Welcome to our independent living webpage. This area is designed particularly for patients and carers looking for information on products and mobility aids to help with daily living. It is important to remember that everybody’s needs are different; so what might work for one person, may not suit another. Nevertheless, we hope that this site will help to lighten the load in researching products/aids to help you or your loved ones, improve the quality of life.
PLEASE NOTE: WWGM does not endorse any commercial products or services. Therefore, mention of commercial productsor services on WWGM's web site, cannot be taken as an endorsement. Our GNE Myopathy patient/carer community, based on their own experiences and expertise, have recommended the products outlined below.
We wish to express our thanks to the patients from the GNE Myopathy support group for their input.
Companies make a variety of devices that are designed for people with different needs. It is recommended that patients consult an orthotist or physical therapist for suggestions on using a particular device.
Ankle-Foot Orthosis (AFO) or Braces
An AFO or brace is worn on the lower part of the leg to help control the ankle and foot. It holds your foot and ankle in a straightened position to improve your walking. It helps to compensate for weakness and rectify conditions such as ‘foot drop’ that causes difficulty in lifting the front part of your foot and toes.
Phat Braces (USA, Canada & Norway ONLY)
This company customizes braces.
These do not appear to restrict while walking or turning and or driving a car. The experience may differ from person to person. It is important to get the right shoes with these; one can wear them with sneakers/trainers and high tops (anything that comes up higher on the back of the heel).
The SAFO® is a revolutionary product that works by supporting the front of the leg down to the top of the foot, helping to lift the foot during walking. A comfortable and practical alternative to rigid traditional AFOs. A few of our patients have found a new sense of freedom in wearing these as it allows them to wear a wider range of footwear and walk without shoes.
This brace can be used during exercises and walking around the house. It can be worn over socks and best results are obtained with closed shoes.
It is quite comfortable and one can use it during driving. One patient who uses this is 5'8” tall and is able to walk. She wears size medium as it comes up higher on her leg and gives added balance when standing still. One can climb steps with handrails and low incline ramps with these braces. The downsides are: they do not fit in all shoes/sneakers and all shoes need removable insoles. The footplate cracks after six months, and one needs a cane or some assistance on steep inclines.
These have been found to be quite comfortable and it is easier to find shoes that fit these devices. However, some patients find that excessive use and activity can wear down the part of the shin where these AFOs are attached to the leg. For mild to moderate drop foot.
In general, the experience has not been good during negotiating stairs, and for driving with these devices. One reason suggested by a patient is the experience of feeling restrained when one attempts to push down on the pedal. Patients find it difficult to climb stairs and negotiate inclines, as these braces do not give enough support. On the other hand, some people have used these for many years. It does take some time to get one’s balance right as they can feel unsteady with them at first because of the "spring" it adds to one’s step. If you do not use a cane or walker, you may want to use one just while your gait adjusts to the new braces.
It gives good ankle support but does not give the 'push' to clear the ground as other AFO's do.
Some of these aids are highly useful in keeping people with GNE Myopathy mobile and as independent as possible for them to carry on their daily activities. Again, experience varies from one individual to another and one has to try out different ones to find which would be the best.
Many patients find using a walking stick helps them to walk safely. One patient finds a forearm crutch useful in walking on a level area. Another found a palm grip walking stick more useful. It gives full support to the palm, which helps in keeping hand and palm in alignment, eliminates pressure sores and does not slip while walking. The stick comes customized for either left or right hand. The forearm crutch gives extra support to the elbow.
These can be highly useful for some specific activities, such as getting from a car to a class, or office. The patient is able to sit on the seat if gets tired and can carry belongings in the basket. The rollator is wide enough to accommodate the wider gait associated with GNE Myopathy. This give added stability, balance and helps one to walk longer.
A patient uses this rollator to get around - she removed the back strap and pouch to make it as small as possible. It has brakes and a latch to be folded up and still stand which is an important feature.
One of our patient loves her three-wheeled walker as its compact, practical and easy to maneuver. It’s also great to travel with.
This walker helps patients with weak shoulders who find it difficult to use a rollator walker.
These can be highly useful for some specific activities, such as getting from a car to a class, or office. The patient is able to sit on the seat if gets tired Patients with different types of disability use wheelchairs quite extensively. Many people use these only for specific purpose, generally during travelling, sightseeing or shopping. Although, the wheelchairs can handle uneven path, it is difficult to use them on unsurfaced and rough roads. There are two types of wheel chairs, manual, and electric/battery powered. Generally, manual ones will require assistance for propulsion but many patients with GNE Myopathy do not have the muscle power to enable them to do this so rely on electric chairs instead.Some patients also use mobility scooters and other mobility vehicles in addition to or instead of wheelchairs.
A yoga belt has been found to be useful by a patient when she travels on planes or have to stay in a hotel. This helps to keep the knees together so they are not splaying out to touch other passengers. The yoga belt can also be useful to lift legs up if a hotel bed is higher than what one is used to.
The yoga belt can also be useful to lift legs up if a hotel bed is higher than what one is used to.
Many patientsuse a grabber or reacher to pick things up from the floorand from overhead.
This is an image of a patient riding a modified three-wheel bike who does need help to get on and off. It is from Workman in New York. It has an electric assist so if one gets tired of peddling the power assist can be used to go up hills. Toe cages have been added so the feet stay in place.
It is advisable to consult a physiotherapist for suggestions in choosing the appropriate devices. Professionals will be able to analyze your gait (walking) with and without different devices and choose one that gives you the best result. Gait analysis is only offered by a few places that specialize in motor neuron disorders. Here are some centers where gait analysis are researched or done:
The mission of GCMAS is to improve functional outcomes and quality of life for individuals with any movement disorder at any age.
European Gait analysis URL:http://www.esmac.org/
This is an informative blog site on gait analysis and lower limb biomechanics:http://wwrichard.net/blog/
If you have any recommendations or suggestion, please Contact us