It would be great to read some stories of the successes that have happened or are happening.
For me I can say that I had a two year period of my daughter having a great life by using Profrontal, a natural product that is simply 2 amino acids. I would like to see that again soon. She is 28 and does not recognize she is ill so it is going to be a journey. Thank you for anything you can share
It would be great to read some stories of the successes that have happened or are happening.
My son is now on invega and in the transition house. He will likely come home end of the week. He’s been exploring other options for housing and talking about getting a job. He communicates with me now and can have somewhat normal conversations as of yesterday.
My mid-30’s daughter, diagnosed for 1 year now, had almost complete remission of all symptoms during her 4th forced hospitalization and a month long injection. During that month, she got a job and had a normal, if not great, life. It taught me that success is possible.
She is now unmedicated, sees no doctors, but has a part time job (I found it for her by seeking employers who hire special needs adults) and lives alone in a trailer on the property (which is an improvement over no-work and waking us at night screaming in my home to her voices).
Although we haven’t beaten this awful disease, we have a working new normal. I ignore her weird comments, but spend time “talking”, I am over my resentment at having to pay for her existence as the alternatives are just not workable, she again tells me that she loves me, and we separate rather than argue when moods are volatile. She responds best to one simple communication at a time (like “open your door, I have your dinner”, not “what do you want for dinner” and “let’s go for a walk”, not “would you like to go out?”)
Life is so much better than it was one year ago. I still long for the “old” (before illness) her, but can see the “new” her and we both have adjusted.
Thanks for sharing , that is very interesting and good to know . I will do some research on it for my son who’s on abilify . It’s been over a year now and he is stable , still no insight but taking meds , hw is in college , he got an A in English which I was so pleased to hear as he could only cope with one class a semester. We get on much better as he doesn’t live with me . He lives 20 min away from me in a student dorm with other room mates . Was a struggle at first as he believed one of his room mates were trying to poison him and believed people were coming in his room . Was a complete scary experience for me and I’m sure frightening for him . we upped his meds and now he’s doing much better , he’s on 20 mg of Abilify. I’m always looking for A natural alternative . His probation is over next month and I’m just praying he will continue his meds as right now he’s only taking his meds because he’s on probation and he has to comply .
Since my daughter became ill, I have been sharing my story with friends and acquaintances for almost 2 years now and asking people for solutions they think might work. One friend (whom I haven’t seen in over 8 years) recently invited my daughter to come to their home/business for a change of environment (in another state). My daughter actually went (I was afraid she wouldn’t). She has her own trailer to live in on their property which also has 3 other buildings (2 for their business and one is their home). They pay her for her work (stuffing and addressing promotional mailings) which covers room and board and a bit of spending money. So far it is working. I have peace in my home, my daughter is away from my husband (whom she is VERY paranoid about), and although her odd behavior at times is aimed at other employees or customers, they haven’t sent her home yet. I consider this quite a success.
That’s really great. I’m so glad your daughter is doing this and you all have the family friends who gave her this role.
I think everybody has a different definition of success. For me I felt like my son and I shared success when the last drug he tried clozapine started to really work for him. It allowed him to speak coherently and to understand what i was saying and the 1000’s of voices he complained about went away. At about the same time I had several serious health conditions and I went on permanent disability allowing me to be at home with him 24/7. I saw a greater improvement in my son with me there all the time. Today we still live together and he still doesn’t work and doesn’t have a lot of self motivation, he sleeps long hours as he always has, but when he is up he is engaging, communicative, and very helpful around the house. He enjoys long walks and shopping with me and any other activity I plan for us. His hobbies are recycling, feeding the birds out back and collecting coins. He also likes music and television. He still gets confused sometimes on the order of how things are done (like with cooking) and is sometimes a little forgetful but he proclaims that he is happy. I believe him. I always gently nudge him to do more all the time but in a way he doesn’t really seem to realize he is being nudged. I view my son as a life long evolution, I feel he will continue to slowly evolve and progress as long as I am around and my hope is I will be able to leave him at a level of progress that is sustainable for him. I think this is a real possibility. It is slow and steady but very visible to me. He is 34.
My son’s on Abilify injections. He has no symptoms at all except lowish motivation (but he has some) for the last three years. He is going to start university in Autumn. He dropped out ten years ago but is going to try again. He is fairly lonely but has a couple of friends and can cope with social situations. He hopes to make more friends at uni and would like to get married.
I’m so glad to hear success stories. I’ve learned a lot from this forum, mostly about how to handle crises large and small. My son is in the state hospital on an NGRI after he assaulted me with a knife. He is doing VERY WELL with therapy and meds and I’m beginning to think he might have a life after hospitalization. His cognition and insight are better than they have ever been and he’s accepting full responsibility for what happened. I’m hopeful he will eventually qualify for transitional housing and be able to go to school (his desire).
