Some of my fellow advocates and I formed a non-profit org/movement for families like ours. We’ve started by publicly sharing stories of what we go through. We’re also advocating for legislative change by supporting HR3717, the Helping Families in Mental Health Crisis Act.
Please check out our website at www.treatmentbeforetragedy.org. Join us because together we can make a difference.
Thank you Barbie! We are growing rapidly and people are hearing about us. Keep spreading the word!
Do you want negative stories or positive stories? It sounds like you want stories about how bad schizophrenia is. Maybe you want neutral stories. I have stories of both overcoming schizophrenia and stories of when I was not doing good and life was difficult. It’s ALWAYS difficult but I’ve had the good productive years and years where I was not functioning well. I can also get into my crack addiction in my twenties and how I got clean in 1990.
Nick, we want stories of all kinds. It seems the most common stories put out by Nami and Mental Health America ignore the fact that many don’t recover. There are families struggling all the time, and for many of us these stories aren’t relative at this moment. We do want stories of hope, though.
We want raw, honest stories. I know you’re doing well now, Nick, and that you’ve had struggles. We’ll take stories of truth, in whatever form that is. We mostly address those with treatment resistant forms of severe mental illness. But we also have hope, that with the right focus and treatment, even hard to treat folks will still have some form of recovery.
When lawmakers hear that all it takes is groups or good peer specialists for someone in deep psychosis to recovery, it leaves those who can’t out of the equation. You read the tragedies in the stories we’ve shared so far. We do want balance and hope.
Thanks for looking at our site.
OK nxant,I actually think I remember you from your screen name.
Thank you for this Nxant. I joined. We have been stuck in the “revolving door” with our 25-yr old son, and have had some near-tragedies ourselves.
I haven’t been here in some time. I switched to advocacy from support.
How you doing, Nick?
So glad you joined us! It will take many of us to change the status quo.
How are things with your son now?
Thank you! Since 2009, my son has had five hospital stays, the most recent this May. All for not being med compliant. He has been in jail three times, all three while he was psychotic. We have been muddling through meds, lawyers, hospitals, doctors.
He is finally on long acting injection (Invega Sustenna) and doing pretty good. We are still tweaking the dosage. Son is completely on board with the shot, he hates taking pills and I know he wants to get better. I must say, in addition to him doing well, it is a huge stress taken off my and hubby’s back by not having to fret about whether or not he has taken his pills.
How have you and your son been doing?
I was Coop on the old site btw.
I remember you as Coop! Glad to hear your son is doing well. Mine is on invega sustenna also. Self-medicating too much to know if it’s working. I hate that part.
Glad you joined Tb4T. I’m excited about how we’ll be able to help people. Right now our focus is in getting known. Eventually we’ll have more options to help families.
It’s such a hard battle. It’s a marathon, not a sprint, as they say!