Any success stories? Even small wins

Family
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My brother was diagnosed a couple of months ago and it is difficult to know what to hope for. I understand that this is a long term condition and I am coming to terms with the realization that his life/expectations/goals will likely be different than what they were before. I have read over and over that many people with sz lead fulfilling lives with meaningful relationships. I believe this is true, but I would like to hear any real life success stories out there about people who have seen their family members cope with their illness. I realize the term ā€œsuccess storyā€ is relative, and I would appreciate any examples of positive or encouraging outcomes, regardless of how outside the box of pre-sz expectations they fall. My hope for my brother is that he will have a fulfilling life, and I would like to hear about other people with sz who have achieved that.

I do not mean to be condescending to anyone with sz or any family members who would say ā€œof course they can have a fulfilling life.ā€ I would just like to hear your stories, because as we know the media and public perception of mental illness and sz especially is misinformed. I just want to better educate myself about possible outcomes and see the hope.

To those like me who have seen posts like this and may be discouraged by the lack of responseā€¦ letā€™s remember that people who are coping well and whose loved ones are doing well may not have a need to be in forums like this, so just because people donā€™t respond doesnā€™t mean there arenā€™t success stories out there.

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I consider my sz son a success story, feel free to read any of my posts, I have been here awhile, Ask any questions you might have and if I can answer it I will.

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Thank you, I appreciate your stories about your son and sisterā€¦ wish the best for both of them

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Olivia, I consider my sonā€™s situation to be quite good. He responded well to medication, takes his meds regularly, has no obvious positive symptoms, negative symptoms are there but appear mild so far. Heā€™s back in college and doing well, works part time, works out at the gym, and socializes with family and a few friends. I am truly grateful that heā€™s doing this well and pray daily that he continues to be stable. I hope that your loved one will continue to improve.

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I just had to say how happy I am to hear your son is doing well, always good to hear that. :slight_smile:

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Thank you for sharing, that is so encouraging!

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Hello Catherine, trying to figure out how to read your prior post. My son has never been officially diagnosed but has all the symptoms.
He is in a facility now for a brain injury and still experiencing paronia while on 5 mg of zyprexa morning and 7.5 at night along with 1250mg of depakot. Now they are increasing his zyprexa to 10 mg at night.
Have you had any experience with splitting the meds like this? Iā€™ve read it should be given once a day.

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I think if you click on the ā€˜categoriesā€™ tab at the top of the page and then ā€˜familyā€™ and look to your right on the page and you will see a whole line of ā€˜usersā€™ and if you seem my profile pictureā€”the tree branch against the skyā€¦those are topics I have either started myself or commented on and you can browse through there.

As for splitting meds, I have no experience with Zyprexa myself or with my son. but my son is on clozapine and depakote the clozapine is 125 mg twice a day and the depakote is 1000 mg twice a dayā€¦the clozapine is for his schizophrenia and the depakote is for an adult onset seizure disorder. He has been doing well for a few years now with minimal setbacks. It was a long road though, and the meds are no exact science, in the beginning we were switching drugs and dosages every few weeks it seemed. It was a roller coaster ride.

I was fortunate to have a doctor that treated my sonā€™s illness aggressively and had good communication with me and I with him, sometimes I would call daily with an update on behaviors, it was the only way the doctor knew how the meds were working because my son could not vocalize accurately what state of mind he was in at the time. I also kept notes, and got legal guardianship of adult son to bypass the HIPPA lawsā€¦there was no way I was going to leave my mentally impaired son in the hands of anybody without my oversight.

Today I am glad I did what I did but it was without a doubt a rough and rocky roadā€¦sorry if I expressed too much hereā€¦sometimes it just comes out like writing is therapeutic. My best to you and your son.

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@misty,

So nice to see you chime in. I think about how I felt to read your post about your son and the accidentā€¦and all I could think is that could be any one of us!

Hoping you have been able to get some rest while he has been in recovery. I also hope that his hospitalization and rehab has provided you some additional access to professionals that may help get him on track to recovery in that arena as well.

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I consider my son a success story too. He was diagnosed almost 4 years ago. It took him almost 3 years to be really reconciled to it but now he is on a regular depot injection, lives independently (he is still on Disability), shows no symptoms of sz in his day to day life and is trying to study and improve his situation till he can find a job. He doesnā€™t seem to have any breakthrough symptoms as long as heā€™s on meds. Heā€™s a lovely guy with a good sense of humour and intelligent. Iā€™m hoping he will get married too in the next few years.

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I wish I could say Iā€™ve gotton some rest but nothing is further from the truth. Itā€™s a nightmare. Iā€™m afraid to bring him home. If will I take care of him now. If that happened under my watch what else will happen and it breaks my heart.
Unfortunately, I havenā€™t found any help with professionals. They look at me like I have 2 heads when I voice my fears and concerns. Iā€™m beating myself up and feel like the worst mother because I simply canā€™t do it anymore. Iā€™m scared to death.
He wants to stop his meds now and hasnā€™t left the facility. He told me he was going to stop when he gets home. Someone please tell me what I am suppose to do. My heart is broken and I feel myself falling into depression which Iā€™ve never dealt with before.

