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Hi - My mom has bulbar onset ALS. She presented with slurred speech and dysphagia. She had routine speech therapy for months without improvement; then vitalstim for months also without any significant improvement either. Believe vitalstim has more success with stroke patients (per the...

My mom had vitalstim for her dypshagia with her speech therapist. She probably had it for about 4-6 months. No improvement. That is what "stimulated" her therapist to doubt that she had had a stroke. Unfortunately, she was then diagnosed with bulbar onset ALS.

Anyone have any ideas how I can safely do mouth care with my mom? I have a suction machine that I use when I do her mouth care. I use a baby toothbrush and also toothettes (the spongy things on a stick) with some peroxi-mint solution. Suctioning the whole time. Mom has bulbar onset, on G/J...

My mom tried the scopolamine patch (applied every 3 days) but it did not seem to work. We tried it for 1-2 weeks with no real reduction in the excessive saliva. Her MD then ordered Robinul tablets (up to 1 mg. three times a day as needed) crushed up and put throug her G tube. This really...

Thanks Jimercat for the link. Helped to watch it. My mom has progressed with sudden respiratory distress. She is in the MICU. Will be trached today to tomorrow. Will be bringing her home on a vent. Did not know whether or not it would be helpful to use on a trach or not. Pat

cough assist Patsy or Al - Do you know of anyone using the cough assist? Is is something that can easily be used in the home by the caregiver? Is is really effective? Thanks, Pat

Thanks again Jimercat, I will investigate the cough assist when I am actually able to talk with her MD. I had seen info somewhere on in months ago and actually got a CD sent to me on it. However, did not know how effective it was. It helps to actually hear from someone who has hands-on...

jimercat I saw that you mentioned the cough assist on another thread. DO you have any experience with it? Does it work well? Who would benefit from it? THanks, Pat

Hey Steve My mom is 85 yr old with bulbar ALS and she just got a G/J tube put in about 2-3 months ago. We were first sent to a general surgery MD who recommended because of her age, etc. that it would be less invasive if she had it put in by Interventional Radiology under IV sedation. She...

I just had a thought about what is NOT going on at this clinic I am taking my mom to here in Gainesville. I just remembered that I was told that the neurologist was the MDA (?approved?) neurologist in this area. But I bet the neurology clinic there is NOT an MDA/ALS Clinic. And that is why...