[Delbert69]

The past 6 months have been one giant ball of confusion looking for answers to my son's condition. Eventually he was diagnosed as Schizoaffective, which served only to narrow the field of illnesses but yielded few answers for a solution.

Reading the posts on this forum helps me gain a first person perspective, but it also tells me my hunch is true, that Schizoaffective is not well understood by mental health providers. In fact, it seems to more of a catch all phrase than anything specific. Kind of like trying to hit a moving target.

I find it absolutely shocking that so few resources are available to parents or patients. For one, the doctor patient ratio is so poor that most have a 2 to 3 month wait time for a first visit (at least in Austin, TX). You're therefore, forced to take the first opening available from anyone, anywhere and hope you get lucky and find a good doctor. Any port in a storm is not a good approach when you need real help now.

Online forums are few and far between and most are pretty sparse. At least this forum seems to have a fair amount of users. But in general any type of online help is nearly impossible to find at all. And obtaining information regarding local help such as attending a group meeting is basically nonexistant. On the off chance that a tiny bit of information is uncovered you want to follow that lead, but end up dissapointed with a notice that meetings are only held the 3rd Monday of each month. What? Really?

So it all defies logic to me. The doctors have more patients than they can possibly treat, but outside of their offices there is essentially zero help to be found.

Is the system really that broken?

[Almond Joy]

Originally Posted by Delbert69

The past 6 months have been one giant ball of confusion looking for answers to my son's condition. Eventually he was diagnosed as Schizoaffective, which served only to narrow the field of illnesses but yielded few answers for a solution.

Reading the posts on this forum helps me gain a first person perspective, but it also tells me my hunch is true, that Schizoaffective is not well understood by mental health providers. In fact, it seems to more of a catch all phrase than anything specific. Kind of like trying to hit a moving target.

I find it absolutely shocking that so few resources are available to parents or patients. For one, the doctor patient ratio is so poor that most have a 2 to 3 month wait time for a first visit (at least in Austin, TX). You're therefore, forced to take the first opening available from anyone, anywhere and hope you get lucky and find a good doctor. Any port in a storm is not a good approach when you need real help now.

Online forums are few and far between and most are pretty sparse. At least this forum seems to have a fair amount of users. But in general any type of online help is nearly impossible to find at all. And obtaining information regarding local help such as attending a group meeting is basically nonexistant. On the off chance that a tiny bit of information is uncovered you want to follow that lead, but end up dissapointed with a notice that meetings are only held the 3rd Monday of each month. What? Really?

So it all defies logic to me. The doctors have more patients than they can possibly treat, but outside of their offices there is essentially zero help to be found.

Is the system really that broken?

Yes the system is really that broken.

[EmptyReflection]

Hi, Delbert69.

I am one such diagnosed patient, and unfortunately, medical treatment is, in my observation, sparse and woefully inadequate. The few times I've bothered with psychiatrists, I was put on meds that didn't agree with me, and just left me with a new set of problems. There wasn't really any attempt to get to the root of the issue, or address the symptoms beyond throwing some pre-approved pills at it. This isn't the case for all such affected individuals, but it does highlight your point - if their quick-fix solution doesn't work, alternatives are difficult to come by. To be frank, I've given up on the mental healthcare system in Texas, because I think it's a joke.

I can tell you from first-hand experience that it is manageable, and there are ways of coping, whether the patient or the family member. It will never be easy, but it is doable.

[costello]

Hi Delbert: You're where I was 5 and a half years ago. I would say my 6 years of trying to understand this thing has only generated more questions and confusion. Anyone who tells you they have the answer is either deluded or out to sell you something.

I've grown to distrust most of the mental health system (or the "mental illness industry" as Ed Knight calls it). They have their pills to push because someone's making a lot of money. However, I don't have an alternative answer for you. I suspect that each sufferer will have to come to his or her own solution in his or her own way. Unfortunately we don't live in a culture that supports people behaving oddly while they work their way through a crisis. We can't just give people the time and space to process their experiences. We have to move in and "fix" people - in the quickest and cheapest way possible (in the short term). We want an answer and a solution NOW!

Currently I'm struggling with the idea of "mental illness" as "biological disease" (a "broken brain"). Frankly I'm not sold. I suspect we're medicalizing distress. How much of that distress is biochemical, how much psychological/emotional? Even proponents of the medical model acknowledge an emotional or stress component that sets off episodes.

Then how you define the problem determines what you do next. A medical condition calls for a different response than emotional distress or a spiritual crisis or a drug-induced psychosis. But sorting that out requires taking the time to get to the bottom of the sufferer's experience. If you start with the assumption that "hearing voices" (whatever that means) is a "symptom" of an "illness" which is incurable and progressive and the only treatment is a powerful tranquillizer, you're going to push the pill at the person.

If you're imagining that pill is going to fix your son, however, you're likely to be disappointed.

I wish I could tell you I'd found the answer for my son and myself. It's a journey, and it takes you expected places.

I think if I were in your shoes... what? I don't know. I'd try to talk to my son and really listen to the answers - even when they seem outlandish or hurtful. I would want to know how he perceives his experiences. I'd want to know if he's sleeping and eating. I'd want to know about any alcohol or drug abuse. I'd want to know about his stressors - money problems, relationship problems, work problems, school problems, etc. Where I went from there would depend on the answers probably, but don't underestimate the power of just listening without judgment or argument. People need to be heard - especially those overwhelmed by fear or anger or pain.

Good luck.

[WikidPissah]

Schizoaffective is a catch all, but I don't believe it to be as hopeless as it seems. Its just a label, one good enough to attach a disability and get resources your son otherwise wouldn't qualify for. ie: school help, trade management etc. I do take a "magic pill" that doesn't exactly cure all and is a bit sedating. I have gone off of it many times only to spiral out and get back on it. That's my cycle. I have found a therpist to be helpful, he has learned to read me well and that has slowed down the spirals. Talking has also helped me come to grips with my limitations and keeps one foot in reality. It isn't a perfect solution, but it has made things more stable in my life.

I am disgusted that there is such a waiting list for your son. Is there a mental health hospital that offers a partial hospital program he can attend for a couple weeks? This is support on a daily basis with med management and groups to help get you some resources and referrals, while still keeping him at home evenings. Its a good first line of treatment because unlike hospitalization you get more individualized treatment.

Best wishes to you and your son. I know how difficult it is, but please don't give up hope.

[porcupine2]

Since my diagnoses (and I've had several over the years) has finally come down to schizoaffective disorder, add a couple teaspoons of depression, agoraphobia and anxiety issues and then a 1/2 cup of bipolar. A psychiatrist is getting harder to find, as many now have specialties, just like in the medical world. Many focus on children and young adults - they are easier to find than adult based in my experience. What I would suggest in the meantime is to find a psychiatrist who has a PA who can prescribe medication etc temporarily until you can see the main doctor. And as long as you have a couple months yet until that appointment, I would make a couple more appointments with other doctors as well. Then you have the power to make a decision on who you want to work with. Yes, I've cancelled a lot of appointments that way, but at least I could consult with each doctor without having to wait every three months. Sometimes you do what you gotta do. Good luck to you.