Assistive Technology and Equipment for FSHD

 

An occupational therapist (OT) is a healthcare professional trained in rehabilitation who helps people learn how to do the activities of daily life.  People whose FSHD has progressed beyond mild can benefit by consulting with an OT about performing daily living activities at home and at work.  OT’s can help FSHD patients improve function, increase comfort and reduce stress, fatigue and risk of injury.  Home visits are essential - there is no substitute for having an OT observe the actual conditions of daily living and recommend ways of improving safety, efficiency, comfort and convenience.  Home visits also help caregivers find ways to improve comfort and efficiency and reduce their burden and risk.  A joint home visit by an OT and a physical therapist working together can be especially effective.

Some OT’s are experts on workplace ergonomics.  Many employers are willing to pay for an ergonomics consultation.  If an employee has a disability as defined by the Americans with Disabilities Act, the employer may be legally required to do so.  Simple and inexpensive modifications in the workplace can often improve the ability of someone with FSHD to perform efficiently, comfortably and safely.

Using a computer strains and fatigues the hands, wrists and arms of some people with FSHD.  Voice recognition software can reduce strain, conserve energy and increase efficiency.  The leading voice recognition software is Dragon NaturallySpeaking by Nuance.

As a person’s FSHD progresses, he may need to use assistive technology and equipment including wheelchairs, scooters, canes, walkers, lifters, reachers, ramps, electric beds and commode/shower chairs.  He may need to modify his home.  OT’s are experts in assistive technology and equipment.  A good durable medical equipment (DME) dealer will have an OT available to help clients choose the best equipment for their needs.  For people who use wheelchairs and scooters, an OT can provide invaluable advice about the most appropriate mobility device and about posture, positioning and seat cushions.  Attending disability products trade shows is an excellent way to see, try and compare equipment.  In choosing products, technology and equipment, it’s essential to get advice from sources that are independent from one’s health insurance company.

Some people’s FSHD progresses to the point where they begin to feel uncomfortable or unsafe driving.  At this point it is critical to have their driving evaluated by an adaptive driving expert.  Some hospitals have adaptive driving programs which are usually staffed by an OT who is also a certified driving instructor.  Evaluations are expensive and insurance usually doesn’t cover them.  But if driving is necessary to maintain employment, the rehabilitation agencies of some states may pay part or all of the cost of an evaluation, adaptive driving equipment and training.  An increasing variety of adaptive driving technology is available, from simple mechanical hand controls to sophisticated electronic controls.

For more information about occupational therapy, visit the website of the American Occupational Therapy Association.

The National Registry of Rehabilitation Technology Suppliers (NRRTS) is a professional organization of wheelchair dealers that provides training and credentialing.  Many of the most knowledgeable and experienced wheelchair dealers are credentialed by and registered with NRRTS. 

Several organizations sponsor disability products trade shows.  The largest is the Abilities Expo, which is held in several cities each year. .

Easter Seals offers useful information about accessibility, equipment and home modifications. 

To learn more about Dragon NaturallySpeaking voice recognition software, visit Nuance Communications.

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Links to publications on FSHD and assistive technology

 

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Health Information About Facioscapulohumeral Muscular Dystrophy (FSHD)

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The information on this website is provided for general informational and educational purposes only.  The FSH Society and this website do not provide medical advice or recommendations.  Licensed physicians and other medical professionals who are familiar with an individual’s specific health situation should be consulted for diagnosis and treatment of Facioscapulohumeral Muscular Dystrophy and any other medical conditions.  Neither the FSH Society nor any contributor to this website can be liable or responsible for any result derived from the use of this material.