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Dear Misty,

Iā€™m so sorry you are going through this. None of us know what to do.

My question is, is there an assisted living facility or other supportive place he could live, somewhere with supervision and companionship?

Do the doctors know he plans to stop taking his meds? I would ask for injectable anti-psychotics.

Do they know that his injuries were caused by severe psychosis? I donā€™t understand how they could send him out without assurance that he will not hurt himself, but I have seen my own family memberā€™s journey through the system and that is exactly what happened.

There is a chance that if you tell them he canā€™t come home that they will have to find a placement for him. Just explain that you cannot watch him 24/7, that he ran away and you could not get him to come home, that you do not feel you are able to meet his needs for safety and supervision. Also that he plans to stop taking medication.

Where we live, if we refuse to bring our family members home for issues of safety or that we do not feel they are well enough to be left alone, sometimes other placements are found. Sometimes people are discharged to the homeless shelter.

Is there a social worker assigned to your son? Talk to that person. Request a social worker if there isnā€™t one.

Find out whether your state laws Browse By State - Treatment Advocacy Center allow you to petition for court-ordered outpatient treatment. A state social worker or local crisis line might be able to help with this; they do (somewhat) in our state.

I am also in the position where something terrible happened ā€œduring my watch.ā€ Now there is court-ordered treatment and a treatment team; theyā€™re all great and itā€™s working for my family member to live at home, but I could not do it without the court and the team. I already proved I couldnā€™t.

As far as your own depression, counseling or medication or a combination of the two might help you. I hope you have the time and resources to seek care and help for yourself.

Everyone told me I did everything I could for my family member. Yes, and it didnā€™t work, truly heartbreaking.

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There are people on the forum who have refused a discharge plan to their homes.

It really can change the plan.

I never did it, but I didnā€™t have to when the authorities put treatment in place.

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Hereandhere has provided some great feedback. I am going to respond to your ā€œwhat should I doā€ question on a different postā€¦as I often have the same question, and do today in my own circumstances. Especially when their life is left in the balanceā€¦the risk is that great.

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Hi. There is hope! There is some measure of success, however you define it. I am very thankful that my 26 yr old son has been treated appropriately and med compliant (and drug free) for 3 1/2 years. That is success for us.

He was drugging (self medicating) and non-compliant on meds for about 18 months- living on his own due to dealing drugs. He finally had an ah-ha moment that there was more to life and asked for my help. I found a long term program ( 3 weeks hospital and 1 year outpatient- living in an assisted living situation). He complied and he has been out of the out patient program 2 years. Several assisted living situations ( some better than others) and now he lives with his sister and another sz friend ( 10 years older) that he met in one of the assisted living places.

I wish he was working or going to school. But he is fairly self sufficient- grocery shops, cleans, takes the bus, goes to own doctor appointment, takes his own meds (all without me as I live 2000 miles away).! It is a major step forward.

Success can be defined many ways- but the most is that I have my sweet loving son back. I enjoy being with him. He seems happy. He has found help, realizes he needs his meds, and has found an accepting support group in the NA community ( 50% of the sz also self medicate with drugs). He has friends and would describe his life as happy.

I still manage his money and talk through all the decisions he makes with him. I see him several times a year.

That is success for us. I hope that you find a place of peace and comfort for you both!

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Thanks for the update Olivia, your brother might be among the 25% that make a full recovery - fingers crossed that his first episode will be his only episode. Hope

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I think the 25% is those who have a single episode of psychosis and never have another one and recover without having to stay on meds, isnā€™t it? I think then there is another 50% who take meds and go on to different degrees of recovery. At least, thatā€™s what I understood about those stats.

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Really good question - Iā€™ve always thought in the 25% both are represented, those who stay on meds and those who are treated briefly for one psychotic episode. There are so many articles about the successful treatment of first time psychosis these days, that specific information should not be too hard to find.

The numbers from the Vermont mental hospital 10 and 30 year follow ups were:

10 years

10% are dead, mostly suicide
15% hospitalized
25% much improved with extensive supports
25% much improved
25% fully recovered

Same group at 30 years

15% dead, mostly suicide
10% hospitalized unimproved
15% improved but require extensive support network
35% much improved relatively independent
25% completely recovered

This is old information not new information.

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Those are very encouraging figures. Of course, the suicide rate is the very disturbing point. When my son said he ā€œdidnā€™t want to liveā€, I sent people round to him (I was abroad at the time) and later he said he was angry and embarrassed that I did so. He said he wasnā€™t ā€œreallyā€ going to kill himself because he knew it was wrong. I said I understood that he was angry with me but that I would not promise not to do it again because I want him to stick around and I canā€™t stand the idea of living without him. He may be keeping his thoughts to himself now, of course, but I think some of his thoughts were due to feeling hopeless and worthless to other people. I just make it clear to him regularly that he is very valuable to me. And my sisters (his aunts) always invite him to everything and value him too, so over time he is regaining his self-esteem, thank God.

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The figures bring me a lot of hope.

The uptick in suicides has been attributed to the ā€œlightening of the symptomsā€ that has been reported by some of the sufferers later in life. I donā€™t know if there are any hard numbers on it, some sources say that the new awareness of what has been happening most of their lives, can cause depression and lead to suicide.