I too don’t know what the future holds for us but I’m holding on to the hope that he will be “well” enough to get along in the world. The uplifting success stories are important to me.
I wrote the below paragraph today in a personal message, because I was asked what her delusions used to be like. I wish to share it on the forum as it is a success story:
My daughter still talks to voices when alone in her room. That is how we first saw the illness, she would be alone, talking softly. As the illness progressed, she got louder and more isolated, and paranoid of almost everyone. She stopped being able to work (got fired several times from jobs for arguing with bosses or employees). She used to call the police on me or my husband several times a month. Last year and the year before were the worst, with over 40 times the police came to our home. She got in physical fights with me twice. She told the police my husband was abusing her, and he was investigated by a detective because of that. She “heard” other people’s thoughts and would shout at people, strangers, about what they were thinking. She got kicked out of several stores when shopping with me when this happened. She got brought home by police, or they called me to get her because she was downtown yelling at buildings and people, nonsensical communication. She was arrested twice and from jail sent to the psych hospital. The talking to voices turned into yelling at them, sometimes all night long until she was hoarse from screaming at them. She picked at things on her face until her face bled. She stopped eating for the most part. She was delusional about the voices telling her people were bad, the delusions would sometimes focus on me, sometimes on her stepdad, sometimes on past employers, sometimes on a neighbor, it was unpredictable. The worst thing was that she was POSITIVE that all problems were caused by someone else, she could NOT see that anything could possibly be wrong with her. She stopped smiling, stopped talking on the phone, stopped showering, stopped changing clothes. She wore the same pair of boots daily for a year even though they were falling apart. And I’m sure I am leaving things out… The shot that worked (Haldol) was like an on/off switch. On Haldol the insanity stopped, off of it, everything started again. So when she was put on it again in December 2018, it was a miracle again, and she is continuing to take the shot… which is the absolute best …
Not sure it is a real success story because it’s not over yet- but my 23 year old son has been in the state hospital for almost two years, after he injured me with a knife during psychosis. He was able to get a Not Guilty by Reason of Insanity plea which enabled him to avoid prison. He is doing very well, meds are working (Olanzapine and two antidepressants), therapy is working (therapeutic mileu, CBT, individual and group therapies), his mind is maturing and he sounds and acts “normal” (no delusions, no negative symptoms). I visit him every week and I can honestly say that we have the best relationship we have had since he was about twelve. It is a pure delight to spend time with him and to watch him get better and better. And this is in the hospital in Washington state which has lost its accreditation (and $52 million a year from the government) and has had some hefty fines and major changes over the last five years. I keep a pretty close eye on him and his treatment and I can say that aside from the terrible food, he is getting good care. So, a success as far as I’m concerned.
Clozapine worked miracles for my grandson. He is back working fulltime and making friends. He hasn’t been hospitalized in almost 5 years
Latuda has been amazing for my husband. Since he was diagnosed as a teenager, he’s run the gamut from “over-medicated zombie” to completely unmedicated and symptomatic. His current cocktail is the only thing that’s let him feel “like a real human” (his words)
I hate how expensive Latuda is, but between insurance and an amazing copay card our psych got us, we’re managing okay. It’s so worth it for him to be able to smile the way he does. He laughs, he reads, he plays music. There’s still struggles but oh my gosh, they’re so far from where we were. Latuda really moved us out of the “crisis” phase for the most part.
Hi WAmac Good to hear that your son’s treatment has helped improve. Sorry I don’t quite have a successful story to discuss today. My son attacked my husband with a knife 2 years ago. My son had a long hospitalisation and is on maximum dose of clozapine + 100mg over the recommended dose. He has improved a lot but it is obvious that his illness is debilitating and the side effects of clozapine has been weight gain. However; I found an organisation that takes him out 4x a week doing what he use to enjoy which is fishing and getting outdoors, he has improved with this more than anything. But; I feel sick when I am with him because I am stressed thinking when will he attack next. Sometimes I have thought I can no longer be around him because of it as I feel I am going to get into a situation again.
I understand, I haven’t seen my son for 6 months. he gets violent and mad at his family. it’s so hard:(
My 20 year old daughter has Down syndrome. She was diagnosed schz a year or so ago due to a pattern of psychotic delusions coming on late in the day and staying into the late evening. She was on clozapine for a spell, which helped but left us concerned about longterm effects due to her size (she’s tiny) and her disability. It also seemed to take the spirit out of her.
We have some good news. After reading about the potential for inadequate B vitamins possibly causing psychosis, we added a high quality medical grade B complex supplement to her prepared food. She has anxiety about going to bed and sleep apnea, so we also started melatonin.
With those changes (stopping the antipsychotic, adding the B complex supplement and melatonin) the difference has been INCREDIBLE. Today she sat next to me on the couch (I’m dad), and we watched tv, talked and laughed. It’s been a long, long time since that happened. My wife and I feel like our we have our daughter back in the family, and it’s great.