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New member
Sep 27, 2017
I am a new member to this forum. I was diagnosed with a motor Neurone disease in July 2016 after complaining of weakness in my legs and arms that commenced in 2012. On top of that, I was stricken with Guillain-Barré syndrome in September 2016.

After 9 months of hospitals, rehab facilities and nursing homes I'm finally free and trying to regain as much independence as I can. I am confined to bed in a wheelchair as I do not as yet have use of my arms or my legs.

At this point, PT seems to be helping my legs regain some strength. OT, however, is having mixed results with my hands and arms. There are still therapies and devices I have not yet tried and will not give up until I have an opportunity to do so.

Which brings me to my questions:
One physical therapist suggested I try gait training combined with unweighting. Has anyone had success with that therapy?

Another question, in one rehab facility I used a mobile arm support, specifically the MAS-1 produced by JAECO orthopedic's. As I am left-handed it was fitted to my left arm. I used it for about 3 months until I left the rehab facility. I found it reasonably useful but not very user-friendly with respect to adjustments. I have found another one, the WREXX dynamic arm support. Has anyone had any experience with this device, and if so could you share with me.

These devices are expensive and as I understand it not covered by Medicare or other insurance. I would also like to know whether it is possible to demo such equipment.

Any help or insights would be most welcome.
Which other motor neuron disease do you have?
As for equipment demos, check with the TAP program in your county or MA's.
Thanks for your reply. I am still new learning all the acronyms. What exactly is TAP?
It is still unspecified at this time. I am scheduled for a follow-up appointment with my neurology team in 2 weeks. Hopefully I will know more then.
Technology Access Program. I linked to Massachusetts', but every state has one.
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