Earnest Hill, PVA, was instrumental in helping us navigate the ALS landscape during the first, and subsequent months, of my husband’s diagnosis. From helping with disability paperwork to getting our first ALS clinic appointment scheduled, we leaned on Mr. Hill and he never led us astray.

My husband has a trach and is on a vent. We have 2 suction machines. One is set up for oral suctioning and the other for tracheal suctioning. He also takes guaifenesin to help expel the mucus.

I wish we could get a VOCSN to replace the individual machines we have. It would make it so much easier to take my husband out in the wheelchair!

The VA provides all of my husband’s meds. I know that some insurances cover a fair amount of the cost, plus the manufacturers often subsidize part of the cost. There are some other programs that assist with cost-sharing. The annual retail cost for the 3 R’s exceeds $300k/year.

My husband takes  the 3 r’s. Our neurologist thinks there may a cumulative effect based on the different mechanism for each medication. There is no way to measure the effectiveness, except to say that my husband still walks with a rollator, can talk, eat, and hasn’t loss his mental acuity six years after symptom onset.

My husband, who was diagnosed with ALS in 2022, is a very private person. I have posted about his progress, both positive and negative, in ALS support groups. I do not post his photo, and he belongs to the same groups but never posts anything. I respect his choice. He does reveal the status of his condition to visitors or those who phone him,… Read more

We have been fortunate that my husband is a veteran, and both of the VA locations that we deal with are very responsive and helpful.

My only advice would be to request everything you currently need, and will need in the future, now! Specifically request scripts for ALS meds, and ask to be included in any appropriate trials. Contact… Read more

Amanda:

I’d love to hear how your treatments are going! My husband has sporadic ALS, so Toferson doesn’t apply to his disease, but I’m always ready to sit in someone’s corner and root for them. Any success in treating ALS is a victory for all of us and the tireless researchers trying to find more effective treatments.

I saw this on Amazon for about $37K. That’s a bit rich for my blood but the chair is killer, and maybe the VA can get me something comparable for my husband.