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    Knee-Ankle-Foot (KAFO) Orthotics

    Has anyone out there been prescribed these? If so, what is or has been your experience with them? Do they help or are they too cumbersome? I currently have AFOs, but the therapist says I should consider the KAFOs due to weakness/instability in my upper legs.
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    New PEG

    Last Thursday I had a PEG or G-tube inserted. Procedure went well and it looks okay but very painful, especially when I move in certain ways. It was inserted because my breathing has become so compromised; therefore it will be dormant until needed. I underwent a "twilight" anesthesia but I...
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    Diaphragm Pacer

    Hello all. I'm currently using non-invasive Trilogy and Cough Assist devices, and I'm scheduled for PEG surgery on August 9. At my PEG consult yeterday, the doctor asked me if I had heard of diaphragm pacing system that's sometimes considered as non-invasive devices become less effective. My...
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    PEG (Feeding system)

    I have now been advised to have a PEG port placed in my stomach since my breathing has taken a turn for the worse. I can still eat and drink, but I was told my FVC was now down to 50% so it's time to do this procedure before my breathing becomes even more compromised. The procedure would be done...
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    SAH Escrow Agent Options

    I have begun the SAH application process. One of the processes is to do find an escrow agent who will handle modification and construction reimbursements. Has anyone had success with a particular escrow agent? I understand banks, title companies and attorneys may do this, but I also want to...
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    Power Lift Chair

    Does anyone know if the VA reimburses for a power lift chair for ALS patients? Thank you in advance for your input !
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    A.C.E staus?

    I received a call from the Orlando VA regarding my ALS compensation claim that was filed bck on September 21, 2017. The person to whom I spoke said my case file was moving to ACE status. He said ACE stands for "Accepted Clinical Evidence". I have no idea what happens next. Does anyone have...
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    Strangely, I developed low-tension glaucoma in one of my eyes back in 2014. Subsequently, I was diagnosed with ALS on Sept. 1 of this year. Is there some speculation or fact that low tension (low pressure) glaucoma is a early indicator of ALS?
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    Neck Spasms and Twitching

    I have started having neck spasms occasionally during the day, along with occassional fasiculations. The spasms are, by far, worse than they are in my legs and forearms. Has anyone had the same neck spasms? Is it a precursor to developing speech and/or swallowing problems? :confused:
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    Ongoing Testing for MND

    Hello. I am new to this forum.I am male, age 66. In May 2014 while at our home in Ohio, I discovered I could not start going up a ladder with my left leg no matter how hard I tried. Prior to that, I sort of "pulled" a muscle in that leg simply slow-dancing with my wife :). Then I started having...