:) Hey where's Dalvin Been?

[BlueEyesOhio7]

Guys, I haven't seen Dalvin around. Anyone know where he's been and if he is ok?

Lynne

 

[skipper66]

Hi Blue Eyes,
Just sent Dalvin a message on facebook and he is doing ok he says. He is kind of down he said about the passing of our sweet Elaine. We are all. Plus, some of the posters on the DIHALS threads are pushing some of us to losing our patience. So, instead of posting a negative replay we are trying our best not too. I told him of your concern. Take care, Skipper

 

[dalvin]

I'm ok. Been reading the posts several times a day but the el has been pretty bad lately making it hard to see to type. Add to that my resp being weak I think I'm retaining some co2. Got an appointment tomorrow, going to ask them to increase the inhalation pressure, see if that helps. Very little energy the last few days, thinking it's all connected to the resp thing

 

[MaxEidswick]

>He is kind of down he said about the passing of our sweet Elaine. We are all.

Ditto that!

 

[Barbie]

Dalvin, do you take Neudexta for the EL? It really helps. hang in there brother, we all care about you!

 

[dalvin]

I have to be careful about taking meds as my body usually reacts opposite of the desired affect. The resp drugs all make my breathing worse, pains meds make the pain worse. I've gotten to the point that if I can manage without them I avoid them. Figure with my luck, the el meds will make it worse, if it's supposed to lengthen life mine will be shortened, etc. just something I've come to accept and live with. Does make it hard to write condolences as the sad things are what seems to be affected the most.

 

[pecas]

Dalvin, when everything else has stopped working, marijuana is often still helpful. I've personally witnessed this with two terminal family members, one of whom had stopped all palliative prescriptions because they just made things worse. I don't know if you can get ahold of any, but if you can, I would give it a go.

 

[dalvin]

Won't do any illegal drugs. Spent the last 7 years helping people recover from them. Wouldn't be a very good coach if I was involved

 

[Nikki J]

Sorry Dalvin. I hope your appointment brings a good plan! Understand about the adverse med reactions but maybe try otc dextromethorphan just to see if it helps the EL a little? As you know it is part of the neudexta. You would not need a prescription and it is pretty cheap. It helped my sister. I understand your concern about getting worse but maybe try it once and see? Let us know how the appointment goes

 

[pecas]

Understood, Dalvin. My father was an addict (clean for about two decades before he died, but still wrecked, regardless). I think it's criminal that marijuana isn't medically available nationally. Like I said, I've seen the proof with my own eyes, when everything else stopped working.

 

[dalvin]

I do appreciate the thought and I won't judge those here that decide to go that route. Thank you

 

[nebrhahe53]

Have to be careful with the marijuana in Texas. They still put you in jail here for it. Any amount is a felony. Just another example of Texas forward thinking.

 

[pecas]

They would have had to pull these folks out of hospice care to incarcerate them. I'm just exactly the type of contrarian personality that might enjoy that. What a media field day that would be.

 

[MaxEidswick]

>Just another example of Texas forward thinking.

 

[Schmidhogan]

Deborah Galinas, erstwhile director of the ALS clinic at CPMC, gave a lecture at a conference for fellow Drs on pot. She called it "the 21st century equivalent" to Bayer aspirin for neurological disorders. I take a puff almost every day and it helps.