Graybeard
Distinguished member
- Joined
- Sep 24, 2014
- Messages
- 440
- Reason
- PALS
- Diagnosis
- 12/2013
- Country
- US
- State
- Ca
- City
- Surf City
My only commercial (UC Irvine) ALS clinic day was a day before I was formally diagnosed with bulbar onset. It was about six specialties, one after another, and very little of it soaked in. Only one gave me a card with contact info.
After my EMG the next day, they set me up for bipap and a peg tube, and said to come back to see the neuro in two months. This was a week before Christmas, 2013, and when the whole bunch left for the holidays, their answering machines did not admit they would be gone for ten days. The two commercial visiting nurse outfits were worse than nothing following my peg tube operation. Meanwhile, a commercial hospice company was trying hard to sign me up for hospice through Mediscare.
Right after I had sent out my ALS letter to friends and family, a PALS widow in Seattle sent me email and in the conversation following, alerted me that all vets with ALS are classed as service connected disability, and to contact the PVA. I was a draftee in 1965-7, and had no reason to suspect I was eligible for VA care.
I was enrolled in VA within 3 weeks, and had my first PCP visit 3 weeks after that. What followed were dedicated appointments with so many disciplines I can't even count. The Nutrition group set me up with gravity bags so I finally could get adequate food, and begin to regain part of the 66 pounds I had lost to that point.
Yesterday was an example of the superior care at VA. It was my first palliative care visit, which was attended by RN, social worker, visiting doc from UCI, and the head doc. The session lasted about an hour and a half, and was concluded only after wifey, son and I had exhausted our questions. They are going to set up visits with psych, etc.
I wish you all had the level of care VA has given me, but the US "free market" profit oriented healthcare prevents that.
After my EMG the next day, they set me up for bipap and a peg tube, and said to come back to see the neuro in two months. This was a week before Christmas, 2013, and when the whole bunch left for the holidays, their answering machines did not admit they would be gone for ten days. The two commercial visiting nurse outfits were worse than nothing following my peg tube operation. Meanwhile, a commercial hospice company was trying hard to sign me up for hospice through Mediscare.
Right after I had sent out my ALS letter to friends and family, a PALS widow in Seattle sent me email and in the conversation following, alerted me that all vets with ALS are classed as service connected disability, and to contact the PVA. I was a draftee in 1965-7, and had no reason to suspect I was eligible for VA care.
I was enrolled in VA within 3 weeks, and had my first PCP visit 3 weeks after that. What followed were dedicated appointments with so many disciplines I can't even count. The Nutrition group set me up with gravity bags so I finally could get adequate food, and begin to regain part of the 66 pounds I had lost to that point.
Yesterday was an example of the superior care at VA. It was my first palliative care visit, which was attended by RN, social worker, visiting doc from UCI, and the head doc. The session lasted about an hour and a half, and was concluded only after wifey, son and I had exhausted our questions. They are going to set up visits with psych, etc.
I wish you all had the level of care VA has given me, but the US "free market" profit oriented healthcare prevents that.