Visiting physicians

Hello everyone, I was just thinking how helpful it would be if there could be a team of neurologists, respiratory therapists, etc. that can visit the PALS every time it becomes clinic time as it gets harder and harder to
move. I know some things are not doable but my mom is so scared to go out at all. It seems that the only new thing that occurs at the clinic is the breathing test.

>I was just thinking how helpful it would be if there could be a team of neurologists, respiratory therapists, etc. that can visit the PALS every time it becomes clinic time

that's how our clinic works

When my Krissy was still able to get around with assistance, our two clinic visits were 100 miles away. The VA put us up in a hotel to reduce her fatigue. Later, when she was immobile, the technical specialists, including a doctor, visited us in our home.

Emi, you don't have to keep going back to clinic. Just say no thanks if it's too hard, the weather's too cold or whatever.

Her BiPAP and other respiratory support should not depend on those brief tests anyway. The machine has a data card, you have eyes and ears as does she (plus she has the feeling of her breathing), and that's more data than you'll be collecting at clinic. Any other needed items can be arranged via Webcam/e-mail. And you don't need an "ALS clinic" to prescribe for your mom; any doc can. Some people here have primary care docs who make house calls, etc. in case of illness.

There was a feasibility study done on home visits and care in Fl through Dr Pulley at the University of Florida Jacksonville. There is also an ALS doctor connected with the VA (I think in NC) that is doing something similar. The State had funded the trial in Fl and though it was successful stopped the funding.

Here in Hershey, PA there is a student writing a thesis on how a system might work to offer both home care and specific ALS care through local neurology and pulmonology departments that are not specifically neuro muscular neurology centers. I had a long talk with her as I think this would be excellent for a lot of patients and have done some research into it.

I has been our experience that once the diagnosis is made, most any doctor can manage symptoms. An NP comes twice a month to see mom. One from her Family Doctor and one from Palliative Care. The Palliative Care NP is experienced with end of life care, vents, beddridden conditions and had been a lifesaver and a great resource...