressive disease that causes a progressive loss of muscle control. It can affect your coordination, strength, and movement.

Occupational therapy, along with FA treatment, can help you manage those symptoms to maintain your mobility, independence, and quality of life.

Whether you are living with FA or caring for a child who has it, an occupational therapist can teach you how to use adaptive equipment, guide you in strengthening exercises, and recommend home modifications to improve both safety and accessibility.

Benefits of occupational therapy for people with FA

The benefits of occupational therapy as part of your FA treatment include helping to counteract the effects of muscle weakness and fatigue.

It can help you address changes in mobility, coordination, and speech; continue to participate in leisure activities; learn how to use aids and assistive devices; and maintain energy levels.

FA occupational therapy can help you maintain or improve:

• mobility by working on your balance, coordination, and strength
• fine motor skills by teaching exercises for hand and finger coordination and muscle control
• energy by showing you modifications to your activities and other techniques to reduce fatigue.

Your occupational therapist should collaborate with other people on your FA care team to ensure your occupational therapy plan aligns with your overall FA medical management.

Mobility aids

An occupational therapist can help you decide which assistance devices are right for you based on your needs and preferences.

You might find at first that simpler mobility aids, such as a cane, are sufficient. But over time, as symptoms progress and your mobility is further affected, you may need more help getting around, which could include any of the following devices:

• Walkers are weight-bearing and help with stability and balance to reduce the risk of falls.
• Rollators have four wheels and often come with a seat for resting and a basket for carrying items.
• Mobility scooters are good for people who can still walk short distances but need help with longer distances.
• Wheelchairs, which can be considered for people with more severe mobility limitations, are manual or power, and driven by a joystick, head control, or computer controls.

Your occupational therapist can check that your wheelchair is properly padded and adjusted to accommodate your posture and other needs.

For instance, if you are using an orthotic brace for scoliosis, they can customize the placement of the seat cushions, backrest, and armrests. Proper positioning is important for supporting your spine, maintaining your overall mobility, and preventing discomfort and pressure sores.

Techniques and strategies

After doing an assessment of your physical abilities and discussing your goals for therapy, your occupational therapist will work with you to create a plan with your individual needs in mind.

They may teach you energy-saving techniques that can help with fatigue. Tips may include figuring out ways to break tasks into smaller steps and remembering to take regular breaks.

For students with FA, an occupational therapist might focus on supporting your school life, such as using:

• assistive technologies to take notes more easily
• ergonomic chairs or modified desks to ensure comfort and support posture
• apps or planners to help with scheduling assignments throughout the day and including break reminders.

If you have a job, an occupational therapist can assist with accommodations to help you maintain independence and productivity, and suggest ergonomic modifications to your workspace.

They can help make sure you are working in a way that protects your joints and muscles by assessing your posture, chair, desk, and the placement of tools (such as your computer or phone).

Your occupational therapist also may be able to speak with your employer about what makes a workplace more inclusive. Suggestions might include:

• flexible work schedules
• working remotely
• modified job duties
• specialized equipment (such as voice-to-text software)
• scheduled breaks to manage energy levels.

In the later stages of FA, an occupational therapist can support you with adjusting to further changes in muscle strength that significantly affect mobility and communication, which might include:

• teaching techniques for transferring safely, such as between your rollator and office chair
• working on exercises that support breathing control, which is important for speech
• finding other ways to communicate as speech becomes more difficult.

Assistive technologies

If speaking becomes difficult for you, augmentative and alternative communication devices can be a way to continue to express your thoughts and ideas and stay connected to your family, friends, and FA support groups.

Your occupational therapist can help you choose the right communication device, which can take some trial and error. The best option for your needs might change over time, and you may need more than one device.

Communication tools include:

• assistive keyboards with large keys
• devices that generate speech from text inputs
• eye-tracking systems
• switch-activated devices that can be controlled with your finger or chin.

Adapting your environment

An occupational therapist can identify the best way to make places like your home, school, and workplace safer and more accessible.

They may show you how to address challenges with self-care tasks like bathing, dressing, cooking, and eating.

Adaptive equipment may include:

• shower seats and transfer lifts to move you from a wheelchair into the shower or a toilet
• adaptive clothing with Velcro or magnetic closures, adequate for use over braces or other body aids or in a person seated in a wheelchair
• utensils with specialized grips and cups with large handles for eating.

Additionally, an occupational therapist might suggest home modifications, such as rearranging your living spaces to make it easier to navigate.

Other changes may include installing:

• grab bars and handrails in the bathroom
• handrails along stairs and hallways
• stair lift
• ramps
• walk-in or roll-in showers with seat and handheld showerhead
• nonslip flooring
• lever-style door handles.

If you use a wheelchair, adjustments including lowering light switches or replacing them with pull cords can improve accessibility. Wall sockets can be moved to waist height, and countertops and cupboards can be lowered.

Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.