Devices Currently Being Used by Persons with Gne Myopathy

The patients from our Gne-Myopathy support group on Facebook have listed the type of assistive devices they currently use.  These devices assist them in mobility, independence, and to maintain safety while maneuvering life's daily activities.We have summarized their experience, impression, and suggestions. It is possible that experience may vary from person to person using the same device. We want to graciously thank them for their input. This information could also be sourced at our website: gne-myopathy.org under the "Support Community" tab.

A number of companies (such as Ossur, Ottobock) make a variety of devices that are designed for people with different needs. There are also smaller companies which are able to customize some of the ready-made devices to suit individual needs.

 http://www.phatbraces.com/patients.phphttp://dynamicbracingsolutions.net/

Orthoses, Ankle Foot Orthoses (AFO’s), Braces

These equipment assist persons who have GNE-Myopathy with better stability, gait, balance, and help to lift up the toes.

Swedish AFO: These do not appear to restrict while walking or turning and or driving a car. There is a possibility that the experience may differ from people to people. It is important to get the right shoes with these. One can wear them with sketchers, trainers and converse, anything that comes up higher on the back of the heel. 
http://www.alimed.com/freedom-swedish-afo.html

Push Aequi Ankle Brace: This has been used during exercises and walking around the house. It can be worn over the socks and best results are obtained with closed shoes.

Toe Off Brace from Allard: It is quite comfortable and one can use it during driving. 
One of the 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 don't fit in all shoes/sneakers and all shoes need removable insoles. The foot plate cracks after six months, and one needs a cane or some assistance on steep inclines.

Ossur AFO Light: These have been found to be quite comfortable and it is easier to find shoes that fits these devices. 
http://www.ossur.com/.../ankle-foot-orthosis/afo-light

Walk-On: 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 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.
 http://www.ottobockus.com/.../solutio.../ankle-brace-walkon/

Boxia Ankle Brace: It is also being used by patients and generally has been found useful for walking. https://www.chaneco.co.uk/orthotic-product.asp?prodId=324&specialoffer

OttobockDyna Ankle: It gives support but does not give the 'push' to clear the ground as other AFO's do.  http://www.ottobock.com/cps/rde/xbcr/ob_com_en/646A147-GB-01-1102w.pdf

Canes, Crutches,Walkers, Rollators, and Wheel Chairs
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 vary from one individual to another, and one has to try out different ones to find out 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, 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. 

Rollators: 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 when tired and also can carry belongings in the basket. This rollator below is wide enough to accommodate the wider gait associated with GNE Myopathy. It gives added stability, balance, and helps one to safely walk longer. 

http://www.amazon.com/Cosco-Ability-Care-Traveler-Rollator/dp/B0008ENS98/ref=sr_1_cc_2?s=aps&ie=UTF8&qid=1431395663&sr=1-2-catcorr&keywords=cosco+travel+rollator

Wheelchair: These are used quite extensively by patients with different types of disability. 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 un-surfaced, and rough roads. There are two types of wheel chairs, manual, and electric/battery powered. Generally manual ones will require assistance for locomotion.

Lightweight and can be dismantled and fitted in a car. 
http://www.spinlife.com/Invacare-At'm-Take-Along-Travel/-Portable-Power-Wheelchair/spec.cfm?productID=73503

http://kdsmartchair.com/

Additional Assistance
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.

It is advisable to consult a physio-therapist or suggestions in choosing the appropriate devices.  The scientific way is to analyse gait with and without different devices and choose one that gives you the best  result. Walking gait analysis is offered only in a few places that specializes in motor neuron disorders. 

Here are some centres and resources where gait analysis are being researched:

The Gait and Clinical Movement Analysis Society - The mission of GCMAS is to improve functional outcomes and quality of life for individuals with any movement disorder or at any age.

http://www.gcmas.org/about

European Gait analysis:
http://www.esmac.org/

This is a very informative blog site on gait analysis and lower limb bio mechanics.
http://wwrichard.net/blog/