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Vince, I'm sorry your clinic has such an ambivalent attitude towards you.

For my first 2 years I went to clinic every 3 months as I had relentless progression and needed input from the team. Now I go only if I need something.

My GP is very good but the best resource I have access to is this forum :)

At this stage, (I think) I know my body enough to tweak meds, if needed and to also know when to ask for help.
 
I should add that, even though I rarely see her, I have a good relationship w/ my Neuro and need only ask for a clinic appt and one is given. She is always happy to see me and genuinely interested as to how I'm doing.

BTW, we don't get long to edit our posts, do we?? 30 minutes, is it??
 
Hey Vince, at first I went to UVA. ALS clinic got dx went 2 more times only liked the dr never went back as I felt they were milking the va cash cow.
Saw bedlack once he asked if I wanted clinic there I said nope.
Asked me if I wanted to be in lunasin trail I said ok.
I telephone w/ bedlack every 3 mon. As my computer doesn't work well to do the tele thing.
Vince, I would think you could do lunasin trail w/ bedlack and a phone visit. That's what I get from him and as you know I am in WV. My nurse visits once a wk as I am on hospic so someone sees my digression and is able to help as needed.
My biggest resource has been from the start YOU ALL on this forum thanks so much. Love ya chally
 
Chally you can do the telephone visits because he is licensed with the VA. Believe me, I pushed really hard for the telemedicine visits but they flat out told me no. I wish everyone the best of luck with the Lunasin but I'm not doing it. It took me a long time after my peg surgery to get my appetite back and get my stomach back in order. I'll give my slot to someone who hasn't progressed as far as I have. Thank you Chally.

Vince
 
I haven't bothered with clinics for nearly two years.6 hour round trip and 4 hours at the clinic just wasn't worth it. But I have emergency numbers for the sleep physicians and can teleconference them with neuro when needed . The local hospital ot , physio, speechy and pal care nurse come out when needed, and the rest the local doc does with a home visit. However I live in a country type area where they're set up for that as many people would be too unwell to travel.

Unless you've had changes you need help with i didn't think they were worth it. That's just my opinion
 
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